I’m Having A Really Rough Week – Someone Take This Pain Away!!

I’ve been sat in the same position in the same place for the past week, because I simply cannot do anything. I’m not sure what’s gone wrong but the past 7 days has been nothing but aches and pains followed by a whole heap of frustration. I’m really just having a bad time recently with my ostomy. I’m pretty sure it’s shrunk, and as I made the silly decision to order all my bags pre-cut, each bag is leaving a certain amount of skin exposed; meaning my skin is burnt, red and sore. From the soreness leaves me having few options for clothing, I haven’t been able to wear anything bar underwear and pajamas lately – anything tighter has me wincing in pain.

Trying to place the bag in a way that the least amount of skin could possibly show means I’ve been changing it countless times. One day I actually amounted up to 10 bag changes. From the frequent skin pulling my abdomen feels tender and my scarring feels swollen. It doesn’t help that I’m a little obsessive about the cleanliness of my body. And knowing that the bag just isn’t in the right place has left me more exasperated than I can even begin to describe.

I feel completely broken this week, each evening leaving me in tears of infuriation. I don’t care how silly this sounds to you, but this week has really made me question my decisions regarding the option of reversal. You see, changing the bag was probably the one control I now have regarding my digestive system. And I just feel it’s been taken away from me. I can’t even keep my skin healthy, for gods sake. I just want to be going out and doing things instead of sat here on my sofa feeling sorry for myself!

I feel very lucky to have had my boyfriend with me the past week. He’s been there to help clean me up and change the bag with me. He’s taken me shouting and screaming at him and really looking after me. But it’s also taken up hours of the evenings we have together, and some of my self-esteem with it. I’m filled with paranoia over leaks and generally just not feeling myself at the moment.

I’ve let myself get so upset over these frequent bag changes and bad skin, but I mean, when you’re having to repeat the same procedure of taking a bag off, cleaning, wiping, drying, and placing a new one on up to ten times a night, you begin to wonder what the hell you did to deserve this shit. No pun intended.

I’ve placed an order with SecuriCare to send me some of their lovely LBF wipes to help heal my skin, and they have also given me next day delivery of uncut bags, an amazing service considering there can be up to a 2 week wait with other services. I’ve also got a hospital appointment on Wednesday just to get it all checked out.

I’m really hoping my body begins to heal soon, as I’m not sure I can take another week living in my PJ’s!

I’m sorry this post hasn’t been humorous, happy, educating or exciting. But sometimes, that life.

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6 Times My Ostomy Bag Has Been An Inconvenience

I’d say probably one of the most embarrassing things for a lot of people is farting in public. Just imagine, everyone staring around thinking “was that you?”, red faced hoping nobody realises you were the culprit. But, I mean, at least when you have a fully working digestive system, you are able to control it. But when you have an ostomy bag? You can’t. You just can’t. Most of the time I have absolutely no idea when it’s going to happen. And I mean, when I’m at home I can just laugh it off and blame it on the bag. But there have been a number of times when it’s just too damn awkward to talk about it. And these are just a small few of those ever embarrassing, awkward, inconvenient moments that are just too uncomfortable to remind people that flatulence is funny.

1. When in a meeting – I had a meeting with a whole board room of people to discuss my blog contract, and it seems my ileostomy wanted to make it’s own entrance, and managed to make it’s presence extremely clear with a whole load of noise. I did have to apologise beforehand and say “yeah it might do that during this”. All in good humour.

2. When out for dinner – I mistakenly ordered chilli con carne one time when out for dinner with my family. Watching someone run to the toilet holding the whoopie cusion under her clothes every 10 minutes when the toilets were upstairs, through the crowds of other people pleasantly eating their dinner, is not something I’d class as evening entertainment.

3. When wearing tight clothesphoto(5) in public – I mistakenly decided to wear a tight midi skirt on a train journey, forgetting how long I’d be on a train with no toilet. It’s safe to say people were questioning what I was hiding under that skirt.

4. During sex – Normally, intimacy is absolutely fine. But there have been the rare occasions where I’ve had to stop halfway through and say “I’m so sorry but I’ve really got to go and empty my bag” and also apologise for the ridiculous amount of noise it’s deciding to make from being pressed down on too hard. Just imagine standing on a balloon. Yeah.

5. When doing a presentation – I have a presentation to a support group of people, and to be quite honest with you I’m so glad I had a microphone to overshadow the noise it was making! Luckily everyone was in the same boat – so was more than understanding. I’m afraid I wasn’t taken very seriously though!

6. During a driving theory test – Obviously, you have to be silent during your driving theory test, otherwise you’ll be disqualified. It seems my ostomy is a bit of a rule breaker and went all out to make a point. I just hope people were too distracted by their nerves to notice. Although I’m sure it was pretty hard not to.

Last Night I Wished My Ostomy Away

I wished my ileostomy bag wasn’t real yesterday. I wished it wasn’t there, I wished it would go away. I knocked it whilst pulling down my top and just broke down. I’m not sure if I was overtired or embarrassed by the current situation – I’d blocked the toilet with baby wipes after cleaning up (apparently you’re not supposed to flush babywipes) – and my boyfriend was annoyed about it. He told me I shouldn’t be flushing babywipes down the toilet, whilst I frantically got worked up and tried to explain that babywipes were the only thing I could use!

It was really late, like 3am, and I hid under my duvet in bits whilst he sorted the bathroom out. I felt so bad, but he’d taken control of the situation and I felt too embarrassed to stay in a room with him! I felt really upset. I thought I’d annoyed him and I felt like it was all my ileostomy’s fault. Writing it now, the situation sounds so silly. But last night it really got to me. I felt ashamed of myself, that I couldn’t even do a simple thing like use the toilet without causing a scene. Hiding in the darkness beneath the covers with my hands over my ears I just sobbed and sobbed. I just wanted to feel my tummy the way it used to be. I cried harder as my hand moved down my stomach as the bag rustled against my palm. I imagined my body a year ago. My stomach neat and scar free… bag free. And I just missed it. I missed seeing the whole of my tummy in the mirror. I missed not hearing any rustling as I moved about in bed. I missed being able to shower without being cautious and I missed not having these baby wipe situations.

Last night just bought back my whole experience in the hospital. The constant screaming for the nurses, being so high on pain relief I couldn’t even speak properly. Crying out in pain and being told I was a couple of hours from dying. I just couldn’t get it out of my head. I can’t describe the way these thoughts make me feel. I don’t think I’ve given myself time to deal that experience. I find it too hard to, it’s too emotionally draining going over and over it. But it’s something that creeps up when I’m feeling at my lowest, and I just can’t seem to shake away these memories. And that’s what makes it worse. They’re memories. They were real at one point. It’s not a bad dream that a cuddle can sort out. It’s not a bad thought you can shrug off. It was reality once upon a time. And for me, it’s somewhat haunting.

And I think I’ve come to realise that maybe I’ll never truly love my ostomy. The fact that a touch of my ileostomy or an embarrassing experience can bring back such torment at anyone time, scares me. I can accept it, and I can deal with it. And I can like it. I can appreciate the fact that it saved my life, and can deal with is visually. I can write about it publicly. I embrace it. But I’m just not sure I can love it, because it’s not something I’d ever have wished for, nor would I wish on anyone else.

I feel guilty for feeling so negatively towards my ostomy. I know it saved my life and that without it, I wouldn’t be here. But I also just feel so angry towards my IBD, Ulcerative Colitis. It nearly took so much away from me. My job, my relationship… my life. And I’m allowed to be angry at that, aren’t I? I’m angry at the people that didn’t listen to me, and could’ve saved me from surgery a long time ago.

I don’t want anyone to feel disheartened by this post. Nor question my motives. I’m merely just having a bad couple of days.  And I would never disregard the fact that I think my ostomy is a beautiful, life saving thing. And I am so grateful that it has given me a second shot at life. And I’ve come to terms with that fact not everybody will accept the change in my body. I’ve accepted my body. And that’s okay. But sometimes, I can’t help but miss my old one. Maybe this is because I never appreciated it beforehand. This whole experience has made me reflect on all the time I spend pointing out the flaws I could see within myself. And now, as I look back on those moments, I regret them. I regret not realizing my body was fine the way it was. I hate the lengths I’d go to to feel better about my body. And I guess I hate that I’ll never get a chance to accept my body the way it was… because no matter what I choose to do in the future, it’s never going to be the same.

I feel nervous posting something like this on my blog. I don’t want you to think I’m contradicting myself, or being hypocritical. But this blog is my diary, my way of dealing. And it’s important for me to write every ounce of how I’m feeling, so that I can reflect on it and move on from it. And this is why I’m writing today, to move on from last night. To accept that I am going to have nights like that. Nobody can be completely happy all the time… can they?

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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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