Hi from a noob-
I am 35, been suffering from this affliction since I was about 19. Went through rounds of mis-diagnosis and doctoral incompetence until about 23. I have had one resection surgery and a temporary ostomy, losing a total of about 6ft of large and small intestine after suffering from bladder fistulas for several years. The only time since all this started that any treatment really seemed to help was when I was on Remicade before and shortly after the surgery. I have been on Asacol, Sulfasalazine, Prednisone, Budesonide, pretty much everything but azathioprine which the docs said I had some sort of genetic thing that would make it kill me. So, fast forward to now. I have been having a lot of flares over the last year or so, and without insurance (I was forced to leave my job and start my own business due to my inability to work consistently). The doc just prescribes prednisone, but doesn't want me on it all the time. He just put me back on sulfa because I can't afford anything else, even tho I told him it never worked before. Every time I taper off the steroids, at about 30mg I start having stomach pain again and I also have severe pain in my lower spine and hip joint. I can barely walk for about the first 2-3 hrs of every day. I am allergic to Vicodin class drugs (severe hives after surgery), and Percocet makes me too woozy to work (I run a machine shop and like having my fingers). Now that I am on sulfa again, I can't take Ibuprofen, and massive amounts of that and Tylenol have been the only way I have been able to function for a long time. Now I lay in bed crying for the first 2 hours of every day dreading the pain that I know is coming when I try to get up. I am now severely depressed, and the thought of living like this for the next 20 years is more than I can handle. I think of ending this half of my waking hours. I found this forum last night while doing a search about Jordan Rubin's maker's diet, which sounded good until I found all the info about it online, and now I feel more hopeless than ever. I really don't see any signs that this will ever be any better than it is right now, and if this is all I have to look forward to, I really don't want to be here. I am around people all the time, but feel absolutely ALONE.
I am 35, been suffering from this affliction since I was about 19. Went through rounds of mis-diagnosis and doctoral incompetence until about 23. I have had one resection surgery and a temporary ostomy, losing a total of about 6ft of large and small intestine after suffering from bladder fistulas for several years. The only time since all this started that any treatment really seemed to help was when I was on Remicade before and shortly after the surgery. I have been on Asacol, Sulfasalazine, Prednisone, Budesonide, pretty much everything but azathioprine which the docs said I had some sort of genetic thing that would make it kill me. So, fast forward to now. I have been having a lot of flares over the last year or so, and without insurance (I was forced to leave my job and start my own business due to my inability to work consistently). The doc just prescribes prednisone, but doesn't want me on it all the time. He just put me back on sulfa because I can't afford anything else, even tho I told him it never worked before. Every time I taper off the steroids, at about 30mg I start having stomach pain again and I also have severe pain in my lower spine and hip joint. I can barely walk for about the first 2-3 hrs of every day. I am allergic to Vicodin class drugs (severe hives after surgery), and Percocet makes me too woozy to work (I run a machine shop and like having my fingers). Now that I am on sulfa again, I can't take Ibuprofen, and massive amounts of that and Tylenol have been the only way I have been able to function for a long time. Now I lay in bed crying for the first 2 hours of every day dreading the pain that I know is coming when I try to get up. I am now severely depressed, and the thought of living like this for the next 20 years is more than I can handle. I think of ending this half of my waking hours. I found this forum last night while doing a search about Jordan Rubin's maker's diet, which sounded good until I found all the info about it online, and now I feel more hopeless than ever. I really don't see any signs that this will ever be any better than it is right now, and if this is all I have to look forward to, I really don't want to be here. I am around people all the time, but feel absolutely ALONE.