“My Experience With A Failed J-Pouch” – Reversal Surgery

By Kristy, Contributor for morethanyourbag.com

Hattie has been doing a great job of raising awareness of IBD and life with a stoma and I’m very grateful to be invited to write a post for her blog. Those that have read her posts will know that she’s recently made the decision to go ahead with reversal surgery. Given that she has been talking about reversal surgery (including the possibility of a j-pouch), I thought that it might be useful to talk about my experience with what is unfortunately a failed j-pouch.

I had emergency surgery for UC in December 2012 and was given a temporary stoma. Keeping my rectum wasn’t an option so I had the choice of making the stoma permanent or going for a j-pouch. To an extent, I felt like I was on a conveyer belt and it was a given that I would have j-pouch surgery. I obviously did give it some thought and consider whether keeping the stoma would be best, but I had pretty much made my mind up as I was being rolled in for the emergency sub-total colectomy. My j-pouch was created in June 2013 and connected in September 2013 (on Friday 13th!). The first two or three weeks with it went really well, better than expected. Unfortunately it went downhill from there. I suffered what was apparently a huge anal fissure and with very acidic output passing over it about seven or eight times a day I was in a lot of pain. After throwing a lot of different creams at it and two rounds of botox injections (I never expected that I’d have botox there!) it finally healed. It then became apparent that my output was unusually acidic and meant that I was in pain most of the time (not just when I went to the toilet). I would grimace my way through work, rush home to sit in a luke-warm bath and take codeine and tramadol to try and ease the pain. I was getting really frustrated as I just wanted to get on with my life. After nine months, I chose to go back to a stoma and to make it permanent. It turns out that was the right choice for me. Apart from a blip, when I needed to get the stoma revised, I’ve been feeling so much better and finally feel like I have my life back. My surgeon was somewhat baffled as to my experience and thinks the problem with my output may have been caused by my body chemistry being altered by chemotherapy that I had about 10 years ago (unrelated to my IBD issues). Hopefully, therefore, it isn’t an issue that many people will experience.

It might sound like this is all doom and gloom, but it’s really not. I’m very happy with where I am now. Plus, I would make exactly the same choices again (unless of course I had a crystal ball that told me the j-pouch wasn’t going to work out). After all, the numbers are on your side – the majority of j-pouches work, and work well. What I really want to do is highlight some of the issues that I found important when making my decisions in case it helps others.

First and foremost, make sure that you are happy with your surgeon and nurses. You are literally putting your life in their hands and you need to have utmost trust that they are both very good at their job and understand what you are trying to achieve. My surgeon is excellent and I am so lucky to have found him. What I really appreciate is that when I go to see him he asks if I have got back into running again – he realises that he’s there to not just make sure I live, but to make sure that I can enjoy my life in the same way that I did before I became ill. Also, don’t ever worry about asking to see another doctor for a second opinion. Despite the fact that I really admire my surgeon, I went for one. If they’re acting professionally and have faith in their own ability, they should not have a problem with it. In fact, they may well welcome another point of view, which was the case in my situation.

I found it particularly helpful to keep a diary to track what I had eaten, what I had done during the day and how much pain I was in. I used a traffic light system for pain. When I was having significantly more red and amber days it made me realise that, despite the optimism that might accompany a green day, reverting to a permanent stoma really was the best decision for me.

When you go to see your surgeon go armed with a list of questions. Write them down, because you will inevitably forget some otherwise. Don’t worry about taking up their time asking all the questions you need. You need to understand what is happening with your body and what the best way forward is in your circumstances. I’d also recommend taking notes at your appointment so that you remember everything that is said. There will be times when you’ll want to read over them to help you understand your options and the process. There is a lot to take in in a relatively short time.

Buy some Calmoseptine. Actually, buy lots of it. You can get it shipped from the U.S. using Amazon. The stuff is brilliant and really helps with burning down there – I wouldn’t have survived the nine months with my j-pouch without it.

Make sure your family and friends know what you’re going through. I did my best to put on a brave face, but it really does help if they understand what is going on. We all need support at times.

My First ‘Festival’ Experience With An Ileostomy Bag

I didn’t expect to be writing a blog about a festival, as I’ve been to a few in the past and never had a bad word to say. I didn’t actually think I’d have anything at all to comment on in regards to the day. I didn’t expect to encounter any issues. But I was so, so wrong.

One of my best friends had kindly bought me a ticket for Mutiny Festival in Chichester, which was so lovely of her. She really wanted to cheer me up and help me forget about everything that’s been going on recently. I really appreciated the gesture and went along with her to the festival yesterday. I’d worn a high neck vest and dungarees and some boots, something I knew would hide my bag should it blow up a little and something I was comfortable in.

We’d arrived at the venue and whilst waiting for others to join us, went to the pub. By the time we’d gotten back to line up, the queue was massive. So badly organised too, even the security guards and policemen commented on how poorly arranged it was. It was baking hot and we were squashed up in a forever expanding queue for two hours. It seems people had completely forgotten their self awareness and respect for others as they pushed in from the sides, groups at a time fighting for the front against those who had been standing patiently for hours. Not fun when you’re trying to protect your stomach from being elbowed by those who are too impatient to line up properly.

When we’d finally got in, I was in desperate need of the toilet. The first toilet we approached had already been completely flooded and shut off. I waited and went and watched Snoop Dogg with my friends, (the only reason we’d really wanted to go) and then went to look for some public toilets afterwards. The first set of toilets were a mess. There were no cleaners around for the whole day, and so muddy tissues (I assumed it was mud anyway – but after the amount I saw yesterday, I really can’t be sure) flooded the floor, preventing me getting my stuff out to help sort my ostomy bag out. No toilet roll was supplied once they had run out, and so it seemed I’d taken up a freelance job of handing out my baby wipes to those in need.

It was getting to the point where I couldn’t comfortably join in with everyone else because my ostomy bag was the size of a beach ball. My friend and I managed to hunt down what seemed to be the only staff of the event to ask for the use of their toilet. Considering it was taking place at Fontwell Racecourse, we’d assumed there would be inside toilets. I didn’t explain why I needed to use them, just emphasized by desperation. I didn’t feel I needed to explain, and to be quite honest didn’t want to embarrass myself trying to justify my situation. But after they denied the use of a toilet, and I’d walked away, my friend went and explained why I needed to use them so badly. They insisted there weren’t any other toilets than the ones I’d already seen, (hard to believe, what were the “VIP” using?) but a woman kindly took me over to the ONE disabled toilet across the whole festival. I don’t normally use disabled toilets as the others are normally clean enough to use, but this time I had no choice. She took me over but it was already full of others who didn’t want to use the other toilets either. The woman explained I had a medical condition to the girl at the front of the line – who didn’t take the information too kindly – and she reluctantly let me in front of her. Once in these toilets, I noticed the toilet was also nearly full to the brim with toilet roll and used tampons. I nearly vomited it was so disgusting. So instead of emptying the bag like I’d normally do, I had to take all my equipment out onto the baby changing area and completely start from the beginning with a new bag. Of course this took time. And it seemed others had noticed that too, as people vastly began shouting and banging at the door, actually threatening to knock the door down – knowing that I did actually have a medical condition, unlike them. It was absolutely disgusting behaviour. I had to leave the toilet as soon as possible, still doing up my dungarees as I left, but before I knew it, the girl behind me had swung the toilet door into my back. No body had let me pass to get out of the toilet entrance, so I’d had to climb under the barriers to get out. I was wedged in between the door and the barrier, shouting at her to stop, but the door was pushed harder into my back. My friend helped me out but I completely flipped at the girl. Her behaviour was absolutely disgusting, I couldn’t believe it.

I desperately needed a drink after that and chilled out with my friend for the rest of the day, watching the acts. But the incident had set off the day on a sour note.

By the start of the evening, two public toilet buildings had been shut off and all that was left for hundreds of people were a few portaloos.

You may be thinking to yourself “it’s just toilets”. But it’s not. When you have to take time out of what’s meant to be an enjoyable experience to change an ostomy bag that shouldn’t have needed to be because the cleanliness was so poor, alongside a group of people shouting at you for withholding their queuing time with it, it sort of makes you feel like you shouldn’t be there. And perhaps I shouldn’t have, but with the amount of live events I’d been to in the past, I really didn’t anticipate any troubles.

I’d never been to anything like this. I watched two underage people overdose on drugs before being taken away by paramedics just two hours into the event. In the heart of Chichester. Seriously? I later found out that as the queues had gotten bigger, they’d stopped checking ID to hurry up the queue. Was this worth it?Rubbish and waste suffocated every aspect of visible ground and in 12 hours not one litter picker had been in sight, and no waste bins were available. Queueing for drinks took anywhere between an hour and a half to two hours. Girls who can’t have been over 16 were begging people for pills. Had it been a midnight rave or worldwide festival, perhaps this was a little more normal, but for a small country town it was just down right embarrassing.

I’d never want to be that person that moans about a festival, I love live music, bands, the atmosphere… The acts were great, but it was just overshadowed by the lack of respect people had for the place, and other people. So many people left early, complaining about the state of the site, the respect of some festival goers and the unhelpfulness of the staff. I joined these people and went off the pub. We ended up having a 2 course meal instead. That was no festival, it was literally just an example of everything we should be aiming to repress.

I’d definitely recommend anybody with a medical condition that forces you to need the use of cleanliness or disabled toilets not to go, it’s more trouble than it’s worth. The amount of people bigging it up made it sound like Reading, but I can assure you, if Reading was anything like this, it would’ve been shut down a loooong time ago.

Or Mutiny Festival perhaps should’ve taken up the offer of help from The Fontwell Racecourse staff. I’d hate to see the look on their faces when they come back to work on Monday morning.1383782_1660777597474277_6520884371984263357_n

I’m sure many people had a great time, and of course, I had a great time spending time with my friends. But, having overheard a nearby conversation whilst in the pub, a girl summed it up right – “would they act like that at home? No. So why in the hell would you act like that in public?”

I think perhaps if they’re aiming to pull this off next year, after failing miserably this year…. They should probably have a rethink. Oh, and on the left you’ll see a picture of me smiling. And yes, it was taken before we entered the festival.

“There’s A Strong Chance You’ll Need IVF To Conceive” – The Ins & Outs Of My Reversal

You may have seen my recent blog post regarding my decision on reversal surgery; and if so, you’ll know that the subject of IVF was approached.

I was in a weird place when I wrote that post, and I think it created some confusion as to what was actually said. There were a lot of people who commented telling me about their story, their miracles and how IVF is not always a last resort.

So, just to go into a little bit of detail now that I’m coming to terms with things and feel a little stronger about what’s going to happen…

Basically, there’s a lot of theory as to what could potentially happen after my surgery. I am going to be having a straight rejoin, as they managed to leave the whole of my rectum when I had surgery for an ileostomy. So what they will do, is reconnect my small bowel to my rectum. I will be able to go to the toilet “normally” again and they said the chances are I will only go around 2-3 times a day, as opposed to the 7-8 times I empty my bag. That was fab news, as I had assumed it would be a similar situation, just without a stoma.

What I had also been told is that there is no cure for colitis. Again, I assumed that having my colon out meant the colitis had cleared. But I will always be prone to the symptoms, and there is a chance it could become active in my rectum again. I will still have symptoms such as fatigue and achey joints also, but there will not be a need for any emergency surgery. It won’t get to the point where I’m fighting for my life again.

There is a 70% chance that the colitis will flare badly again and I will become ill, and if this does happen, I will be moved in for J-Pouch surgery. This is where they take out your rectum, and create a pouch out of the end of your small intestine, which is pretty much a replacement rectum. You can then continue to go to the toilet normally.

Of course there is many risks in the surgery, and I could eventually end up with another stoma. But I am prepared for that, of course.

2dscanIn regards to IVF, I have been told there is adhesion on my bowel. This lessens the chances of getting pregnant, as it makes it more difficult to conceive naturally. I can however carry a baby and give birth. Of course, they give you the worst case scenario and by law need to inform you of all potential risks.

By having the next surgery, I will be increasing the amount of adhesion on my bowel, and there for the chances of conceiving naturally lessen again. If I do become ill again, and therefore need a J-Pouch, I’ve been told the chances are I will have trouble conceiving naturally and will definitely need IVF.

Of course, I completely appreciate that lots of people have conceived naturally, and in no way am I saying it was impossible. At first, I was scared it would be impossible for me, but after hearing all your wonderful stories, many of you have really given me the hope and support I needed. So I just want to thank you for everyone who has taken the time to send me over their stories, and any other positive information that has been sent my way.

Right now I think I’ve just got to focus on what’s right for me. I fear I’m really going to miss having a stoma, but there’s no way I can go through life thinking “what if”. For me, I’m just really excited to not have to deal with my burnt and sore skin! I’m extremely grateful though that my skin problems are the only problems I have had with my stoma, as it will leave me going into my reversal with nothing but appreciation for the life it has given me. And if I need one again, then this time round, I will be more than ready for it!


On another note, I am currently looking for contributors for the blog, this time those who have had or are facing stoma surgery, or reversal surgery. I’d love to read and post your stories for others to see. So if you have got any stories you’d like shared, please email me at hattie.gladwell@morethanyourbag.com.

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Don’t Respect Me Because Of A Disability

I’d be lying if I said we lived in a non-judgemental world. That couldn’t be further from the truth. We go through life perhaps sometimes unaware that we are judging people on a daily basis. Judging them based on what they choose to wear, who they choose to date, what career path they took, which education choices they made, you name it, we’ve judged it. And I’m not saying we shouldn’t judge people, because sometimes judgement leads to the greater good. But what I’ve noticed, since having what you would call (even though I do not agree with the term) a “disability” is that people are judging me less. Isn’t that a positive thing? You may think to yourself as you read this. Not to me it’s not. If anything I find it a little insulting.

Let me just explain a recent situation to give you a little more information on why I feel this way. I was out a few weeks ago with a friend, and we bumped into a few of his friends in a pub. I’d never met these people before, and they certainly didn’t seem like they wanted to get to know me, either. I tried to join in with their conversation as the night went on but they simply weren’t interested. They disregarded my attempts to create a new discussion and avoided as much eye contact as possible. Sneering at each other each time I opened my mouth. At first I wondered whether they just didn’t like me, or whether it was something else. Perhaps they didn’t like the way I was dressed. The initial plan was to go to a bar and so I’d dressed up a little, whereas they were a little more casual. The more I think about it, they most certainly were looking me up and down as we made our entrance. I slowly gave up trying to have any input and sipped on my drink, wishing I were as far away from the situation as possible. But then something funny happened. Whilst in a world of my own I felt a nudge on my arm. My friend had been pushing me into a conversation I didn’t even know had begun. “Tell them about your surgery” he said. I looked at him confused, as I started to catch on to that they were currently discussing. They were talking about disability. Whilst I was a little annoyed that he had associated my surgery with having a disability – for I had undergone emergency ileostomy surgery earlier this year – I took the opportunity to have some involvement in a discussion.

It’s not that I would be ashamed to have a disability and by no means am I embarrassed of my ileostomy, I just do not feel disabled. I do not see it as a disability. If anything it enabled me to live. My body is just as able as the next healthy human beings.

I watched these people with wide eyes and dropped jaws as I finished my story. All of a sudden, they were interested in me. They complimented me and told me what a brave and inspiring woman I was. They began asking me questions about my home life and career and seemed intrigued by my potential answers. It was as if I was talking to completely different people. Were these the same people that had ignored me for the past hour?

Which leads me to my point. I found it incredibly saddening how quickly these people were to change their manor. They found respect through what seemed to be pity for me. After finding out something personal about me, they became more and more interested. Would they have been interested should it have been a different story? I’ll never know. But why not take the time to get to know me? Why had my story stopped photo 1(3)you blatantly ignoring me for the remainder of the night? I feel we as a society should take more time to get to know someone, and less judging, regardless of his or her cover. Regardless of what we imagine them to be like. Because you never know what someone’s been through to be here, sitting with you today. And you never know, you just might regret not listening to their story. A story which shouldn’t have to be the making or breaking of a friendship. Respect the person, not the disability.

A Letter To My Mum, Who Fights Bipolar Disorder Every Single Day

Dear mum,

I’m sorry I didn’t tell you all of this sooner, and I’m sorry for putting you through so much worry and heartache this year. And I want you to know, just how grateful I am. Not just for everything you’ve done, not just for becoming my carer, and letting me move back home as you waited on me hand and foot; but for being my mum. For being there, even when you feel as though you can’t even be there for yourself.

You always put me first, you always forget about your own illness and focus on everyone else. You’re my biggest inspiration in life, and the best person I know.

When I see you cry, and shout and hurt like you do, unable to escape your thoughts, I never know what to do. I don’t know whether to hug you, or just sit and cry with you. I’ll never be able to understand what you fight against every day of your life, and I won’t pretend to, but I’ll always be here. You’ll always be my favourite person in the world, my best friend.

I’m so sorry for scaring you so much with my illness, and I want you to know that I’m not going anywhere. I want you to know that all of us kids look up to you. We all wish to be just an ounce like you; so loving, so caring, so beautiful.

I hate the pills you’re forced to rely on, I hate that there’s no way out for you. But I’m thankful that you’re fighting. That you’re here. I know I can’t magic up an exit and make everything okay, but hopefully we can find a side door. I hope you see how much you’re loved and how proud I am to be able to call you “mum”. I hope you realise how much you continue to amaze me, each and every day. I hope you know that people that haven’t nor even tried to comprehend the battles you face on a daily basis are irrelevant. They don’t need to understand because they don’t matter. What matters is you.

I hope you can read this and feel good about yourself, just for a moment. I want you to read this whenever you feel down, whenever you feel like you’ve just had enough. I want you to know that you are the best person I know, and I would do anything to just turn your emotions around forever. To blank your mind and fill it with happy thoughts. I’ve always got your back, no matter how many times you tell me I need to clean my room. I love you mum.

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Love,

Harriet x

P.S – I’ll always be 2 steps behind.

10 Of The Strangest Things People Have Searched To Find My Blog

I’m bed bound today and I thought I’d spend some time blogging. One of the most interesting, and sometimes most hilariously shocking parts of blogging is reading through what people have typed into their search engine to come across your blog. Some of these searches I am seriously worried for…

This is only a little bit of fun for me and no names have been stated – and don’t worry, no names are ever actually available to me through the searches, everything has always come through anonymously!

But, I felt the need to share some of these with you. I’d love to see your reactions!

1. “Sugar mummies contact numbers”. Screen Shot 2015-06-25 at 14.59.37

2. “How can I join those who do sex video?”
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3. “People having sex through the ostomy”
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4. “I have sex with bags”
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5. “Pics of gothic girls with stomas”
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6. “About life f****** me f****** stomach”
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7. “Can you do oral to your ostomy?”
Screen Shot 2015-06-25 at 14.59.00Girl overwhelmed by Disneyland surprise, sister hilariously indifferent

8. “How can I bag myself without sexual intercourse?” Screen Shot 2015-06-25 at 15.30.50

9. “Ileostomy person do sex?”
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And finally, please take a deep breath for this one and remember that everyone is different.

10. “If I cut my stoma off what would happen?”Screen Shot 2015-06-25 at 14.58.31

I’m sorry I went a little bit over board on this one but I just… I just don’t know.

What It Feels Like To Be Cut Open & Have Your Insides Taken Out

Obviously I was put to sleep during my surgery. I can’t sit here and reminisce on a memory that I wasn’t aware of. From the moment I went into the operating theater until a couple of hours from coming out, I was out like a light. And the idea of the surgery was most definitely more frightening than the actual thing itself. But when I had eventually come out, I’d awoken sooner than they’d expected. According to my parents and the doctors, I’d tried to fling myself off of the operating table. Luckily I was stopped, otherwise who’d known what else could have gone wrong! https://i2.wp.com/images.wisegeek.com/four-surgeons-in-green-gowns-and-masks-standing-over-patient.jpg

What I can tell you though, is that after the surgery, you feel weird. Not just, ouch, that hurts weird. But kind of empty. Of course, I’d had my large intestine taken out so you could say I felt a little lighter, but it wasn’t just that. I didn’t completely understand what had happened and I no longer felt like myself. I felt like it had all just been a dream, and therefore I had no need to take it in.  I’d gotten so used to feeling ill weeks prior to the surgery that I wasn’t ready for it to just be gone. It was great not having to run to the toilet every two seconds, and just being able to lay there – but it had been replaced with a whole new meaning of the word pain. My body vibrated as I forced words out of my mouth, gasping for help in a robotic, monotone whisper. My stomach stung though my scar felt numb. Not the sort of numb where you can’t feel it though. Sort of like the aftermath of intense pins and needles. It hurt to move so I didn’t even bother attempting to for a few days. I was forced to when my catheter had slipped out of place though. I’d never realised how much we take our stomach muscles for granted! The simplest tasks had become virtually impossible!

It’s odd looking down to see a big red scar down my stomach every day. It’s not as if it’s one of those scars you wouldn’t notice if you didn’t know. It’s so blatantly obviously there, in a line that tells you “I’ve been wide open!” I don’t mind the scar so much though, it’s just the image of what had happened for it to be there, sitting o prominently. I’m no more educated with the surgery than you who reads this now, either. Which is even scarier! I have no knowledge of what it looked like, how it felt or in what order things were done. And that’s slightly more terrifying, it’s almost as if it didn’t happen!

Recovery after the surgery itself isn’t what you’d expect, either. Of course I was sore. But it was more of a drain than anything else. I definitely suffered with extreme fatigue, afterwards. But again, that is one of the major side effects of having an ileostomy. Your body has trouble absorbing as many nutrients as before, and you are more at risk of a B12 deficiency (iron deficiency). It takes a while to get back on your feet and to adjust to things. But to be honest, being cut open has been the least of my issues throughout the whole experience. And it’s weird how quickly my body has adjusted to things. Although I felt different after the surgery, I’m surprised at how normal my body feels. I genuinely did think I’d notice I have such a large part of me missing. But I guess when you compare it to the rest of your body, it’s really not that bad. And when you come to think of it, I don’t think anything is really that bad. Not when you’re alive.

What’s The Difference Between An Ileostomy And A Colostomy?

I’ve seen a few confused comments regarding the difference between a colostomy and and ileostomy. Whether one is worse than the other or whether they’re just different names for the same thing. A term colostomy also seems to be more well known than ileostomy, and a lot of people get mixed up and tend to just use this term regardless of the actual name.

Although it looks and sounds pretty similar, a colostomy and ileostomy could not be more different. A colostomy is an opening of the large bowel onto the surface of the tummy (abdomen), whereas an ileostomy is an opening of the small bowel onto the surface of the abdomen. You wear a bag over the opening, to collect the waste matter from digestion that would normally be passed from the body as a bowel motion (stool).

You can also remember it from the ‘colo’ and the ‘ileo’ parts of the words. The longest part of the small intestine is called an ileum. And the colon is the large bowel. Forming words colostomy and ileostomy.

As I have an ileostomy, I had my colon taken out, but they a part of my rectum so that it would be possible to have a reversal in the future. I’m not too sure what happens with colostomies. It’s not really my grounds to talk about it and I don’t want to google it and end up misunderstanding, but to my knowledge, it seems that you still have a small and large bowel.

I think it’s important that you take in the differences.. and notice that colostomy and ileostomy are very different. I’ve had moments where I’ve found it a little insulting that it wasn’t looked into a little more, for example when a journalist was writing an article about me, and started the article writing ileostomy and finished it saying I had had a colostomy – which of course are two different procedures. You wouldn’t say you had ulcerative colitis if you had crohn’s, would you? It’s no big deal, but I find people will open up to you more and become a little more accepting when others are taking the time to learn and acknowledge.

I’m no doctor and I certainly am not wikipedia so if you did want to look further into it, please do, because I’m not great at explaining things. And it can be quite hard to explain without writing it! So I hope I have simplified it a little, and you now know the difference! I still don’t understand what’s gone on with my body half the time…. Do I have ANY organs left or??

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Needed a change… So I Dyed My Hair Blonde!

I’m not sure which thing happened to prompt me into changing my look, whether it was my outburst of awful roots or sheer boredom – but either way I’m pretty happy with the way it turned out! I know it’s not in your face blonde, I chose a dark blonde, something a bit more subtle!

I decided last minute whilst in town that I wanted my natural hair colour back. Believe it or not – that’s blonde! I haven’t had natural looking hair in so long, even when I was younger I’d bleach it. It’s crazy how much a hair colour can change the way you look, and I haven’t felt this much like myself in such a long time! It’s scary, every time I look in the mirror I feel like I’m looking at my 12 year old self! Okay that sounded kinda weird..

I’ve probably damaged my hair for the foreseeable future with the amount of dye I had to use to get rid of the red, but luckily my hair’s very thick!

It’s strange how doing something such as dying your hair can make you feel so positive. It’s given me a new sense of confidence. Which is why I’ve decided to write about it on my blog today, not just to tell you what I’ve been up to but to demonstrate how the littlest things can make you feel better about yourself! I’m not saying anybody should change how they look to feel good about themselves. But if changing something about you makes you feel better about yourself, why not do it?!

I’m currently trying to make a change in myself, as well as my image. I want to be healthier in myself and more active. I’m going to be eating better and focusing on more exercise. I don’t think I have an excuse not to anymore!

I think I’ve come out of my depressive stage now, haha! I’m feeling a lot better and more ready to start working on new experiences to write about. I have some really exciting things coming up soon, and I just can’t wait to share them!

I just want to say a massive thank you to those that continue to read my blog. Sorry that this wasn’t really a topical blog post – but I just had to show off the product of 2 days wearing clingfilm on my head!

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What It’s Like To Have My Boyfriend Clean Me Up Every Day

If you read my previous blog post about having a bad week, you’ll know that recently I’ve been having some issues with my ostomy. So much so that it has been hard to rely on just myself to sort it out. Since I’ve been having trouble sizing it, alongside output problems, it has become a little more unreliable than before. Meaning that when I’m cleaning around the area, I never know when it’s going to be safe to leave it bare to place my ileostomy bag on. At the beginning of the week, it was a case of my boyfriend forcing his way into the bathroom because he could hear how upset I was getting. He would help no matter how frustrated and embarrassed I got. I mean… nobody wants their partners to have to help them clean you up, do they?! Now, it’s become the norm for him to come in with me when I go to change it every evening. He sets up all of the equipment, wets the towels, and helps sort me out.

He’s been great and made me feel a little more at ease with all the negativity that’s been sinking in these past weeks. And it’s nice having him there. It’s weird of course, I’m so used to doing it all myself. I do also feel very upset with the situation.. because it feels like I’ve lost control over the one thing I had control over. I mean, I have no control over my digestive system anymore. I can’t determine when something’s going to happen. Accepting help for the one part you’re meant to be okay with is the hardest part of all. Changing the bag was one thing that was down to me, my decision. And to have to rely on someone else for something so personal, feels a little undignified. I was worried he’d be put off me after seeing what he had.

I’m lucky to have somebody there to help me. And I do appreciate everything that he does. But I just wish he didn’t have to do that, and didn’t have to see me in such a way. But, that’s life. And I guess to get through these sorts of situations you have to feel uncomfortable to get comfortable.

I have had an order of uncut bags from SecuriCare which have already begun putting my skin at ease, so I’m hoping over the next few weeks I’m able to gain more control over my body and become a little more independent. I’m looking forward to being able to use the bathroom by myself for a change! I know I’m not a burden or anything but I can’t help feeling like one sometimes. I just hate to rely on people. Especially for something that should be so easy.

I hope I haven’t put off anyone who may be needing or is questioning having stoma. There has been a lot to thank it for over the past four months. But I do feel the need to write when I’m having a bad time. It’s quite therapeutic but I feel may also give people in my position something to relate to. It’s nice to have something to relate to, I think.

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I’ve Gained 2 Stone Since Surgery!

PicMonkey CollageThese pictures show me just after coming home from hospital and me now. It wasn’t until I compared these two pictures of my legs together that I realised just how much weight I’ve put on since surgery! I decided to use the pictures of my legs because they are where most weight has been put on, although I have put on around my stomach and face, also.

By no means am I posting these pictures to complain and call myself fat – I know I’m not – I was just shocked at the difference in just a few months. Of course, the first black and white photo shows me underweight and unhealthy. But I’m really hoping to not put on too much more weight. Although I started gaining from the steroids, I cannot blame them for this! I have been eating like a pig and not exercising at all. And I probably won’t exercise either, lets be honest. But I think I should probably start eating better. If I decide to have further surgery I’m going to need to be healthy enough.

Anyway, these pictures are also a little bit of a revolution for me. A couple of years ago, I would’ve cried at these pictures and used the black and white photo as an “aim” as I abused my body. Now, I can laugh it off and realise it’s just a little bit of weight. And that’s a great feeling… to be able to laugh off something I once feared. Although, I have always had a bit of trouble with losing weight. I hate dieting. And I’m rubbish at following any sort of meal plan. Also, I just cannot be bothered to spend the time counting calories etc. I want to be healthy and stay slim but I find it hard not to indulge in chocolate… on a nightly basis. But – I’m willing to stuff it back in the freezer if it makes my body feel better! I just don’t really want to be putting anymore weight on, not in such a short space of time.

So.. if any of you have any tips on how I can do so, please… let me know!

Please feel free to comment any healthy eating techniques that have worked for you!

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.

7 Things You Probably Didn’t Know About Bulimia

Some of you may know that from 2010 to 2013 I suffered quite badly with bulimia. I was always of average weight, so no body really looked at me any differently or noticed. It ended up getting quite bad, to the point where I was hospitilised at the end of 2011 with pneumonia and a collapsed lung – caused by the vomit that had been trapped in my chest area from purging all the time. I made things worse in the hospital by refusing to eat, with them nearly having to enforce tubes to ensure I was being fed. Of course, I realised I’d have no control over what they were feeding me, so I reluctantly agreed to eat – at least that way I’d know how many calories I was taking in.

I had a chest drain put into my right lung which drained 2 litres of fluid. I was put into an intensive care unit over in Southampton (a far way from home at the time) and my parents had to sell their vehicles to afford to be with me every day. I look back and can’t believe how selfish I was.

When I eventually left the hospital, I returned home and really isolated myself. I was housebound for a while, missed out on lots of college and also lost a few friends along the way. It was only then that other symptoms started appearing, such as my skin becoming absolutely awful, my nails brittle, and clumps of hair falling out all over the place. I remember blocking up a few hoovers! I have lovely thick hair too, so that for me was the worst of the lot.

Even though all of this had happened, I couldn’t stop purging. I carried on throughout relationships, causing people unneeded stress. I feel guilty for putting these issues onto other people.

With the support of my family I gradually began to stop, I’m not sure why, I think I just saw how much I’d hurt everyone and how much everyone had done to try and help me. Me and my boyfriend at the time had broken up because of the amount of pressure I’d put on him, and I think I realised I was just pushing people away. I didn’t want to be selfish anymore. It didn’t completely stop, but things got a little better.

It didn’t stop until I met Angelo, who I have been with for 2 years now. I opened up to him about everything and he supported me and made me swear I wouldn’t do it again. I really, really liked him at the time. I knew I loved him so early on. And I didn’t want to lie to him.

Of course, it wasn’t as easy as “ok I won’t do it, I promise” it was a long battle. A battle I can finally say I have overcome. Angelo really appreciated my body and I wasn’t used to that. He started making me feel better about the way I looked. And to this day, I’ve kept my promise. There have been times when I’ve wanted to, when I’ve been close. But I won’t break a promise.. ever.

Anyway, there’s a few things that I went through with people not believing me, laughing at me, and actually vocally attacking me because I wasn’t stereotypically ill. And, of course there’s more to the story on a much deeper level, but I don’t really think it’s necessary to go into detail – I thought I’d just give you the basic idea, before I wrote the 7 things you may not know or understand about bulimia nervosa. So, here’s a few things you may want to take in. Because your actions may affect somebody suffering, because you don’t fully understand. Why push people further away from opening up when you have the chance to help?

1. Bulimics aren’t necessarily skinny. A lot of sufferers are more of an average weight. If somebody chooses to open up to you about their eating disorder, don’t be so quick to judge. In fact, don’t judge. I hate how people seem to think that you have to be extremely underweight to have an eating disorder.

2. It is not all about weight. It can be about control. For some people, food can be the one thing you are able to control when you feel everything else in your life is happening unwillingly. It can be about self esteem, it can be caused by trauma. There are plenty of different reasons that result in bulimia nervosa.

3. You don’t always purge after every meal. I can’t speak for everyone, but being bulimic doesn’t necessarily mean to purge every meal. Purging can be a way of relieving guilt, so you may just purge the foods you consider to be bad.

4. You can’t always spot it. Media tells you we have bad teeth from all of the vomit and yellowing skin — basically doing everything they can to shock you. I suffered for years and have white teeth and nice skin. I’m sure in the very long run it may have been different, but it’s not always the case. Don’t just look for these signs. And don’t use them as fact. If somebody chooses to speak to you about it, please don’t disregard the seriousness of it just because they don’t fit the “symptoms”.

5. Bulimia can cause a variety of different illnesses. When I was in school I was hospitalized with a collapsed lung and pneumonia. This was actually caused by vomit that had gotten stuck in my chest area for quite some time and had spread infection, and caused one of my lungs to collapse. When I finally spoke out about what had happened, no body believed me. I even had one girl at a party come up to me and tell me “your words offended me, because you have NO idea what an eating disorder is” alongside other people nastily backing her up. They didn’t believe me because I wasn’t extremely underweight, and I they obviously had no idea that my collapsed lung and pneumonia was caused by me being bulimic for years.

6. Bulimic people aren’t vain. I didn’t throw up because I lead a life of vanity. I threw up because I felt it was the only control I had in my life at that point. I did it because I was angry at my body… I was angry at myself. I threw up because I believed it would eventually make me happy.

7. It’s not as simple as “can’t you just stop?” Recovering from bulimia isn’t just about not throwing up your food. It’s about learning how to eat again, how to eat in moderation without binging, how to socialise with friends and family, how to eat in front of other people, how to prove to your loved ones you’re not using the bathroom or running the shower just to purge.

2011 - 2014

2011 – 2014

My Ostomy Won’t Limit My Underwear Choices

I was out shopping the other day whilst my boyfriend was at work, just looking for clothes and makeup really. I’d spent 2 hours so far looking through shop after shop, trying on various different pieces of clothing and having absolutely no luck with anything. Everything was either too tight, too loose or just didn’t look right. Frustrated, I went for coffee and some breakfast to call my friend to see when he was coming to meet me. He’d said he’d be another hour. I sighed, and wondered what on earth I was going to do until he got here (an hour normally meant 2 in his case).

I thought about what else I could possibly attempt to shop for without getting annoyed. I’d already bought new makeup and am not really a jewelery person. I’d got a new notebook and already bought all My Chemical Romance’s old albums (yes I was one of THOSE kids). And then it hit me… underwear! I have never, ever, EVER shopped for underwear. Not once. Unless you count those times your mum buys you them as a present because she realises you’ve been wearing the same sets for the past 5 years? (All clean of course!!)

I didn’t really know how to go about this. And to be honest, I doubted I’d find anything I felt comfortable with. I anxiously wondered around shop after shop noticing that nothing had been designed for people with an ostomy. I knew this would be the case, but there was still a little bit of hope I’d find something. I had seen one underwear set in New Look, it was so pretty! But I was certain it wouldn’t look right. I was trailing around for something high waisted. I planned to wear something for my boyfriend when he got home from work. I wanted to look nice. But how can I pull off anything “sexy” with an ostomy?

It was getting late and shops were starting to close down, and I still hadn’t found anything. I felt like I wanted to cry. Everything was tiny and designed for those with nice tummy’s they wanted to show off.

I left the shop and was about to head off to wait for my friend before I had a thought. A thought that changed the rest of that day.

“You write a blog on body confidence and embracing your body. You write out to thousands of people and tell them to love yourself. What a hypocrite you would be to shame your body over a pair of underwear that YOU feel isn’t designed for you. Who says it’s not? Who says you haven’t got a nice tummy? You? Do you think those scars that saved your life deserve to be shamed and hidden away? No. Now get your arse into gear and feel good about yourself”.

And with that one thought, I headed over to New Look and picked up the pretty bra I’d first seen. And underwear, too of course!

Photo on 02-06-2015 at 17.19

I’m really angry at myself for putting myself down that day, and letting myself feel so negatively towards my body. But I’m so grateful I was able to step out of that so quickly. I felt really positive for the rest of the day, and waited for my boyfriend to finish work – in my new underwear (makeup done and everything)! And it’s safe to say he absolutely loved it. (I won’t go into detail – don’t worry). But there, it just goes to show that you never know until you try. From now on I won’t let personal negativity limit my choices. I will overcome every hurdle that lays be for me and remember that if you don’t do it, you won’t overcome it. And no, I’m not trying to give a Shia LaBeouf ‘Nike’ inspirational speech here…

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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What Does My Boyfriend Think Of My Ileostomy Bag?

There have been some questions in the past regarding how my boyfriend feels towards the fact I now have an ileostomy bag. And I hadn’t really thought of writing about it before, because to be honest, I wasn’t quite sure there was just one sum of thought for him. As my mentality has progressed – so has his. I mean, when you live together, your emotions bounce off one another 24/7, and if one of you is feeling down the likelihood is that your partner will feel somewhat succumbed to that.

It’s been an emotional ride for the both of us and I’ve relied on him (as well as my blog) to make me feel better about myself.

We’ve been together for a long time but one of my first thoughts after ileostomy surgery was “is he going to leave me?” I didn’t know if he’d be able to cope – back then I was a complete mess – and I didn’t know if he’d still find me attractive. I didn’t know if intimacy was going to become awkward, and actually, I didn’t know if he’d ever want to be intimate with me again. I was convinced he’d only stayed with me because he felt too scared to leave when I was in a position like this.

I made the decision whilst in hospital that in order to keep my relationship the one normality in my life, I’d hide my ileostomy from him. I wouldn’t let him see it. Maybe that way he wouldn’t look at me differently.

I made him leave the room when the nurses would come to change my bag, with my mum guarding the door until she’d finished. I made sure not to take my top off around him or expose my stomach. I was certain that in order to still be pretty to him i’d have to be fully clothed at all time.

How was I going to carry out this level of pretense for the rest of my life?

Well… it turns out I didn’t have to.

I had moved back home with my parents whilst my mum was my temporary carer, but I decided I wanted to come back to my flat to spend a night with my boyfriend. I felt a lot better physically and was able to move more, my mum had packaged up a numerous amount of pills and I was all set for the next day. At that point I wasn’t changing my own bag – I still didn’t want to look at the area itself. So, before she left after dropping me off, she changed the bag for me. I expected my boyfriend to just leave the room, like I’d usually ordered. But he just stopped, and asked my mum, “do you mind if I stay? That way I can learn what to do if she needs me”.

I’ve never felt a deeper sense of relief.

He wanted to learn. He wasn’t scared. He didn’t fear me. He just wanted to help me.

It was at that point that I realized I was being stupid. I’d scared myself out of acknowledging the fact that maybe he didn’t feel the way I thought.

My bag hadn’t changed me, it hadn’t changed the way he looked at me. He wanted to see. He wanted to learn. He wanted to understand. And that had to be a good sign, right?

It definitely helped me. It showed me that if he could accept it so easily, so could I. If he wasn’t afraid, neither was I.

We’ve had our ups and downs but he makes sure to tell me I’m beautiful, and how much he loves me every day. To him, I’m the most beautiful girl in the world (which is crazy right?! Look at Jennifer Lawrence!!!).

You may question how he feels about intimacy, I mean acceptance is one thing but being romantic with your partner is another. But, to my surprise, he actually asked me to take my top off! And one time, I’d done it without asking. Lovingly, he smiled and said, you haven’t got one on for once! It was a great feeling to not have to hide away. It’s great just to be made to feel good about myself.

So… what does he think of my ileostomy bag? Nothing. And I think that’s exactly the way it should be. He talks about it as if it’s a person sometimes and even has a name for it! But that’s about it. When he’s looking at me… he’s looking at me. Not my bag. It’s not uncomfortable nor awkward no matter what the situation. And that’s exactly what I need.

I got to spend valentines day with my boyfriend!

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.