Hi all,
I'm posting this whilst in hospital. I was first diagnosed with oral facial crohns when I was 12 years old. However some 24years later I was found to have developed a stricture in my illeocecal valve in July 2011.
Since July 2011 I have had an uphill battle. I was a nurse in the NHS but got no support so left. I was placed on steroids which made me diabetic, and move moved to imuran. Unfortunately imuran caused me to suffer from neutropenia. Finally after much fighting I was placed on infliximab.
In September 2012 I had another colonoscopy as my pain, Big D, and lethargy were getting worse. When I went to see my consultant he was dismissive. He said it can't be my crohns as I'm showing no inflammation. He said there was only mild inflammation at most. He said its was just ibs and visceral hypersensitivity.
I decided to change hospitals. The new one was great. I have had a ct enterography and am waiting for a bile salt test before considering surgery. However things have gotten quite bad. About a month ago I was neutropeanic again and then two weeks ago was admitted into my old hospital with more abdo pain.
Now this where I'm stuck and need advice and or ideas. I've been in hospital two weeks. Initially they wanted me under my old dr but I declined. I supplied them with oxfords details and and have copies of there diagnosis. However they are not interested. I had a another normal ct scan which has shown anything. Have seen my notes they are going to stop the infliximab and send me home with no treatment. I don't know what to do. The pain and lethargy are still present although big D has settled mostly due to constipation.
I can't really take any more time off work. Don't really know what to do and my depression is getting worse. I don't feel suicidal but I don't feel believed and not too sure what's point.
Thanks for reading. Hope this makes sense.
I'm posting this whilst in hospital. I was first diagnosed with oral facial crohns when I was 12 years old. However some 24years later I was found to have developed a stricture in my illeocecal valve in July 2011.
Since July 2011 I have had an uphill battle. I was a nurse in the NHS but got no support so left. I was placed on steroids which made me diabetic, and move moved to imuran. Unfortunately imuran caused me to suffer from neutropenia. Finally after much fighting I was placed on infliximab.
In September 2012 I had another colonoscopy as my pain, Big D, and lethargy were getting worse. When I went to see my consultant he was dismissive. He said it can't be my crohns as I'm showing no inflammation. He said there was only mild inflammation at most. He said its was just ibs and visceral hypersensitivity.
I decided to change hospitals. The new one was great. I have had a ct enterography and am waiting for a bile salt test before considering surgery. However things have gotten quite bad. About a month ago I was neutropeanic again and then two weeks ago was admitted into my old hospital with more abdo pain.
Now this where I'm stuck and need advice and or ideas. I've been in hospital two weeks. Initially they wanted me under my old dr but I declined. I supplied them with oxfords details and and have copies of there diagnosis. However they are not interested. I had a another normal ct scan which has shown anything. Have seen my notes they are going to stop the infliximab and send me home with no treatment. I don't know what to do. The pain and lethargy are still present although big D has settled mostly due to constipation.
I can't really take any more time off work. Don't really know what to do and my depression is getting worse. I don't feel suicidal but I don't feel believed and not too sure what's point.
Thanks for reading. Hope this makes sense.