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Any of you with the pouch care to share your experiences? How did you know the surgery was right for you if it was? I’ve struggled with UC pretty heavily for the last 18 months or so, I mean it’s controlled my life from about when I was diagnosed, and no long term solution works. It’s a lose-lose. Thoughts?

Community Answers
  • Brooke Abbott moderator
    10 months ago

    Hi Kaelykopis,

    The journey to my jpouch was a windy road. And the decision was not really my choice, but one the disease made for me. However, if I really knew what kind of independence & quality of life I would have had, I would have done it sooner rather than wait until I didn’t have a choice.

    Being able to go to the bathroom without anxiety. Being able to have a more active role in my son’s day to day needs. To be able to travel and not be sooo attached to the bathroom. And to decrease my pain by 60% was pretty awesome.

    If you are at a point where your meds are not working and your doctor is considering surgery, you should really have a conversation with him/her. Breakdown all of the pros and cons. Get details about post surgical treatment options. And talk about all your surgical options, including whether it will be a 2 step or a 3 step. You have options. Talk it out.

    ( Team Member)

  • Pam.Kingsland moderator
    11 months ago

    Hi @Kaelykopis, thank you so much for reaching out. I hope some others will weigh in, but in the meantime, I know many of our advocates have some personal experiences with a j-pouch. I’m attaching some articles here that you might find helpful! I hope this helps to answer some of your questions. Please feel free to reach out any time. We’re all here for you!

    Pam (team member)

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