where to next?
Hi all. I didn't plan in posting here but I'm currently sitting in thehospital and don't know what to do with myself.
I'm 23 years old and was diagnosed in 1996. Since then I've done multple rounds of bowel rest and tpn, have had 3 resections, tune feeding and been on more meds then I can remember. My saving grave turned out to be remicade. It kept me in remission for almost 8 years. But sadly nothing lasts forever. In 09 it started lossinc its effectiveness which called for a new plan of action. I tried humira and entocort but nothing worked other then predisone. For me the side effects of predisone out weigh the positive effects so surgery was done at the end of Dec 2010.
This is where the fun really began. After surgery 2 weeks later I ended up back in hospital with a fistula/abcess. It was a very frustrating stay, it seemed the dr's couldn't figure out the problem and weren't telling me anything. 15 days later I left the hospital with a prescription for cipro, flagyl, abd humira to try again (even tho it did nothing in the past).
Finally we move foraward a month and I'm back in the hospital. I was initially admitted for nutrion control and observation because of the 40 pound weight loss in 2 months. An MRI was done a few days ago and it shows I'm more flared then before surgery, I have 2 strictures in my large bowel, and the fistula is still there and going strong. My MRI a month ago just before discharge apparently showe the same thing and no one even told me! Currently I had a cooks catheter put in for some more TPN To rest the bowel, started imuran again and increased humira to weekly. That's all there is. Hopefully I can start TPN at home asap.
Hi all. I didn't plan in posting here but I'm currently sitting in thehospital and don't know what to do with myself.
I'm 23 years old and was diagnosed in 1996. Since then I've done multple rounds of bowel rest and tpn, have had 3 resections, tune feeding and been on more meds then I can remember. My saving grave turned out to be remicade. It kept me in remission for almost 8 years. But sadly nothing lasts forever. In 09 it started lossinc its effectiveness which called for a new plan of action. I tried humira and entocort but nothing worked other then predisone. For me the side effects of predisone out weigh the positive effects so surgery was done at the end of Dec 2010.
This is where the fun really began. After surgery 2 weeks later I ended up back in hospital with a fistula/abcess. It was a very frustrating stay, it seemed the dr's couldn't figure out the problem and weren't telling me anything. 15 days later I left the hospital with a prescription for cipro, flagyl, abd humira to try again (even tho it did nothing in the past).
Finally we move foraward a month and I'm back in the hospital. I was initially admitted for nutrion control and observation because of the 40 pound weight loss in 2 months. An MRI was done a few days ago and it shows I'm more flared then before surgery, I have 2 strictures in my large bowel, and the fistula is still there and going strong. My MRI a month ago just before discharge apparently showe the same thing and no one even told me! Currently I had a cooks catheter put in for some more TPN To rest the bowel, started imuran again and increased humira to weekly. That's all there is. Hopefully I can start TPN at home asap.