Hi,
I am new to this forum, but wanted to provide a resource for those who might be interested in m son's journey with Crohn's.
He first exhibited symptoms and was hospitalised at 10 months. Over the course of the next three years he tried every drug including many off-label attempts to find something to get him in remission. We even did enternal (iv) nutrition for six months which didn't help the ulceration, but enabled him to grow because his body was incapable of absorbing nutrients through his intestines. His disease caused almost complete ulceration throughout his entire gi tract including his esophogus and stomach. His doctors at UCSF said that he has the most severe case of Chron's that they have ever seen.
He essentially lived in the hospital as we repeatedly went on iv pred. trying to ween off of it but always had to return because of his constant extreme anemia[WIKI][COMMENT][/COMMENT][/WIKI]. He was having up to 30 bloody pools of stool a day and had a prolapsed colon many times.
Last april he recieved an autologous bone marrow transplant which helped him a great deal. Since June or so of 2011 he has been off of every drug other than a remicade infusion every 8 weeks. Before the BMT we tried every TNF-inhibitor including Remicade and nothing came close to touching his disease. Last week his labs showed that his ESR was way up to 48 so obviously the inflammation is back with a vengeance, but he is still doing pretty well and we are prepping to go in for a colonoscopy on Monday to see the extent of the inflammation/ulceration.
We documented our experience living through the BMT on a blog here and I have been trying to put it out there for people who might be interested in learning from our experience.
I am new to this forum, but wanted to provide a resource for those who might be interested in m son's journey with Crohn's.
He first exhibited symptoms and was hospitalised at 10 months. Over the course of the next three years he tried every drug including many off-label attempts to find something to get him in remission. We even did enternal (iv) nutrition for six months which didn't help the ulceration, but enabled him to grow because his body was incapable of absorbing nutrients through his intestines. His disease caused almost complete ulceration throughout his entire gi tract including his esophogus and stomach. His doctors at UCSF said that he has the most severe case of Chron's that they have ever seen.
He essentially lived in the hospital as we repeatedly went on iv pred. trying to ween off of it but always had to return because of his constant extreme anemia[WIKI][COMMENT][/COMMENT][/WIKI]. He was having up to 30 bloody pools of stool a day and had a prolapsed colon many times.
Last april he recieved an autologous bone marrow transplant which helped him a great deal. Since June or so of 2011 he has been off of every drug other than a remicade infusion every 8 weeks. Before the BMT we tried every TNF-inhibitor including Remicade and nothing came close to touching his disease. Last week his labs showed that his ESR was way up to 48 so obviously the inflammation is back with a vengeance, but he is still doing pretty well and we are prepping to go in for a colonoscopy on Monday to see the extent of the inflammation/ulceration.
We documented our experience living through the BMT on a blog here and I have been trying to put it out there for people who might be interested in learning from our experience.
