Weird & interesting question

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New Member

Date Joined Jan 2010
Total Posts : 1
   Posted 1/11/2010 6:02 PM (GMT -7)   
So I have an interesting and weird question, wondering if someone has heard of, or knows anything about.
The Story -
I am currently a 36 y/o male living with a "J" pouch and a pull through procedure which was done 15 years ago, due to what they believe was colitis.  Since having this procedure I have had some issues with lower back pain, pouchitis, and blockages.  I have underwent surgery due to my small intestine spinning on some scar tissue.  Very healthy otherwise and in good shape.
about 5 months ago had another blockage and was sent by ambulance to a larger hospital in CT to undergo another surgery, but they found out I now had crohn's.  The blockage was resolved and have been under doctors care.  While under this new doctors care he sent my for a new MRI to see how bad my small intestine appeared to be.  After getting the results he called me into the office and asked me if I ever had any back pain.  I told him since a month after my surgery till now I do have some back pain, sometimes to the point I am unable to walk.  I informed him it normally comes on after a slowing or blockage and last for two weeks.  I then asked him why he was asking me, he replied well we have found something that nor I or the radiologist have NEVER seen.  He reported that is appears I have a fistula that is coming off my "J" pouch and goes into my spinal cord.  He was so amazed with this is sent it out to Brown Univ to have them review the MRI.  I has come back that in fact it is a fistula and there are also more of them coming off the pouch and going to other locations.
He now believes that I am going to have my "J" pouch removed and a permanent ileostomy, due to crohn's pt not suggested to have a "J" pouch & since I have already had some of my small intestine removed in the past surgery. He also stated that no medication would work on this.
Has anyone ever heard of such a thing?  Can anyone think of what else this could be?  I am just looking for any answers or suggestions - that you for your time.
I am bond to be a perfect a** yet, LOL

Regular Member

Date Joined Aug 2006
Total Posts : 112
   Posted 1/11/2010 11:26 PM (GMT -7)   
What a terrible thing to happen. I have crohn's and after surgery my doctor said she would not do a j-pouch because the
crohn's could reactivate. I have a friend who had his j-pouch removed because of fistulas but I am not sure if it affected his
spine I think his was causing him to have kidney problems. I think it was harder to determine which IBD you had 15 years ago
and you can have both. Good luck with your surgery I will say a little prayer for you.

Forum Moderator

Date Joined Feb 2006
Total Posts : 5697
   Posted 1/12/2010 8:55 AM (GMT -7)   
Do you feel bad enough to warrant your pouch removed? There are lots of folks that have Crohn's and have jpouches. They are able to keep their pouch and take meds to control the Crohn's. I have not heard of a fistula going to the spinal cord but Remicade might mitigate this. I would have a lot of questions to ask the doctor before I agreed to remove the pouch. I'd go for a 2nd opinion.

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

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