Why Some Of The Press My Blog Received Really Hurt

It’s been 4 months since I had my ileostomy surgery. And it’s been a tough four months, mentally. I know I come across as being extremely confident with my stoma and I haven’t let it affect my day to day life, but in some cases, I feel it’s isolated me and there have been occasions where I just wish the whole thing hadn’t happened. These reasons aren’t really to do with my stoma either, but to do with how it’s effected my working environment and my relationships with people.

Before I had my surgery, I was working in media and spent my days in an office editing photos and dealing with press. It was fun – I’d always wanted to be a journalist and although I have written for a few publications, I hadn’t actually had any paid writing work. This job for me was a step up the ladder to achieving my goal.

When I was admitted into hospital, I lost my job. I’d had almost three weeks off of work due to illness and it had become a struggle to focus on anything else. I was also given 2 months recovery time after my op and when you’re working in media, most companies can’t afford that.

I didn’t want to give up my dream after being on my way there for some time, so I set up this blog. All I wanted to do was write. At first, this writing started off as therapy. I didn’t want to attend the support groups offered to me because I didn’t want to speak about it verbally. I have trouble doing that. I end up breaking down every time I talk about it. I’m not sure why I feel different when writing, maybe it’s because I’m given time to think about what I’m going to write instead of spitting out how I feel without a second thought.

My blog started getting bigger and bigger in such a short space of time. The media picked it up and wrote about it, and more and more articles started coming out – all over the world – in just one week.

I thought this would be great for my blog. I thought it would be great for others going through the same thing, it would show others that it doesn’t have to be a stigmatized subject. That it was just real life.

My blog was real, it was me. It was full of honesty. It was open, I had this aim to talk about every single thing people may fear. The things people may find hard to come to terms with.

But, to be honest with you, I feel the media exploited what I perceived to be a great thing.

They took this life altering thing that had happened to me and turned it into something seedy. Something the opposite of what I intended to do with my blog. They took my posts about sex, and the photos I’d posted of my continuous recovery, and one photo of myself wearing a bikini. The bikini that as I’d explained in a previous blog post, was worn to help me. I’d always struggled with my weight, and last year, I bought the bikini. The first bikini I’d ever worn. It sounds silly, but it was a big deal for me. It was the first step to me gaining some body confidence. And I was determined to not fall back into that lonely place of self destruction by wearing this thing that held those memories of confidence, so early on in my recovery.

Instead of talking about the recovery, why I’d chosen to write about these things, and why I was posting the pictures – they sexualised it, completed with a side of vanity and an added extra of stigma. “Selfies, Sex and Bikinis!” they said. Get over it, you may say. At least you got some recognition! But no.. that’s not how I feel at all. I felt hurt by these headlines. I didn’t agree with them at all. I wasn’t just “taking selfies” – I was documenting my recovery. Creating a time line of blog post photos to look back on, to see my progression. I wasn’t just “having sex” – I was writing about intimacy. I was writing about still being able to feel sexually attractive within myself. I was writing for those people that had gone through the same ordeal, that were struggling to find the confidence to regain some sort of sexual relationship with their partners, and those that were too scared to start dating again. I was writing to tell people that a life saving thing was beautiful, and was not something to be embarrassed or ashamed of.

The articles published were aimed at creating a “shock” reaction. They were screaming “look what she’s doing! Even though she’s got this!” Which of course created a whole heap of controversial comments, telling me to put my body away, that the thought of anything sexual with somebody with a bag was “disgusting”.

They created everything my blog wasn’t. They wrote in a sense that they couldn’t believe the things I was doing – because I had something different. I hate that. The whole point of my blog was to show I wasn’t any different. It was to show that my ileostomy bag did not have to change my life. It didn’t have to control me and it didn’t have to define me.

Some writers even took it upon themselves to question my blog pieces. Asking their audiences: “What do you think of her blog? Do you think she’s taking it too far?”

Well, to those writers who feel the need to question how I live my life, I think my blog is a great way to regain my strength and confidence. If doing normal things like any other person in this world is “taking it too far” I question your need for responses to make up your own mind. I question your integrity and I question your own confidence. Perhaps you could take some tips from my blog.

Hey, I know you’ve got a job to do, and I know that sex and “shock” sells. But just put yourself in my position for one moment, and imagine if you felt what you believed to be your good intentions were completely demoralised. My blogs about sexual relationships and feeling confident with your ostomy bag showing was taken completely out of context and therefore turned into “Hey! Can you believe she’s still having sex?!” as if I was invisible from the waist down or something! It also led people to believe I was posting about being sexually active with a number of people, forgetting to mention I was in a two year relationship – leading to a number of hideous comments about my parents being ashamed of me.

I loved my little blog before all of these articles. Before they (didn’t) take the time to research into my life before they wrote about it – telling their readers I was a student with a colostomy bag for life. Telling them that in order to live I had to “tape a bag onto my stomach which covered a hole that releases waste”.

In actual fact, I run my blog for a living. I left my studies 2 years ago. And I have an ileostomy bag – which is technically reversable. And I do NOT tape a bag to my stomach nor have a hole in my abdomen. It is merely a small part of my small intestine which is bought out of my stomach in order for me to go to the toilet. I change my bag twice daily and it is stuck on with a hole cut around the stoma to fit on nicely. It is not as dramatic nor as disgusting as you attempted to make it out to be.

It upset me that some of these media outlets felt they were raising awareness. When really, they were scaring more people into not talking about it. They made it sound gruesome, seedy and shocking. When it shouldn’t be like that. It should be celebrated. After all, it’s given me life. And isn’t that something to be praised? Isn’t that something beautiful?

There were of course some great articles that really described what my blog spoke for. And I can’t thank you enough for that.

But to the writers that took it upon themselves to not even contact me for the facts before writing these un-educated pieces, I hope a few hundred comments about how disgusting a life saving thing is was worth it for you. I hope you know that you nearly took away the meaning of my blog from me.

But, onwards and upwards after this post. I just needed to get it out because I’ve been feeling pretty down the past couple of weeks.

I know that my blog has meaning and I know that if it’s even helping one person, it’s worth it for me. It’s helped me, anyhow.

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6 Men Respond To The Question: How would you feel about being with somebody with an Ostomy Bag?

I recently had a few comments on a blog post I’d published, regarding having sex whilst topless – well, having sex at all – when you have a stoma. These comments upset me. I don’t mean personally, they did not offend me, I genuinely just felt upset that they could feel like that about themselves. I really wanted to write about these comments. I feel like it should be talked about, in order to help end the stigma that is still around it. I don’t want to patronize or enforce my opinion in any way, I merely just want to tell you what I want you to know. You don’t have to act upon it, I just hope that maybe you can look at yourself in a different light and feel good about yourself. So, to the people who feel like this, this post is for you.

“There is no way I will have sex again, I have a stoma – it’s ugly!”

For the first few weeks, after ostomy surgery I felt how you feel. It was a horrible time feeling unattractive, because of something I couldn’t control. It was hard to accept what had happened and acknowledge the fact that maybe it didn’t me ugly. It took me time, but eventually, with the help of my partner, I began coming round to the fact that it hadn’t changed the person I was – if anything, it had impacted me and helped me to become a better person. It didn’t change me physically either, I still had the same hair, the same face, the same body (okay maybe I’m a little heavier now) – it was just an addition. And I guess I’ve trained myself into thinking that way.

But I know that when I didn’t think that way, it was hard. Which is why I feel upset. I feel upset because I couldn’t imagine still feeling that way. It was strenuous enough the first few weeks, so to go months, years even, feeling that way – I find absolutely heartbreaking. It’s heartbreaking because you’ve been given something out of your control. Something that is different, something that can effect you mentally, physically and emotionally. It seems unfair, right? And it’s up to you as to when you feel ready to deal with it. No body can force you to feel okay with your body. It takes time and it takes strength.

So maybe, remember the positives in the situation. Remember that it saved your life, that it has enabled you to live an active lifestyle. Enjoy that. Enjoy that you’ve been given a second chance. Don’t take it as two steps back. Don’t let it to stop you from living life to the fullest.

I don’t think a stoma makes you any less attractive personally. Because a stoma does not effect your beauty. If anything, it makes you more beautiful. It gives you a story to tell. It shows the what strength you have, the fight you have in you. It does not effect your personality. It does not change you. It does not make you any different from the person you were before. If somebody thinks of you as any less than who and what you are, they’re not worth it. If somebody can’t look past something and see it for the life saving thing that it is – they’re not worth it. And if somebody is going to judge you on something completely out of your control, that has been a struggle to embrace with confidence, then they really, really are not worth it.
You may not want to take advice from me. I get that. But what about from a man? From people that are willing to tell you how they feel? Well, I asked a number of men how they would feel about being with somebody with an ostomy. And these are their responses…

It wouldn’t bother me at all. I see the person – the personality above all else

I am curious about it, and would be asking questions like a daft lad! As for attraction or anything intimate though, as I say, no problem for me

“Definitely wouldn’t bother me …. you see a person first then if intimacy is going to happen no disability will make any difference

Wouldn’t stop me being intimate with her in anyway at all

It wouldn’t bother me one bit in the slightest.

“A real man would accept it as part of you  – not something to fear”

So, just know there are people out there who can promise you, you are still absolutely beautiful. I hope one day you can regain that thought.

I got to spend valentines day with my boyfriend!

“There is no way I will have sex, I have a stoma – It’s UGLY”

I recently had a few comments on a blog post I’d published, regarding having sex whilst topless – well, having sex at all – when you have a stoma. These comments upset me. I don’t mean personally, they did not offend me, I genuinely just felt upset that they could feel like that about themselves. I really wanted to write about these comments. I feel like it should be talked about, in order to help end the stigma that is still around it. I don’t want to patronize or enforce my opinion in any way, I merely just want to tell you what I want you to know. You don’t have to act upon it, I just hope that maybe you can look at yourself in a different light and feel good about yourself. So, to the people who feel like this, this post is for you.

“There is no way I will have sex again, I have a stoma – it’s ugly!”

For the first few weeks, after ostomy surgery I felt how you feel. It was a horrible time feeling unattractive, because of something I couldn’t control. It was hard to accept what had happened and acknowledge the fact that maybe it didn’t me ugly. It took me time, but eventually, with the help of my partner, I began coming round to the fact that it hadn’t changed the person I was – if anything, it had impacted me and helped me to become a better person. It didn’t change me physically either, I still had the same hair, the same face, the same body (okay maybe I’m a little heavier now) – it was just an addition. And I guess I’ve trained myself into thinking that way.

But I know that when I didn’t think that way, it was hard. Which is why I feel upset. I feel upset because I couldn’t imagine still feeling that way. It was strenuous enough the first few weeks, so to go months, years even, feeling that way – I find absolutely heartbreaking. It’s heartbreaking because you’ve been given something out of your control. Something that is different, something that can effect you mentally, physically and emotionally. It seems unfair, right? And it’s up to you as to when you feel ready to deal with it. No body can force you to feel okay with your body. It takes time and it takes strength.

So maybe, remember the positives in the situation. Remember that it saved your life, that it has enabled you to live an active lifestyle. Enjoy that. Enjoy that you’ve been given a second chance. Don’t take it as two steps back. Don’t let it to stop you from living life to the fullest.

I don’t think a stoma makes you any less attractive personally. Because a stoma does not effect your beauty. If anything, it makes you more beautiful. It gives you a story to tell. It shows the what strength you have, the fight you have in you. It does not effect your personality. It does not change you. It does not make you any different from the person you were before. If somebody thinks of you as any less than who and what you are, they’re not worth it. If somebody can’t look past something and see it for the life saving thing that it is – they’re not worth it. And if somebody is going to judge you on something completely out of your control, that has been a struggle to embrace with confidence, then they really, really are not worth it.
You may not want to take advice from me. I get that. But what about from a man? From people that are willing to tell you how they feel? Well, I asked a number of men how they would feel having sex with somebody with an ostomy. And these are their responses…

It wouldn’t bother me at all. I see the person – the personality above all else

I am curious about it, and would be asking questions like a daft lad! As for attraction or anything intimate though, as I say, no problem for me

“Definitely wouldn’t bother me …. you see a person first then if intimacy is going to happen no disability will make any difference
Wouldn’t stop me being intimate with her in anyway at all

It wouldn’t bother me one bit in the slightest.

So, just know there are people out there who can promise you, you are still absolutely beautiful. I hope one day you can regain that thought.

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10 Things We Should Learn To Appreciate Before We Grow Old

This blog post is a little different to the things I normally write but I thought it was something important for us all. I think it’s important that we acknowledge these ten points and ask ourselves the question – are we appreciating enough?

1. Family – Family are always there for you no matter what. Whether blood related or not. In some cases, the people you class as family aren’t even biologically connected to you. But they are the people you go to when you’re in a time of need. They’re the people that don’t judge you, that support you even when they don’t agree with your decision. Always appreciate them, always return the love, don’t take them for granted.

2. Friends – As you’ll grow older, you’ll find that the friendship group you built in school is gradually becoming smaller and smaller. Eventually, you’ll be able to count your true friends on one hand. They’re the people that have stuck around no matter how you’ve spoken to them at one point, no matter what partner you ended up with that maybe they disliked from the beginning. They’re the people that don’t tell you “i told you so” when you’ve had your heart broken, but become a shoulder to lean on. Always remember that they’ve been there through thick and thin – don’t be too quick to disappear into a new crowd of people.

3. Love – love is shown in a number of different ways. Love is something that they say conquers all, but can make you feel about 2cm small at the same time. Love is the emotion that brings out your best and your worst side. It is the thing that helps you find yourself, whether that be through a positive or negative journey. Love is the thing that gives you strength and courage to make hard decisions, whilst giving you the most unforgettable memories. Always, always love. No matter what anyone says. No matter who or what it is you love. Experience it, and go after what you want. Don’t grow to regret not taking the risk.

4. Experiences – whether good or bad, experiences are the things that end up in the family photo album. That make you laugh or cry. That can fill you with a hundred emotions. Experiences are great stories that you live to tell. Appreciate every experience you stumble upon, now matter how you got there.

5. Freedom – growing up is a learning experience. You’re free to do as you please to find out what it is you want to spend the rest of your life doing. Don’t take your freedom for granted. And don’t spend that time doing something that doesn’t make you happy. Fulfill every aspiration you aim for.

6. Opportunity – don’t ever disregard an opportunity for someone else’s happiness. If it’s what you want, go for it. Stop thinking about others for a second and focus on where these opportunities can take you and if they can enhance your lifestyle and happiness. Never say no to an opportunity – because you never know where it’ll take you.

7. Health – don’t take your health for granted. Live an active, healthy life style. Treating your body right will enhance your way of life. It will leave you feeling content in your body. Feeling good in yourself will change your way of life. Being alert and fresh increases great mind stimulation.

8. Food – don’t spend your life saying “I can’t eat that, I need to lose weight”. You only live once! Don’t deprive yourself of foods you crave. A little something more calorific doesn’t hurt once in a while. Plus, the only person you need to impress is yourself! Who are you eating for?

9. Relationships – appreciate the person that makes you happy, and return the favour. Treat them how you wish to be treated. But also, don’t spend your life being miserable in a relationship that doesn’t make you feel complete. I saw a great quote the other day that said: “If you’re spending your days crying when in a relationship, ask yourself, am I dating a human or an onion?”

10. Yourself –  This is the most important factor of all. You’re living your life in your body. You are you, and there’s no changing that. Don’t spend your days focusing on the flaws that are invisible to everyone else. Don’t compare yourself to others. Just be you. Be accepting. Grow old knowing you loved every part of you that you possibly could. What are you gaining from avoiding that?

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Amazing News For My Blog!

Last Thursday I travelled up to my blog’s sponsor SecuriCare Medical to pitch them an idea I had been really excited about for a couple of months.

It actually all came about whilst I was away with a friend. We were up all night talking about the bucket list I’d created for this year, when we came up with this idea to act on just one of those things. But, it is not JUST one of those things. We are taking this one aim, and making it into something we hope to be absolutely beautiful.

The only issue was, we couldn’t do it on our own. We needed more support.

So, we called the Digital Brand Manager at SecuriCare who absolutely loved the idea. She invited us for a meeting with the head of the company, amongst 3 other people in the industry.

Alongside this, a huge charity will be supporting this project.

So, last week was the big meeting, as to whether or not this could turn into more than just an idea. After an hour and a half spent in the conference room, giving a presentation and answering questions, we left feeling positive. But we hadn’t been given an answer yet. So of course, we have been feeling a little nervous the passed few days.

BUT, today we received the call to tell us we’d been given the go ahead on our idea and had the companies full support!

This project will is looking to be released over the next couple of months, and we are hoping you will all love it. I’d love to reveal a little more, but I don’t want to ruin any surprise!

So, please keep an eye out over the next couple of months, for more updates on this project. I can’t wait to see what you think!

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My 2015 Bucket List: https://morethanyourbag.com/2015/03/18/the-2015-bucket-list-9-things-id-like-to-do-with-my-ileostomy-bag-2/ 

10 Things You Need To Know About IBD

It’s World IBD Day today, and I thought it would be great for others to gain an understanding of what we are trying to raise awareness of today. There are plenty of reasons as to why you should care about World IBD Day. But these 10, could just be the reasons that lead you to saving somebody’s life, lifestyle or mentality. These are the reasons I feel are most important to those that aren’t completely educated on what a life with IBD is like.

Please take in the 10 points below, the points that tell you things you need to know, and how we can help people suffering. Just think about them. Think about yourself or a family member being a sufferer, put yourself in these vulnerable positions. Because it can happen to anyone.

1. You could be at risk of IBD. Anyone can develop IBD – and at least 261,000 people are affected by Ulcerative Colitis (146,000) and Crohn’s Disease (115,000) in the UK – Although recently published data suggest that this could be as many as 620,000.

2. Your age doesn’t keep you safe. The illnesses can occur at any age, but often begin in younger people aged 10-40.

3. It is NOT a “sickness bug”. IBD is a chronic (long term) disease and if you have IBD you will probably have periods of good health (remission) and then relapses or ‘flare-ups’ when the symptoms get worse. It is more than just “sickness and diarrhea” IBD consists of symptoms such as extreme abdominal pain, diarrhea which in UC is frequently mixed with blood. Extreme tiredness, fatigue, weight loss, abscesses and fistulas, swollen joints, mouth ulcers, anemia, liver, skin and eye problems.

4. Ignoring the symptoms can risk a persons life. Educate yourself on IBD, because it could be your life at risk. Like me, your symptoms could be fobbed off as “women’s troubles”. Being ignored for so long left me hours from death with my large bowel nearly purfurating. I was admitted into theatre for emergency surgery and given an ileostomy. Had somebody recognised my illness sooner, it most likely would have been dealt with by using medication.

5. The hospital could become your second home. Most people dislike the hospital right? IBD causes a range of flare ups. Some so bad that leave you taking your holidays in the hospital. Whether you have IBD or an Ostomy, there are frequent problems that you face over your life time. Some that cannot be kept at bay with medication.

6. IBD is one of the biggest causes of loneliness. Having IBD can become very lonely and very mentally scarring, as people that don’t understand put it down to overreacting and laziness. You feel isolated within your own body. Scared that people will sigh in annoyance at your complaints. That they won’t believe you have a chronic illness. Which really hurts, because to have to live with an illness that nobody believes to be real can leave people such as myself, hours from death.

7. There is a stigma around IBD. By showing support on this day, World IBD Day, you are helping to end the stigma. YOU are enforcing a breakthrough to a subject that is so taboo. You are telling hundreds of thousands of people that it’s okay. Encouraging them to speak out. Engaging in the positivity that our society has to offer.

8. You could save someone, in a number of ways. By donating a small amount to this cause, you could be saving a life, a mental illness or a lifestyle. Small amounts add up a large amount. And these amounts are being spent on the correct resources to give people with IBD the right support, equipment for further research into a cure for the illness, or a personal grant for someone in need.

The right support means the right information. Where people are able to acknowledge and deal with their illness – before it gets too late.

9. IBD cost’s people their jobs. Gaining an understanding of IBD will show you that we can still work, and we can still earn a living. It is so easy to disregard somebodies work ability because of their illness. If you apply for a job, it means you want it. It means you believe you are fit for that job. So why should informing an employer of your illness lessen your chances of earning a living?

10. You CAN help. Opening up your eyes to a terrible illness that effects a great deal of the population will help others by giving them the strength to speak out. By gaining more of an understanding, you are accepting. You are acknowledging the fact that there is more than what meets the eye.

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Please watch below, my contribution to raising awareness on World IBD Day.

11 Thoughts Everyone Has When They Have An Ostomy

There’s a number of things that go through your head when you have an ostomy, some good, some bad… some you just never expected to have at all! I rounded up a few other ostomists to see which thoughts had most stood out to them since having an ostomy.

1. “Will my bag look big in this?” Every piece of clothing you try on is accompanied with the thought.. will my bag look big in this? I.e. does it look like I have a whoopie cushion hiding under this dress? Or am I good?

2. “Will my partner still find me attractive?” A lot of feelings hit you after ostomy surgery. You can begin questioning yourself, your appearance, how others may see you. But anyone that see’s you for anything but YOU is not worth it. And you know what, your partner, or the person you fall for, is probably more focused on the fact that they’re lucky enough to still have you there with them. 10982699_918516614872142_4787843721648344028_n

3. “Do I just do it? DO I EAT THE POPCORN?” If you don’t have an ostomy, you may not know that you are pretty much warned to stay away from popcorn. This is because it can cause a blockage in the stoma. BUT, you always want what you can’t have… and being told not to do something makes you want to do it ten times more!

4. “My bag better not fart in this exam!” Or any other important event for that matter.. especially when the room is filled with empty silences. Annoyingly, gas is one thing you have no control over… it happens when it wants to… you have to accept that!

5. “Do you think they can tell?” Going out in public amongst people who have no idea about your ostomy (and why should they) can be a little daunting, because you can be curious as to whether it is noticeable under the clothing you’re wearing. (But who cares if it is!)

6. “Do they really go like that?” You can become so accustomed to your ostomy bag that you literally forget how other people go to the toilet. I know when I see my boyfriend heading into the bathroom and sitting in there for half an hour I’m left thinking… what the hell is he doing?! It only takes a minute!

7. “I’ll never be able to go on a sun holiday again and wear a bikini!” You spend time planning all different kinds of holidays avoiding the ones where you may have to wear a bikini, until you remember… who am I trying to please? IMG_3181

8. “To bathe or not to bathe… Will my bag float away?” There’s always that wonder of whether you can still take an hour long bath with netflix by your side. It’s the best part of anyones week for sure. But can you still do it??? Will the bag stay stuck in hot water? The answer is yes. So get back in the tub!

A blog post of bathing with a stoma.

9. “I didn’t know I could produce that much wind!” Most mornings you awake with a helium balloon on your stomach – if you haven’t woken up 3 times already to empty it during the night. I guess it stops you sleeping in though! (Sometimes)

10. “Am I the only one?” Ostomy surgery can be very lonely, especially if you choose not to talk to anyone about it. And sometimes, this can be the case because you feel like you’re the only one dealing with it. But, there are many people out there in the same situation, and so to answer that thought – no, you are most definitely NOT aScreen Shot 2015-05-17 at 19.31.03lone.

11. “I’m never eating that again.” This seems to be quite a frequent thought. Although I never stick to it because I’m basically obese at heart. Food after ostomy surgery is all about trial and error. Some things work with your new digestive system… some things don’t. But some things just… really don’t.

And just one more, that a lot of people tend to think, no matter how long it takes them to think it…

“Thank you… you saved my life.”

The First Time I Looked At My Stoma

I’ve been writing my blog for almost 4 months now. And in this time I’ve talked about my feelings, my thoughts and my experiences. But one experience I’ve avoided talking about is the first time I actually looked at my stoma. There’s a number of reasons for this. But the main reason is that it was without a doubt the hardest, scariest, most confusing experience of my life – I couldn’t find a way to put it into words as to how I felt that day… until now.

I know that my blog pushes towards body confidence, embracing your body and appreciating the life you’re given. But it took me a short while to learn that this is what I needed to do. I’m only human, and as humans, we are prone to experiencing a number of emotions. And that day filled me with many.

It was three weeks into my recovery that I finally braved looking at my stoma. Before that time, I had asked my mum to help me change my ileostomy bag, whilst I guarded my face with a towel. I couldn’t bring myself to look at it. I’d accepted the fact that I had an ileostomy. I could look at my ileostomy bag itself. But I think this is because I saw the ileostomy bag as a guard – something that helped me ignore the fact that there was something underneath. Something before that time, I didn’t understand. And wasn’t prepared to start understanding. I’d moved home with my mum, and she became my prime carer. But in order to move back home with my boyfriend, I needed to gain my independence back. And the way to do this, was to begin changing my ileostomy myself… which also meant looking at my stoma.

I’d put it off for all this time… how was I going to do it? How was I going to gain the courage to face reality? What if I hated it? What if it made my hate myself? What if I broke down completely? So many questions filled my brain as I stopped my mum whilst she was getting prepared for my bag change, and said “I’m going to do it this time mum”. Without hesitation, she began telling me what I needed to do. She talked me through the preparation, and showed me how to cut a bag. I’m sure she was nervous as to how I may react. She stayed calm, and I tried to also. But inside my stomach was in knots. I know it may sound silly to you, but this was a huge thing for me. It was me gaining some form of independence back. It was me getting my life back on track.. my new life.

A thousand thoughts ran through my mind that day as I eased the ileostomy bag off of my stomach. Once cleaned up and fresh, I looked at my stoma in the mirror. Of course, I’d seen pictures on google images which yes.. scared the living hell out of me. But as I looked at the little pink looking thing sticking out of my stomach… I felt okay. I wish I could say I felt more, but at that point, for me, okay was just what I needed. Having been so upset in the hospital and being unable to look at my stomach for so long, I’d convinced myself all of the overwhelming feelings of negativity would come rushing back. I hadn’t prepared myself for the fact that I may actually feel okay.

It was such a relief. I’d finally done it. And you know what? It wasn’t that bad. It didn’t look like all of the scary, close up images I’d seen online. It was small, it was clean, it almost looked like a little rose bud. I think the thought of something is always much worse than the reality. All of the thoughts I had feared had eased. And you know.. I didn’t hate it. Once I’d seen it, I instantly began accepting it. Because I realised that without this little thing poking out of my belly, I wouldn’t be here. I wouldn’t be here to share this moment with my mum, the moment that we spent appreciating the second chance at life I’d been given. To me, it didn’t matter what had changed about my body that day. All that mattered was that I was still here. That I was still able to be with my family.

I’d love to write more, to go more in-depth on how I felt that day. But I think there’s some things that maybe I’d just like to keep in my head. All I can say, is that I was okay. And I think.. that’s okay for me.

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An Open Letter: To The People Telling Me “You Have An Ostomy Bag – Suck It Up!” 

Today, I have received numerous anonymous comments telling me that my blog posts annoy them, asking me what “makes me so special?” Telling me, “woe is me, you just have an ostomy bag, like hundreds of other people – suck it up!”

I wouldn’t normally justify these sorts of negative comments with a response. But I feel the need to write to these people, out of respect for the awareness I am trying to raise.

So to these anonymous people, this is my response to you:

To the people telling me to “suck up” the fact I have an ostomy bag,

I must firstly apologize for the fact you are obviously so deeply offended by my blog. The blog that has helped me deal with the indescribable amount of emotions that attempt to eat you up after ostomy surgery. The words I write aren’t even half able to explain how I feel inside. My blog is pretty much an open diary. I’m not a journalist. I’m not writing for thousands of people wanting to read news, gossip or any other genre. I write about my life. I don’t write to please people, I don’t write to spark controversy, I write for me. I write to raise awareness. What I write is real, it’s truth.

On 26th January 2015 I was rushed into hospital, in pain you couldn’t even imagine. After countless operations, scans and colonscopies, I was finally admitted to theatre for emergency surgery. After a four hour surgery for a stoma, I did nothing but scream in pain, shake in fear and cry myself to sleep. I couldn’t even look at my stomach. I cried every time somebody tried to talk to me about it. I lost my job, I struggled to keep my flat and I nearly lost me. It is an extremely hard time to talk about, even now the situation fills me with nothing but sadness.

The only thing that has kept me going these past few months is my blog. I am lucky to have a loving, supportive family, friends and a great boyfriend. But this blog is the only thing that has helped me deal mentally with what has happened. So it has hurt me that you feel the need to write to me such nasty comments. Would you be able to “suck up” something that could scar you mentally for the rest of your life? That does scar you physically?

Let me just ask you. If somebody’s family member had passed away, and they decided to write to deal with their grief – would you tell them to “suck it up, because hundreds of people die every day”? No. You would not. So why do you feel the need to do it to me?

And you know what, hundreds of people do have ostomy’s, you’re right. More, even. And a huge percentage of them deal with it privately. Another percentage of people do it privately because they feel too scared to speak out. Some people struggle to even deal with it at all. So what about them? How will they have the courage to speak out if they feel doing so will cause them a backlash of negativity. People are always saying “talk about it, it’ll make you feel better”, convincing us that “we’re not alone” – but how can we freely talk about it when we’re classed as attention seeking, and being told to “suck it up”?

Keeping my surgery a secret for the first few weeks, were the worst weeks of my life. I lived in fear of embarrassment, I felt ashamed of myself. The situation in itself was not only confusing, mentally draining and heart wrenching for me. It was the darkest place I feel I’ve ever been. It was an experience I wouldn’t wish on my worst enemy. What happened to me was emotionally, physically and mentally devastating. And I have every right to talk about it. To FEEL something about that.

Speaking out was the best thing I’ve ever decided to do. It has helped me come to terms with what has happened. It has helped me embrace my body for what it is. It has taught me to appreciate the life I am given. I’ve turned my life around in just four short months. Tell me, could you do the same? Did you stop to put yourself in my shoes before telling me I should just “suck it up”?

photo(13)I nearly lost my life, but my surgery saved me. It’s saved so many other people too, and for those people, the people that feel too scared to do so themselves, the people that want to learn, the people that want to understand – I write about it. I write about a huge part of my life that I haven’t let ruin my mindset. And theoretically, I have done nothing BUT suck it up since. I’ve sucked it up so much that I’m confident enough to wear a bikini in public, to go to places like Thorpe Park, to wear skin tight clothing an to abseil off the f***ing tallest building in the UK. And that’s what makes me special. The fact I haven’t let it absorb the life style I’ve always maintained.

So, to the people who took the time to send me these lovely anonymous messages: let this annoy you instead: I have a fantastic life now, and it’s all through the help of my blog. Suck that up.

Abseiling Off The TALLEST Sculpture In The UK… With An Ostomy Bag!

On Saturday 8th August 2015 I am going to be abseiling down the ArcelorMittal Orbit sculpture, which at 114.5 metres is the tallest sculpture in the United Kingdom – on behalf of my blog’s sponsors SecuriCare Medical – to raise money for Bowel Cancer UK.JM-Orbit-event-I

I will be abseiling down the iconic 262 foot tall London sculpture to help raise money, save lives and improve the quality of life for all those affected by bowel cancer. Please donate on our JustGiving page: https://www.justgiving.com/CliniMedSecuriCare/. We would love to raise as much as possible during the run up to the event!

arcelormittal-orbit

I am absolutely bricking it – but will be so proud to say I’ve done something to help raise even more awareness and money for such an amazing cause.

Thank you to all of those who donate over the next couple of months. Let’s hope the harness doesn’t burst my bag whilst I’m up there!…

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A Horrible Night Out. It’s Time To Be Honest With You..

It’s 1:30am and I’m in a taxi crying my eyes out after a night out with friends. Well, after somewhat an evening out. I’d planned to stay back at my friends, after the usual night out ended around 4am. But here I was, texting my boyfriend in a state, to meet me outside to give the taxi driver the money.

I’d had a bit to drink and so was a tad more emotional than I normally would have been. But some things got to me so badly last night that all I wanted to was leave, come home, crawl under my duvet and sob myself to sleep.

You see, last night, just like the last time I went out, I had more people approach me about my ileostomy bag. I know what you’re thinking. Well you publicly write about it, what do you expect? But it was different. It wasn’t people addressing my ostomy. Or my blog. The complete focus was on the difference in me. I have been quite confident in myself since the surgery, and I have learned to acknowledge the fact that everybody deals with things differently. But last night, I was sat down, and told by people I didn’t know, that “I shouldn’t let people bully me just because I’m different”. And that the people “judging” me aren’t worth it.

I of course stopped them right there and then and told them I would never let somebody bully me. That my ostomy bag saved me life. And whoever had a problem with it obviously had their own issues to deal with.

But, it also angered me. Whether it was meant in a nice way or not – could I not have just been left alone to enjoy my night? I’m sick and tired of going out in public places with people my age, to be patronized and questioned.

I need to be completely 100% honest with you. Please listen to me when I say this. I do not want anybody’s pity nor sympathy. The best thing anyone can do for me is carry on supporting me by reading and interacting with my blog. My ostomy bag does not define me and I refuse to be the subject of sympathy needed for other people to feel better about themselves. I am not looking for somebody to tell me that other people’s opinions don’t matter. Convincing themselves that any opinion other than my own is a negative one.

11141120_10205520050414033_6234827583001248290_nAfter this conversation ended, I dragged my friend outside with me to just take a breather. I didn’t want it to effect my night. Of course, talking about it with my friend helped. But I did get upset whilst doing so. It’s hard to talk about something that effects you so personally. It’s hard to keep a brave face 24/7 and act like it’s just water off a ducks back. Because it’s not. It’s hard. It’s really hard. What has happened to me could have been completely emotionally, mentally and physically traumatizing. For the first part anyhow. But it hasn’t been. Because I haven’t let it. But that doesn’t mean that I don’t feel low sometimes. That I don’t think about those nights on the ward, crying myself to sleep. Like remembering how much I despised myself at one point doesn’t leave me with panda eyes and a runny nose.

I spoke about all of this with my friend. Because I needed to. And I guess alcohol just gives you complete word vomit and everything you try to keep trapped in and concealed to create this false mask of positivity just disappears and you’re left stuck in this bubble of vulnerability. My friend was very understanding, of course. But even though we’re very close, everything I’d said came as a complete surprise to her. She’d always seen me so much stronger.

It felt like I’d had a little bit of a break through until somebody decided to spoil the moment. By butting in that at my age, I had no idea about life. She laughed at me, and shouted very publicly that “hundred’s of people have ostomy’s” that I should get over it, because “you have no idea what life’s about”.

Completely full of rage, I left the club. I couldn’t do it. I could not bring myself to justify this womans behaviour. Could she not see I was upset? Was she invited to listen in to our very personal conversation? Why did she feel the need to do that? And who the hell is she to tell me after being faced with death and making a positive out of an awful situation, that because I was young, I had no idea about life. I can’t even begin to comprehend her actions. I think it was absolutely disgusting. I am entitled my own emotions. I have every right to feel upset about something that at one point had such a huge effect on me. It should not be compared not dismissed because of my age. This woman was much older than me, and as I left, went on to talk about her life experiences. If she’d experiences awful thing herself then how can she judge others on what they do and do not know?

I would never compare my experience to someone else’s. Because as I’ve said before, everybody deals differently. No matter how many people have experienced the same. Everybody maintains a different mentality. It is not a competition. And your emotions are certainly not determined by the percentage of the population in the same boat as you.

Last night I lost faith in both the older and the younger generation of today. I hope to see more compassion in the world as time goes on. Because that is what life is about. Loving, listening, accepting, embracing, learning and understanding. Living life so sourly is such a waste of the time we’re given. And you never know how long we’re going to get.

What Do You Do When Your Ostomy Bag Blows Up In PUBLIC?

Although having an ostomy bag means you can essentially live a pain free, active lifestyle, there are still irritating little things than you are literally completely helplessly prone to. One of these things is gas. I know what you’re thinking – but surely you don’t get gas now you have an ileostomy bag?! Wrong. You still get gas, and unfortunately, unlike those without an ileostomy, you can’t release that gas into the air. Instead, you end up with a balloon attempting to take lift off from your stomach.

It’s not an issue when you’re at home. You can empty that bag or you can change it. But what about when you’re walking along in public, trying to cover that that prominent bulge that just so happened to appear over the last five minutes?

I was out the other day, getting the train into town after my driving theory test. I was wearing a jumpsuit, which wasn’t tight, but wasn’t especially baggy. I’d rushed to get ready that day and was only wearing normal underwear. Everyone was rushing for the train, so I was pretty cautious of people knocking into me. I guarded my stomach, and as I did, felt this whoopie cushion of a bag pressing against my hand. And because the belt of my playsuit was pushing down on my bag, it was making me look like I had a giant, wonky penis. I was literally there thinking “OH MY GOD WHAT IF PEOPLE THINK I HAVE BALLS”.

Luckily, I was wearing a jacket and could cover it up. But of course, me being me, I was wearing a broken jacket whilst carrying my bag, and wearing stupid shoes I couldn’t walk in, so pulling my jacket together whilst trying to focus on getting on the train surrounded by a bunch of people all fighting to get off the platform – it was kinda difficult to try cover said whoopie cushion.

I’m not sure if anyone noticed my gradually expanding stomach, or if they just chose to ignore it. But it led me to thinking about different ways I could prevent this from happening in the future. Of course, the best option is ostomy support pants. But they can be kinda pricey, and you have to wait around for delivery. Also, you’ve got to be sure to get them in the right size, for the best support.

I don’t actually use ostomy support pants. Instead, I use body shaping pants – from sainsburys! They’re £5, meaning you can get more for less! It would suck to own just one or two pairs, because what about when they both need washing?! You can also try on in store!… over your underwear.. obviously.

Sometimes for me, support10987464_956329911090812_4235087468872660141_n pants aren’t enough. And more than one pair of tights makes my legs look chubbier than they are. So… I devised my own thin support pants to go over the regular ones, giving the ultimate flat stomach, and perky bum! Even when my bags attempting to lift me off the ground.

How did I do this??? It’s simple! (I feel like I’m in an advert right now)

I simply found a load of old tights that have ladders in (I think I actually own about 2 pairs without ladders in) and cut off the legs! The material is so thin you can’t feel it’s there, and they also gives you no added bulk. Invisible, cheap support underwear. Sometimes I even wear two pairs!

Since my bag blowing up in public, I have followed this routine if I know it’s going to be a windy day… and no matter how big my bag gets, it’s flattened by the support gear! It’s also a good idea to have a trustworthy bag that can be flattened. The bag I use, a Sensura Mio, delivered by SecuriCare Medical, enables me to do this. I experience no discomfort with it no matter what I’m wearing!

So there, an easy, cheap and effective way to save you from the gas and also give you a fab figure. Even if you have one already!

What Happens When You Bathe With A Stoma?

In a previous blog post I spoke about my experiences showering with my ileostomy. Of course, we’re all only human and every human needs to wash – with or without an ostomy! But what about when you’re so tired and all you want to do is hide away in your bath tub with a glass (or bottle) of wine and your laptop on the side, ready for you to watch Ru Paul’s Drag Race? Or something else… but most likely Ru Paul.

I’d read up on bathing with an ileostomy, and some people had said the adhesive can wear out whilst in the water. Other’s had said it was fine. I decided to give it a go anyhow. I do shower without my ileostomy bag on, but bathing is slightly different. There was no way I was risking something happening whilst I was trying to relax!

I filled the bath up and prepared everything else I needed to change my bag after the bath. Just in case something did happen, I wanted to be prepared and not running around my like a headless chicken.

Once in the bath, I hesitated for a while before getting comfortable, positive that something was going to wrong. But minutes passed and all was still safely in tact. The ileostomy bag had decided to float up to the surface though, which is kind of amusing. And cheaper than those floating duck toys.

I wear an ostomy bag called thePhoto on 17-04-2015 at 18.09 Sensuri Mio, which is delivered by SecuriCare Medical. This bag did me proud, as even after bathing for over an hour, and countless episodes of Ru Paul’s Drag Race – it was still perfectly stuck to my skin!

It’s funny, how I still feel nervous to do such normal things. It’s been a while since my surgery but I’m still learning more and more on a daily basis. I’m still having to overcome things that perhaps others wouldn’t give a second thought about.

Things like bathing can be nerve racking. It sounds silly, I know. But knowing that you’re either going to overcome something you’ve been worried about doing, or risk having a bad experience that may put you off trying other things in the future, is overwhelming. It can either push you 2 steps forward or pull you 5 steps back.

But, if you’re in the same boat as me, I can assure you that it is absolutely FINE to bathe with your ostomy bag. It’s up to you whether you want to risk doing it without – personally I won’t be, as my stoma seems to have a mind of it’s own!

The Hardest Part Of My Recovery So Far

It’s funny really. There’s been so much I’ve spoken about on my blog, so many personal details, experiences, my most intimate moments and my most vulnerable. But nothing seemed as hard as filming this video did. I’m not sure if that’s because I find writing easy, or just because I’m able to think about what I’m going to say before I put pen to paper. Or keys to screen in this case…

Screen Shot 2015-04-29 at 14.36.48Filming is completely different. It’s capturing you as a whole image, making you embrace vulnerability. I found it hard to talk on camera. Every time I tried I felt it didn’t do justice for the message I was trying to send. Every time I attempted to speak about my experience I started to cry. It’s hard. It’s hard to actually speak to someone about what happened. And I think that’s because once words leave your mouth, they become real. You can’t take them back.

This video shows exactly what I wanted it too. It shows difference being embraced with happiness. It shows honesty, and it represents truth. It doesn’t have to be your truth, but it’s mine.

I hope you enjoy this video. Please don’t hesitate to comment, like – & share!

250,000 Blog Views And My Blog Went Nuts!

Wow! What a week. I can’t believe everything that’s happened! In just one week I’ve been in the Daily Mail, the Metro, The Mirror, I appeared on BBC Sussex Radio, there have been articles in Brazil, Belgium, Australia, Netherlands, Germany, Spain, USA, Indonesia, Taiwan, France, Japan… the list goes on! I’m going to be writing a piece for The Huffington Post next week, alongside appearing on an Australian radio show!

Absolute craziness!

Although… doesn’t it just go to show how taboo the subject is. Many of the headlines approached the fact I’d written about still having sex, still taking pictures, still wearing bikinis… as if going to the toilet in a different way meant I’d lost all life in me!

I’m glad word spread and so many people got involved in the story though. I can’t thank everyone enough for all of the amazing support and the positive attitude the articles have received! I just want to cry with happiness! The amount of awareness for ostomy and IBD that has been raised the past couple of days is phenomenal. I couldn’t be more proud. So thank you so so much for taking the time to read about the condition, my blog and my story! I hope it will encourage others to speak out and to enjoy life a little more, without the fear and the nerves that perhaps that perhaps once imprisoned them.

I have had so so many emails which I will be replying to over the next week, so please bare with me! But thank you for confiding in me, I feel truly honoured that people have taken the time to write and have trusted me with their story. Some of the messages have made me well up quite a bit… I’ll be one big emotional mess by the time I finish reading!

Thank you all so much. I don’t feel I deserve quite as much attention as I have received, but I feel absolutely blessed that word has gotten out about my blog and even one person may be helped.

So again, thank you xxxx10982699_918516614872142_4787843721648344028_n

I Met My Surgeon To Discuss Stoma Reversal Surgery…

I was going to write a post yesterday but I didn’t really feel in the right mind set to do so. But I’m feeling much better and a lot more positive today and ready to write about meeting with my surgeon yesterday.

Well, actually. We arrived at the hospital for my 9am appointment but the surgeon who was there throughout my surgery was not available, therefore I spoke to a doctor I’d never met before. Not exactly practical as he didn’t really understand everything that had gone on with my procedure, the fact it was emergency etc.

Any how, most of you will know I have an Ileostomy. Although it is not a loop Ileostomy, I was told there was a chance of reversing the stoma. Of course, that may come as good news to a lot of people who don’t like having a stoma. And when I was first told this, it was my end goal to my recovery. But having my stoma has changed my life. I’m in no more pain, I’m more active, I’m putting on weight more easily and I’m not relying on things like laxatives.

So, yesterdays appointment was to discuss a reversal surgery. I had of course researched it myself and spoken to others who have had reversals. As well as people that have actually decided to put off a reversal surgery due to the fact they are now living pain free. My research and conversations had left me feeling a little confused about the whole thing. There are so many risks in the operation, and chances that the reversal can go terribly wrong. There are also chances of having to have a new stoma formed, alongside having further problems with my bowel after it being reversed. I appreciate every case is different. Some people have some of their large bowel left and others have their rectum removed meaning a J-Pouch is formed. For me, my whole colon was removed. And a length of my rectum was kept. Meaning the procedure would entail my small bowel being reconnected to my rectum. Please don’t quote me on this, as I’m still not completely aware of what the whole procedure entails. I’m just piecing together what I was able to take in by the doctor.

Of course, I’d heard some horror stories about the operation. And I questioned these with the doctor. I asked him the pros and the cons of a reversal. I asked him of the main benefits. But funnily enough, although not having to worry about your bag may seem like a positive, that seems to be the only one. The rest just feels like a bit of a downfall to me. He told me the main benefit was that I would not have a stoma, and I would not have to wear an ileostomy bag. That was it. He said that for a lot of people, that is a huge benefit as they really do not like their stoma.

The consequence for me not having a stoma, and to have the reversal, means I would never be able to go to the toilet “normally” again. Meaning I’d live the rest of my life having diarrhea. Controlled by 3 types of medication daily. I’d be at risk of accidents and it would take a while for my bowel to adjust to yet another change in my body. In fact, the bowel may never completely adjust again. There’s a chance I can become worse with a reversal, meaning I’d have to have another stoma put in afterwards. And they would completely cut out my rectum and stitch me up to give me a permanent Ostomy.

The scary part of all of this is that it’s MY decision. When I first had my stoma formed it was by emergency surgery. I had no choice. But now I’ve been given all of this to weigh out in my head to come to some sort of decision of how I want to spend the rest of my life. I have to contemplate all of the risks, and prepare myself to expect a number of situations. It’s completely terrifying.

I have no issue with my bag at all. The only problem I face at the moment is occasional leaks and itchy skin from time to time. All I have to worry about is ordering in new bags and changing them. It feels these are the only issues I’d be getting rid of by having a reversal. It’s a cosmetic choice more than anything. Carry on as I am, healthy, active, pain free. Or undergo more surgery to not have to carry around my ileostomy bag on my stomach. Rely on medication forever, deal with a bad stomach and use the toilet frequently. Risk all of this to perhaps just undergo another surgery for a stoma, meaning it wasn’t even worth the time.

All of this was spoken about in my appointment with the doctor. I felt quite downhearted about it all, I’d hoped there would be a bit more benefit to having a reversal. I know it’s different for everyone. I know some people who have had reversals are fine, I know some people don’t even get the chance to have a choice. And for that I apologise. I don’t want to be selfish nor pedantic but I also have to think about what’s best for me, physically, emotionally and mentally. Everyone deals with things differently and I have been able to deal with my stoma well. I don’t want to fall 2 steps back and make a decision that I may not cope with in the future.

The doctor could see I didn’t know where my head was at, so told me to return in 6 months. I feel happy to do that. I’m happy with my life right now, and how I feel physically. I don’t feel insecure and am learning more and more about myself each day. I owe my life to my stoma and I don’t want to make any rash decisions to change that. I want to think properly and learn more about the procedure and the outcome. I’m not going to change my body to become more pleasing on the eye to some people. I’m more concerned with how I feel inside. Feeling healthy, and good about myself.

I know this post doesn’t explain much. But I thought writing it all out would possibly give me some point of direction. And it kinda has. I just want to stay the same right now. I’m finally healthy. I’m finally non reliant on pills and I’m finally not worrying about being in the bathroom 24/7. Having a stoma has made me so much more open minded and it has helped me embrace my body. It’s helped show me what I love about my body, and has stopped me focusing on the flaws. It’s not worth even thinking about change right now. Not now I’m where I’m happy being. No matter what anyone else thinks about the decision I make, it’s mine to make. And for the time being, that decision is to live my life being pain free, happy and with the world at my feet.

10991626_933260466731090_4375024831477500972_o(This photo shows me 2 years before my surgery & now)

2 Months Of Ileostomy Recovery In Pictures.. The Difference Is Amazing!

This post is for both me and others going through ostomy surgery. Just looking at the first picture compared to the last in just the space of 2 and a half months is phenomenal. I have gained weight, I look happier, I look HEALTHIER. My scar is healing so nicely and I’m really feeling like me again.

Here’s a selection of my favourite pictures taken so far during my recovery.

photo 2tumblr_njkx8qnhNh1rmgzzqo1_1280photophoto 1photo 3Photo on 28-02-2015 at 11.46photo 5IMG_1363photo 5(1)image1IMG_0722photo(7)photoIMG_3139-0IMG_3095IMG_3181photo(2)10995586_955619417828528_5358526500689486313_n988519_965896740134129_2916876947014465919_n10982699_918516614872142_4787843721648344028_nphoto 1photo(3)

Having A Stoma Made Me Realise There’s More To Life Than A Flat Stomach

Isn’t it funny how so many of us go through life caring about our image. How the magazines spend their time writing about who wore a certain dress best. Who’s putting on too much weight. Who’s losing too much weight. Well to put it bluntly – who the f*** cares? (I have to censor swear words now I’m sorry).

Why do we choose to pick out our flaws rather than embrace the things that make us different? Why has it become the norm to hide our bodies? To shame people who choose to love theirs?

Why the hell does such a vast majority of society live each day to please someone else? Why don’t we just live to please ourselves? I mean, are we really going to be laying on our death bed asking ourselves “why did I wear that?!”, “why did I eat that much?” “why did I say that” or “why am I so fat?”. No. I don’t think so. And if we continue asking ourselves these questions, more than likely one of our last disappointments will be the fact we didn’t accept nor respect ourselves.

I’m no stranger to self negativity. I suffered with bulimia for two years. And not even a collapsed lung from the amount of vomit trapped in my lungs stopped mphoto 1y hating my body. It’s not until now where I’ve been given something deemed as “different”, that I’ve accepted my body. I don’t really get the chance to think about what my belly looks like now, because half of it’s covered by a bag. The other half of it though looks pretty damn good though. And it’s not flat, it’s not toned, it’s just a normal belly. But it’s the bit didn’t have to be cut apart and covered in stitching. It’s the bit of my skin that’s still scar free. And I like that. Although, I love my scars too. My scars remind me of everything I’ve been through and everything I’ve overcome. They remind me that I survived. They make me really proud to wear them. And I wear them with pride. Hey, I even love my bag! I love the fact it’s different, and that it gives me a story to tell.

What I do get the chance to think about though, is what I’m doing with my life. Where I’m going, and where I want to be. The more you think about that, the greater chance you have of acting on it.

So just take a moment, and look at yourself. Think about what you’re doing, where you’re going. If you don’t like yourself, change. Be somebody you’re proud to be. If somebody doesn’t like that? F*** them. If you don’t like what you’re doing, quit. Work hard to find what makes you happy. Try new things. Don’t hold back. Don’t be afraid. Do something that makes you so crazily happy that you wake up everyday ready for whatever the day brings you. Be someone where you can look in the mirror with pride. But don’t be ‘you’ for someone else.

It’s a shame that it took nearly losing my life to make me appreciate it, but let me tell you, I’ve never appreciated myself more. I’m finally looking further than my reflection. I’m digging deeper into finding what I’m passionate about, I’m searching for what makes me happy. I’m living in the moment, taking each day as it comes.

P.S. I’m actually sat here eating a massive bag of chocolate right now. And I’m not thinking about how bloated my belly’s going to be once I devoured the whole packet. I’m just worrying about whether my stoma’s going to cope with it or not!

Going Topless! – Having Sex When You Have A Stoma

When I first had my stoma put in, I was given a variety of different links to different support groups and various charities I could get in touch with should I feel I need to. At the start of my surgery, I was pretty scared as to how my life would change, and so looked further into joining some of these groups, to meet others in the same situation as me. I’ve been a member of various groups for 2 and a half months now. These groups are open to anybody in need of support or just somebody to vent to. You’re able to post freely about whatever you like.

I have seen many posts regarding sex. Asking things like “what do you wear during sex?” and “what can I do about my bag in the bedroom?”. It seems many people buy different outfits to wear to support their bag, whilst others invest in things like crotchless underwear. These are great ideas, not just for hiding your bag or for support, but for feeling sexy. Which a lot of people can find hard to feel when you have a stoma.

But what about when you don’t want to wear… anything? I mean there’s nothing more intimate than skin-to-skin contact, is there? Is it wrong to want to feel beautiful when wearing just your skin? Is it wrong to feel beautiful in your own skin? Whatever the differences?

I don’t think so. Which is why I have been looking for different ways to feel comfortable during sex. One of those being topless.

Photo on 02-04-2015 at 15.36There are such things as mini-ostomy bags. These bags fit the same as other bags, but are a quarter of the size. There is also a velcro fastening to fold the bag in half if you prefer! This means you can be comfortable in any sexual position – even on top! With the bag being so small, there’s less weight to your stomach, and the “dragging” feeling eases.

There’s also a skin coloured stoma cap you can buy which is so small and barely noticeable. I haven’t tried it myself as I have an ileostomy but apparently it is fantastic for someone with a colostomy! Stoma-Cap-back-filter

A support band is another idea. A band that just sits over your bag and tucks it in. You can get these in lace, if you fancy something a little more flattering.

10982699_918516614872142_4787843721648344028_nGoing topless for the first time after surgery is very daunting, and I was very nervous. I waited until all of the lights were off to take my clothes off. I’d spoken about it with my boyfriend before but I’d always said I felt more at ease with a top on. Both for confidence and comfort reasons. But this time was different. I was wearing a smaller bag and felt comfortable. So the only fear left to face was regarding my confidence.

It put me at great ease to hear my boyfriend say “oh wow, you haven’t got a top on!” in such a proud manor. Nothing else was said. Everything else felt normal. There was no awkwardness, no fear and no shame. A sigh of relief rushed through my body and I felt I’d climbed a further 2 steps up the ladder.

I can’t say I found going topless easy… it was scary. You’re left wondering what your partner may say, or choose not to say… no matter how much they love you. But once you’ve done it the first time, it becomes easier the next. You never know until you try!

If you are interested in a smaller ostomy bag, 
please visit www.securicaremedical.co.uk 
where you will be able to speak to an adviser about 
getting some samples sent out to you.

Being Approached With: “You’re The Girl With The Thing On Her Stomach, Right?”

It feels like forever since I last posted even though it’s actually only been 4 days!

This week I’ve been keeping myself busy. I’ve had trips to the beach, three evening’s out for dinner, a BBQ, and a night out clubbing! It’s been great for me as I really feel back to my old self. I haven’t had any troubles with my bag nor skin this week, and nothing that could be deemed as ’embarrassing’ has happened!

One thing that has made me laugh though, is how I was approached whilst on a night out with friends. Of course, my blog has been read by many people so far, many of whom are local. So obviously, going on a night out in a relatively local area – you’re going to be recognizable to some people.

988519_965896740134129_2916876947014465919_nI was approached several times whilst out. Some in quite a hilarious manor. “I know you! You’re the blogger aren’t you! You’re the girl with that thing on her stomach! What is it again”. Having to explain the ins and outs of an ileostomy bag on a night where I just wanted to get drunk and dance wasn’t really the plan. But at least it was raising a little awareness and educating some people in some sort of way I guess.

At first I was quite annoyed, I just wanted to have a nice time with my friends, and not have “the thing on your stomach” shouted at me for everyone to hear. But now, I realise that it’s somewhat a good thing. At least they’re asking what it is. At least they’ve taken note of something, and at least it’s spreading the word about the condition. And if it takes me having something like that asked quite abruptly, then I’ll take that if it even helps them understand just a little.

I think helpful to remember that not everyone will have an understanding, and that not everybody gets it. And they only way they will get it, is to ask – whatever format that comes in.

I know some people can be quite offended by being questioned about their bag, but don’t be. Talking about it gets other people talking. It raises awareness and aids the lessening of the stigma around it.

In other news…

I made it into my second publication last week! This time being The Metro. They used my bag-less stoma selfie in an article about ending the stigma.

I am also working on something really exciting over the next month. So keep an eye out for my blog about it!

Why The New Quit Smoking/Cancer Awareness Advert Needs To Be BANNED

If you’ve read my blogs before, or know me at all, you’ll know that I am all for raising awareness. For me, the main issue I hope to raise awareness for is IBD and Ostomy. I spend a lot of time working closely with different companies, support groups and charities, and encourage others to raise awareness also. There are a lot of things that can bring you to needing an ostomy, including colon cancer. I have met others who live with an ostomy due to battling cancer, the loveliest people who are so grateful for their stoma now, as they now live the lifestyle they always hoped for.

So to me, the new Centers for Disease Control and Prevention advert came as a complete shock. I’m not sure if you have seen it, so I will just quote exactly what was said.

“I’m Julia, I smoked and I got colon cancer. I had chemo and two surgeries. But what I hated the most, was the colostomy bag. That’s where they re-route your intestines so you have bowel movements that go into a bag. Through a hole in your stomach. My tip is: get over being squeamish. You’re going to be emptying your bag 6 times a day.

The video ends with her holding up an ostomy bag, with a voiceover telling you where to visit to help you quit smoking.

I know it may not concern many people that don’t have an ostomy, or those whom don’t know much about them, but to me, it hurt. It hit a nerve, quite hard. Watching this video bought out so much anger that I didn’t know was there. I am absolutely, utterly disgusted that they feel they can advertise a quit smoking campaign with something that has saved so many lives.

It angered me for many reasons, upset me on so many peoples behalves. Now, I understand that the aim of this advert was to help smokers quit. I understand that the aim of this advert on their behalf, was a positive one. But what I don’t understand is why they felt the need to use a condition that can be caused by a variety of diseases – not just colon cancer – to put people off of smoking? Why should we have our condition used as a negative towards something like smoking?

How the hell do they think that makes people who live with ostomys feel? People like me? Who at 19, underwent EMERGENCY Ileostomy surgery for ULCERATIVE COLITIS. This was not in anyway my fault. I did not do anything to add to my need for an ostomy, nor could I have done anything to prevent it.

This advert is painting the image that a need for an Ostomy is caused by something we have done to ourselves. Telling us that we are facing the consequences for disrespecting our bodies. Treating it as a punishment; telling us that we deserve it.

It angered me even further to know that the woman speaking had been through chemotherapy and countless surgeries, but decided that having to wear a colostomy bag was the worst of it for her. How could she forget to mention the fact that her colostomy bag was the reason she’s still here to help contribute to this horrendous advert?

Wphoto(7)hat has insulted me even more is that the company felt confident enough to use a life saving disability as a reason not to smoke, yet couldn’t get their facts right. In the videos description, it states “She needed an ostomy bag taped to a hole in her abdomen to collect waste.” This is absolute shit. You don’t TAPE an ostomy bag to your stomach. And there is NOT just a hole in your abdomen. Your intestine is bought out to keep it working. To keep you alive. There is no hole, there is a stoma. A part of your intestine that everyone is born with, just positioned differently.

How the hell does this company have the audacity to make people feel so insecure? And how the hell do they have the nerve to use my condition as an example of why you should not smoke?

Can you just imagine it. Just please, take one second. One second to think about your biggest insecurity. The thing that you feel makes you feel different to the rest of the world. The thing that you would have to talk to somebody about in complete confidence to overcome. Okay, now imagine it being talked about negatively in public. Somebody taking that insecurity, and using it as a consequence of something that could kill you.

That’s exactly what this company did. This company took smoking, something obviously unhealthy, which carries a lot of risks. Something that a lot of people deem as dirty. Something that can cause you illness in so many ways. This company took that, and expressed the opinion – not fact – that if you carry on smoking, you will end up with a stoma bag. Oh wait, they didn’t even mention a stoma did they – sorry. And what’s worse, is the fact they tell you that you will need to get the “squeamish” side out of your system to be able to cope with it.

How dare they. How dare they do this. My ileostomy bag saved my life. It does not make me feel squeamish. If anything, I am just damn grateful to be alive.

There are so many people out there with ostomys, due to a variety of illnesses. I can guarantee most of these illnesses are not self inflicted. I won’t go into detail with these illnesses because I can’t pretend to know much beyond what Google tells me. But what I do know is myself. And I know that my bag is not something to be used to counteract a negative decision. It is not something to make others squirm. And it is definitely NOT something that should be used as a fear. It is what has kept me walking on this earth, and has kept me living. Really living.

This advert should be banned entirely. Please do carry on helping others quit smoking, and please carry on raising awareness for Cancer. But do not by any means do this by making people living with other conditions feel like they’re inadequate. Because by doing this, you are making it twice as hard for people like me to speak out. To raise awareness on our own behalves. To feel normal. For people like me, my bag was a god send. It was the difference between life and death. It is not something to be ashamed of or disgusted by.

How are we meant to move on and embrace our bodies when such a large company are drilling it into the minds of society that Ostomy’s are nothing but a consequence?

We’re not an anti-smoking campaign. We’re people. Real, living, feeling people. Remember that.

Why We Should All Be More Open About Going To The Toilet

I was sat thinking about how nice it was to be working from home, contemplating all of the benefits I now indulge in. One of these benefits, as silly as it sounds, is actually being able to go to the toilet whenever without feeling embarrassed! I know that sounds odd, so let me explain..

My old job, as lovely as it was, was very difficult for me both mentally and physically. I didn’t start until 9, but unknowingly living with Ulcerative Colitis, I was up at 6am – just to go to the toilet; for I knew that if I didn’t, I’d be sat at my desk in pain for the next 8 hours. It wasn’t just getting up at 6am though, it was having to drink a coffee, followed by a cigarette, followed by a mug of hot water whilst slowing eating a banana, followed by trying for the toilet, followed by another cigarette, followed by a laxative or two and so on.. every day, for 6 months. It may not sound like a big deal to you, but imagine being in so much pain, being so bloated, trying everything you could to get rid of that feeling, whilst having to rush to leave for your train into work; even though you got up 3 hours earlier. If my morning routine didn’t work for me, I’d sit in the office clenching onto my stomach as it filled with shooting pains. Once I’d actually got to work, within an hour of being there I would have been to the toilet 3 times, as I’d drunk so much caffeine! I felt so insecure and embarrassed, having to excuse myself every 15 minutes to go to the toilet – I can’t imagine how annoying it must’ve been for my boss! Which led me to think… why was I so embarrassed?

It seems that going to the toilet is such a taboo topic. No one wants to talk about it yet everyone does it. I mean, we talk about sex, we talk about love, we talk about food, all such natural things that everyone of us has some sort of experience with. But what about something as natural as going to the toilet? Something we all do throughout the day. Why has it been made into such a dismissive subject?

10995586_955619417828528_5358526500689486313_nI’m not saying we all start greeting each other with “Good morning! Have you been to the toilet today?” No. What I am saying though, is that maybe if we were all a little bit more open and a little less embarrassed, people like me wouldn’t have to struggle so much to seek help. So many people who suffer with IBD and IBS are suffering in silence. It’s more than just a toilet trouble. It’s more than just constipation, diarrhea and stomach cramps. It’s the fear of leaving your house, it’s being in excruciating pain for days on end, it’s having to make excuses not to go out, having to call in sick, terrified of embarrassing yourself at work, but knowing you have no other way of paying your rent. But if we could all lift the stigma of toilet use, imagine how much more at ease people suffering so privately could feel? Not being scared of telling someone, in fear of being humiliated. Not being told it is just an excuse for laziness; and not having to suffer in silence!

The amount of fiber I had to indulge in and the amount of foods I had to avoid just in the hope nothing bad would happen the next day was ridiculous. The frequent use of laxatives that ended up becoming my daily snack, the amount of cigarettes I’d smoke just in the hope that something would happen.. it just made me worse! If someone would have just listened to me, and respected what I was telling them without making it into a laughing matter, everything could have been different.

It’s sad that my body had to take such a dramatic fall for someone to listen to me, without making a joke out of how I was feeling – I even had my doctor rolling his eyes at me! But if we were all a little bit more open and a little bit more accepting starting now, so many people could be saved from the pain they’re hiding from you. And some people hide it well. If we as a society accepted nature for what it is, and turned it into a less stigmatic conversation, we could all become a little bit more open minded, and a little less judgmental.

I can’t wait for a day when someone can approach you with “look I’m having really bad toilet troubles” without fearing a smirk or a giggle from the person opposite. It’s silly really, because everybody does it… but for some people it’s not so second nature!

Why Your Sex Life Matters More When You Have A Stoma

Sex is a big part of any relationship, it’s what breaks down the difference of love and friendship. It’s what creates an intimate bond between two people, cancelling out the question of just being great friends. Although a relationship generally causes the pair of you to become best friends, without sex there is no beyond, it is almost as if the pair of you just like hanging out with each other… a lot.

But after surgery, things can both vastly or gradually become a lot different. For many people after ostomy surgery, sex can become an issue. It can become a fear or a worry, a question of whether your partner will still want you intimately. Many people after surgery can feel unattractive, like no one will ever want them again… without their clothes on. I know I did, when I first came out of surgery I refused to look at my stomach for days. When I finally looked down I hated what I saw. I hated the fact that I had something that made me different. The ileostomy bag wasn’t even the worst of it though. I was convinced I would never be able to change it myself, I didn’t want to see what was underneath. And I didn’t, for weeks on end my mum changed it for me, every time I got close to taking a peak I broke down, apologising frantically to my mum for being such a burden. Of course, she said it was fine, but it wasn’t fine in my eyes.

photo(2)I knew that the only way I’d be able to return home to my own flat was if I changed it myself, and so I plucked up the courage to do so, determined to gain back my independence. From then on I have been able to look at my stoma, and it has gotten easier and easier as each day has passed on. But in my head, that still didn’t mean it would be easy for my partner. Even though I was starting to feel better about myself, there was still the worry of, but how will he feel about my body? Will he still want me? Will he still find me attractive? And I guess that’s how a lot of people feel. And that’s why sex can matter more when you have a stoma. Not because it’s routine and not because it is a major factor in a relationship – but because it is one way of helping you feel better about yourself, and moving on from what has happened; it is one thing to tell you, you are still wanted.

I’m not talking about one night stands and I’m not talking about a major porn style session. I’m talking about the feeling of acceptance. From one person to another. Sex is something that brings two people together in a way like no other. And to have sex after surgery for a stoma is a big thing both mentally and emotionally. It takes a lot of confidence to strip down to your most vulnerable state, especially when you’re not completely sure of yourself. It also strikes the fear that you may not be as physically attractive to your partner. It forces you through a barrier of fear yet creates a window of hope that you’re sexually attractive. Which of course, you ARE. But for some people it takes time to realise that. It can take another person to push you into realising that.

Sex matters more because once you’ve had surgery, you can reach this level of unhappiness with your body that you may not be able to fix by yourself. You have this need to feel wanted, to be told you’re still beautiful. The feeling of loneliness in a relationship is worse than actually being on your own. And knowing you’re still wanted in an intimately physical way can help guide you back to a feeling of happiness. To be wanted is a beautiful thing, especially when you don’t feel you are in your natural skin.

Everyone deals with things in different ways and your partner may have a hard time dealing too. But remember that if they love you, it is almost certainly not anything to do with the fact you have a stoma. When in a relationship, everything you feel reflects onto your partner, it’s almost as if they are able to absorb your emotions. It may effect them in a way you don’t realise, or won’t acknowledge. Think about how you feel when seeing someone cry, or hurt, or become so distressed that you just don’t know what to do. Now imagine your partner watching you fall apart, having watched you being so ill and helpless for such a long time. And now having to watch helplessly as you deal with something that they may have never experienced themselves, trying to help you come to terms with something they may not understand

Ostomy surgery can effect a relationship in so many ways, it can cause tension, it can cause depression, it can cause so much anger that doesn’t actually stem from your relationship, just the trauma you’ve been through. Sex can help you move on from this because it increases stability – normality. It is the one thing that can fill the need for intimacy which may increase to fight against the negativity you may be feeling within yourself. It is one thing that can’t be taken away from you unless you let it. And if it has been, then talk about it. Because it matters. It matters more than ever. It matters because all you want when you feel so alone in your situation is love, attention, someone to scream at you that you are still fucking beautiful.

Sex is a great thing to share with someone you love. And if you feel alone in your relationship, or are scared of their reaction or how they feel towards you now, don’t be. If they love you the way they say they do, something as small as a stoma won’t effect that. If anything, they should feel more grateful that you’re still here, that they’re still able to show you that level of intimacy.

What you’ve been through has put you in a better position physically, so please don’t let it make you feel any differently mentally or emotionally. You’re still you, you’re still beautiful. Just with a bigger story to tell.

What Happens When You Go Swimming With A Stoma? – In A Bikini!

I’ve always been very self concious of my body, living in the idea that I was ‘fat’. Things like going swimming were always a bit of an ordeal for me, as I was convinced people would look at me and point out the flaws I felt within myself. I would always jump into the water as soon as I got to the pool so that nobody had the time to even get a glance of my body. Last year was the year I started to feel good about myself. I’d lost some weight and was determined to become more confident with my new body. With this newfound confidence I decided it was time I bought my first bikini – sounds absurd at the age of 19 doesn’t it! I remember wearing this bikini and feeling really good about myself. It was high waisted, but it was my first step towards the self-esteem I desperately longed for.

This year, it’s been a little different for me. The flat stomach I always longed for has finally appeared, which of course I’d love to show off in a bikini, but something has now been added to my belly, which would probably cause more attention than a little bit of flab – a stoma, covered with my ileostomy bag.

I’ve come away for the week, and the place I’m staying in has a pool. With that being one of the main attractions, it’s something that most people use when staying here. I contemplated swimming, researching into it to see if anyone had experienced swimming so early on after ostomy surgery. I’d seen some very positive experiences written up online and decided to give it a go. Of course the idea had me shaking a little, my stomach tied up in knots, overwhelmed with the nerves that had entered my body; but I told myself that if I don’t do it now, I may leave it so long that the thought of it leaves me too scared to do it in the future.IMG_3181

I don’t own a swimming costume anymore, just my bikini. I thought about wearing it, a devil on one side of my shoulder telling me “no, don’t wear it, people will laugh at you!” and an angel the other side shouting back “you can do it, you don’t need to hide”! I then remembered how good I felt last year in my bikini, how little fear I felt when people looked at me. I didn’t want to fall back into that place where I’d hide in my towel as soon as I got out of the water. I told myself that my stoma is nothing to be ashamed of. And I meant that. My stoma is the thing that has kept me alive, and surely I should embrace that? Why should I cover myself just for somebody elses satisfaction? So I wore that bikini that made me feel beautiful last year, and instead of falling two steps back, I moved one step further towards that self esteem I so desperately want to maintain.

With my bikini being high waisted, I was able to keep my bag supported, with the option to fold it down incase the water put too much pressure against my stomach, making it cling too tightly onto the parts of me that are still tender and swollen. I wore a smaller ileostomy bag also, so that I was more lightweight, and more comfortable in the water.

Photo on 02-04-2015 at 15.36It was yesterday that I actually gained the courage I needed and walked over to the pool, taking my friend with me. I stripped down into my bikini, and although I started off feeling self-concious, I quickly realised that this is the body that I will be living with, and that if I want to do things deemed as ‘normal’, I need to get over any flaws I feel are there. In actual fact, I just needed to forget about what other people may or may not think. Because it’s not their opinion that is going to keep me going – it’s mine.

I left the changing rooms and walked over to the pool, my scar very prominant. IMG_3168.JPGExpecting stares and fingers, I felt ready to acknowledge the fact that everyone has a different point of view and a different idea of how a body should look. But my expectations were wrong. Nobody stared, no body pointed. I slowly got into the pool – not wanting to jump in, incase the pressure of the water caused my bag to float away – making my own water float! I was able to get into the pool with ease and began swimming. The water felt amazing. I couldn’t even feel my bag whilst in the pool, it was as if for that amount of time none of this year had happened, no surgery, no stoma, no bag. I was taken back to last year, I felt as if I was back on that same day where I felt absolutely amazing. I swam a few lengths before getting out to use the steam room. I was a little breathless I must admit – it’s the most exercise I’ve done in while!

I questioned using the steam room before entering, as I was a little worried of the heat effecting my scar. I really wanted to use it, so decided to just try it out for a few minutes. It was great just being able to lay there in my bikini out of the water without a care in the world.

Leaving the steam room and returning to the pool, I was actually more concerned with how red faced I now was from the heat – instead of how the rest of me looked! We only stayed in the pool for a quarter of an hour more because I was getting tired, but we still managed to do hand stands and roly polys!

We left the pool, got changed back into our clothes and that was that. I’d done it. I’d overcome my fear, and proved that even an activity that could make me feel so vulnerable has not defeated me. Now, it’s just one more activity I’ve ticked off my list. No stares, no fear, no problems. I felt so in my comfort zone and so confident. Just another teenage girl.

Sore Skin Around A Stoma

I thought I’d blog about skin care as I’m currently having troubles myself with the skin around my stoma. As you can see from the photo it is extremely sore, but it’s not always like this, only when I run out of my trustful LBF wipes. For anyone else with a stoma, you’ll know that so many people tell you not to use the products on your skin if you have sores, as it may work as an irritant, meaning you’re stuck with all sorts of creams that just make your bag so damn loose, causing leakages. Other products such as powders and sprays haven’t worked well for me either – perhaps I just have really sensitive skin.IMG_3190

These wipes, unlike other products, are usable on your actual stoma with no side effects. You can clean up to the stoma as close as you like, without worrying about infection. The wipes also dry completely within 30 seconds, so you won’t have any leakages using them.

My skin has been like this on several occasions, but is currently in it’s worse case scenario as I am more active, causing my ileostomy bag to be pulled around more. It first got sore however, after surgery. I tried so many sprays and creams but nothing was moving it, and was just making it worse with the leakages I was getting within and beyond the flange of the ileostomy bag. As soon as I started using these wipes, my skin cleared up, and my stoma itself looked healthier because I was able to clean it with more than just warm water! IMG_3207

I always change my bag straight after a shower – of which I do without my bag to give my stoma some air and to clean my skin thoroughly. I don’t feel warm water on dry wipes is enough for my skin – but each to their own!

I know that within 3 days my skin will be back to it’s healthy looking state.

These LBF wipes come from CliniMed. What’s also fantastic about company is they will first give you a free sample of these LBF wipes just to see how your skin feels with them, so you’re not at risk of wasting any money!

This was just a quick blog post because I thought it may be helpful for others in my situation. Sometimes it’s better to read a personal opinion than one you may find on any stoma care website – especially as it’s coming from someone with a stoma!

Going Away On My Own

Things have been pretty difficult for me the past few months, emotionally, physically and mentally. Not just because of my surgery and not just because of the changes my body has gone through, but things far deeper that have been there for a while, I just failed to acknowledge them – or refused to. Sometimes, the easiest thing is not to talk about it. I spend my life blogging away and talking about my ileostomy, wanting to raise awareness and wanting other teens to embrace their own bodies. But I also do it for me. I do it to help myself recover. Writing about my surgery has been my therapy. It has been a way for me to acknowledge and accept what has happened. It’s not the same when the problem isn’t just affecting you. You can’t speak for another person. You can’t control what they think and do. You can’t change them and at the same time you can only make decisions for yourself.

This week it had gotten too much for me. So I’ve come away on my own for a few days, to reflect, and to breathe. Everyone needs to breathe once in a while. Sometimes it’s too hard to when you’re around another person trying to breathe at the same time. It’s almost as if you’re struggling for oxygen without even realising it’s happening.

I’m using this time to write, to plan and to attempt a few things from my bucket list. I think it’s important for me to stay busy and focused. I love this blog and I love the people reading it and I want to carry on writing for that reason.

– Although the place I’m at currently doesn’t have wifi so I am using my personal hotspot! I am SO not looking forward to my phone bill at the end of the month – help me please!

P.S – To those new reading today, or have been reading since the very start, thank you. Thank you for taking the time to read my moans and groans and babbles and spur of the moment posts. Thank you for supporting me. xxxx

P.P.S – I’m writing this on 2 hours sleep. Please forgive me if it makes no sense.

A Naked Dress And A Stoma Bag? The #GetYourBellyOut Ball!

I took some time out from the blog this week to see friends and go out and enjoy myself. To be honest with you, I’ve been feeling pretty down recently and I couldn’t actually bring myself to write anything because I didn’t want to force my negativity on to you all. But I’ve now realised it is not me thrusting any negativity upon you, it is simply being human. Of course I’m going to have down days. I just needed to pick myself back up and remember I’m okay. And that I’ll always be okay.

I did just that at the #GetYourBellyOut ball in Birmingham. It was one of the simply most incredible events I have ever had the absolute pleasure to have experienced. I can’t express to you how honoured I felt to be a part of it; and how proud I am of the brilliant awareness campaign, who have now raised an astounding £31,000 for Crohns & Colitis UK.

Of course, with it being a ball and all, everyone was dressed to impress. There was so many beautiful girls in gorgeous dresses, with their hair and makeup immaculate. I was overwhelmed by the amount of diamantés and tiaras! I opted for something adventurous myself, a tight, nude plunge dress. I was a little nervous about this dress as I’d bought it online a couple of days before the ball, without thinking about my bag. But it was absolutely fine – thanks to my lovely support pants!

My boyfriend couldn’t make the ball, and so last minute my amazing dad stepped in and escorted me. I had been in hospital the day before – nothing serious just a torn tummy muscle – and didn’t feel well enough to go on my own. I’m very lucky to have such an amazingly supportive family. And he looked amazing too! I was so proud to have walked into the beautifully decorated room with someone who had done everything possible to make sure I didn’t miss out!

We were welcomed onto the top table with the events sponsors, who also just happen to be the wonderful sponsors of my blog, SecuriCare & Clinimed. We met other bloggers and I learned about my fellow ostomates, and listened to their inspiring stories. 

We had the pleasure of watching a stunning performance of the #GetYourBellyOut charity single ‘Just A Part Of Me’ by Vanessa Rene, which she sang beautifully. Everyones separate diets had been catered for and the whole room was decorated perfectly.

We were surrounded by hundreds of gorgeous people and you know what? It just felt amazing to meet people that just really understood. That you could go to the toilers with and not worry about any embarrassment nor having to watch what I ate in case my bag blew up because nobody cared. So many of us were in the same boat. I could just let my hair down and enjoy myself!

Or let myself go on the toilet booth….  

Me and Sarah were back on our adventures and were the last ones standing at our table, dancing until 2am. Alright, maybe a few sit down breaks to get my breath back. 

The last thing I remember is getting a taxi back to the Travelodge we were all staying at!

All in all, the ball was fantastic. A great job done by Gem, Lorna, Victoria and Sahara, the wonderful founders or the #GetYourBellyOut campaign.

And it was so worth the amount my stomas hating on me right now. 

Really, thank you. I never thought I’d feel so happy again.

10 Important Things To Remember When You Have A Stoma

It’s important to remember from time to time that we are all only human. We all have feelings and endure a series of emotions with which we may choose to express or hide. Things can effect us deeply no matter how big or small that thing may seem to another person. Physically, mentally or emotionally  – things can become such a huge part of you and manage to eat you up from the inside before you get a chance to tell yourself it’s okay.

I’m not sure if I’m writing this post more for myself or other people in my situation, but either way I think it’ll make things easier in the long run. Something to revert back to when I’m having a bad day. I haven’t had many bad days so far, but when I do, they swallow me up and spit me back out again, leaving me feeling defeated.

So, the aim of this post is to pick myself back up again. And remind myself of a few things…

1. It is okay to get upset.
Everyone gets upset from time to time. If you feel you need to, cry it all out. Get it all out of your system, and start a fresh tomorrow.

2. Breakdowns signify strength.
Breakdowns are you finally accepting your feelings, and actually releasing everything you feel from within – everything you so desperately tried to stop escaping. By doing this, you are facing your emotions. Think of a break down as break through.

3. You have something that makes you different, uniqueness is beautiful
Sure, it may not be something you’ve always wanted, but if it became the norm, would it bug you so much? You have something that not everyone in this world has. Doesn’t that make you a little more interesting? You have an amazing story to tell. Tell it.

4. It may have been a life changing experience – but it doesn’t have to change you.
Being given a stoma means learning new things, being a little more careful, accepting certain changes to your lifestyle. But that’s it. It doesn’t have to change the person you are, so don’t let it.

5. Your stoma saved you
No matter how you feel about your stoma right now, always remember it’s given you a better way of life. In fact, it’s given you life. Your stoma saved you.

6. You are still able to live your life the same as anyone else
Don’t let anyone make you feel like you’re any less just because you may have to pack a few more things, or take a few more toilet breaks. And yeah, somethings may take you twice as long. But it doesn’t mean you can’t do it twice as good.

7. There are always going to be people who don’t understand, forgive them.. teach them
Some people just don’t get it. And maybe they never will get it. But it doesn’t mean they’re not willing to learn. Just because somebody hasn’t experienced it, doesn’t mean you have to create a barrier between you. Talk to them, help them understand, help them become more accepting of how the human body differentiates.

8. People that don’t accept it, don’t accept you. And you don’t have to accept that.
Of course, there are going to be people that don’t want to take the time to understand. And there are those people that will always just be a little narrow minded. Fuck them. If something so insignificant effects their state of mine, and they can’t take the time to get to know you, for YOU – they don’t matter!

9. You are strong
You have been through a massively traumatic experience, never forget the fight you once faced – never forget the strength you hold.

10. Smile – you have a reason to!
And finally, please just smile! If you’re having a bad day and wishing your stoma away, stop! Would you really want rid of it if it meant going back to the days spent on the toilet in pain? Or spending your days in and out of the hospital? Think about that. This is just one tiny part of you, and it’s a tiny part of you that means you can still be here. So smile about that.

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Why Did Channel 4’s Hollyoaks MOCK Disability?

It was in Monday’s episode in which Hollyoaks made the awful decision to compare a colostomy bag to an awful way of living. Disgusting, right? To many, it may seem like a harmless joke. But to others living with an ostomy bag? Not so amusing. I didn’t find it funny in the slightest.

In this episode, a nurse states “seriously, I’m going to have more fun changing colostomy bags”.

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I thought this to be nothing but a cheap comment that could have been left out with no harm done to the script. How in anyway is it right to compare a negative way of living to a disability?

It’s not for the fact that it is degrading to those who live their lives with a colostomy bag, but more towards the point that the comment was just downright unnecessary within the script. What was the need? Nothing but bad humor that I’m sure hit hard to a lot of people who’s lives have been turned upside down at some point in their life, increasing their need for a colostomy bag.

Not only was this wrong for those lines to be broadcast, but also to be coming from a character who works as a nurse. It’s comments like those that you wouldn’t expect to hear from somebody who has chosen a medical profession, let alone to be written for a soap. It is obvious to me that the writers for this episode did not take the time to look further into the words they deemed somewhat amusing, therefore showing a complete lack of empathy to those facing these medical conditions, alongside showing less passion for their own profession.

For a programme that attempts to battle story lines such as mental health and eating disorders, which attempts to show an understanding of the harsh realities that some people face on a daily basis; why do they then feel the need to contradict the image they once perceived by creating more stigma for something that is already so taboo?

Hollyoaks tends to have a younger audience, and maybe that fact that stomas and ostomy is such a taboo subject, has something to do with the line included in Monday’s episode. Perhaps the writers didn’t think about the fact that young people too can encounter a calostomy at one point in their life, be it temporary or permanently.

It saddens me to think that the writers probably just added this into the script to create a couple of laughs, but at what expense? They are aiming to reach out to todays generation, but how can they do this if they feel it is right to continue laughing at someones expense? Further more, how can such a huge television company allow this to be broadcast?

I’m sure to many people this line will be perceived by viewers as the writers intended, but for many living life with an ostomy, who have had to deal with health scares and discomfort throughout life, this comment could hit hard. Why should others feel it is okay to make a joke out of someone else’s poor health?

With Hollyoaks being broadcast to millions across the UK, these types of comments lead to destroying the hope that the stigma around stoma and ostomy will one day end. How can we be brave and confident, if it’s nothing but a shameful joke to millions of people?

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What Happened When My Stoma Bag Leaked… In Bed With My Boyfriend!

photoI woke up this morning cuddled up to my boyfriend, with one of my cats rummaging under the duvet covers. Attempting to nestle near my stomach, I frantically tried to push him away, mindful of my ileostomy bag. With this, I felt something damp touch my hand. Warily pulling my hand out the covers, I felt something wet on my skin. With a feeling of dread , I pulled the covers off of me. Just as I had hoped I wouldn’t see. My bag had been slightly pulled from my stomach, causing it too leak during the night. Just what I wanted to wake up to.

A leaking stoma bag is bad enough, but what about when you’re spooning with your partner? It’s not the kind of thing you want to tell them first thing – “sorry babe, I’m worried I’ve pooed on you.”

Of course, being half asleep didn’t help either, I got frustrated and emotional quite quickly, waking my boyfriend up and insisting he leave the room, watching him rush out with the cats, completely bewildered as to what had happened.

As I sat in bed looking down at my stomach, I knew I wouldn’t be able to make it to the bathroom without making a mess. It was in that moment that I knew I needed him. Which was hard. My boyfriend hasn’t seen me like that before, I’d been dealing with leaks myself. So having to be dependent on him with something like that left me feeling embarrassed and upset. Tears fell from my eyes as I called out to him for help.

He bought my some wipes to help clean the mess and cover myself, and told me it was okay. Of course in my eyes it wasn’t okay. Who in their right minds wants to be covered in their own waste, let alone under the watchful eye of their boyfriends!

I was able to run to the shower without further leakage, use my adhesive spray to pull my bag off, and jump in the shower.

Normally, when having a shower, I prepare beforehand. I.e. cutting a fresh bag, placing dry wipes within my reach and setting up a little place for my skin care accessories. With the current situation, this slipped my mind. Again, I had to call for my boyfriend – who was busy stripping the bed sheets – and teach him the art of cutting my ileostomy bag.

Of course, we both got frustrated “no, not like that, turn it at an angle” with him replying “I’m trying my hardest woman”, but we got there in the end. (Well sort of, it wasn’t exactly the circle I’d hoped for!) But he tried. He sorted out my skin care accessories and left me to regain my dignity.

From then on, it was almost as if nothing had happened. Almost as if I had just decided to take a shower earlier than usual.

I’m not sure why, but bag leaks have managed to give me this sense of defeat. I think this is because I have felt I haven’t been in control of the situation. Almost as if it signifies falling two steps back. Having my boyfriend witness me in such a vulnerable state though, and being made to feel like it doesn’t matter, that it’s just something that ‘happens’ has given me a little hope. It has left me feeling as though things like these can’t alter your state of mind.

It’s easy to forget sometimes, no matter how confident you are, and how in control you are of your body, that accidents can happen. And that’s exactly what it was! Just another accident.

Showing You My Stoma – What Sits Beneath My Ileostomy Bag

Looking at your Ileostomy Bag can be a hard thing in itself, but what about what’s underneath?

Today I’m going to be brave and write about my stoma. It’s a hard thing for me, because although I feel confident with my bag, I don’t feel completely the same about my stoma. I’m not totally sure what to make of it.

I remember that it saved my life, and I know that with my stoma, I am in no pain. But at only 19 years old, when I’m still growing up and accepting my body as it is, I find it hard to convince myself that it’s okay all the time. That it doesn’t matter to me that my body is somewhat different to so many girls my age.

In this post, I’m going to take a huge step and reveal what sits under my ileostomy bag, day in day out. I’m fully aware that some people aren’t so accepting. I understand that my stoma is not going to be so pleasing to the eye for some people, and I get it, some people are just down right squeamish.

I was the same at first, I hated it. I looked at it and wanted to cry. In fact, it took me a good 3 weeks to even look at my stoma. I insisted my mum help me change my stoma bag just so that I didn’t have to look at it. I’d place my hands over my eyes and try not to cry whilst she did it, apologising frantically for the fact that she had to look at it herself.

But, this is me. This is my body. You don’t have to accept it, but I do. And it’s important that I do, in some way. It’s so easy posting pictures with my bag, but this? Not so much. This is personal, and this is intimate, and this is a big change to my body.

I’ve envied girls with beautiful, flat stomachs the whole of my life. And my belly is beautiful too, just a little different. I think it’s important to remember that everyone is different in some way. Everyone has something that makes them unique. And I guess for me, this is one of those things.

So, here it is, here’s my little stoma. Here’s the thing that makes me unique. Here’s the thing that has impacted my living. Here’s the thing that thrusts upon me so much emotion. Here’s the thing that has saved my life.

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I cried before I decided to write this, because I still felt like I hadn’t been completely honest to myself about my situation. And I’m shaking as I write this post, and in two minds of whether to publish or not, as I can’t determine the reactions this piece is going to receive.

But, it’s important that I do this, to continue my journey of recovery.

I’m not asking you to tell me I’m beautiful, and I’m not going to argue the fact that everyone is entitled to their own opinions.

But in my opinion? I’m still beautiful. My body is still beautiful. And I hope others with a stoma can feel beautiful too. No matter how long it takes to get there.

BIG NEWS FOR THE BLOG! – CAN YOU BELIEVE IT?!

It’s been a tough couple of weeks trying to keep all quiet about all the stuff that’s been going on with morethanyourbag.com, but finally, all is done, all is ready to be revealed! And I’m so excited to tell you all about it!

So…

Yesterday, I traveled up to London, to stay in a lovely hotel and meet with the marketing director for SecuriCare Medical – a website that offers support and delivery for people with stomas. Sarah approached me after seeing the photos and blog posts that had received such positive feedback on Facebook. I started writing for SecuriCare’s website, but they were also interested in mine!

But I didn’t just go to speak with Sarah, I went to represent the company, and present my story and website to a room full of people looking for support, alongside other companys, Ostomy Associations and more! It was a little overwhelming I must admit, but the round of applause and amount of people congratulating me just showed how much they’d appreciated what I’d spoken about. It was so amazing to meet other people with a stoma!

I was then taken back to SecuriCare & CliniMed‘s offices, where I met the head of Customer Services and the rest of the team, as well as giving the same presentation to a huge table of other women. I felt like I was on the apprentice! They loved the presentation, I was so chuffed!

Next, I was taken arIMG_0722ound a workshop to show me how Ostomy Bag’s were produced and cut. It was amazing to see how many people were working for the company, so many passionate, incredible people.

BUT.. this wasn’t it for me.

The most incredible thing happened today, and I can’t believe how quickly it’s all come about! With the blog only just entering into it’s fourth week of production, reaching over 65,000 views in that space of time, hearing all the incredible stories from absolutely inspirational people, and receiving ongoing support from such a fabulous audience…

I SIGNED A CONTRACT FOR SPONSORSHIP!

morethanyourbag.com is now being sponsored by SecuriCare Medical!

This means I will now be putting all my time into my blog, making a career out of it and earning a living from what I am most passionate about! I will also be speaking at events on behalf of the company and reviewing their lovely products!

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Amongst this, there are going to be some really big things happening within the next couple of weeks. More things to write about, more things to experience… and I CAN’T WAIT for all of it!

The 2015 Bucket List – 9 Things I’d Like To Do With My Ileostomy Bag

I think it’s important to rephoto 5member that although having an Ostomy Bag is for the most part, a life changing experience – it doesn’t have to change your life. Yeah it means relearning things that you’d never have given a second thought about before, and yes the operation in itself can make you feel like it’s the end of the world. It’s scary and at first, the thought of doing normal every day things can seem like a challenge – but once you break through the barrier, you begin to see life in a completely different light.

Before my bag, I didn’t challenge myself, I took things for granted and I was always sure of what I wanted to do. Yes, I had a career aim and I was on the ladder towards that goal but when everything came to fall and certain things were taken away from me, all I had was myself. So now, I’m going to make the most of what I have and the strength my body has.

I’m determined to prove to myself that I am oh so capable of doing things I wouldn’t have even dreamed of before my bag. I’m going to face my fears and just live. And I’m going to live twice as better with my bag!

1. Sky Diving
This is one thing I have always been terrified of doing. Who in their right minds wants to throw themselves out of a plane?! Will my bag count as an extra parachute??

2. Burlesque
Burlesque is so sexy. So many confident women all so proud of their bodies. I just love it. I think something like burlesque would really increase my confidence. Perhaps it would lead me to being more body confident – not just bag confident!

3. Water parks
I know you’re more than able to swim with a bag, but I think water parks could be a challenge, with all the slides and falling into deep water. I think it could be a really fun day out as well as another box ticked off the list.

4. Abseiling
Every time I’ve been abseiling, I’ve loved it. But the thought of the harness around my stomach makes me a little nervous. Which is exactly why I’d like to try it, just to say I did it.

5. Stomach Tattoo
I’d never really thought of having a stomach tattoo before, I have two large roses down my right hip, four birds down my right arm and a vintage mirror tattoo with a victorian looking gothic girl inside, sitting nicely on my right arm. I think a stomach tattoo could be really cool. A decorative piece near around my scars. Perhaps another line across my big scar, we could make it into a hot cross bun? Or a noughts and crosses design?! (Perhaps not..)

6. Travel abroad
I think going abroad with my bag for the first time would be nerve wrecking. They say not to have ice and other food types just to stay safe and avoid blockages within my stoma. But I think I deserve a holiday after such a dramatic start to 2015!

7. Pole Dancing
I really want to take a pole dancing class. Just to try my upper body strength. Perhaps it could tone up my currently flabby belly and legs too…

8. Marathon
I’d like to run in a marathon to raise money for Crohns & Colitis UK. I’m very prone to stitches too… being so lazy! So perhaps it will give me the motivation to get fit!

9. Meet other people with a bag
It’s one thing to talk to others online, to hear about their stories and just chat in general, as sometimes it’s easier to talk to people that completely understand what you’re going through, but it would be a whole other thing to meet them in person. I think it could be really great to see how other people continue to live their lives.

That’s all I’ve got so far! If things come up or I think of something else, I’ll most definitely write about it! I’m determined to make 2015 MY year. It’s going to be a positive year. No matter what the circumstances.

To The Guy That Publicly Humiliated Me – On My First Day Out Since Surgery

If you read my blog post about my day out at Thorpe Park, you’ll know that I was made to feel pretty embarrassed by some random guy that I’d never met before in my life. Like any other person, I wanted to feel comfortable whilst going on rollercoasters and was not going to wear clothes that restricted me in anyway. But at the same time, I’m still not able to wear jeans for too long, especially on rides; where the jeans could dig in to my stomach if pressure was to be put on them. Leggings also weren’t an option as they again don’t support my stomach. I hadn’t been clothes shopping since surgery and had been living pretty much in my pajamas, so my only option that day was my cotton, high waisted shorts – they are thick and easy to move around in, they have a chunky waist band which supports my stomach really well. I’m also able to hide extra padding under there due to the amount they stretch.

That day, I felt pretty confident. I was sure I’d be okay on the rides, I felt good within myself and I knew my bag was so well supported that the chances of anything going wrong were thin. I hadn’t even thought about my choice of clothing. I was just ready to enjoy myself!

I was wearing black tights with my shorts and ankle boots, with a baggy jumper over the top and a denim jacket. I was so covered up that when I was approached by some random guy, I was completely bewildered by what happened next. This guy took it upon himself to chase after me shouting “excuse me, excuse me!!” at the top of his voice, causing any people passing by to stop and stare. His girlfriend followed behind him laughing at me in a malicious way, as he literally ran after me. Causing such a scene. This guy was in his thirties, I’d say. Of course, I stopped, thinking perhaps I’d dropped something. I turned to acknowledge him, and with a smirk on his face, he loudly asked me “are you wearing anything under that jumper?!” red faced and slightly confused I replied “of course I’m wearing shorts..” he laughed and asked me “are you sure? I wasn’t sure if you’d forgot to put something on this morning?” I quietly told him “these are the only things I could wear today” as he continued to laugh at me, still very loudly, and walking away saying “alright I just had to check”, whilst other people watched me wanting to dig myself a hole and hide in it.

The man walked back to his girlfriend, and they both followed behind me and my friend, laughing at me. Of course my friend stood up for me and told him “if you knew the reason, you’d wished you’d never done that” but of course, he didn’t know the reason, and I wasn’t going to explain myself to him. I tried to block out what had happened and enjoy the rest of my day, but I couldn’t help but feel like people were staring and laughing at me as the day progressed.

I wish I had said something then, I wish I’d stood up for myself. But I was so lost for words! He made me feel conscious of something I hadn’t given much thought that day, I wasn’t bothered how I looked.. I just wanted to feel comfortable.

So, to the guy that took it upon himself to point me out in front of a bunch of strangers and laugh in my face, over something so insignificant, let me ask you..

photo(3)Did you ever stop to ask yourself whether it was appropriate for you to walk up to a complete stranger and mock them? Did you ever stop to question my outfit choice, and wonder if perhaps there was a reason? No? Well let me ask you this, would you ever point and laugh at somebody in a wheelchair, and demand to know WHY they put on the clothes they did that morning? No, of course you wouldn’t. Because any decent person would take note that they possibly have good reason to wear what they are.

So why was it appropriate to approach me in such a rude manor? With such negative intentions? Is it because I look like any other abled person? Because you cannot see my disability? Just because you cannot SEE a disability does not give you the right to treat me or any other person with such disrespect. That is not okay. Abled or not, it is not okay to treat any body in that way.

You are the exact example of what is dragging todays society down. Choosing to pass judgement on somebody you don’t know, purely because of what you see. The actions you chose are the actions that effect a persons self confidence.

I hope to think that if we had explained my choice of clothing that day, you would have shown a little empathy. But it shouldn’t take an explanation to stop you humiliating someone. I’m glad that you mocked me only on my clothes, but it strikes an important message that it could’ve been worse, and some people experience that. And that’s disgusting. Whether you have a reason or not, it’s never fair to be made to feel 2 inches small.

Sadly, there’s always going to be people like you out there thinking they have the right to put another person down. Thinking making fun of somebody else makes them a comedian. But in future, just think. Because words hurt.

Why My Mum Is The Toughest, Most Inspiring Person I Know – Happy Mothers Day!

So it’s mothers day and of course every body knows that their mum is the best person they know. Your mum is your rock. Your everything. But with me, my mums a little bit more, and I don’t think my mum even realises that…

10801818_870986472958490_2197632805346797480_nMy mum raised me and my sister single handedly until I was 10, working her arse off to support us, when we were put into a one bedroom flat for people with nowhere else to go after my biological dad took the house we lived in. Time passed by, we moved house, and she fought her way to get out of a different abusive relationship. It was after that we decided we were a girls only thing. “BABE’s” – Boys Are Banned Entirely. This stayed the same until I was 10, when she met her now husband and partner of 10 years, and the man I now call dad.

Anyone that knows my mum knows that she’s amazing anyway. She was diagnosed with Bipolar Disorder a few years ago after frequently being incorrectly diagnosed, putting her on useless medication. Now properly diagnosed, she has been managing amazingly. It’s hard seeing your mum so vulnerable. My mum is the strongest person I know. She seems so tough on the outside, because I know she feels she has to be, but mum, if you’re reading this, you’re doing an incredible job, you don’t have to be so tough all the time! 601214_10151304002872946_658108780_n

My mum has been my rock throughout everything, and trust me.. she’s had to be. I think it’s safe to say I’ve given her a few scares! In 2011 when my lungs collapsed and I was in an intensive care unit for a chest pneumonia caused by bulimia, my mum was there, 24 hours a day. Her and my dad sold their car, just to make sure they could afford to be with me every single day.

17882_10152816401437946_856194585703420117_nWhen dealing with Ulcerative Colitis and having my Iloestomy Surgery, my mum was there non stop, she never left my side. She kept me calm and she helped me gain back some confidence after recovery. She’s the reason I spoke out about what happened, she’s the one that taught me if people don’t love you for what you are entirely, than they don’t matter.

My youngest brother and sister are too young to understand, but my mum really fought to have them. After suffering 6 miscarriages, it was devastating to see her in so much pain. But she tried absolutely everything, even when it turned to having 9 months worth of injections, she fought to have her kids. She wanted them more than anything, she loves them more than anything! 67958_10151304008692946_1396648112_n

I have the most amazing role model of a mother. Someone that’s strong, loving and caring. Someone that would do anything for her family and friends. Someone I truly respect and hope to one day resemble just an ounce of her compassion. If there is anyone in this world that deserves to be spoilt rotten on a day like today, it’s my mum. Not just because of everything she’s fought against, fought for and is still fighting for today, but because she’s just a bloody incredible human being. I’m so proud that she’s my mum.

Thank you mum. For always being there. For making me laugh and smile when I felt like my world was ending. For always keeping my spirits up. For raising me to be strong. For being the best person I know. For never giving up. For being you. I love you.

My First Clubbing Experience – With My Ileostomy Bag!

3 double rum and cokes, 3 double vodka red bulls, 2 shots of something rather peculiar and a Jägerbomb, I’m here tucked up in bed next to my best friend with a coffee, surrounded by random slices of bread and butter and 7 packets of crisps, and I’m pretty sure I’m still drunk.

I was determined I wasn’t going out last night. I had nothing to wear to hide my bag, I had been to Thorpe Park the day before so was physically exhausted, and to be honest I was just worried about people’s reactions in case something embarrassing happened. I spent ages worrying and telling my friend I wasn’t going out, until something inside of me said “fuck it” and I went and searched through my sisters wardrobe for some clothes. I had a little bit of a crisis as she didn’t own anything baggy. And then something else made me repeat said “fuck it” and I picked out a tight skirt and heels. ‘What if my bag blows up?’ I panicked, convinced this outfit would lead to disaster, but I ended up walking into the bar with it on!

I know it doesn’t look like much, but when you’ve spent the past 6 weeks in loose clothing a tight skirt is a big thing!

IMG_1364After pre-drinking at my friends, we went to a bar to carry on drinking to ease my nerves about going clubbing. It was amazing walking into a place feeling confident, knowing no one would be able to guess I had a bag.

IMG_2954We stumbled into the club around 12am and carried on drinking. I must admit I did have to sit down for a while as I started to feel a little pain, but the pain seems to be mainly around my scarred area where it’s still healing. My friend got a little worried, but I decided we should just do more shots to numb the pain!

I danced my little legs off, and actually ended up falling over and nearly doing the splits in the middle of the dance floor. I tried to make it look like it was purposely done and strutted off in silent shame to get another drink!

IMG_1372We went out to the smoking area a few times, where we met some other girls, they were so lovely and complimented me so much. One turned to me and said I had an amazing figure, such a flat stomach. It was then that I took the opportunity to tell her about my bag, just to see her reaction. She was so shocked, and told me she’d never have guessed.

I met another girl who had actually been reading my blog which was amazing, as she has a family member going through a similar situation. It’s nice to know it’s not a completely isolated subject, and some people do have an understanding of what I have. IMG_2957

I didn’t have any issue with the toilets, my bag didn’t inflate, like I’d feared, as I was only drinking fizzy drinks! The only toilet drama that occurred was me walking into the cubicle door due the fact I was absolutely, positively fucked.

I saw some familiar faces and met some new ones, some knew, some didn’t.. but it didn’t seem to phase anyone. Of course, there was moments when I felt people were staring at me, or pitying me, and I did go into the toilets at one point to have a little, drunk cry. But I decided to man up, and actually shouted at myself, “fuck it, you can do this shit” and stormed out, feeling like Beyonce.

IMG_1363I’m so glad I decided to go out last night, it was so worth the disgusting hangover I’m enduring today. I can’t believe I’ve gone from being in hospital, to going to Thorpe Park, and now out dancing and drinking til 4am in the space of 6 weeks.  Even though the last thing I can remember is sobbing my heart out into a tuna and crisp (?!) sandwich at 5am. I am so determined to prove a bag does not have to change anything.

So girls, don’t be worried about a night out. Get your heels on and get on it. Enjoy yourself. And just keep thinking… what can I do next?!

P.S – Sophie, you’re the fucking best.

What Happens When You Go To Thorpe Park… With An Ileostomy Bag?

So it’s been 6 weeks since my Ileostomy Surgery, and my friend thought it would be a fantastic idea to go to Thorpe Park. Of course, I agreed. So today, we got up at 8am, rushed to get ready and set off for a day on the roller coasters. We spent the journey singing along to Frozen and Glee like everyone obviously does and didn’t really acknowledge the fact that this could quite possibly be a really bad idea. I mean, we did question the fact that my bag could quite possibly explode and I could really quite hurt myself but yknow what, I was so up for a good day out with my best friend that I just didn’t care. photo 1(4)

I had decided to pad myself up a bit that morning, so wore 3 layers and a denim jacket, with some high waisted stretchy shorts. As you can imagine, it wasn’t very busy as it was a week day, meaning we didn’t have to queue for anything for more than 5 minutes. I’m not sure whether this was a good or bad thing as we did slightly over do it on some of the rides…

The first ride we went on was Nemesis. This ride turns you up side down, spins you around basically makes you want to throw up. It really hurt my scar (it’s still healing). I went on it 3 times. It was fantastic. And no, my bag didn’t explode.

IMG_1307The next ride was Collosus. I kept telling Sophie I loved this ride. It was my favourite ride. It really wasn’t. I was really wrong. It killed my head. Not my stomach though! We didn’t go on it again. But again, still got my bag safely intact…

It was only 11am by this time, we really did manage to get on things so quickly. So we decided to try Swarm. We’d made the decision to try rides with an overhead bar instead of a lap one, so I wasn’t at risk of hitting my stoma. Swarm was by far our favourite ride. You’re brought so high up, and then it just twists you down, facing the ground, before spinning you round throughout the track. We screamed so loud I’m sure the people next to us probably left the park half deaf. They probably hated us for our choice of language too.

photo 3(1)We then went back to Nemesis before heading off for an early lunch. Even though I’m not on my steroids anymore, I’m still hungry as ever.. kind of sad I don’t have an excuse for being fat anymore though! Of course I went out and ordered a jumbo hot dog and fries, and of course I felt ridiculously sick after wards. So like any normal person recovering from surgery, feeling sick, with a half full bag on her stomach, we went back to Swarm! It was so dead by this time we managed to queue jump again and again and went on 4 times within the space of half an hour – twice backwards! After leaving swarm I did have to rush to the toilets. I’d stupidly forgotten my radar key (key to disabled toilet) and didn’t want to pay to hire one so used the public ladies. I didn’t mind so much as it was so quiet, not sure I would’ve been so confident on a busy day though.

IMG_1308All cleaned up, we wondered off for Stealth. This was a pretty interesting walk too, as some complete arsehole decided to shout after me “excuse me?!” over and over again. I turned around to see what he wanted, and he asked, quite rudely, “are you wearing anything under that?” and pointed at my baggy jumper. I was wearing high waisted shorts. I know you wouldn’t normally wear this to Thorpe Park, but they’re the only comfy things I own at the moment, that manage to support my bag! Of course, it angered me, and kind of upset me, as he said it so loudly and so publicly, and people passing by stopped and stared. I was publicly embarrassed for something I wasn’t even aware of, never mind my bag! I didn’t say much back, I just mumbled “they’re the only things I can wear right now”. I really wish I’d stood up for myself. And I can’t help but think, if I was physically disabled and obviously only able to wear these clothes would you have pointed it out in front of a group of strangers? I was upset and paranoid, I felt like everyone was staring at me. But I decided I couldn’t let one silly guy ruin my day, I deserved a good day out after everything!

photo(1)We got to Stealth and waited 20 minutes before going on. This one I was a little anxious about, as I didn’t know if the speed would put added pressure on my stomach. But of course, it was fine. I’d managed to go on so many rides with no issue, so I was feeling pretty confident with my bag.

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Note to self – never be too confident with anything. We went on Rush next, a big swing that just gives you a lap bar. The attendant wasn’t aware of my situation, and I hadn’t told him, so pushed the bar into my lap so hard. It was excruciatingly painful. I screamed “FUUUUUUCK” without realising, and had a whole crowd of people looking at me and laughing. It didn’t stop there either, as I felt so unsecured whilst on the ride, I ended up grabbing some random guy next to me and screaming at him “I”M NOT LETTING GO OF YOU”. He wasn’t impressed.
After that ride I was pretty tired out. I think there’s only so much you can do. We sat for an hour and had coffee, trying to settle my stomach. But I ended up just feeling too achy to do much more. We did Swarm one more time because it seemed to be the easiest ride on my stomach, and left around 3.30pm.

photo 2So, as you can tell, it was a really, really good day. The staff were so lovely and so helpful (the one’s I remembered to tell about the situation) and I was able to go on pretty much anything. My bag behaved all day and the only aches I’m feeling are the ones telling me I had too much fun! I’m so proud of myself for doing this, because I’ve just proved to myself I’m capable of doing anything – and so early too!

Oh, and in answer to the question, what happens when you go to Thorpe Park with an ileostomy bag? Nothing. Fucking nothing. Sorry to disappoint!

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My First Bag Leak – HELP!

It was 10pm last night and I was sat wrapped up in my towel after having a shower. I had my cat cuddled up with me and we were watching a film. I’d just put a fresh bag on, after having loads of trouble with my stoma whilst in the shower. I’d been sitting down for an hour, putting off getting up out of pure laziness, telling myself “I’ll get dressed in 10 minutes”… every 10 minutes later.

My cats started meowing at me to be fed, so I got up to sort them some dinner. It was then I felt some dampness on my towel. I’d been sat down for over an hour, so wasn’t sure what this wet feeling was. I looked under my towel and saw a complete mess of a bag. I got so upset. I know it’s normal, but I’m in my 6th week of recovery now and I hadn’t experienced a leak yet! I wasn’t prepared for this either obviously, as I’d only just changed my bag an hour before!

I felt so frustrated as I’ve been having so much trouble with my stoma the past couple of days, it’s been hard work having showers without my bag, and I’m at my wits end with ideas on how to soothe my skin! The skin around my stoma is red raw and every product I have used on it so far has not worked. I’m just starting up with something new and hoping for better results!

I put my dissapointment to the back of my mind and rushed around the flat to grab a fresh bag, a template to cut to the size of my stoma and some adhesive remover to get rid of the leaking bag. Once everything was ready and I was able to clean myself up a little I jumped straight in the shower. And started the whole routine all over again!

I must admit I did feel like I wanted to cry a little bit, I felt I’d been doing so well and this just ruined it for me. I guess I was just having one of those evenings where everything felt like the end of the world so having to deal with a leak wasn’t really what I wanted to spend the night sorting out. But these things happen and you just have to get over them, even though it was a little disheartening, as I hadn’t really had many problems with my bag before. At least I’ll be a little more prepared for it in the future – it’s just lucky I was at home whilst it happened!

Let’s Talk About IBD

I wanted to write something about IBD but I couldn’t work out whether I wanted it to be informative, factual, funny, or emotional. It turns out I just wanted to write something honest. I’m not sure if this is a post that many people will read, but I hope the people that do will appreciate that these are just my views, and not everybody has to agree.

I personally think that IBD is something that is not as globally recognised as it should be. I feel people shy away from talking about it because they find it embarrassing. I understand, lots of people would find it awkward talking about their toilet experiences, but for some people it isn’t just a day to day occurrence. It isn’t just a routine or something their body does on a normal time scale. IBD can take over your life. It can really, completely control you, and destroy every ounce of self esteem you once maintained.

It leaves you feeling not just physically, but emotionally and mentally drained. It can become so empowering that it consumes your entire lifestyle. It stops you going out, it stops you eating, it makes you anxious, nervous, it tires you, it disheartens any hope you could have of a normal lifestyle.

What many people fail to understand is that IBD is not just toilet troubles. It is not just constipation, diarrhea or stomach cramps… It is the thing that keeps you up all night, and leaves you heavily fatigued for the rest of tomorrow, it is the thing that makes you say “sorry, I can’t make it” to things you’ve been looking forward to forever. It is the thing that makes you late to work, that makes you stop 10 times before you reach your destination during a 15 minute drive. It is the thing that cancels your dates, because you’re too scared of what he or she might say. It is the thing that keeps you inside all day because you’re too afraid of public embarrassment. But on most of all, it is the thing that experiences too much negativity. Too many people not understanding. Too many people seeing it as an excuse.

I feel that IBD isn’t just known as a hidden disability for the fact that it is not always visible, but for the fact that we choose to keep it hidden. So many people won’t talk about it to avoid public embarrassment. To avoid misunderstanding and to avoid judgement. And I mean, that’s sad right? I don’t mean that in the “pathetic” sense, no, I mean it’s genuinely upsetting. It’s awful feeling that we live in a world where illnesses are only sympathized with when they are visible. I mean, it took me having a bag on my stomach for people to want to be there. People knew I was in hospital, yet no one asked why. As soon as people saw a large scar and bag on my stomach, they wanted to know. They wanted to understand, they wanted to sympathize. And yes, I am truly grateful for this, but it shouldn’t be this way. I mean, if I was to call in sick or cancel on someone now, people would understand that I’m recovering from what was a a very traumatic surgery. But if I was to cancel beforehand? Do you really think my boss would have understood the excuse “I’m sorry, I can’t come in because I’m scared I won’t make it in time..”?

How about we all take our heads out of the clouds and take a few minutes to learn about IBD, to learn about Ostomy’s and to learn about the dangers. It doesn’t just effect people like me, some people are incapable of dealing with it. And that’s not right. It’s not fair. We should be helping them deal with it. Treat people how you would want to be treated. Imagine being ridiculed for an illness that truly took over your life. Imagine being made to feel more alone in a world you already felt you had to hide away from.

Just imagine, and think, and learn. We should all be a little more open about IBD. Because it really would make the world of difference.

A Very Hungover Stoma & Public Toilets

Firstly, I must apologise for not posting this weekend. I’m just beginning my sixth week of recovery and I decided it was time to go out properly! I’d finished any medication and was feeling pain free so thought – why not?

Firstly, my plan was to meet my best friend for a couple of hours for a couple of drinks. A couple of hours turned into the night and a couple of drinks turned into 3 bottles of wine and some shots.. I don’t how I was still standing as the night progressed!

It was nice feeling normal again. I wore a nice dress and I didn’t feel as if people were staring at my stomach. Of course, if they didn’t know, they wouldn’t look – but beforehand it had felt like everybody could guess. I felt it was seriously visible.

After drinking the first bottle of wine I think I got a little too brave and decided we should go for an indian. Another bottle of wine consumed before even receiving our meal, I ate like a horse when it finally came! With everything going on, all the laughs, the drinks, the food, I forgot to check my bag. I was actually standing at the bar for a good 20 minutes (getting free drinks from the waiter) with a full bag! Which of course, I found completely hilarious.

We got a lift back to my friends and as we were driving home, spotted somebody we knew outside another pub. My friend dragged me in, and I had to squeeze myself through a crowd of people being careful that my overly ballooned bag didn’t accidentally explode on them!

Throughout my recovery, every time I have needed to use a toilet whilst out, I have used a disabled toilet. I was nervous to use the public toilets, as I wasn’t sure how loud things would be, and there wasn’t enough space for everything if I needed to clean myself up entirely. Without much choice on this end, I braved the public toilets. Nerves ate my stomach as I walked into bathroom full of other girls my age? What if they heard me and laughed? I entered the toilet and prepared myself for public embarrassment, but nothing bad happened. I managed to drain my bag and clean myself up without anybody knowing. I felt normal, just like I’d been to the toilet like everybody else. The whole build up of nerves was totally unnecessary!

The night went on and a couple of comments were made that did hurt me a little bit, but then I think I have to remember that not everybody understands, and they probably didn’t mean to be hurtful.

Nothing was more painful than the following day though! Why, oh why didn’t I prepare myself for this?! I woke up after 4 and a half hour sleep with a pounding headache, and the need to drain my bag. It was literally so full I felt it was dragging me to the floor as I stumbled to the toilet. This wasn’t the most pleasant of things to do at 7am, whilst I’m feeling ridiculously sick and still have a load of alcohol in my system! And of course, pretty sure I was still drunk, managed to make a mess in my friends bathroom. Great. After cleaning myself (and the toilet) up, I crawled back into bed (with a much lighter bag!) and fell asleep until 11.30am. I needed that sleep. Although it didn’t do me much good, as I still woke up wanting to crawl into a hole and sleep for a lifetime!

My friend had made soup for lunch, which I imagined to be a great hangover cure. Sat down with both her and her mum eating, my bag decides to hate on me for drinking so much the night before. It was so angry at me for drowning it with that much toxic! And it was made pretty clear how furious it was by the amount it was screaming at me whilst I was trying to eat. I ended up having to excuse myself from the table, totally ashamed. (And totally amused.)

The afternoon was spent filling and emptying my bag. It was my payback, I deserved it. I know. I was taken home and I managed to shower and get ready to go back to my flat to see my boyfriend. I had a headache and sore eyes for the rest of the night, but it was made a little easier by a huge roast dinner cooked by my boyfriends mum – my bag actually behaved during this one!

All in all, my hangover was totally worth it. I had thrown myself back into a normal situation and really enjoyed myself. I feel like I’m really getting my life back!

Showering With A Stoma

It’s crazy how much we take for granted, even small things we do on a daily basis that we’d never stop to think about. Things we feel are no bother at all, they’re just things we we learned to do throughout life.

I showered without my ileostomy bag for the first time, and although it felt amazing on my skin, it was a bit of a worry not having any cover on my stoma. My skin had been so itchy, so red and sore; so feeling warm water over it for longer than a couple of minutes was bliss. I showered pretty simply, but soon realised I was too scared to risk leaning over to shave my legs, or to stand fully in the shower whilst washing my hair, worried the chemicals from my shampoo may get into the wound. The shower I managed to have was very restrictive, and it made me very aware that I’d have to relearn a few things if I was to shower without my bag a little more regularly.

Getting out of the shower was the most worrying part, as it was very awkward to dry myself. Usually, when wearing my bag, drying myself is not an issue. This time, I had to keep a dry wipe over my stoma with one hand, wrap my hair in another towel with the other (so that water did not drip back down to my stomach), and slowly bend down to reach for another towel (also with one very awkward hand) and finally, at least make attempt to pat my self dry as best as I could. Of course, the towel on my head kept falling off making it very awkward for me to get dry, and then to make matters worse my stoma chose the worst time to start working, so I ended up having to race around my bathroom getting a fresh bag ready.

Normally, when changing my bag, I measure my stoma with a template, and draw it onto the “flange” part (sticky part) of the bag. But this time, I really wasn’t prepared! I had to roughly measure whilst standing still very damp with my hair dripping down my attempt at a dry body, and stick the bag over my stoma – which was still playing up. Of course, with me not being able to dry myself in time, the bag took time to stick down. This is a bit of a worry for me as I’m still a little cautious of leaks.

Well, that was pretty much most of the evening gone. I just can’t believe how quickly the simplest of things can turn into such a task. It’s safe to say it’ll take a lot of practice before I can shower without my bag again! I just wish it didn’t feel so bloody good!

A Big Thank You

I guess you’re going to have times where all you want to do is curl up under your duvet, hide and cry. And I guess tonight is one of those times. I’m not sure why I feel this way but it’s a feeling I can’t seem to fight away.

I don’t have much to write today. I’ve felt tired and I’ve been experiencing bad stomach and chest cramps; to be honest I’m just not feeling too great, mentally or physically.

I did however, get a chance to read through all of the lovely messages I’ve been sent. I must apologise if you haven’t had a reply. I will get there, I’m just finding it emotional, as many of you have opened up to me and trusted me with your stories. For this I am forever grateful and it is a truly wonderful feeling knowing others feel comfortable enough to talk to me. With your messages comes great responsibility, and I would like to take time to reply to each with the same time and effort you gave me. So please be patient with me!

Recently, writing has seemed to be my only route towards opening up, it’s become very therapeutic for me. I hope you’ll all continue to follow and support me in my journey, and I hope to meet some more wonderful people, who can help me spread awareness of IBD and mental health.

Thank you xxx

Accepting my Ileostomy Bag after Living with an Eating Disorder

Living with a bag on my stomach was something I did not believe I could deal with at first. Not just because of how it looked, how it felt, or because I was scared of other peoples reactions, but because I didn’t know what kind of emotional effect it would have on me. I didn’t know if it would pull me back to where I was almost 4 years ago, when I was living with bulimia. I was scared it would bring back those same feelings, that obsessive, compulsive, feeling of loneliness that fell through lack of control.

In 2011 I was admitted to hospital after one of my lungs had collapsed due to vomit being stuck in my chest. Nobody knew I suffered with an eating disorder at this time. Nobody would’ve guessed either; nor taken me seriously. I wasn’t skinny, I wasn’t ill looking. I was a normal size. Just normal. People forget to differentiate between eating disorders such as bulimia and anorexia. Bulimia for me didn’t just revolve around being skinny. Of course that was my aim, but bulimia for me wasn’t just starvation, it was bing eating eating and purging. Eating so much that I’d feel sick, trying to fill the emptiness inside of me. And then getting rid of the food I’d eaten in anyway I could. If I couldn’t control myself around food, I’d need to make sure it didn’t stay in my system. Making sure I was back to feeling empty. Because if I felt empty I couldn’t be fat. I couldn’t be angry at myself for losing control again. That empty feeling gave me back the sense of control I lost every time I binged.

I remember coming out about my fight with bulimia in 2012. I made a video for the blog I was currently writing. I talked about the effects it had had on my body, my family, and my social life. Of course, many people wrote to me and congratulated me on speaking out about it, others wished me well. Lots of people that had known me in person, had seen me in full length and had not taken the time to look deeper, judged me, mocked me, and attacked me for “talking about something I knew nothing about”.

I could not deal with knowing that people were talking about my experience in such a negative way. I deleted the video a few weeks later. I had never felt so alone. Luckily, I had a couple of close friends at the time, that knew what had happened and were there for me. But it didn’t stop me being scared of what others were saying. Feeling people were looking at me when I went out. I felt like I couldn’t talk to anyone. I felt like people would just laugh at me if I tried. I continued to struggle even after the video, after my hospital recovery, because I still felt alone. I was made to feel embarrassed for what I had gone through, and nobody should be made to feel like that. It wasn’t until I met my boyfriend that things began to change for me.

Living with bulimia is one of the loneliest experiences I have had in life. My life revolved around a pattern of binging and purging, weighing myself daily, starving myself, and looking in the mirror and seeing nothing but ugliness. I felt an aching need to change. I needed to be skinny, that way I’d like myself more. I’d feel better. I hid this from my family and my friends for two years. I don’t know how I kept it up. It was ruining me. I’d cry every night, feeling overwhelmed with guilt from the amount of food I’d thrown up just moments before. I was scared I’d never like myself. I was scared it would never stop.

And this is how I first felt with my bag. I was scared of being scared. I was terrified I’d hate myself again. After not purging since the promise I’d made to my boyfriend in 2013, I had been free. I didn’t want to go back to feeling trapped.

The first two weeks with my ileostomy bag were kept secret. I didn’t tell anyone. When people asked why I had been in hospital for so long, I avoided it. I told them I’d just had a little surgery. I was scared of that judgement I experienced those few years ago. But dealing with it on my own was not dealing with it at all. It was ignoring it. It was singling myself out amongst other people my age. Why should I hide my scars? Why should I be ashamed of the bag that saved my life? Why should I be afraid of other peoples judgement?

I decided to speak out and I’m glad I did. It has allowed me to accept what has happened. Writing has become my therapy. It has been an escape. It has also turned into such a positive thing. I’m finally helping others. I’m finally speaking out and I’m finally gaining the confidence I always longed for.

Speaking out this time, I had such a completely different response. I received nothing but positivity. What I don’t understand is…why? Why is it that it takes me having something visible on my body for people to be there? For people to take time to try and understand? For people to sympathize?

I’m proud of my ileostomy bag. I’ve fought to not let myself get dragged back down. I’ve kept my head high, and I’ve realised that I’m lucky to have the body I do. I’ve put my body through so much harm throughout my life, and it’s time I looked after it. It’s time I appreciated it. My scars show my strength, and my bag is something I wear with pride. It saved my life.

It’s funny how we judge people by what we see. Just because I wasn’t stereotypically skinny, I was an attention seeker. Not somebody who had really struggled in a fight against herself. And just because we don’t have wheelchairs, IBD sufferers are glared at for using disabled toilets. We are known as having a “hidden disability”. Why don’t we ever realise that maybe there’s more than what meets the eye?

My Ileostomy Bag Explained – How It Works

I have woken up to a rather large amount of questions this morning regarding how i live with my ileostomy bag. There seems to be some confusion as to whether I can use the toilet or not, so I thought I’d just write a short explanation of how my ileostomy bag works!

https://i1.wp.com/www.upstate.edu/surgery/images/healthcare/colorectal/ileostomy.jpgSo… during my surgery, they removed my colon. If you didn’t know, your colon is what absorbs vitamins helps compact your stools, i.e. avoiding diarrhea. This left me with just my small bowel. They created an opening in my stomach and brought the end of my small intestine out of my stomach, creating a stoma. As I no longer have my large intestine, I don’t experience hard waste. My digestive system now works a lot faster meaning my body also finds it hard to absorb nutrients. As I no longer have a colon (large intestine), I’m more at risk of dehydration and loss of nutrients. This is because one of the functions of the colon is to re-absorb water and minerals back into the body. I now add a little more salt into my diet to help replace anything lost.

The bag on my stomach covers my stoma, attaches on and collects any waste. I’ve had a few questions asking about urination, but considering urination concerns your bladder, nothing has changed on that basis. I still urinate the same.

Changing the bag is something I do every day, it is important to ensure the bag fits properly to ensure the bag fits properly, to avoid any extra skin irritation. To change the bag you must first prepare your accessories. Scissors, spray, warm water, dry wipes and of course your bag is needed. I first spray around the sides of the bag I’m wearing to pull the bag off with ease. Next up is to clean around the stoma with warm water and dry wipes. Once clean and dry, I spray around the stoma with a skin barrier spray. I then wait for this to dry, and measure my stoma with a template. Once sized properly, I draw the measured circle to a section of my bag. I then cut this circle, double check the sizing, pull off a cover to reveal the sticky underneath, and smooth onto my skin around my stoma. The end of the bag consists of velcro straps which folds up 3 times. Draining the bag just consists of unfolding the velcro, cleaning, and folding back up again.

I hope this is informative enough, I didn’t particularly want to explain everything in detail as some of you may only be interested in the basics. But if you’d like to ask anything else, feel free to contact me.

My First Month With An Ileostomy Bag – No Toilet For 4 Weeks!

Well, I did it! I made it through the hardest part of this whole experience. My first month with an ileostomy bag! It may not seem like much to you, but it is one of my biggest achievements. This month has been one of the toughest, longest, most heartbreaking yet positively fulfilling months of my life. I had good days, I had bad days, and I had days where I thought my world was ending. I’ve learned new things, I’ve missed old things and I’ve experienced a whole other level of toilet gate…

I have now not been to the toilet naturally in 4 weeks. How strange. But I still get strange urges, apparently it’s a spasm in my small bowel. Worst. Feeling. Ever. Wearing the bag is not so bad anymore, I’m not noticing it as much. Except for when it blows up to the point I’m scared it’s going to burst. Like today. During a meeting – I don’t think they noticed though. (I hope).

I’ve had to get used to so many different things, that at this age you just don’t expect to have to get used to. But hey, when life gives you lemons… make lemonade – flat lemonade in my case, as I currently can’t drink fizzy drinks in case my bag becomes one big carbonated air balloon.

I’ve now looked at the end of my own intestine over 30 times. That’s an odd fact right? I’ve seen it so many times that I’m actually starting to believe it’s talking to me. I’ve named it Nelson. Apparently everyone names their stoma, as it makes it easier to deal with. In my case, I just hated calling Nelson an “it”. I feel ‘Nelson’ is a much more appropriate name.

In other news.. I’m making the papers! I had an interview with The Sun, which is being published this weekend. I also had a very important meeting today, which holds some even more exciting news.. which I cannot wait to reveal once all is confirmed!

All in all, this month has been one I’ll never forget, never regret, and will always look back on. It’s amazing what life can throw at you, but you’ve got to smell the shit before you smell the roses, right? Literally…

My Scar Progress – Month 1

It’s been 4 weeks and my scar has been healing so nicely!

Have drawn up a little timeline below for my first month, isn’t it amazing what surgeons can do!

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Week 1 – Still slightly read and scabby, but so thin!

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Week 2 – Scabbing and redness beginning to go…

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Week 3 – Nearly all scabbing gone and fading so quickly!

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Week 4 – No scabbing at all, fading in colour… and I gained half a stone!

Breaking Down After Ileostomy Surgery

It’s important to know that it’s okay to cry sometimes. It’s okay to to stop feeling strong and it’s okay to be open with your emotions. An ileostomy bag is something people have to come to terms with in their own time; it’s not something that can be forced nor rushed. Always remember that you are human. Feeling confident with your bag is great, it’s a great boost for others as well as yourself. That level of positivity shows that you can get through whatever life throws at you.

I broke down last night. I think a lack of sleep mixed with various other overwhelming events has taken it’s toll on me. The level of positivity I have managed to maintain has helped me ignore any negativity floating around in my brain, but last night I was unable to escape that. But today, I feel good. I feel a sense of relief that I have pushed that pessimism out of my body.

Some people see breaking down as a sign of weakness, but for me it’s the opposite. Breaking down is being true to yourself. It is letting yourself realise that there is more than what meets the eye. It is knowing that you are feeling. And what you are feeling is real.

Ileostomy surgery is a traumatic experience, but it doesn’t have to be a life-changing one. It’s understandable to spring between different emotions, everybody deals with things differently. It is normal to be scared, it is normal to feel down and it is normal to question how you’re feeling completely.

It’s hard to deal with things when you feel the subject itself is pushed into such a hidden agenda, but it doesn’t have to be that way. There is so much support out there. Sometimes it’s easier to talk to somebody you don’t know, somebody going through the same experience, somebody with a better level of understanding. It’s more comforting than isolating yourself and your bag. Knowing that there are other people out there just like you is one way of stepping forward. Helping yourself through other people is a great way to build yourself up again.

I have listed below various sites and charities that represent others sharing our experience. Talk to them. Be there for them, just like they will for you.

Get Your Belly Out

Colostomy Association

MyOstomy

Meet an Ostomate

Crohn’s and Colitis UK

So if you need to cry, scream or throw things around – do. But don’t let it own tomorrow.

I’d Really Actually Just Like To Cry

I spent ages attempting to title this post. Trying to make it sound interesting and worth reading but it’s probably not. I’m not sure if it’s just night time that’s doing this to me or the fact that the later it gets the less people there is to talk to, seeing as lately I’m the only one staying up all hours of the night. I hate night time. I dread it the moment I wake up. Just because I know, no matter how hard I try, that I won’t be able to fall asleep. I just can’t. And then the tireder I get, the more frustrated I feel. And then I blame the medication, and then I blame my bag. And suddenly everything is my body’s fault.

I’m going insane from a combination of lack of sleep, constant pain and a bad diet, weighed down with an unavoidable bout loneliness. It doesn’t matter how many people tell me they’re there for me, I can’t shake off the idea that people are just pretending. That people are just taking pity on me. How long until nobody cares again?

I miss sleeping through the night and not having to sleep alone.

I hate the fact I’ve sat in bed for 4 days doing nothing but eating.

I hate feeling this alone.

I’d really actually just like to cry.

Adapting to change – By Amy Robson

Change can be a scary thing. Change can be positive. It can also be negative. Change can be the seasons. Change can be choosing to do your hair differently just because. It can be because you feel you have to. Change can be tiny, or it can be huge. Change can separate who has been there for you all along, and who never really was. Change is a risk. It can petrify you more than you ever thought possible. Change can be through choice. Change can make you or break youChange can be the day turning to night, or the sun bringing illumination to the darkness on a new day. Each day is a chance to change. Most of all through my experiences, I have learnt that change can sometimes be a one-way journey despite how petrified you are. In this sense, change is inevitable and has to be embraced, before what is the present becomes no more and is the difference between waking to see a new day or not.

Just over three and a half years ago now I had my surgery. People say that in time things get easier. I agree, or at least, things seem to get easier. Maybe this is because we learn to adapt more and learn that we must make the changes to move forward and progress. I am certainly not the type to admit defeat, but change sometimes in many aspects of life can make you feel like you are really taking on more than you can deal with and sometimes makes you want to hide in bed, wrapped tightly under the covers, in the hope that time will slow down and somehow things will not seem as daunting.

I sit and reflect on the last few years and see just how far I have come and the things I have achieved. I have taught myself to tolerate food properly again and managed to keep food consistent, although sometimes this can still be harder mentally than it seems. I can enjoy food again, and have that bag of sweets if I feel like it and not dread that pain will follow. Some foods I have to avoid, but this is a huge improvement on not being able to tolerate anything. I have visited many places that would not have been possible before. I have stood in the shower for longer than necessary just to keep warm, but for this time through choice, not because I dread getting out because the slightest bit of cold gave me crippling stomach pain and I did not know how much longer I could stand from being so weak. I have learnt a lot about my body although I am still learning when to know when enough is enough and listen to my body, but maybe that is just because I’m stubborn (and maybe a little stupid!). I have managed the last few years without any maintenance medication or steroids; besides anti-depressants and my pill I am medication-free. These are just a few of the things I could mention which I find in themselves a big achievement.

Physically, I have had to adapt to the changes inside my body and outside. I have found the biggest challenge for me to be the physical changes. Even now, I sometimes get my down days or moments where things run through my head about what it would be like to not have a permanent ostomy bag, and I wish I was “normal”, but then I wonder, what exactly does define “normal?”. I still sometimes have to shake my mindset away from just seeing my scar and bag when I look in the mirror, and remind myself that I am more than what my surgery has meant for me. I sometimes feel disgusting and worried if I have to explain to somebody new to me about my bag, but regardless of how I feel and how anxious I get and upset sometimes, why really should I feel disgusting? I am more than an ostomy bag and a scar, I am a person, and that does not define who I am. I have to tell myself that over and over some days. I see so many models and people in the media that make me feel so insecure because of how my body has changed, but then again I think the media is hugely responsible for a lot of our insecurities today in society. Ostomy bag or no ostomy bag I think this would still be the same. So many of us feel we have to live up to the ‘standards’ set by the media and all the airbrushed photographs that make people feel like that is how people actually are in reality; that that is somehow ‘perfect’. I see so many models with flat, toned stomachs with no scars or an ostomy bag and part of me inside cries to be like that, because I do not see how how I am could be portrayed as beautiful, but then I just ask myself, what is beauty? Beauty to me has many senses. But things that help to define beauty are the stories behind the people, the challenges people have faced and overcome, eyes that have cried many tears yet people still manage to put on a smile, the battle scars, the courage, the determination and the bravery. Beauty is not just about what is straight in front of our eyes at first glance. Everybody has a story. Everybody has a unique story, that has shaped them into that person they have become.

I still struggle with sitting in a quiet classroom with other people, or talking one-to-one with somebody at work and worrying about my stoma making a noise. It gives me clammy hands and makes me tense up the second I feel my stoma needing to pass wind, and I automatically go to shield what noise I can by placing my arm over my stoma. It gets me down some days that I still struggle with narrowings and I have to dilate my stoma twice a day. It makes me sad when I’m having one of those days that I cannot wear tight fit dresses without having to be more cautious about how fast my bag is filling up to stop the over obvious ‘bag bulge’ appearing like I’m pregnant on one side of my stomach. I struggle with my depression sometimes, I would not wish it on anyone. I struggle with getting my head around sharing a bed with someone and my bowel relaxing and becoming really active when I sleep and being really noisy. I struggle with the idea of sharing a bed with someone then waking up in the morning for cuddles with them and them putting their arm around me and bam! there’s this full bag of wind and waste on my stoma like a small balloon… really does not make me feel in the slightest bit attractive. Intimacy does bother me in that sense, the thought of suddenly having to empty my bag or having to attend to a leak on the odd chance it happens. I just have to remind myself that I just have different plumbing now as I call it, and that even the Queen uses the toilet and farts and no, it does not smell of roses! I guess as far as friendships and relationships are concerned, then as I have always told others, if somebody cannot learn to love and accept me for the person I am just because I pass waste out of my body differently, then they are not worth the time or space, and karma someday may visit them. All that being said, I am very lucky to have met those close to me at the moment that do make me feel beautiful, special and appreciated and have opened my eyes to being able to smile and laugh about having an ostomy bag and the little dramas that come with it! I would not deny somebody of being accepted and loved for the person they are just because they are “different” and have had to go through a whole load of crap (no pun intended!).

This post just shows that even three and a half years after my surgery, it is still a journey for me that I am not 100% comfortable with and that I am still learning about it and how to adapt in many aspects of my life. But what it does also show is that I am here to embrace it as best as I can. If it wasn’t for my bag then I would not be breathing or writing this now. I can do so many things now that I could not do for the majority of my life. I do not remember anything of my childhood besides being poorly, so surely the fact that my bag has given me my life means that I can try the best I can to make something truly incredible of my adulthood and work hard now I have the ability to keep pushing myself. I have a job that I love in a career that is so promising and rewarding that I would not have even had the energy for before. I go to college and do exams that I would not have been able to sit through before without running to the toilet or feeling too faint. I can do so many things that I could not have done before. That in itself is a gift – having my life.

Until next time,

Amy & Stacey Stoma x x

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