“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://i0.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.