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surgeons/support groups

Sun, January 10, 2010 1:00 AM

Hello,
My son will soon have surgery - we think we will have the j-pouch surgery. He has is 19 years old and has UC. He has been on many meds for three years. He has not been able to control the disease or be in remission via meds or diet. We live in the KC area. We are trying the find the best surgeon. We visited with a surgeon in St. Louis. He mentioned that due to the long-term prednisone use, the surgery may be a three-step method. Now, we'd like to see if there is a surgeon in the KC area so we can have this done closer to home. However, we want it done correctly. So, if it means traveling to St. Louis, we will do that for the weeks that are needed to be there. However, it might be more convenient and easier for follow-up visits to be closer to home. Does anyone have experience with surgeons in the Kansas City area? Also, does anyone have know of any local support groups? I don't think the "average" person can really understand or can be expected to understand the emtional and phyical rollercoaster ride this is for a personal dealing with such a chronic disease.

lfinn
Joined Nov 15, 2009

Fri, January 22, 2010 1:00 AM

Reply posted for lfinn.

While I can't really help you with most of your questions, I do suggest that you check out www.j-pouch.org. It's an online support group consisting of people who are just thinking of surgery to people who have had the pouch for 20+ years. They can help you with pretty much any question you may have regarding surgery. I have gotten an incredible amount of useful information from the people there. There might even be people from KC that can recommend a surgeon or a support group.

Also, you might be interested in an ostomy support group as well. If you go to uoaa.org you can get a list of support groups. Here is a direct link to some support groups in Kansas:
http://www.uoaa.org/supportgroups.shtml#KANSAS

Good luck!

jared fantastic
Joined Jan 21, 2010

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