Hello, I have had colitis for aprox. 3 years and just recently had the jpouch surgeries x3. I also have AS for aprox. 2 years. My family DR. doesn't want me to go on an antiinflamatory to help with the AS pain for fear of messing with the jpouch and small intestines. He said I could still possibly get colitis or crohns in my small intestines. My questions are1. is this true? I thought once it was gone, it was gone and 2. Do I need to be on some form of antiinflamatory to slow the progression of my AS or will the tramacet he has prescribed do the trick? Does anyone else suffer from AS as well and if so what meds have you been prescribed and how effective are they, any side effects? Thanks for your time and have a good day!
In all likelihood your colitis is indeed gone, but it's not guaranteed. Some people do get non-intestinal symptoms of colitis, some develop colitis in the small cuff of rectum left in during the surgery ("cuffitis"), and some develop Crohn's disease.
NSAIDs have some extra problems for people with J-pouches. At a minimum they increase the risk of pouchitis. Nevertheless, some people successfully use them for years, though.
Thank you Scott, you have been very helpful!
Tramacet will not alter your AS disease course. It is only an analgesic with NO anti-inflammatory properties. AS has a course that runs independent of the IBD course. There is a type of peripheral arthritis that tends to improve with colectomy, but not AS. I was diagnosed with enteropathic arthritis (a spondylitis similar to AS) after about 20 years of symptoms.
I was able to take high dose NSAIDs for my enteropathic arthritis for about a decade before liver inflammation and pouchitis forced me to stop. Since 2005 I have been taking one biologic or another, currently Cimzia. I also take NSAIDs for short courses when I have a flare, and even prednisone if it is really bad. I am not in perfect shape, but I function OK. Current research indicates that early medical intervention does help slow progression.
I would skip your primary doc's advice and seek a more expert opinion from your rheumatologist. The best site I have found for spondylitis information is here:
Thanks Jan, I took a look at the website and it was very informative. I have seemed to have exhausted all my other options for many of the biologics, my only other option was Nsaids now that my colitis was removed I thought I could try them again. I had very bad reactions to humira, imuran, methotrexate. Prednisone worked well, but isn't a long term medication due to the side effects. Thanks for sharing your story, sorry to hear what you are going through and hope all goes well with you in the future.
She is on Humira, which covers her IBD and arthritis. In kids, they have a low tolerance for arthritis in the SI joint and go pretty much straight to a biologic. We were waiting on Enbrel approval when she flared, so had to switch to Humira.
She has great control of both autoimmune issues at this time. You could ask about a different biologic. Or perhaps you can't. They frown on her taking NSAIDS, and while I know we *can* take them under supervision, there are still risks. But all meds have risks, you have to just weigh them.
Thanks Rachelraven, I am sorry to hear about your daughter, it definitely isn't an easy thing to go through or to have to watch while someone you love has to go through. I too was on humira and it worked amazing, I felt like a "normal" person, but an MRI scan showed that I had brain lesions, so they immediately took me off it and can no longer take any meds from that class of drugs just in case. Similar things happened when taking other biologics from different groups, was hoping after colitis was removed I could be put on NSAIDS, (which by the way were what sent my colitis out of control) but I was told no. I wish you and your daughter all the best and thanks for the help, I appreciate it.
You are sort of stuck between a rock and a hard place, with no good choices. If it were me, I'd see my rheumatologist and work out a plan where you have a trial with NSAIDs (maybe Celebrex or Mobic or Relafen), understanding that you'd have to discontinue if you developed side effects. How about sulfasalazine? It is primarily useful for peripheral arthritis, but there is some evidence for some effect with the axial disease. I do take it along with the Cimzia and my pain meds.
My thoughts are that if you tolerate the NSAIDs it could improve your quality of life and perhaps by the time you develop issues, they will come up with new treatments. For me, it was important to be functional, even if there were risks. My life is not perfect, but it is good enough!
Here is the meds currently being used.
Thanks Jan, I really appreciate your time and advice. I will take your info with me to my rheumatologist and see what she has to say. All the best