left to much of a rectal stump....

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vicksie
New Member


Date Joined Jun 2008
Total Posts : 15
   Posted 11/17/2008 12:11 PM (GMT -7)   
Hi all, tongue
In june i had a major flare of uc which resulted in me having my colon removed, after a few complications post-op i started to feel somewhat normal again ( if thats possible ). I have moved to a new country and seen a gastro dr who says that the surgery i had in the uk to remove my colon was not complete eg they have left to much, i think the drs were hoping to reconnect.Now as a result i am flaring in the remaining bits that are left, approx 30cm ( they could not tell when they scoped me as it was so bad)
I was wondering if anyone else has had this problem? I am now back on 30mg of pred plus 100mg of imuran if that does not work then they are going to introduce remicade. I thought that having surgery would cure me and feel absolutley gutted that i now have to put up with the horrible meds as well as coping with my ileostomy ! shakehead
Would it be best to ask to have it all removed?
Any advice would be extremley grateful xxxx

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5697
   Posted 11/17/2008 12:49 PM (GMT -7)   
This is not unheard of. My guess is that your surgeon wasn't too experienced with the jpouch procedure and did not want to take away too much of the rectal tissue to compromise a jpouch. So, essentially you still have UC even though your colon is gone. Your next surgery should address that issue. It will be important to shop around for an experienced surgeon so that the surgery is a success. You can visit www.j-pouch.org and ask for recommendations of surgeons in the country you are now living. Most people on that board live in the US but we do have some Europeans, Asians, and Australians. Whether or not you choose to have a jpouch, you still need to get this offending tissue surgical removed.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Jacob Fred
New Member


Date Joined Nov 2008
Total Posts : 9
   Posted 11/18/2008 12:10 PM (GMT -7)   
I just had my colon removed a month ago because of a UC flare. Just this week I finished my steroid taper and the remaining part of my colon (about 6 in) is now flaring again. The doctors said they needed to leave part of my colon until the next surgery (the j-pouch build). I was surprised to have any colon left and not pleased to be back on meds. The doctors gave me cortizone enemas. Hopefully they work. I've got 6 months until the next surgery and I don't want to be sick with UC that entire time.

As for advice, sorry but I'm not sure I can help. However, thought I'd post to let you know you are not alone in your struggles or disappointment. Good luck with everything!
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