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It's time for surgery

Hello everyone.
2.5 years ago I was diagnosed with UC. I have been on what seems every type of medication and biologic but never been able to get off those pesky steroids before flaring.


Now, after my latest flare (sat in hospital writing this) I have been told there is no alternative but to have surgery (gulp).


I will be be returning to hospital at a later date for an ileostomy.
Then at an even later date decide what's next.


I've obviously scared, but relieved that I've now made a decision which will hopefully be a positive one.
I've had previous responses from some of you guys who have been through this before.


Any advice going forward would be great.
Also I have been researching a possible j pouch in the future. Does anyone have one and if so could weigh up some pros and cons and give me some feedback?


Thanks

  1. Hi

    I'm so sorry you've had another flare, and that you're preparing for surgery. I personally can't speak to an ileostomy or a j-pouch, but I wanted to share with you some articles from our advocates which might be helpful:

    https://inflammatoryboweldisease.net/living/3-years-j-pouch
    https://inflammatoryboweldisease.net/living/things-know-before-jpouch-surgery

    I'm hoping some of our other community members will respond to your post as well!

    We're thinking of you!
    Warmly,
    Amanda (InflammatoryBowelDisease.net Team Member)

    1. Thanks Amanda for replying. Those will be very useful ☺️

      1. I am a little late in seeing this, so sorry for the late response!


        I really hope surgery goes well and that it improves your quality of life quickly!


        I did have a J-pouch, but mine wasn't good and I had it removed due to chronic pouchitis. It wouldn't go into remission with all the treatment options. I even had a pouch rest for five months too. It was connected in 2009 and I had it out in 2018.

        I think the thing you have to remember when asking in online forum and stuff is that we have a very skewed view. Lots and lots of people have had a J-pouch and have gone one to live pretty normal, active lives. The trouble is, we often don't hear about them. They are off living, not online. I do know a few people that have had one and had no issues at all.

        Sorry I couldn't come along and be a ray of sunshine for you lol.

        ~ Sahara (team member)

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