S
Schaeferm
Guest
Hello All, my name is Mark and was first DX with CD in November 1988. Spent many of the early years trying to gain control of the symptoms with Prednisone, Imuran, Asulfadine(?), 5-ASA enamas and so on. Finally found Asacol, and that was my wonder drug for about 6 years. Unfortunately, I developed a rare side effect of the Asacol, pericarditis with a pericardial effusion four times before we figured out it was the drug. Back to prednisone and eventually Remicaide where the second dose induced another rare side effect, a systemic lupus like reaction...never have been in so much pain..everywhere. Back to prednisone. Waited several years before I was willing to try Humira, but started it in May of 2008 with no success yet. My GI now wants to increase the dose to weekly but insurance is balking. I can not remember the last time I was not on prednisone and have now been DX with osteoporosis because of this lovely drug.
Feel blessed that to date I have not had to have any surgeries or fistulas but like everyone else, have had multiple hospital stays. I can relate to everyone's stories and I hope it helps to share issues. I have to admit to being pretty depressed at times, just so tired of fighting what seems like a losing battle at times, just wanting to be healthy and involved with my three kids- 15, 13 &12. Tired of trying to convince my GI doctor that the pain on my right side and front is real, despite the lack of a finding on CT scan. Also, according to my doc I have so many polyps in my colon that he can not biospy or remove all of them. I say, since we know that polyps can eventually develop into cancer, why not take the time to remove them all, or at least biopsy them. My hope on the horizon is a trip to University of Florida's GI department in Gainesville to evaluate what my options are now. I think with my lack of treatment options I'm a poster patient for a tertiary institution.
I appreciate everyone's openess and honesty, and look forward to exploring options and opportunities I find on this sight.
Fighting on in Jacksonville.
Feel blessed that to date I have not had to have any surgeries or fistulas but like everyone else, have had multiple hospital stays. I can relate to everyone's stories and I hope it helps to share issues. I have to admit to being pretty depressed at times, just so tired of fighting what seems like a losing battle at times, just wanting to be healthy and involved with my three kids- 15, 13 &12. Tired of trying to convince my GI doctor that the pain on my right side and front is real, despite the lack of a finding on CT scan. Also, according to my doc I have so many polyps in my colon that he can not biospy or remove all of them. I say, since we know that polyps can eventually develop into cancer, why not take the time to remove them all, or at least biopsy them. My hope on the horizon is a trip to University of Florida's GI department in Gainesville to evaluate what my options are now. I think with my lack of treatment options I'm a poster patient for a tertiary institution.
I appreciate everyone's openess and honesty, and look forward to exploring options and opportunities I find on this sight.
Fighting on in Jacksonville.
