Hi all,
I've had Crohn's for what feels like forever, but was only officially diagnosed in January 2016. It's basically confined to my ileum. Prior to my resection, I would feel normal but then have a week here and there of intense cramping pains like labour, in the centre of my abdomen above my belly button and I would be basically immobile for the whole week while they occurred, then I'd be fine again. Post-resection for 3-4 years I felt completely normal, never got those cramps and was very well. Then in May 2015 I got the cramps again for a week, then felt normal until September when they hit again.
I was diagnosed in January but since January I have felt unwell every single day until now. I have constant right side pain, fatigue if I try and walk anywhere for more than half an hour, and a general sense of poor wellbeing, however have not had a full blown case of the "cramps" since starting azathioprine.
I just can't believe it because all my test results are normal and my GI has written to me to say my disease is not currently active. I had an MRE scan last month with contrast and was shocked when I received the letter that it was entirely normal! I was certain they would find inflammation/stricturing or even a microperforation. My GI wrote that there is absolutely no evidence of narrowing! I am thinking I should take it with a pinch of salt as I read that DustyKat daughter had a normal MRE and was being operated on a week later for a bowel perforation. I think I will need another colonoscopy (last one was December 2015, which led to my diagnosis) and maybe that will make my GI acknowledge my suffering. She thinks I have major anxiety issues because I keep pressing her to find the route of my problems.
I am on 50mg of azathioprine (I don't know why it is so low, I weigh 50kg). I'm frustrated because I thought there was a good success rate for this medication for the people that can actually tolerate it like myself. I am not able to take any anti-TNFs due to a prior health problem when I was 18, which I believe basically leaves me entyvio (have read this mainly works in the colon so unlikely to help me), and stelera, which hasn't been approved here yet.
I am just feeling in total despair that I have not felt any better AT ANY POINT in 10 months during which time I have undergone 2 months entocort, 2 months prednisolone and 6 months azathioprine :frown:
I've had Crohn's for what feels like forever, but was only officially diagnosed in January 2016. It's basically confined to my ileum. Prior to my resection, I would feel normal but then have a week here and there of intense cramping pains like labour, in the centre of my abdomen above my belly button and I would be basically immobile for the whole week while they occurred, then I'd be fine again. Post-resection for 3-4 years I felt completely normal, never got those cramps and was very well. Then in May 2015 I got the cramps again for a week, then felt normal until September when they hit again.
I was diagnosed in January but since January I have felt unwell every single day until now. I have constant right side pain, fatigue if I try and walk anywhere for more than half an hour, and a general sense of poor wellbeing, however have not had a full blown case of the "cramps" since starting azathioprine.
I just can't believe it because all my test results are normal and my GI has written to me to say my disease is not currently active. I had an MRE scan last month with contrast and was shocked when I received the letter that it was entirely normal! I was certain they would find inflammation/stricturing or even a microperforation. My GI wrote that there is absolutely no evidence of narrowing! I am thinking I should take it with a pinch of salt as I read that DustyKat daughter had a normal MRE and was being operated on a week later for a bowel perforation. I think I will need another colonoscopy (last one was December 2015, which led to my diagnosis) and maybe that will make my GI acknowledge my suffering. She thinks I have major anxiety issues because I keep pressing her to find the route of my problems.
I am on 50mg of azathioprine (I don't know why it is so low, I weigh 50kg). I'm frustrated because I thought there was a good success rate for this medication for the people that can actually tolerate it like myself. I am not able to take any anti-TNFs due to a prior health problem when I was 18, which I believe basically leaves me entyvio (have read this mainly works in the colon so unlikely to help me), and stelera, which hasn't been approved here yet.
I am just feeling in total despair that I have not felt any better AT ANY POINT in 10 months during which time I have undergone 2 months entocort, 2 months prednisolone and 6 months azathioprine :frown:
