confusion- RV fistula & jpouch?

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Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 9/11/2009 10:11 AM (GMT -7)   
Hi everyone! It's been awhile since I posted here, but I drop in regularly to read. I may post this on jpouch.org also, but this is the deal- I finally went to see a surgeon about repairing the RV fistula I've had for about 2 years now. We discussed the available treatment options (not many!) & the success rates (quite low!), & then she said something that blew me away- she told me I was not a candidate for a jpouch becasue of the fistula, that any reputable CR surgeon would never even think of doing a jpouch on me because of the presence of the fistula. That to them, signifies Crohns. But then I go over to jpouch.org & read about tons of women with RV fistulas & jpouches- what gives? Are the fistulas developing after the pouch is made? Does this mean they really had Crohns all the time? Some of the women get their pouches removed, & still have the fistulas. I'm just confused- in any of your dealings with surgeons here, did you ever hear this, that if you have a fistula you're automatically assumed not to be a candidate for a jpouch?
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/11/2009 10:30 AM (GMT -7)   
Eva Lou,

I can think of only one woman who had jpouch surgery after a fistula and her original diagnosis was FAP not UC. Most women with RV fistulas develop them after surgery. Sometimes it's because the condition was really Crohn's and not UC, other times it's related to infection during the first step of a jpouch, and I suppose there's a group of unknowns. You can always seek a second opinion from a top CR surgeon; one who has done 1000s of procedures.

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


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 9/12/2009 10:21 AM (GMT -7)   
Well the surgeon I met with is the head of Colorectal Surgery at Beth Israel Hospital in Boston, so I don't doubt her expertise or qualifications. She's not, however, the surgeon I would go to for surgery- I have also met with another highly qualified surgeon at Lahey Clinic, who I just liked better! But I haven't seen him since prior to getting the fistual, so am not sure his take on the whole thing. I guess my confusion comes from the fact that if a surgeon generally won't perform a jpouch on someone with an RV fistula- so why are so many jpouchers complaining of fistulas? Know what I mean? You wonder what the deal is, why the fistula opened up- from reading the posts on jpouch.org, the women with them experience serious leakage issues, etc. Now the woman with FAP you know, did she get the fistula fixed at the time of her pouch surgery? Or does she still have it, with a pouch?
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 

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