Well,I thought I was basically out for even being considered for a stem cell transplant from what the doctor at university of Chicago..but I have a go light!i meet with dr Barnett on Tuesday then dr Burt on Wednesday with a colonoscopy on Friday! Whoa..that was quick work!i only called them tentatively last week. It was suggested by u of c that I do combo therapy..humira which hasn't been so effective for me and 6mp or imuran. We shall see what they say at northwestern. I'm staying open and if I sent do it then that's ok..
Stem cell transplant eval
- Thread starter Ckt
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Hello everyone!i feel like you are my crohns family!thank goodness for you all!well I have met dr Burt who does the stem cell transplants here at northwestern. I am still being evaluated and will send him pathology slides/reports from some of my surgeries from resections. He believes that I may respond with humira and methotrexate so we are giving it a go. I am for trying anything possible to help with increasing my quality of life. For the horrible and life altering diarrhea(I know there are many here who can relate!) I am going to start on tincture of opium as lomotil is like taking..well,nothing actually!and cholestyramine isn't a great option for me.
I'm feeling very positive about my experience here in general!i have spent about 6-7 days in the hospital and have been seen by internal med,gi,and immunology. It's actually been the best experience I've ever had in a hospital and you can imagine I have had a few!in other states and different countries!!ao thumbs way up for northwestern!!
Now on stem cell transplant..I can't help but tell you all that I really want it even given the huge risks involved. My life and the quality has just continued to go down the tubes. I'd rather try unconventional and potentially mortal treatment rather than live like this. I also believe this is the future of crohns treatment and can I say it?cure. Although no long term studies are available I think they will come to show a dramatic rise in cessation of symptoms and 'remission'..I think it's a testament to how much we want to live and live well if we are willing to put ourselves in a dangerous situation. Killing off your immune system by being given three toxic drugs then taking the risk of rejection of donor stem cells is pretty severe..but I am willing to do it.
But perhaps the combo drug regime will work splendidly and there will be no need for it. My concern is my pattern: seems I do pretty good for a year or two on the biologic du jour then it fizzles. I am reaching an age where I don't feel I have much time to waste..im51 and otherwise healthy but still..do I mess around for say 4 years and blow it?its a question I've left for the transplant nurse and maybe she can offer some insight..
If anyone is considering this, I can honestly say that northwestern is an amazing place. I would trust them literally with my life..saying a lot from a former icu nurse!:ghug:
I'm feeling very positive about my experience here in general!i have spent about 6-7 days in the hospital and have been seen by internal med,gi,and immunology. It's actually been the best experience I've ever had in a hospital and you can imagine I have had a few!in other states and different countries!!ao thumbs way up for northwestern!!
Now on stem cell transplant..I can't help but tell you all that I really want it even given the huge risks involved. My life and the quality has just continued to go down the tubes. I'd rather try unconventional and potentially mortal treatment rather than live like this. I also believe this is the future of crohns treatment and can I say it?cure. Although no long term studies are available I think they will come to show a dramatic rise in cessation of symptoms and 'remission'..I think it's a testament to how much we want to live and live well if we are willing to put ourselves in a dangerous situation. Killing off your immune system by being given three toxic drugs then taking the risk of rejection of donor stem cells is pretty severe..but I am willing to do it.
But perhaps the combo drug regime will work splendidly and there will be no need for it. My concern is my pattern: seems I do pretty good for a year or two on the biologic du jour then it fizzles. I am reaching an age where I don't feel I have much time to waste..im51 and otherwise healthy but still..do I mess around for say 4 years and blow it?its a question I've left for the transplant nurse and maybe she can offer some insight..
If anyone is considering this, I can honestly say that northwestern is an amazing place. I would trust them literally with my life..saying a lot from a former icu nurse!:ghug:
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