Skip to main content

Replies sorted oldest to newest

ctbarrister,

Glad to hear that you are doing so well. Just a curious question, why Remicade? are you still dealing with crohns?

You are happy with your j-pouch? was a good decision for you? I will be having surgery soon that will end up with a j-pouch,,,,,at least that is what I am leaning towards

Thanks for the help and info

Remicade was necessary because my annual scopes showed that while the other meds (antibiotics, entocort) were treating the symptoms, the inflammation was not getting better. Since I had dysplasia in my colon and the rectal cuff is left in when they perform the surgery, inflammation isn't a good thing.  It's generally not a good thing but the preoperative diagnosis of dysplasia in the colon makes it an ever bigger concern.

The Remicade which I started November 2015 cleared up the inflammation in my pouch but I also have inflammation above the pouch that developed about 10 years ago.  It was initially believed that this was due to "backsplash stool" and SIBO since there is no backsplash valve in the J pouch as there was in the colon.  It may also represent Crohn's.  All diagnostic testing has been inconclusive.  It is that inflammation above the pouch that has been a bit more resistant to treatment.  It's likely a manifestation of Crohn's or Crohn's like IBD which developed long after I got the J Pouch (15 years plus).  What people forget is that what causes IBD is an autoimmune disorder which is not taken out of our bodies with surgery.  That means the rest of your bowels are prone to having something happen or develop and surgery never means you are out of the woods and nothing is ever going to happen to your intestinal tract the rest of your life.

Despite the chronic inflammation, I have had a J Pouch for 24 years and a very good quality of life, much better than what I had with UC.  I have been always under the impression that I am dealing with a new disease since my surgery because things dramatically changed for the better when I had surgery and I never again had pain or bleeding like I did before surgery.

Good luck-

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×