• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

UC, then Crohn's, now seton - glad to find this forum!

Location
Uk
Hi all,

I'm Lisa. I'm 32 and was diagnosed with UC when I was 18. I had multiple courses of steroids (and was progressively crazier with each lot!) and ended up on aza which worked like a charm. I came off it in 2009 after many years in remission, and was absolutely fine until I became pregnant in 2011, at which point my symptoms flared and never really settled.

After the birth of my son things became worse; constant D and bleeding and pain, so I underwent another colonoscopy last Sept and was told that I actually now have CD, confirm on biopsy. I'm very lucky to have minimal small bowel involvement at present, but my symptoms have been deteriorating again since Christmas, despite maximal aza and mesalazine.

I have lost a lot of weight, can't seem to keep it on despite eating (I also have coeliac disease - my bowels are clearly my weak spot :lol2:), bad D, pain, mouth ulcers etc etc

I went in for surgery on a large perinatal abscess and fistula 2 weeks ago, but the seton was too tight and I was left in agony so underwent a further op 2 days ago where they found the seton was so tight it had embedded in my skin, blocking the fistula tract and causing the abscess to reform :ybatty: Feels much better so far after second op, thank goodness.

I'm supposed to be starting remicade once the abscess is settled as it all seems to have snow-balled very quickly. I feel like I'm starting again in terms of understanding my disease...I was so used to UC and knew where I stood with it, but this is now a whole different ball game with completely different symptoms which is scary.

I guess I'm surprised to be heading for remicade so soon after my (re)diagnosis, even though I think it's the right thing for me.

Anyway, thanks for reading. I'm so glad to have found this forum as its hard to discuss with people IRL.
 

nogutsnoglory

Moderator
I'm so sorry that you have had so many ups and downs and unpleasant surprises. I know what you mean about constantly learning about this disease. I have always had Crohn's and know quite a lot about it but I'm presented with new challenges and find myself finding out new things about this strange beast they call Crohn's.

Have you visited our fistulas, fissures and abscesses sub-forum? http://www.crohnsforum.com/forumdisplay.php?f=76
 
Location
Uk
Thank you so much for your replies.

I really hope remicade works for me. Have NOT enjoyed surgery!

NGNG, I've had a lurk around there. It is so helpful to hear others' experiences. I had never even heard of a fistula 6 months ago as I never had any of these sort of problems with the UC!
 
Top