Hello. I had my j-pouch surgery in September of 1991 at Mayo/Rochester by dr Pemberton. I have had a few minor issues thru the years such as bouts of pouchitis. But nothing too severe until the past year. I have had periods of severe rectal burning which has gotten progressively worse. It is not surface related, but deep. I cannot seem to find an answer or treatment. It’s gotten so bad in the past couple of weeks that it has affected most areas of my life and will wake me from a dead sleep. I’ve tried antacids, topical creams, etc. my GI doc here recently retired and am searching for one more familiar with my surgery. Looking for help/guidance/answers/solutions, etc. Any advice or theory’s would be of great help. Thanks in advance.
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I have J-pouch 5 yrs now and I always had rectal burning. It comes and goes. I mainly think in my case it is the food I eat. I try to stay away from acids and chocolate are my culprit. The creams u use does it come with a insert to go deeper. When I get that bad, the zits bath helps a lot. I wish u luck in your search for a GI Dr and hope it gets better for u.
Thank you for the reply. I never had bad burning like this. Had some early on but nothing to this extent. But it was close to 27 years ago. So my memory may be foggy. Lol. Anyway, I do have a GI appointment scheduled for late May. Hopefully I can get some answers. I guess one of my big concerns is that the connection between the pouch and my rectum may be having issues since the pain is deep.
Is there any connection between the burning sensation and defecating? Does it hurt all the time, or with some other frequency? Does anything make it better (or worse)? Is the pain sharp or dull?
I have a jpouch going on a year now. I also had burning and it was making me crazy. I decided to go through my meds and remove one at a time for a few days to see if there was a connection. I discovered that the magnesium I was taking daily was the problem! I think the potassium also has an effect. These were recommended by my doctor. But I stopped taking them and feel much better. I still get burning on occasion probably because of what I eat and drink.
Crohns diagnosed 2010
Complete removal of Colon 2020
Ostomy for 2 years
Jpouch 2022
hello,
Similar to the experience of the poster above;
I had severe pain/burning 24/7 for my first 6 months. Finally, in desperation, I stopped all medicines for 48 hours and started adding them back one at a time until I found the culprit.
It was an extended release bladder drug that was absolutely wrecking my pouch function and QOL.
You might need to do some detective work to narrow down the cause of these issues. This presumes of course, that your issue is not mechanical or some other pouch disfunction.