Welcome to Healing Well, as sufferer! I'm sorry to learn that you had to endure 4 weeks in the hospital. My last hospitalization was a nightmare. There was a problem with the air mattress the bed was equipped with and the staff failed to listen to my complaints that I was lying on nothing but the metal frame. I slept standing up leaning on the bed at its highest level. If I ever had to spend 4 weeks in the hospital I would become a candidate for the psych ward.
Sorry for getting off topic. I have AS and Crohn's. Not sure which came first. I had lots of difficulties with pain control and immobility from inflammation in my SI joints and enthesitis around most major joints. Then I went on Remicade. I was so much better. My Crohn's gut issues went into remission and the AS calmed down to a mostly tolerable level. Then Remicade stopped working. Tried Humira but had a severe reaction. I was off the anti-TNF meds for a year and the inflammation slowly crept back . I lost more and more mobility and my quality of life stunk. Rheumy put me on Simponi, a newly approved anti-TNF for AS, and yahoo! I am much better. I have had one flare of inflammation in my SI joints while on the Simponi but I believe that was caused by stress due to my mother's illness and having to drive and sit for long periods of time. Got my SI joints injected with steroids and that resolved that flare. So I am trucking around pretty good but I do have limits on what I can do physically.
Sitting is the most painful of all activities for me. I haven't been to a movie theater in years because it is just to painful to sit. Thankfully I have good leg strength probably from spending about 16 hours a day standing. I even watch TV standing up.
Are you seeing a rheumatologist? Mine has taken the lead in treating my problems. My gut is pretty much a non-issue so the GI is letting the rheumy tinker with my meds trying to optimize my health. Have you tried any of the anti-TNF meds? Do you have any other complications from the AS? I was just diagnosed with pulmonary artery hypertension caused by the AS.
Again, welcome to Healing Well! Sorry you are having to cope with both issues but you do have company here!
Moderator Crohn's Disease & Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, asthma, severe allergy and a host of other medical problems.