J-Pouch

Seriously seeking more knowledge on the J-pouch. This surgery is an actual cure for UC. It's a HUGE step, not an easy one either, so that's why I'm investigating the option.
I've visited with my colon doc a little. I've read all about it on the internet. What I really want to know is what it's like personally. I would love to visit with or hear from anyone who has the J-Pouch...
I am curious where the best place to go for the procedure is. I'm thinking the closest place to where I am is probably Dallas. Where did you have it done? Or someone you know?
I would love to hear both the pros and the cons. I want to know how it has changed your life, what you like about it, hate about it. I need to know how many surgeries it took, how you felt, what you needed during that time. Tell me everything--the good, the bad and the ugly.

Comments

  1. First of all I am from the UK so cannot really help on where to go.
    I had UC for 18 years before finally opting for surgery, that happened around this time in 2001. I had the colon removed and pouch formed with a diverting ileostomy in the first surgery and then in May 2002 had the stoma taken down. Recovery wan't that difficult, initial high frequency caused some soreness and wind was a problem initially. Over the first 6 months frequency dropped, I managed to get the wind under control and started sleeping through the night without having to get up to visit the toilet.
    I have had a couple of bouts of pouchitis, fortunately I recognized the symptoms very early and in both cases a bout antibiotics cleared things up. Other than that no real issues to talk of apart from a B12 deficiency that surfaced this year, intramuscular injections every 3 months takes care of that. Besides the B12 I live a medication free life, need the toilet 3-4 times a day and were it not for voluntary work I am involved in I would no longer think about having a modified digestive system.
    Good luck with your decision.

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  2. Thank you John for your input! I find it very interesting that you are now med-free, this gives me hope. I currently do Remicade (IV infusion) every 6 weeks which has given me my life back. I still have UC symptoms surface now and then and I deal with unbelievable joint pain too. Thanks for sharing.

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  3. The anti-TNF drugs weren't really around when I had UC, I did do the immuno suppressant azathioprine (Imuran) but it did little for me an it was when that was not working for me I opted for surgery. I never suffered with joint problems though was aware that was a possibility, most of the people I know who had joint trouble found it much better after colectomy so hopefully you will find the same.

    Best Wishes

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