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You can now read posts from the Pouch Support UK Forum directly from this site. If you are a member of the group you can link directly to posts in the facebook group to react or respond. This is a private  group. If you are not currently a member, log into Facebook and submit a join request to the group J Pouch support (UK specific).

Please note that people post their personal experiences, which might not be relevant or appropriate for you. The Pouch Support UK Forum does not offer medical advice and it is your discretion whether you try any tips and recommendations posted here. If in doubt consult a medical professional. 

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19 hours ago

Hi does anyone take any vitamin supplements zinc etc if so which ones
Thanks in advance
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I take Iron supplement, and calcium and vitamin supplements prescribed by Liver team at Royal Free

1 day ago

Well I was due to have to take down Thursday 13th Jan... got cancelled. They have called to book me in for this Thursday now instead... fingers crossed its not cancelled again ๐Ÿคž ... See MoreSee Less

2 days ago

My pouch is not great to the point itโ€™s putting me off planning my longed for safari holiday. Has anyone found a safari holiday that worked well with plenty of facilities without compromise to the experience? Thanks ... See MoreSee Less

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How long can you last with your pouch? As morning drives and evening drives aren’t usually that long. The rest of day back at lodge with all facilities you need. Breakfast after morning drive. Evening meal after evening drive also helps

1 day ago

Has anyone had a baby after stage one? Where you able to go ahead with j pouch afterwards? ... See MoreSee Less

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Yes and I can still go ahead should I want to. Haven’t decided yet x

1 day ago

Hi all. After some advice please. Had reversal and pouch formation last October. Recovery went well and I was able to manage only going to loo about 3-4 times a day. I have unfortunately had to start on chemo, irrinotecan, 5fu and Avastin. Iโ€™m now going more frequently, and the pain I have around the sphincter area is excruciating. This in turn gives me urgency. I would love to know if anyone else has experienced this and if you have any solutions. I have tried creams and suppositories. Thank you. Rx ... See MoreSee Less

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Have you spoken to your chemo nurses or oncologist? I had chemo but still had stoma at the time. Hope you get some relief xx

4 days ago

Just been for my 2nd pre assessment for my J pouch slightly nervous hope I don't have to wait to long. Xx ... See MoreSee Less

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I went start of last year and still waiting.,I wonder if things are moving faster again…I still don’t know iff I’m doing the rite thing though I’m so unsure..either j pouch or make the bag permanent..I change my mind everyday

4 days ago

So I need to make the decision very soon to either make the stoma permanent and remove my rectum ect..or go for the j pouch..Iโ€™ve had like 2 years to think about this and still canโ€™t decide as some stories put me off like finding toilets all time.I just donโ€™t know what to do for the best ๐Ÿ˜ซ๐Ÿ˜ซ ... See MoreSee Less

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I’ve had a very positive experience with my j-pouch. If you work hard in the early days to train it the control can be really good. I have good and bad days but better than I was before it. I’ve had mine for 20 years and it’s still doing well. There are positive stories out there. The difficulty is that we tend to hear more about the negative experiences because that’s when people need support and have questions. We are all different but try to listen to your Drs and the challenges they would expect to be relevant to you. It’s a good thing that you have options. Best wishes and I look forward to seeing what you decide and how you get on. ๐Ÿ’ช๐Ÿผ

Best thing I ever did,takes a while to settle down but I got my life back.The way I looked at it if I didn’t try it I would have been thinking what if.Good luck

I've had my j pouch for 34 years with no problems ๐Ÿคž๐Ÿคž๐Ÿคž

Im 10 years in with my jpouch and no problems. Vast improvement on stoma/bag life. Surgery year was tough but once i recovered i was 100% sure i'd done the right thing.

Don’t be put off by al the horror stories. Life with a j pouch is a hell of a lot better than having a bag of sh@t stuck on your stomach.

On the whole, I think surgeons want to do surgery. I think if the individual surgeon had a J pouch, their advice would be a lot more valid. There are a lot a lot of limitations with having a J pouch and if your bag is fine I would stick with that. The only people I have known who only get up one time and I had to go to the bathroom are those who eat their last meal at 4 PM. There are a ton of trials and tribulations with a J pouch and I have a hard time imagining people can eat A similar diet as they did prior to a J pouch. I have a good friend who has an ostomy bag and what she can eat is a huge variety of food compared to me. Some J pouchers say “I eat anything I want “and spend a great deal of time running too and fro to the bathroom. I wish I knew this before I got my J pouch. I had a terrifically experienced surgeon, but at the end of the day most surgeons want to perform surgery. It’s how they get paid. And it is a very valid and realistic view. I was an RN for many moons.

It’s worth a try. It’s a long road I had my reversal in July . I was working a full time job by the end of august and honestly my life is amazing already . I have a few bad days but I’m so early. I would give it a go. Yeah it’s surgery that can go wrong but it’s so worth the try. No matter what you can go for a permanent stoma . After a stoma you can’t go back to try for a pouch . Then again I HATED my stoma but it did give me my life back after existing for the year before that…. I’d rather live with a stoma then colitis , however I deffo prefer my Jpouch. To be fair it is and only will be your choice . N that choice will be right for you x

Do what is best for you - don't listen to everyone's experiences only you can decide in the end. Personally I decided I couldn't live with what ifs so went for jpouch surgery and that was 24yrs ago. Had a few issues over the years but never once regretted my decision in fact I forget most of the time I don't have a bowel! Whatever you decide just ensure you get a great experienced colorectal/jpouch surgeon and keep positive. We're all here for you.

I don’t worry about toilets. I go 2-4 times a day. Best thing I ever did! I would say try it or you might always wondered what if. I have absolute full control and never had an accident. PM Me anytime x

Dont know about you, but I always had to know where toilets were when I had the bag anyway.

When the option was given to me it was you can have a j-pouch and get your life back but things may not go right so you can always go to a permanent ileostomy. You can’t go the other way. So I went with the j-pouch and if it didn’t work then I alway have a fall back. I am so grateful my j-pouch. I have had a few problems but 90% of the time I’m so happy to have a life. I don’t need to worry about where the toilet is (but you always check out where the loo is just in case ๐Ÿ˜œ) I go about 4-6 times a day, but that depends on what I eat and what I am doing. I can go all day at work and not think about it and then think oh I haven’t been all day!! It’s personal choice but I am so glad I went with a j-pouch. ๐Ÿ‘๐Ÿผ

Only you can make that decision and find out for yourself Everyone will give you different views and stories but I say follow your heart and what you feel will make you happier I for one wanted rid of my bag ASAP and yes my pouch can be a ๐Ÿ’ฉ at times it’s the best thing I ever did as it’s allowed me to live my life and not be embarrassed of my body

I had a temporary stoma for a year as I had to have chemotherapy before I could have the second operation for my j pouch. I managed ok with my stoma but I’m so glad I went for the pouch. It does take time to settle and I was going to the loo 10 times a day the first few weeks and felt housebound but gradually it settles and now I go about 6 times a day but have full control and never feel I’m going to have an accident . I usually wake up once a night but sometimes sleep right through. I do take 3 loperamide a day . It doesn’t stop me doing anything that I would have done before my operations.

I had my j pouch surgery 22 years ago & have never regretted it. My temporary stoma was hell on earth but I got through it & have never looked back. I would rather have increased visits to the loo, than have a stoma. My diet isn't as varied now, as it was many moons ago but I can eat more types of food now, than when I had UC. Good luck with whatever you decide.

J-pouch, at least u will have a chance to make it work and be ok.

J-pouch, had mine 22 years and no problems, so much easier not having to worry about the bag leaking!!!

Wotcha Joe Wright, great question, difficult quandary and lots of generally excellent comments from this community, for and against the pouch. There are an estimated 8000 pouchees in the U.K. so you are only hearing a fraction of views - very interesting as they are, and very informative and very well intended, they will only give you a small sample. So here are 4 more general suggestions to help make up your mind: - Read the best pouch survey on patient outcomes from over 5000 surgeries mainly in the U.K. it is the ACPGBI 2017 pouch survey and downloadable from the RLG website (pouchsupport.org). It gives you real data on outcomes that might inform your decision but will certainly inform on the outcomes from many patients. Hi f you are not minded to read this lengthy document then consider a quote from Mr Janindra Warusavitarne at one of the RLG Information Days a few years ago. He said that a third of pouches never present problems, the people sail off after surgery and you never see them again. Another third of pouches have problems post op which are surmountable and the person lives on with the pouch happily. Then the last third are pouches with significant problems, some of which are resolved but continue to impact on quality of life. And in approximately 11% of cases the pouch has to be removed. - talk to pouchees and ostomates (tick) - think about how you are going to feel after the surgery. If you had the stoma, is there a chance you will wonder what life would have been like with the pouch? Are you going to have negative thoughts about the stoma when things go wrong as they probably will at some stage and to some extent? Would you regret not trying the pouch in the dark hours when a stoma bag has burst for example? Conversely if you go for the pouch, are you going to wonder what life would be like with a stoma in the dark hours when you might be having to get up in the night to go to the loo? Or when you have to rush for a toilet (never happened to me but it does to others). At least with the pouch you have an option to revert to the stoma if things go wrong. But here’s my point, there are likely to be challenges with either option and your positivity and commitment in getting on with your life and laughing off the problems and accepting them as the “new you” will go a huge way towards your acceptance and contentment moving forward. - I said 4 but I’ve dried up. Oh yes, it’s also about where you are now in your life, whether a stoma would work for you or not, whether your loved ones have any issues either way, whether or not the stoma restricts you in any way etc etc. Whichever option you choose, my over riding advice is to commit to it fully as this will help you to continue to be positive with the outcomes. I know this is tough. If none of the above helps then here is a simple trick for decision making. Toss a coin, the outcome absolutely commits you to one or other option- heads it’s the stoma, tails it’s the pouch. Afterwards reflect on your feelings - It’s not the result of the coin toss that is important, it is how you feel about the result. Best wishes

I have mine nearly 30 years I have had a lot of problems with mine since day one do I regret getting it yes quite a lot of the time but I needed to give it a go it was a gamble ok it didn’t work out but I think if I hadn’t have got it I would always wonder what if worst case scenario you go back to a stoma good luck watever you choose it’s your decision

I’ve had a j pouch for over a year and it’s minor inconvenience on my worst days.

Hi I really appreciate all these comments and advice.Thank you for taking your time to write your experiences ect ๐Ÿ‘๐Ÿ‘I think I’ve made up my mind and going to go for j pouch I’ll never know if I don’t try it.๐Ÿคž๐Ÿคž

I had this choice over 30yrs ag went for a pouch. Failed after 30yrs after a longtime with problems and a great deal of pain! I had my rectum removed in 2019 and permanent stoma, and so much better no pain at all.

Good luck whatever your choice is x

It gave me my life back too. I hated my stoma. If you do decide to go for it, have a positive attitude, eat well and healthly, and keep fit. You'll sail through.Best of luck ๐Ÿ˜๐Ÿ‘

I feel your pain, I also need to make the exact same decision soon. When I first got the ileostomy, I was 100% sure I wanted the Jpouch. These days I'm 75/25 in favour of keeping the ileostomy (like you, I don't have many issues with it, the bag lasts a few days, I go swimming, camping, walks, days out, holidays etc and it has little to no impact on my life - I also love spicy food, which I feel wouldn't be an option with a JP), I was initially on-board with the idea of 'if it goes wrong, just go back to a stoma', but my surgeon said to me that it's not a great path to go down, they're big surgeries, you will lose some small bowel (which will make output looser, absorb even less B12 etc etc) and the stoma will never be as good as it is now, so it's certainly an option, but he said if I'm thinking like that, then I should keep the illy. But as crunch time approaches, it's really fking hard to make the call, knowing that there's never another option. The hands we're dealt in life eh?

Go for j-pouch. If things don't work out then you get a permanent stoma; that was my logic when i made the decision. I'm fortunate and sometimes only go once, if that during the day but obviously the start of the journey is difficult. you can do it!

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2 days ago

Covid!!

Currently got covid after testing positive last night. myself Iโ€™m fine, but my Jpouch seems to be acting differently. My diet hasnโ€™t changed but itโ€™s seems to be more active and this. Feel a lot of activity going on and during the night every toilet visit was just pure brown water. No solids or never felt any, and I have been taking my Imodium as normal. Iโ€™m not worrried but just wondering if anyone experienced the same
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Yes it did affect me. Began to think it was pouchitis and rang IBD nurse. When she rang back it had settled and she said it was common with covid.

I just had covid, pouch was OK I pleased to say

I’ve just had covid too, no change to my pouch though at all. As your going more and is more watery I would just make sure you stay well hydrated x

Real eye opener thanks for the feedback from the nurse. Not had Covid but have had the watery movement. I cancel all sugars and dairy products. It settles after a few days. If not, I then would suspect pouchitis and start the antibiotics. All the best

6 days ago

Hellloo All, hoping someone may be able to share experience and give reassurance. I went in hospital Nov 21 for my takedown surgery and woke up with my stoma still very much on my abdomen! Apparently the anastomosis had a severe stricture requiring dilatation. I had a pouchogram a week later and no tears etc so have been waiting since for another date. I have been told today I am going in on 7/2/22 for takedown (mark 2!)โ€ฆbut I am so worried about it restructuring. I think this is going to be my โ€œthingโ€ and worried what will happen if it happens regularly. Anyone here suffer with strictures and can offer advice? Thanks in advance! ... See MoreSee Less

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Is it crohns then?

After my sub total in 2019 all the investigations were consistent with my diagnosis of UC. I have asked several times if it could be crohns and I’ve been misdiagnosed but I’ve been reassured not

I have had issues with strictures for over 20 years. It’s no big deal thanks to the infamous ‘medina’ catheter. Sometimes it’s how the original surgery was done and scar tissue building up . I wouldn’t loose any sleep over it.

I had my pouch done in 1993 recurrent pouchitis it’s now changed shape as in its narrowed in the middle iv two strictures aswell I was diagnosed with UC then told cud be Cronhs colitis good luck ๐Ÿคž

Yep But I just get dilated if needed

Hi Charlotte. I had my takedown surgery in April 2019 and my surgeon told me he’d been in 2 minds about whether to go ahead with it because I had a stricture but he dilated the pouch and closed the stoma. Since then, I’ve been back in for another dilation under general anaesthetic and it had become really narrow because nobody had checked it for a couple of years. The stoma nurses have taught me how to self dilate at home now which I do once a week and my pouch function has been good since. Self dilation sounds gross but you quickly get used to it. Good luck for the 7th xx

Yes I had a very tight one discovered before takedown. Couldn’t even release mucous from my bottom when I had the stoma. You may find you have difficulty in emptying your pouch after takedown and will need regular dilations. I did self dilation at home too for a long time as instructed by my surgeon and pouch nurse. The lifesaver though for me is warm water enemas/pouch irrigation. It’s a must for me. Very simple and very effective

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