Hi all

After almost 14 years of having a J Pouch’s and no major issues, I am experiencing some trouble for the past 2 months or so. I was wondering if any of you had similar complaints and could offer advice. I am going to my GP this week to get a referral for a scope. 

The pouch ‘site’ on my RHS seems more distended than usual and is constantly sore and ‘throbbing’ - it feels like I was kicked in the area if that makes sense.  It’s not a crampy pain that I sometimes had on occasion which was easily treated with buscupan. It also ‘stings’ pretty badly at times, like right now as I type this lying in bed and it’s dormant. 

Output is far more regular and nights are a disaster. I am up nearly every half hour even when I eat early. It means I am generally shattered the next day. 

I drink a lot of water - it now runs through me. Within a few minutes of swallowing it, I am on the loo. Coffee ditto. 

I now suffer incontinence when passing wind which never used to occur. 

On the subject of wind/flatulence - when I pass wind I suffer an excruciating pain up my rectum that would make one cry out in agony. 

In a nutshell - While my pouch always bulged out a little bit, I could deal with it as I am slim and didn’t feel it after a while. Now it feels much bigger and the RHS of my body is so blatantly different to my flat LHS. My main issue though is that I am now CONSCIOUS of the pouch 24/7 due to this non stop soreness and stinging sensation and the constant feeling of having to have a BM even when I don’t! 

Thanks to those of you who took the time to read this! I look forward to some replies. 

Original Post

Hi, Shylock. When you write that your “pouch always bulged out a little” on the “RHS” (right hand side?) do you mean that your abdomen bulges where the temporary ileostomy used to be? That’s not where your J-pouch is, so it’s a bit confusing.

Hi Scott, thank you for replying. For 14 years I assumed the bulge was the pouch site! 🤭 Particularly as it always stuck out and tends to swell and get bloated, I thought that was the pouch ‘filling’! Anyhow, that is the site of my pain and stinging. So do you know what this bulge is about so? It only became really noticeable after 2009 surgery for adhesions but was always protruding. Now I’m confused! Looking forward to hearing from you. 

Shylock, you wrote in your OP that you had “no major issues,” but it turns out that you had adhesion surgery in 2009. Am I correct in assuming that you had some major issues that led to that? There’s a reasonable chance that some of your current issues could be related to adhesions.

Hi Scott... when I say no major issues, I meant in general. I had surgery in 2009 to treat adhesions as I had experienced some difficulty. Nothing since thankfully. As I said, this bulge is on my RHS... very sore and there is a stinging pain.

My best guess is that you have two separate issues going on, but this is just a guess. You might have pouchitis, and that would explain the frequency (and urgency?). You might also have a hernia at your old stoma site, or (less likely) residual adhesions causing mechanical problems there. I’m glad you’re seeing your doctor this week. Good luck, and please keep us posted.

Thanks Scott! You were spot on with the hernia, met Doc yesterday and he referred to a Surgeon for consultation next week. He reckons hernia also. I will let you know how I get on. 

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