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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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16 hours ago

Hi, sorry if this been asked before but what does everyone use for piles? Thank you ... See MoreSee Less

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Have you been checked by doctor? May have anal fissures rather than piles?? Xx

Haven’t seen much posted about piles on this group. Maybe because we don’t generally have to strain…. As mentioned by Helen Bufton, might be worth getting it checked out in case anything else

1 day ago

Hi can someone discribe what pouchitise symptoms are.....
I've got pain near my old stoma sight cramping and lower back pain and keep going bathroom feeling like my colitis is back πŸ˜“
I do have a hernia at the old stoma sight which I'm waiting to be operated on
Thank you
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Hi Saghir…..I had pouchitis a couple of months ago and it felt like just before I had surgery…..bathroom trips tenfold and urgency and the feeling to go constantly

If you get offered cipro please don’t take it as I’ve always been fine but that anti biotic is very dangerous and I had to stop taking it

All the best πŸ™

3 days ago

Hi all
Having the worst pouch pains I’ve ever experienced over the last week- it feels like agonising churning cramps every time there is any movement in my pouch e.g any wind or output passing through it and it feels like the pain and cramping is right up my bum (sorry but hard to describe any other way) my back around the coccyx aches too.
It’s worse at night and feels as if I’m really full but when I go to the toilet I don’t pass much.
Anyone experienced anything like this?
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I have was treated for pouchitus and having on going investigations felt like my uc was back. Speak to your IBD team

Sounds to me like pouchitus. You'll need anti biotics xx

Please don’t take ciproflaxin as it has so many severe side effects

4 days ago

I’ve had a j pouch for 20 years and it’s been a very lonely journey the hospital I was under was great but didnt have a team experienced in Pouches. I have now been placed under the care of at marks as I’m haveing a few complications and actually cried today after coming of the phone to one of the pouch nurses, finally my years of just getting on with it over and I’m now under a team who understand and gets everything I say. I feel like my pouch journey is starting all over again and I’m going to learn so much I didn’t know. I wish there was a way we could make the world more aware of what we go through and even what a pouch is it would make life so much easier xx ... See MoreSee Less

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I am thinking of changing my hospital team to a specialist one. How do we go about it? X

My Gp asked me today if there was redness around my pouchπŸ™ˆ Awareness, definitely needed!!

I was asked does it look like it's inflamed 😑

pouchsupport.org has a leaflet expalining some of tthe issue peopel experience with a pouch. This might help when you're talking to non-pouch nurses,GPs, etc.

After stripping from the waste down for an abdo examination I was asked where my pouch was. In so much pain I bit my lip and explained, I was admitted for gallstones and after a few days and several further consultants/explanations they decided to remove my gall bladder. The surgeon came next morning with all the paperwork for me to sign for my surgery to remove my appendix. I just couldn’t believe it. I lost my appendix with my colon in 2003 at this very same hospital. This was last year.

I’m still being sent prescriptions for my ileostomy after having a j pouch for 3 years!

I sympathise. I asked my lovely GP last September for referral to St Marks after reading many posts on this forum about help and answers people were getting there. It was a long wait (Covid didn’t help) but sooooo worth it. Since then I’ve had a few very informative and useful consultations with Prof Clark plus pouchoscopy which provided all the answers and explanations to my 15 years of troubles….. there was just nobody there to help or explain until now. Each time at A&E I had to explain again and again what’s J pouch. πŸ₯Ί I’m now awaiting operation of j-pouch removal at St Marks. πŸ‘

I had pouchitis a month ago spoke to GP on phone he said what was that, I explained I had a J Pouch and he still did not understand, I had to explain about the removal of my large bowel 14 years ago πŸ€£πŸ˜‚ was unbelievable, he should have read my notes.

It's great to hear your getting the help you need and terrible it's taken so long. But I do think some people expect a lot of general practitioners. Medicine is a vast subject no-one could possibly know it all. Surely, that is why we have specialists. Maybe we are a bit more special than some of us imagine. 🀷‍♂️

Virtual hugs to you πŸ€—. Similar situation here too. So strange finding out things you wish you had known years ago but at least finally the right support and knowledge is there for you now xx

I've had my pouch for 26 years now and struggle everyday. I know nothing about it or how to help myself. I'm just so fed up sometimes it depresses me! Not sure where to turn too.

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5 days ago

Hi warriors, quick question for you all;
How do you describe to someone you have pouch pain?
It isn't stomach ache as that is much higher up and it sounds wrong to call it bowel pain. πŸ€·πŸ»β€β™€οΈ
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It feels like period pain to me x

I just say I have pouch pain. But agree with Cat Sadler about it being like period pain.

it's like a very heavy period pain x

I call it abdominal pain, saves the details of it being a pouch - be it J, W, or in my case I.. Remember that the ileum only has a fraction of the nerve endings of the colon, so when we actually feel discomfort and pain it almost by definition serious.

I take tramadol for chronic pouchitis pain

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1 week ago

After I eat my stomach makes very loud noises is this a sign on pouchitis? ... See MoreSee Less

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Most j pouchers I know have intestinal noises after they eat. Me included.

No. You might find it's just a little wind. Mine does it all the time and I've never had it. Mine attract a lot of attention It'd so loud lol

Mines so loud it’s like an alien

I have had a j pouch for over 20 years and never has noises like this 🀦‍♂️

All sorts of unwanted noises, including trapped wind, remember bits are all in different places with a pouch.

Had mine 30 odd years always been loud . If you get cramps then that might be a sign.

Dairy does this to me.

Mine is so loud most of the time πŸ˜‚

Mine sounds like whale πŸ‹ mating calls 🀣 defo not pouchitis

Mines nearly always making noises I get asked if I'm hungry lol had my pouch 26 years and pouchitis 3 time

Lots of noise here after I eat. Maybe some gas x to help with that. It helps sometimes for me.

If it's not normal for you ask your consultant. For me personally my pouch is loud even if I haven't eaten, I do have chronic pouchitits though.

Nope

Um tractor.sink.washing machine or motor bike.many of my noises my pouch makes lol

All normal, mine too like others so very loud noises, wind and then dash to the toilet for a no.2.🀣

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7 days ago

Hi all - I have been told that my endometriosis is extensive and severe enough to need a hysterectomy and ovaries removed as my only option so would then need HRT.
I worry about my j pouch and wanted to see if anyone had gone through a hysterectomy with a j pouch and how HRT was. Thanks in advance
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I've had both of my ovaries removed. And have a J pouch. Just get a good surgeon.. Scar tissue makes it more difficult.

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I have had a hysterectomy due to severe endo . However I do not have a pouch . Due to my hysterectomy I now require an iliistomy as the bowel lay on top of my vaginal vault and fused causing a fistula . I have severe diverticular disease . I have never been on any hrt my surgeon refused to put me back on it as the endo will grow back .

Gynae won’t even do a laparoscopy on me but this is what’s suspected so I’m treated symptomatically and take mini pill and don’t have periods or symptoms.

I discussed this with my surgeon when I last saw him for a check up and asked him how complicated it might be to have one. His answer was that he would want to be in on the surgery to make sure all was ok. Is it possible for you to ask the gyney people to liaise with your pouch surgeon to align diaries so both can be available? Good luck and keep us posted xx

I had preventative hysterectomy 2 years after j pouch. Am on HRT, no problems xx

Oh and I also had my j pouch surgeon in the theatre with Gynae xxx

Hi, I've had my jpouch for 11 years. Dr though I had endometriosis and my fallopian tubes kept filling up with fluid, so I had a partial hysterectomy laproscopicaly. He only took out my uterus and my fallopian tubes. My uterus was always inflamed. The surgery took four hours. I had no endometriosis, it was all scar tissue. He had to dissect it very carefully from the bottom of my breast down to my public area. He couldn't take out my cervix because it is stuck to my jpouch. He didn't want to take the risk of damaging jpouch. He also had another surgeon on standby just in case cuz he had never seen a jpouch before. He said it was really interesting. I kept my ovaries. I need them cuz I'm bipolar. I spent 2 days in hospital getting fluids and two different antibiotics. I went home and slept for 2 days then I got 102 fever. So I called Dr and he sent me back to er and I was admitted. They did a cat scan and found all of my stomach and abdomen tissues inflamed, so more antibiotics for 3 days then went home. The follow week my throat hurt so bad so I went to my dr and she saw 1 little white spot and and said it was thrush so she prescribed nystatin mouth wash. I took it 3 days and still had such bad pain in throat so I went to urgent care. They tested me for covid,flu,and strep. Strep came out positive so they checked my throat and sure enough covered in white spots and had an abscess too. So gave me antibiotics for 10 days. Then I completely lost my voicefor a week Since I have been on antibiotics for 2 months now my jpouch has been pretty good to me. Throat still bothering me, I got my voice back but not completely. It's very hoarse still. Got it checked out again and tonsils are still very swollen. It gets to the point where I can't breathe or swallow. Before this whole strep thing happened I had blood work done and a couple days later was referred to a hematologist. So I went today to get my results because I just do not feel good. My white blood cell count is at 19,000. Dr says it's through the roof and that strep never causes such a high wbc. So I have no idea what is wrong with me and drs have no clue till I see hematologist in January.

I was on HRT until they found a mass on my adrenal gland had to stop it right away by that time my period had stop so no more pain I was put on HRT to stop the pain and got told because of scar tissue they didn't want to do the hysterectomy incase they put a hole in my pouch or worse but that was many years ago so things and ops have changed

I have a pouch and had a hysterectomy, on hrt no problems. Pouch surgeon was in theatre with me when I had the operation

I had my pouch formed and hysterectomy for endometriosis at the same time - now on hrt. Getting rid of my womb was the best thing I ever did. Now pain free. πŸ‘πŸ½πŸ‘πŸ½πŸ‘πŸ½πŸ‘πŸ½πŸ‘πŸ½

I was told I needed a hysterectomy but due to severe scar tissue build up my womb has adhered itself to my pouch. I do need my pouch removed as it’s now disconnected & I was told I would need the gynaecological surgeon available at the same time as the gastro surgeon so they could work together to remove both at the same time. Due to covid of course all of this is on hold.

Thank you all - it’s so difficult to know what to do but it’s helped me to start doing my own research.

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6 days ago

What's a stricture if the pouch ... See MoreSee Less

1 week ago

Hey I'm new to this group 😊 but I've had a jpouch for 4 years. Does anyone have issues with their pouch while being anemic? Not sure if my increased toilet visits could be a symptom or not πŸ€” ... See MoreSee Less

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Yip.i have bad amemia

Yeah, I was anaemic and eventually had iron infusions.

Yeah. Was anaemic last year and put on iron tablets.

Did any of you find your trips to the toilet increase?

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