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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1 day ago

Hi guys, just a few questions for anybody that had jpouch removed and gone back to a stoma.

1 Was the operation as big as the first operations when colon was removed and pouch created?

2 do they need to open the operation scar fully again?

3 how was the recovery?

4 do you feel better going back to the stoma?



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It was an open surgery for me as I have alot of adhesions inside. I was in hospital for 5 days post op then was supposed to have six weeks off but got ileus. Was off 3 months in total. Been much better since, no longer tied to toilets. Stoma has been better than first time round. I have a bag etc that works for me, which took some working out but all good now x

I am having mine done end of July so very interested!

I’m having this done. On the wait list. Surgeon told me my scar will be opened again. He didn’t want to confirm recovery time etc as I don’t think they can until they open you up and see how your pouch looks and scar tissue etc. My pouch is 21 years old and he thinks I will probably have a fair amount of scar tissue. My pouch has been rubbish lately and I want it removed but I’m also quite petrified of the surgery, recovery time and managing a stoma again. It’s typical that the last week or so my pouch has been behaving itself! 🤦🏻‍♀️🤨

I had my pouch removed in 2017. It was as major as the first one. It took 6 hours due to complications in removing the pouch. I was back on my feet within a week and back at work in 9 weeks.

I was defunctioned by surprise on March 6, 2021. Still have the pouch in pelvis... complications keep going off. Anal anastomsis chronic leak with pelvic infection keeps abscessing. Setons - holes in my butt - what a nightmare. I would say that if you have to defunction (stay on a stoma with the pouch to cool inflammation first), the defunction is 'noticable' right away when you recover from the actually operation procedure in that if you're not sleeping, if you have nighttime accidents - all of that goes away immediately. I needed way more water after defunction and also, I get nutrient dehydrated faster... need more salt and potassium. I haven't had my pouch removed yet as the docs were thinking about ways to save it and then I found a new doctor with more revision experience so I can't speak for the removal part but as far as defunctioning... its a quick improvement if you're not sleeping, have nighttime seepage, have a cranky pouch that doesn't like certain foods (I eat EVERYTHING on a stoma and binging on nuts doesn't feel like I'm pooping broken glass)....

My daughter has been told that it will be a laparotomy (i.e. big incision) and that the j-pouch has to go. She is seeking a second opinion from someone who specialises in minimally invasive surgery, so I am not sure whether the need for a laparotomy is non-negotiable or whether it depends on the surgeon.

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11 hours ago

Hi hope ye all well…I had my reversal surgery a week today I’m doing very good especially during the day only had to empty pouch twice yesterday during the day…But at night time when I lie on my side I seem to get a bit sore in my bum feels like I have to go toilet all the time with pressure but I can hold it only I end up going because of the discomfort and I seem to get very gassy but I can pass gas without any problems…But I seem to end up going more at night time…Does all this stop after time???

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What time do you finish eating? Could be what you are eating if you are having a supper? Maybe it’s the sleeping position?! I can only pass gas in this position 😁

Hmmm, a few things to unpick here Michael Jones. First of all, this sounds like a very good outcome (frequency during day), so let’s not ignore that. Your pouch has lost its peristalsis, the orderly muscular contractions that push waste towards your bum. Think of a football with random contractions and a mix of semi solid and gas contents. Occasionally you might get an alignment of the random contractions which might push waste to your bum at night and perhaps this is influenced by your lying position and the contours of your pouch. Late night snack might make this worse because the chewing wakes up the intestine. Do you get any leaks at night? Or tiny leaks (called “seepage”)? This would cause the bum burn if you have even tiny amounts of faeces in contact with your bum during the night. One way to check is to wipe your bum first thing in the morning. Look for tiny amounts of brown, even if you haven’t overtly soiled the bed. Gas is caused by swallowed air or fermentation in the pouch. There are many tips to reduce swallowed air eg avoiding fizzy drinks, don’t talk and eat at the same time, don’t drink and eat at the same time etc etc. google it for more info. There are foods which cause fermentation in the pouch and can result in lots of gas. For me, I tend to avoid cauliflower and Brussels sprouts for this reason, but everyone is different. If you don’t already, then I suggest a food and drink diary and write everything down, along with number of bowel movements per day plus nature of the stool plus presence of gas. Look back to identify correlations and help with your onward diet choices. Last from me is make sure the pouch is empty before bed, I take 10-15 minutes on the loo; amazing how you can feel empty and then 5 minutes later the contractions align and you get another “whoosh”! Full emptying might well help with nighttime toilet trips and leakage/seepage. Best wishes, sounds like you are doing very well. David (admin)

4 days ago

Does Lemon juice really help with butt burn inside and stuff coming out as I am running out of ideas and it’s excruciating at times!!😢😢😞

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Sudacrem, put a dollop on you finger and apply internally about an inch up. The relief is instant

I swear by bepanthan nappy cream. Use it every time I go to the loo and if things get really bad, metanium. The relief from metanium is almost instant but the yellow can stain clothes, knickers and fingers so something to think about! And I put these both internally too- just a small way up. I can’t imagine lemon juice would be good as it’s so acidic and would surely only make butt burn worse (but maybe other people know something that I don’t?)

Germoloids cream is good.

I used a cream called Biafine. I was advised to try it in France. Its used for radiotherapy burns amongst other things but it worked for my butt burn too

You don't mean lemon juice on the outside do you Laura surely? Its highly acidic and will burn like hell - taken internally it has an alkalising effect once metabolised in the body so that may help balance your ph levels..

I use Calmoseptine, its pricey but soo good. Its super thick so works as a great barrier cream! I get it on ebay. Its one of the first things that was recommended to me after I had my take down. I find taking immodium before meals also helps with the burning for me

I was the same, absolute agony, tried everything, the only cream that worked for me was metanium, nappy rash cream, it was a life changer for me x

I use sudosalve and superdrug haemorrhoid treatment gel.. codeine before bed helps with getting a full night's sleep

Ilex is great for the worst times, prescribed by my GP.

I feel ur pain iv been like that 30 years had a really bad one for a few weeks proctosydl on ointment nozzle with it got it in and the relief was great uniroid is another one brilliant good luck

It might sound crazy but try Vicks vapour rub

Calmoseptine. I import from America because the people who sell it here charge extortionate prices.

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17 hours ago

Oops! 🤣🤣🤣

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1 day ago

Just spoke to my surgeon Dr. Doulias. Tomorrow's final takedown surgery has been postponed until six weeks time. I go home tomorrow until then. Drat.

This is due to a stricture in my jpouch. Currently (if I understand correctly) the area there is too narrow and he said that this is why I was in so much agonising pain yesterday during the pouchoscopy procedure. My whole life flashed before my eyes, I really thought that my heart was going to give up and was struggling too much to tell them to stop.

He has a six week plan which Chelsea hospital (who performed my last surgery) agreed with him on to correct this, I guess to widen this stricture area. One quick procedure tomorrow then I can go home.

My next pouchoscopy will be during final surgery whilst I am asleep, thank goodness. Apart from this he says everything else is fine. I guess that I can wait a little longer now that there is a proper plan in place, looking around mid July then. Seems that I haven't changed my last ileostomy bag after all.

Question for people. Will this stricture give me any added jpouch complications?

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I had a structure which was dilated during takedown and haven’t had any issues since takedown( January)

How long is a piece of string? J pouch surgery is complex and no matter how good the surgery complications arise. However the medics and the general pouch community have got much better at dealing with them since I had my surgery over 20 odd years ago. We didn't have support groups on social media, zoom meetings , etc. that we have now. Strictures happen due to the scar tissue round where the pouch joins the anus. You can learn to keep it open using a set of Hagar Dilators. And i personally think that every new pouch patient should be issued with (and instructed how to use) a Medina Catheter as standard and life would be a whole lot simpler and a lot less stressful for new patients. Just my thoughts as an experienced j pouchee who incidentally had to teach a whole team of ICU nurses how to empty a j pouch when I contracted Covid.

6 weeks to go! Hopefully, the dilation will help between now and then. I always ask for sedation during a pouchoscopy. It’s so damn painful that my screams have actually scared Mr Taylor my KGH surgeon. Knock me out with the good drugs! 😜

The stricture is usually just scar tissue formation as it can happen with any incision area on the body. If you had UC and retain a bit... it could have als had inflammation which contributes. If this doesn't stop reforming the scar tissue, they can give you a Hegar dilator to take home and you have to basically break your own scar tissue down every day or every few days for a set period of time. For most people, it stops coming back. If you had knee surgery, you can get scar tissue formation there, say, and then the physio breaks it down. So its a 'transferable' type of surgical issue, most of the time. Sounds like you're in good hands and the doctors will make sure your poop hole stays open to poop! Good luck!

1 day ago

It usually me posting advice on this group, but today it’s the other way round. The last couple of days I’ve been having what appears to be a blockage. It’s not something I can recall having in over 25 years ,even with a stoma. Those of you who do the RLG zoom meetings will know that I have a rather large inoperable hernia which doesn’t help matters. I can actually feel my small bowel and the movement of food through it. The pouch is now producing output with the consistency of diarrhoea which started off as yellow and this morning changed to brown colour. The intermittent pain seems to have subsided though I didn’t get much sleep last night.

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Fizzy drink, massage the area you can feel the blockage, hot water bottle helped aswell for me but appreciate its abit warm!! If symptoms persist I would recommend going to hospital, I hope you feel better soon!

I've had my pouch for 25 years & have started to experience blockages over the past couple of years. I find that walking helps to start moving things along, I've also modified my diet to eliminate those foods that are hard to process (eg mushrooms sweetcorn raw veg). There are also some yoga exercise videos on YouTube designed to help with bloating & blockages (they're not too difficult & again help to get things moving along). It does sound like you're blockage is easing up, hopefully you will be feeling better soon.

Hot water bottles are magic Cures everything lol. I find walking helps me. Hope you feel better soon.

Contact the St Marks Pouch nurses. I’m sure they will have great advice. It might be a virus or a bacterial infection. I know when I get kidney stones it can feel like a blockage. So many possibilities. Feel better ❤️‍🩹

I have had this issue with an ageing pouch. I try and only drink liquid when this occurs. Stay away from food if you can , until it passes . Only last week I had exactly the same as you. It is keeping us on our toes, never to be taken for granted. Good luck

Hi Peter. Sorry to hear you are having problems. As you may know, I also started to experience blockages a couple of years back, after many years with a problem free pouch. It has been put down to strictures/adhesions caused by scar tissue (from the original surgery all those years ago). agree with all of the advice given above, and in particular as sugested by Aimee, its worth getting in touch with the pouch nurses at St. Mark's. Remember they mentioned their issue related flash cards in the webcast last week? They do have one specifically for coping with blockages which they have previously shared with me. They do quite often clear themselves, but I would suggest that if it goes on for more than a couple of days, and particularly if you start vomitting, that would be a signal that a visit to A&E would be a good idea. Hope it does clear up.

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2 days ago

One to make you smile 😁

Day before yesterday I was a tad worried/confused. Kept passing blood, no pain or discomfort just blood. Mildly curious as to why until my gorgeous wife asks me today, “ did you enjoy your ham and beetroot sandwiches I made you the other day?” 😂😂😂 ... See MoreSee Less

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Aye avoided beetroot for years because of that! And red cabbage turns everything a very vivid green / blue colour. If you don't remember what you ate it's very disconcerting 😁

Try blue curaçao! Turns everything bright blue, boy did I panic after a few too many lol

I remember my first beetroot experience I panicked like mad 🤣🤣

2 days ago

Hi looking for a bit advice I am getting a total colectomy on the 7th June with jpouch all in one surgery it will be open we booked a caravan holiday a hour up road in car ( husband driving ) do you think this will be possible so quick after surgery ? Thank you x

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When is your holiday?

People recover at different rates but I’d say that’s way too soon. I was in hospital for 7 days then off work for 6 weeks, then even after that things were slow going. Although mine was split over 3 surgeries so maybe different I don’t know.

Open surgery takes longer to recover. Best of luck

See how you go and take each day at a time. It maybe something to really look forward to and that will give you the drive to heal and feel better. You are only an hour cars journey away from home - should you think it’s not for you … it’s time with your husband/ so you are safe and secure. You just enjoy and wishing you love and light

Change ur plans. I wish you the best but it's going to take weeks to fully recover.

I would say it's too soon after such a big operation. I think you will appreciate your home comforts just a few weeks after surgery. I've also had both surgeries and c section very different. Be kind to yourself and take it easy.

Just one example: after her surgery, my daughter suffered every time we drove over a speed bump, even though I drove as slowly and gently as possible, and she clutched her abdomen in an effort to insulate it from the bump.

Having had this surgery, the last thing I wanted to be was away from a toilet at this time! I understand you may have one in the caravan, but they are not the most private of places. There’s also the possibility of things like infection, which can delay recovery, but it all depends on how well and able you feel.

It wouldn’t, it’s a big op. I was in hospital for a good 8/9 days, open surgery here too, also had a c section and it doesn’t compare

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2 days ago

Just changed my ileostomy bag which should hopefully now be for the final ever time. I am not going to miss this routine 😁

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Ooh sending you all best wishes Barry !!!!

Best wishes

Best Wishes xx

I hope it goes well.

2 weeks ago

Hi guys I just had my ileostomy reversal on Wednesday. does the burn ever go away or is it something you just get used to?

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Does get easier as time goes by but even after 10 years I can get it from time to time. Are you using any creams? I find Bepanthen the best to calm it down afterwards, or you can buy barrier paste / cream to help which you ideally apply before. Also wet wipes are better than paper, or bidet if possible is the best!

After more than 20 years no it doesn’t but you learn tricks . I have had 2 bidets worn them out , but some times in best to sit in a bath with Luke warm water . Never used paper !!! Use non sented baby wipes , sudecrem lashings of it all over sides is the best day to day . Calmerseptine cream is good but very expensive and some times makes it worst . If you find you leek on a night I use a pad fabric not period type washable you can get them on amazon and fold toilet paper and put in between butt cheeks away from sore skin it soaks up any leakages in the night . I have even been on my side with a facecloth with cold water through the night , butt burn always happens on a night for me . I have used a barrier cream that I had for a stoma over the sudeocream just before I go to the loo to keep poo off the skin , that was the best advice from my stoma nurse .

I've had my pouch for 21 years & yes, the soreness does go - mine went really quickly & I hardly have any at all now, more of an itch at times, than out & out soreness. But when I do get sore (usually after i've eaten something that my pouch didn't like), I either use vaseline or Dermol 500 & it usually only lasts for 24 hrs, if that.

In my experience the butt burn goes away as the perianal skin toughens up. You will also become more aware of what works and what doesn’t and adjust your diet and activities accordingly. It it takes a while and it isn’t like a sudden thing, it slowly evolves

It never goes away 30 years + still finding it hard to deal with some days are better than others good luck hopefully yours is better 🙏

I found it tough at first, but came home with the biggest pot of sudocrem and used it after every toilet trip. Using a sitz bath can help (toilet bath seat) and dab dry rather than wipe as it can get sore. In answer to your question though for me yes it got easier, although I still have a pot of sodocrem in every toilet as I still need it from time to time.

My daughter rarely has "butt burn" these days. The recovery period is rough, and I think everyone struggles at the start. If your surgeon/j-pouch nurse okays it, start taking a small dose of smooth Metamucil in minimal water before meals.

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