Forum

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. 

Update 19 May 2024

Due to a change in Facebook policy, it is no longer possible to stream Facebook Group feeds to websites. We are very disappointed with this change, but sadly it is beyond our control. Of course, it was always the case that to fully enjoy the benefits of the Facebook Group (including the ability to post and react to posts) it was necessary to join the group – which you can still do. The group now has over 1,500 members and is very active. To join the group, tap on J Pouch Support (UK specific) and submit a join request. We look forward to welcoming you!

If you are interested in the technical announcement from Smash Balloon (the provider of the Facebook feed functionality), see https://smashballoon.com/doc/facebook-api-changes-affecting-groups-april-2024/

As per the announcement from Facebook, the feed below will stop updating in April 2024.



J Pouch Support (UK Specific)

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2 months ago

I have had a pouch for nearly 30 years and I am wondering if I am fighting the inevitable as the function is poor. The history and what I have I tried is too long to detail! My question is what is the longest anyone has had a pouch? Thanks for any details you feel able to share. ... See MoreSee Less

2 months ago

Hi all. Just joined the group.

I had an emergency sub total collectomy with Ileostomy just under a year ago and over the last few months I have been passing an increasing amount of blood from my rectal stump.I had an appointment with my surgeon last week and he gave me two options - Removal of the rectal stump OR remove the rectal stump and then have the subsequent surgeries to create a j pouch.I always hoped that the stoma wouldn't be permanent but the surgeries to create the j pouch seem risky and there are such mixed opinions on the quality of life it gives after.I had an awful time in hospital with the first surgery and due to infections, had further major surgery. 3.5 weeks in hospital and 6 months off work recovering, the thought of one surgery, let alone multiple fill me with dread.I'm just trying to gauge people's opinions, good and bad on the recovery times and whether having a j pouch is worth it?Thanks for taking the time to read. ... See MoreSee Less

2 months ago

For those that missed it, and those that wish to see it again, I am delighted to say that the recording of this weeks webcast by **Prof John Nicholls **on the subject "*40 years of colorectal surgery*" is now available to view on our YouTube channel. ... See MoreSee Less

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2 months ago

Hi all 🙂 I’m looking to climb Scafell Pike in June, this is my first proper climb and just wondered if anyone with a pouch has done this and had any tips or advice for me! Tia ... See MoreSee Less

2 months ago

Hello,

I had a setton placed in my fistula 2 weeks ago, just seeing peoples recovery. The pain got better once the initial soreness went but am getting a lot of pain again. I’m on antibiotics incase of infection but just seeing how long I should expect pain for, I know everyone is different but just want to know people’s recovery. Thanks for all help 😊 ... See MoreSee Less

2 months ago

Has anyone been prescribed creons ... See MoreSee Less

2 months ago

Hi all. I hope everyone is ok. Xxx. I am struggling atm. I am having my j pouch refashioned in a few months. However I feel very fed up of the constant problems I have with my j pouch. Always going to the toilet. Feeling poorly. Being on medication. Fissures and fistulas. I have seen Louise Thompson recently who has had a stoma and she looks incredible with a genuine smile. I am debating just having a permanent stoma. Is there anyone that has gone back and it’s been the right decision ? Xxxx ... See MoreSee Less

2 months ago

Had my reversal in December. Had a sigmoidoscopy today and it’s showing proctitis and narrowing. They couldn’t even fit the camera into the actual j pouch because the gap was so small. He’s suggested dilation. Has anyone had this and it been successful? He didn’t speak too positively about it 🤔😕 ... See MoreSee Less

2 months ago

I had a major blockage which lasted a couple of days, it cleared itself last night.

But all the output is now going straight into my disconnected jpouch instead of my loop ileostomy stoma bag. I've cleared out the blockage which also bypassed the bag. I've just had dinner and I'm beginning to get the urgent need to rush to the toilet again. I can barely hold it in.Barely anything is going into the bag, except for a little bit of water and lots of gas. What's going on, and will it correct itself?If it doesn't, I can't live like this as I'm unable to hold it in my jpouch for long, and I'm rushing to the toilet a lot. ... See MoreSee Less

2 months ago

Apologies if you are not able to register for the **Prof John Nicholls** webcast this evening - for the first time, we have reached our capacity of **100 attendees**! But don't despair, as we will also be streaming live on this facebook group, starting at 7:30 pm.

Prof Nicholls is considered to be the father of the J pouch, and he will be speaking on the subject of "*40 years of colorectal surgery*". ... See MoreSee Less


What's New

Stay up-to-date with all of our latest news, events and stories

Dr Sonya Frearson talks "Psychological impact of bowel surgery" in our next webcast Following on from our highly successful webcast
Ellie Bradshaw talks "Biofeedback" in our next webcast Updated 30 May 2024 The latest webinar in the RLG 2024 series
Prevalence of ‘pouch failure’ of the ileoanal pouch in ulcerative colitis: a systematic review and meta‑analysis The International Journal of
Celebrating membership milestone for J Pouch support Facebook group Amanda Nash does not give much away on her Facebook profile.