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J-Pouchers–The Forgotten Patients

I want to start off by saying that I LOVE my j-pouch. Having a j-pouch has given me my life back! I will never forget the struggles that came from life with a bleeding, ulcerating colon. The nights were endless, the days were long and I had no idea how I was going to survive tomorrow. Now, I really don’t have to worry about that. Because my body is no longer attacking me.

Surgery is never ideal

With that said, I feel like something else needs to be addressed. While living with a happy healthy j-pouch is much better than living with an evil colon that tries to kill me day in and day out, it is by no means ideal. I’m thankful for the advancements that have been made for ulcerative colitis patients. But there’s still so much left to be done.

We need a true cure for UC, not a band-aid

Approximately 95% of j-pouch patients report a better quality of life. Not including myself, I know many happy j-pouchers. But they will all tell you that it doesn’t come without its own set of problems. The first is that people think that it’s a cure. I hate to tell you that it’s not! Ulcerative colitis is in our genetic makeup. Simply removing an organ doesn’t cure you of the disease. It just gets rid of what your body is attacking. Calling a j-pouch a cure only hinders the research for a TRUE cure. In an ideal world, I would have had my entire colon restored to complete health.

The problems and complications that come with a j-pouch

After the j-pouch surgery, many patients feel forgotten… because, as most would say, you’re cured now! But as I stated above, you’re not. Every day you are reminded that you are missing a very important organ. While you may not be going to the bathroom 20+ times a day anymore, you’re still going more than the average person. On a good day, I’ll go 1-3 times. On a bad day it’ll be 5-8. And don’t get me started on the j-pouch gas and butt burn. Both can be really rough.

I also worry about other complications that could happen down the road. Many of my friends have dealt with pouchitis and cuffitis. I also have friends who’ve lived with j-pouch failure–it’s rare, but it can happen!

Life after j-pouch surgery

J-pouchers often feel very forgotten because, for whatever reason, it’s been touted as a cure for so long. There hasn’t been much research done as far as life after surgery. We need to make our voices heard. Just because we’ve had our diseased colons removed, doesn’t mean our problems magically disappear. We still have a lot of questions. Can we have children? Will I never see blood in the toilet again? What about blockages? What are signs I should look for if I suspect there’s a problem? There’s so much wanting in the j-pouch community. We need to keep fighting for answers, better care and, yes–a TRUE cure.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • susans53
    12 months ago

    No it is NOT a cure. I’ve had pouchitis since day 1 and have been on every UC med available. Now I’m on Entyvio. 19 years colon free. Even with all this I still love my jpouch. Good luck to all pouches.

  • innerbanksmile
    1 year ago

    I am also a j- poucher as of 1993. I love my j-
    pouch. It allows me to feel normal. Right now I have inflammation there but am glad I don’t wear an ostomy nor do I ever want one again.

    Having Crohn’s has changed my life but I don’t whine or talk much about CD. I am on the SCD diet and that is helping. We j-pouchers are unique, and strong in spirit.

  • RosieVeg
    11 months ago

    What is the SCD diet? I’m on the Low-FODMAP diet for 3yrs or so. I have severe digestion issues/Severe Gas/Bloat for days/wk. I have found pineapple enzymes help but would like to know do you have digestion issues? If, Yes what do you do about them? I never had them till my j-pouch.Thx

  • thedancingcrohnie moderator
    1 year ago

    This is a great post. I agree. So many see the J-pouch as a cure, and unfortunately it is not. A cure would mean a healthy colon. I can’t wait for science to get there!

    Thanks for sharing.

    Always dancing,
    Elizabeth (team member)

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