ongoing problems after j pouch surgery

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lmerik
New Member


Date Joined Jan 2010
Total Posts : 2
   Posted 1/17/2010 1:05 AM (GMT -7)   
I am searching for info. on behalf of my sister who had j pouch surgery a year ago...since having the reversal done she's had one problem after another!    The incision where the stoma was keeps popping open and oozing stool and infection (we think) and her doctor just puts her on an antibiotic to clear it up and it eventually closes up.  This is now the fourth time it's opened so of course she's back in hospital where they figure it will take a couple of weeks of antibiotics, a nutrient drip (TPN), etc.  She also has cuffitis which she started suppository treatment for, but she had to stop after the first treatment b/c it made her swollen and inflammed.   Just curious if there is any feedback regarding complications with  j pouch.  She has two small children and has had no quality of life for the last two years and is really debating whether she should just revert back to an ileostomy and move on.   Any advice would be greatly appreciated!  Thanks.  Lana

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5429
   Posted 1/17/2010 9:12 AM (GMT -7)   

Yes, I have two recommendations.  The first is that you get her on the site www.j-pouch.org There are over 6,000 jpouchers on that site that have experienced all kinds of difficulties and will have tips/advice for your sister.  I would also question the advice of the surgeon who lets an incision problem continue to this point.  She might want to change doctors for future problems and can also get great CR and GI recommendations from the jpouch site.  Once treated for cuffitis she should be able to manage that quite successfully with either the suppositories (short term) and oral medication (long term).  It's probably overwhelming at this point to think it will get better but it will if she gets treatment from the right doctors.

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


lmerik
New Member


Date Joined Jan 2010
Total Posts : 2
   Posted 1/17/2010 8:53 PM (GMT -7)   
Thank you so much for your quick reply...b/c she is in hospital at this point I will check into the j pouch site you recommended and pass along the info. I find.  She is now doctoring out of province and in one week have done more testing, etc. than she's had in our city!  She had a blood transfusion last night and will have an endoscopy and some other test starting with an enema tomorrow.   To your knowledge is there some sort of support she could be getting in hospital other than doctors to answer more questions?  I was thinking of a stoma nurse or someone?  Thanks again.  Lana
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