Looks like I need surgery

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NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 351
   Posted 9/24/2009 9:05 AM (GMT -7)   
Can anyone give me some good sites and forums to talk to people with J-Pouches? I just got back from the infectious disease doctor and she said the abscess is still there. The Zosyn and Flucanozole did not help. She called the surgeon and I am waiting for a response. I am not sure if I am to get a helicolectomy or colectomy. If they only want to remove part of the colon, I will tell them just to remove the whole thing so I can be cancer free, because I am at risk for testicular cancer already and I will probably get skin cancer eventually.
27m - Dx January 2005: UC/Crohn's
Entocort 9 mg, Zosyn IV 4.5g x 3, Flucanozole 200mg, Asacol 4 x 3


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 9/24/2009 10:02 AM (GMT -7)   
Hi, if you go to forums &chat above and go down to ostomies there are quite a few people with J pouches also those who are going the  3 stages of having the J  pouch.Its very informative and friendly. Bev x

Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal sheduled for Nov09 Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid, Back on citalopram 40mg (for Anxiety.)


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 9/24/2009 12:39 PM (GMT -7)   
NostraHistoria--since your dx is UC/Crohn's you'll want to talk to people with ostomies...unfortunately, Crohn's patients have a very high failure rate when it comes to j-pouches. The only way a doc will do a j-pouch on a Crohn's patient is if they have never had small bowel involvement and meet certain criteria:(

This site's Ostomy Forum is really good, like crohnielass pointed out, and you could go to www.UOAA.org (United Ostomy Association of America).

I have a Crohn's diagnosis and have had an ileostomy for the last 10 years. I did have a proctocolectomy, in 2008, when meds weren't controlling my fistulas, and have been feeling great since. There are several people on the Ostomy Forum who have had the same and you should be able to find their stories if you do a search.

Good Luck in your decision, it is a difficult one, but very important, too!

NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 351
   Posted 9/24/2009 3:40 PM (GMT -7)   
OHIO76 said...
NostraHistoria--since your dx is UC/Crohn's you'll want to talk to people with ostomies...unfortunately, Crohn's patients have a very high failure rate when it comes to j-pouches. The only way a doc will do a j-pouch on a Crohn's patient is if they have never had small bowel involvement and meet certain criteria:(

This site's Ostomy Forum is really good, like crohnielass pointed out, and you could go to www.UOAA.org (United Ostomy Association of America).

I have a Crohn's diagnosis and have had an ileostomy for the last 10 years. I did have a proctocolectomy, in 2008, when meds weren't controlling my fistulas, and have been feeling great since. There are several people on the Ostomy Forum who have had the same and you should be able to find their stories if you do a search.

Good Luck in your decision, it is a difficult one, but very important, too!


Thanks so much for the help and support.

I am curious about your case. Where is your disease? I have it on the left side of the colon 35cm.
27m - Dx January 2005: UC/Crohn's
Entocort 9 mg, Zosyn IV 4.5g x 3, Flucanozole 200mg, Asacol 4 x 3

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