I am EIGHTEEN YEARS post total Colectomy for UC. Diagnosed with UC at age 8, surgery at 18, now 36. Past 3-4 years have slowly been developing GI symptoms again as well as arthritis. Seen by rheumatology 2 years ago, negative testing for Rheumatoid Arthritis so assumed to be IBD related. Was on Methotrexate, had lots of side effects including nausea, mouth sores and hair loss. Five months ago referred to a GI after not seeing one in about 15 years. Diagnosis is basically recurrent pouchitis and IBD (unspecified), but no CD. Now on Sulfasalazine. Can't take NSAIDS due to bleeding episodes, Tylenol no help, Tramadol made me dizzy and "out of it". I'm very active with 3 young children, but this joint pain is very bothersome. Painful joints, stiffness, not much swelling, low back pain. Anyone out there post Colectomy still dealing with IBD and arthritis???
Post Total Colectomy for UC now Enteropathic Arthritis
- Thread starter Blanchmom
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Hi and welcome!
My husband and daughters have AS. Enteropathic arthritis is very similar, it is another spondyloarthropathy. In terms of quality of life and being able to function, biologics helped my daughters most. I can understand the hesitation to be on them (and I certainly agonized over them before putting my teenagers on them!) but I can honestly say we have never regretted it for a single minute.
We've also tried Arava which is similar to Methotrexate (my younger daughter has trouble tolerating MTX). My daughter that has IBD is allowed to take NSAIDs because her AS is so much worse than the Crohn's. It took a LOT of trial and error to find one that suited her.
The Spondylitis Association of America has a lot of good information about treatments.
Good luck!
My husband and daughters have AS. Enteropathic arthritis is very similar, it is another spondyloarthropathy. In terms of quality of life and being able to function, biologics helped my daughters most. I can understand the hesitation to be on them (and I certainly agonized over them before putting my teenagers on them!) but I can honestly say we have never regretted it for a single minute.
We've also tried Arava which is similar to Methotrexate (my younger daughter has trouble tolerating MTX). My daughter that has IBD is allowed to take NSAIDs because her AS is so much worse than the Crohn's. It took a LOT of trial and error to find one that suited her.
The Spondylitis Association of America has a lot of good information about treatments.
Good luck!
