Don't Understand!

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andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 9/10/2009 7:33 PM (GMT -6)   
Could someone please explain a few things to me. Firstly I have a permanent ileostomy as I had to have my rectum removed recently as well due to severe disease in that area as well. I was firstly diagnosed 21 years ago with crohns disease which in the past 6 years was changed to crohns/colitis so after all drugs were used and failed for me my result was permanent ileostomy. I have been reading everyones posts about J Pouch and reversal surgery when they have crohns yet my GI said that no one with crohns should ever have a reversal or J Pouch surgery due to very possible ongoing problems he believes that a reversal would be the biggest mistake for a crohns sufferer. Then I have also read some people with crohns end up with a colostomy not an ileostomy and I dont understand why? This is all so new to me still and I want to educate myself as much as possible as I am still stuggling with my ileostomy and proctocolectomy. For me there really was no other choice and I am happy that I am finally no longer confined to the home as I used to lose control of my bowel practically every day. So having this has more postives than negatives but I still struggle with it and dont know why. So silly I know. So anyone with info I would appreciate it. Thanks all

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 9/10/2009 7:54 PM (GMT -6)   
Crohn's patients don't usually have success with j-pouches...the disease usually comes back at the pouch area. Some people can have colostomies and...this part is confusing: some Crohn's patients can have j-pouches IF they never had small bowel involvement. There aren't many docs willing to do that and the patients know that there is a high percent of failure but are usually willing to try. It really depends on your doc and where your disease is.

I am like you...I have Crohn's and a proctocolectomy. I started with disease in my small bowel and then it progressed to colon and rectum with a lot of fistulas...meds stopped working, too, so I had the final surgery in Feb 2008. Before that surgery I had an ileo for 9+ years so it wasn't a hard choice for me. I know what you mean about being able to leave the house...it is a GREAT feeling:)

It's been a long day, I hope this made sense!

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 9/10/2009 8:47 PM (GMT -6)   
Thanks Ohio that helped a lot I understand a lot better now. Your crohns/colitis sounds very similar to the way mine has been too. Take care

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 9/13/2009 6:10 PM (GMT -6)   
I had the exact same thing as you with the appearance of some cancer on the rectum and it all came out 5 weeks ago. I asked my Dr. about the J pouch too as soon as I heard about it. But he said not possible. I am still working out how I feel about all this. I think if I could go back to some of my old activities I would be happier. I am learning to be patient and hope I learn fast. lol. I struggle with the bag, the eating, and still too much bathroom time. Hope I get my life back soon, Maybe I don't want, Oh good grief!
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