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J-Pouch or Proctectomy
Good morning! I am currently weighing the decision between a J-Pouch and a Proctectomy. I was diagnosed with Ulcerative Colitis in my rectum only in April 2024. After the diagnosis, I was on Mesalamine via suppository and then orally. Neither of them worked, and actually made it worse. By March of 2025, I was in the bathroom numerous times a day passing mostly blood. The next few months it only got worse. I was in the hospital for 4 days in June, the strong steroids helped, but only for a few weeks. I was back in the hospital in Northwest Arkansas for 15 days at the end of July/early August doing very bad. I had lost 40 pounds and I was sick! I was able to get discharged and drive to Mayo in Rochester for a miraculous appointment that I just happened to get due to a cancellation (thank you God!). Needless to say, I was wheeled into that appointment and quickly admitted to St. Mary’s. I was there for 5 days trying a last ditch effort with Rinvoq (which I took reluctantly). Obviously, that didn’t work and once I turned it over to God, the decision for a total colectomy became apparent. It was the best decision I have ever made and my care at Mayo was top notch! I will forever sing their praises! But, that now leads me to the next BIG decision, J-Pouch or Proctectomy. I had a follow up at Mayo in early March and I have 3 choices. Do nothing and have regular sig flex scopes, 2 surgeries ending with a J-Pouch, or Proctectomy. I am really struggling between the last two. I have heard and read about numerous problems with the J-Pouch and would honestly choose a Proctectomy if I had to decide today! I have freedom now, I’m back to regular exercise, playing tennis, boating, etc, all the things, and life is good! I can eat whatever I want and not have to worry. But do I want a pouch for the rest of my life, it is so final?! I should also mention, they they have tried to 💯 rule out Crohn’s and haven’t been able to say that I definitively do not have it that or will not get it. They say I am indeterminate, but have no active signs of Crohn’s. So… I need help! Can you tell me your story and how you decided? I would love to hear from any of you!
Thank you so much!
#IHaveANewLife
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Hi @tamisc, welcome to Connect!
It sounds like you had a colectomy with a sparing of the rectum and a ileostomy?
I am one of those "failed j-pouch" stories. I had pouchitis for 15 years before having the j-pouch removed and a permanent ileostomy. After 10 years with the ileostomy, I wound up with disease in the small intestine. Until then it was assumed I had UC. But we are now calling it Crohn's Disease.
If you have an ileostomy and are loving life, that is a strong case for keeping it!
Your health problem was identical to mine. For years I was able to treat my UC with mesalamine with good effect but eventually the UC got worse and I took intravenous drugs which helped for a while. I lost 40 pounds and my gastro doctor recommended an ileostomy. He said we don't want to get you into the emergency room with horizontal disease and can't do anything for you. After I had my colon removed the decision was to have a J-Pouch or a stoma and bag. I consulted one of the best gastro doctors in the U.S. for a 2nd opinion and he recommended the ileostomy. I said what are the chances I will not feel as good as I do now with a J-Pouch. He said 30 per cent chance. That confirmed the original plan because I did not want to feel sick all the time with discomfort in my lower abdomen like I thought I would never get rid of. I had mu colon and rectum removed and my anis sewed shut. My like with the bag (for the last 8 years) has been good. I work out at the gym 3 times week, play golf, eat what I want and am enjoying life. The bag is just part of what I do now. By the way, I had my surgery at 70 years old and am 78 now and back to enjoying life. Hope this helps to hear of someone else experience and I pray you can make the right decision for your health and well being.
@tamisc, I want to make sure that I understand the choices you are facing. You had a total colectomy, which removed your colon. Colectomy surgery usually requires an ostomy procedure, such as colostomy or ileostomy.
Do you have an colostomy or ileostomy now? Or was your small intestine connected to the rectum to allow continued bowel movements through the anus?
The next decision you have to make is:
1. Leave as is with regular monitoring
2. J-pouch surgery
3. Proctectomy to remove all or part of the rectum and ileostomy
Do I have that right?
@colleenyoung sorry, I wasn’t completely clear! I had a total colectomy and have an Ileostomy. I still have my rectum, but nothing attached to it. And number 3., I would keep the Ileostomy.