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Ulcerative Colitis total Colectomy with Ileal J pouch
I had a total Colectomy with an Ileal anal J pouch back in 1990 and have dealt with it all these years. But now having a lot of consistent j pouch pain, abdominal pain, etc. Diet doesn’t help no matter what I consume. Not I don’t eat anything after 1:00 pm to try to mitigate the pain at night. Up every 2 hours to evacuate. Sleep distress is chronic. Any words of advice as to any more coping mechanisms?
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@jvh1 I had a temporary stoma that was fine, and then some complications, so I had a second temporary stoma that was a nightmare. It retracted into my body, I had leaks twice a day... It was horrible.
The permanent stoma I have now is *nothing* like the temporary one. It's well formed and I don't have issues.
I totally get where you are coming from on not wanted to get another stoma, just want to give you that food for thought.
It does sound like you could be having some pouchitis again . Have you seen a GI for it?
Sorry that the stoma and bag did not work out for you. I am 78 and have had mine for 8 years without much problem. Can you consult a surgeon and see what might have gone wrong before? It should not be giving you that much of a problem. God Bless.
I've had my J pouch since 1 989. The last couple of years It started leaking.
Now the leaking is constant. Does anyone have suggestionsfor me.
@slynn70 have you talked with a GI doctor or your GP? Are you using the toilet more frequently, or having symptoms of pouchitis?
I don't know exactly how I developed ulcerative colitis I read about the ileostomy surgery, but didn't want it, I had lost so much weight I ended up 5 months in the hospital refusing to have surgery. I always used the portal potty, but one day I wanted to go to the hospital bathroom..I didn't recognize myself. I knew I needed surgery I was given emergency surgery at Cleveland Clinic in 2000, JPouch 2008 and the final surgery in 2009. Still today in 2026 I have stomach issues and develop gastritis, We must educate ourselves as well, especially on how to live and eat proper foods after surgery. I have OA, and had a pulmonary embolism been on blood thinners since 2005 and had blood clots each time I had stomach surgery. I often wish I knew in 2008 what I know now.