- Joined
- Nov 9, 2015
- Messages
- 2
Hi I'm Amy, I'm 24 and have Crohn's Disease.
It has been a long process to get to this point and I feel as if I need advice as I am not sure where to go next with my treatments.
It has taken three years and many tests for the doctors to diagnose me with Crohn's Disease. I first had a colonoscopy two years ago after a year and a half of sickness, diarrhea and chronic fatigue which I ignored. (stupid I know) After the Colonoscopy my doctor told me I had inflammation in my intestines the terminal ileum and caecum and he put me on Pentesa, at this point he didn't mention anything of Crohn's or Ulcerative Colitis. I thought that the tablets would take the inflammation away and that would be it. After a year on Pentesa and with my symptoms worsening rather than getting better I was sent for an Endoscopy as I was being sick everyday at least five times a day and going to the toilet even more than that.
The Endoscopy came back clear other than a tiny bit of inflammation in my Esophagus which they believed to be from me being sick all the time. I went back to see my specialist and at this point he told me I had Ulcerative Colitis and set me up with a nurse in the IBD clinic. He then arranged for an MRI on my small intestine and put me on Entocort.
After three weeks on Entocort, I had an extremely strange reaction. Half of my face became paralyzed it was believed to be bells palsy. I ended up in hospital for a week after it was discovered that my blood pressure was 215/140 and they did a CT scan on which they found a small white spot in the middle of my brain. But after a number of MRIs they put this down to an abnormality.
I was wondering if anyone else has had the issue of Bells Palsy and excessively high blood pressure whilst on Entocort?
After my MRI I went back to my specialist who proceeded to tell me that I did in fact have Crohn's Disease not Ulcerative Colitis. It was present both in my large and small Intestines with Significant thickening of the intestine walls but no abscesses or strictures. I was then put onto azathioprine which again after three weeks of being on put me back into hospital, this time with severe pancreatitis.
I am now being given the options of Humira and Infliximab and I was wondering which people would recommend, I was also wondering if there was anyone else that has struggled with the different medications that are given and if there is any reason for it?
I have also had the problem of being told by a number of doctors that I do not look like I have Crohn's disease. It has been frustrating and overall upsetting as I feel like they think I am lying. Has anyone else had to deal with this from their doctors?
My boyfriend, friends and family have been absolutely amazing through all this but they only know as much as I do about this disease, it would be nice to have some feedback from people that understand the disease and have advice on how to kick it into remission
Thank you in advance
(Sorry if this comes across as whiny):blush:
It has been a long process to get to this point and I feel as if I need advice as I am not sure where to go next with my treatments.
It has taken three years and many tests for the doctors to diagnose me with Crohn's Disease. I first had a colonoscopy two years ago after a year and a half of sickness, diarrhea and chronic fatigue which I ignored. (stupid I know) After the Colonoscopy my doctor told me I had inflammation in my intestines the terminal ileum and caecum and he put me on Pentesa, at this point he didn't mention anything of Crohn's or Ulcerative Colitis. I thought that the tablets would take the inflammation away and that would be it. After a year on Pentesa and with my symptoms worsening rather than getting better I was sent for an Endoscopy as I was being sick everyday at least five times a day and going to the toilet even more than that.
The Endoscopy came back clear other than a tiny bit of inflammation in my Esophagus which they believed to be from me being sick all the time. I went back to see my specialist and at this point he told me I had Ulcerative Colitis and set me up with a nurse in the IBD clinic. He then arranged for an MRI on my small intestine and put me on Entocort.
After three weeks on Entocort, I had an extremely strange reaction. Half of my face became paralyzed it was believed to be bells palsy. I ended up in hospital for a week after it was discovered that my blood pressure was 215/140 and they did a CT scan on which they found a small white spot in the middle of my brain. But after a number of MRIs they put this down to an abnormality.
I was wondering if anyone else has had the issue of Bells Palsy and excessively high blood pressure whilst on Entocort?
After my MRI I went back to my specialist who proceeded to tell me that I did in fact have Crohn's Disease not Ulcerative Colitis. It was present both in my large and small Intestines with Significant thickening of the intestine walls but no abscesses or strictures. I was then put onto azathioprine which again after three weeks of being on put me back into hospital, this time with severe pancreatitis.
I am now being given the options of Humira and Infliximab and I was wondering which people would recommend, I was also wondering if there was anyone else that has struggled with the different medications that are given and if there is any reason for it?
I have also had the problem of being told by a number of doctors that I do not look like I have Crohn's disease. It has been frustrating and overall upsetting as I feel like they think I am lying. Has anyone else had to deal with this from their doctors?
My boyfriend, friends and family have been absolutely amazing through all this but they only know as much as I do about this disease, it would be nice to have some feedback from people that understand the disease and have advice on how to kick it into remission
Thank you in advance
(Sorry if this comes across as whiny):blush:
