Hello Everyone,
I've been on here a while now and have finally decided I should write my story, to introduce myself and so I can get everything straight in my head partly.
I've had problems with my stomach/bowels for probably about five years, but my GP had always told me that I had IBS. So for years I've followed a 'healthy' diet of wholemeal bread, pasta, brown rice, lots of fruit and veg etc. Now I know this was obviously not doing me any good....!
About March 2009 things started to get worse. It came on quite slowly, but I noticed that I was going to the toilet more and more and that things were becoming a lot less formed. I also started getting more pains around my stomach area.
Eventually, in about April/May I started getting really stabbing pains in my stomach during the day and throughout the night. These would leave me screaming in agony and terrified of going to sleep. I started throwing up after I ate and was going to the toilet 10 - 15 times a day. My GP thought I had acid reflux, and prescribed me medicine for that, which didn't work. I went back, she suggested gallstones, I had an ultrasound, came back clear......She then decided I had severe constipation!?!? Not sure why, but I trusted my GP and went along with it. Having seen my GP 8 times in 6 weeks and still not feeling any better, I saw another doctor for a second opinion, he suggested referring me to a specialist gastroenterologist.
By now it was mid July, I was averaging 2 hours sleep a night, if that, and because of the pains I was being sent home from work at least 3 times a week.
On the 21st July, I woke up about 4am with pains in my chest and stomach, I have never been in so much pain, or been so scared. My fiance decided that I should go to our local A&E. I got seen pretty quickly and as luck would have it the doctor on that night was a gastroenterology specialist. He immediately gave me a clinical diagnosis of crohn's, just from my symptoms and the fact that my Mum has a history of colitis. He started me on Pred that day and managed to book me in for a colonoscopy and capsule endoscopy as an emergency the next week.
Both came back showing extensive small bowel and colonic disease. My specialist told me I'd probably always had crohn's and not IBS judging by the extent of the disease. He then put me on 125mg Azathioprine and 4800mg Asacol a day too.
By November I had reduced my Pred down to 10mg a day, but gradually I started getting worse again. I think I had an inflammation stricture, It got to the point where I hadn't slept for a week, and everything I ate came straight back up. I lost 1st in weight in a week. I had an emergency appt. with my gastro and the IBD nurse who admitted me to the hospital that day and put me on a hydrocortisone drip for 4 days. I luckily got better very quickly and the stricture went away.
However, I've been on the Aza for 5 months now and it doesn't seem to be doing anything. I can't lower my pred dosage below 30mg daily as my symptoms come back straight away. I'm waiting to hear from the IBD nurse about starting Infliximab and am getting really frustrated. They checked my fecal calprotectin level recently and it was 1379 (it should be below 60!) so my disease is still very very active.
I'm now starting to realise how frustrating this disease can be. I had thought that after 6 months things might be improving. Plus, having had a history of depression, I get really violent mood swings from the pred, which doesn't help much. But hey ho, you have to look on the bright side, at least I finally know what's wrong.
Sorry this is so long, it's been quite cathartic to write it all down. I feel like there's more to say, but I'll keep it at that at the moment.
Thanks for reading x
I've been on here a while now and have finally decided I should write my story, to introduce myself and so I can get everything straight in my head partly.
I've had problems with my stomach/bowels for probably about five years, but my GP had always told me that I had IBS. So for years I've followed a 'healthy' diet of wholemeal bread, pasta, brown rice, lots of fruit and veg etc. Now I know this was obviously not doing me any good....!
About March 2009 things started to get worse. It came on quite slowly, but I noticed that I was going to the toilet more and more and that things were becoming a lot less formed. I also started getting more pains around my stomach area.
Eventually, in about April/May I started getting really stabbing pains in my stomach during the day and throughout the night. These would leave me screaming in agony and terrified of going to sleep. I started throwing up after I ate and was going to the toilet 10 - 15 times a day. My GP thought I had acid reflux, and prescribed me medicine for that, which didn't work. I went back, she suggested gallstones, I had an ultrasound, came back clear......She then decided I had severe constipation!?!? Not sure why, but I trusted my GP and went along with it. Having seen my GP 8 times in 6 weeks and still not feeling any better, I saw another doctor for a second opinion, he suggested referring me to a specialist gastroenterologist.
By now it was mid July, I was averaging 2 hours sleep a night, if that, and because of the pains I was being sent home from work at least 3 times a week.
On the 21st July, I woke up about 4am with pains in my chest and stomach, I have never been in so much pain, or been so scared. My fiance decided that I should go to our local A&E. I got seen pretty quickly and as luck would have it the doctor on that night was a gastroenterology specialist. He immediately gave me a clinical diagnosis of crohn's, just from my symptoms and the fact that my Mum has a history of colitis. He started me on Pred that day and managed to book me in for a colonoscopy and capsule endoscopy as an emergency the next week.
Both came back showing extensive small bowel and colonic disease. My specialist told me I'd probably always had crohn's and not IBS judging by the extent of the disease. He then put me on 125mg Azathioprine and 4800mg Asacol a day too.
By November I had reduced my Pred down to 10mg a day, but gradually I started getting worse again. I think I had an inflammation stricture, It got to the point where I hadn't slept for a week, and everything I ate came straight back up. I lost 1st in weight in a week. I had an emergency appt. with my gastro and the IBD nurse who admitted me to the hospital that day and put me on a hydrocortisone drip for 4 days. I luckily got better very quickly and the stricture went away.
However, I've been on the Aza for 5 months now and it doesn't seem to be doing anything. I can't lower my pred dosage below 30mg daily as my symptoms come back straight away. I'm waiting to hear from the IBD nurse about starting Infliximab and am getting really frustrated. They checked my fecal calprotectin level recently and it was 1379 (it should be below 60!) so my disease is still very very active.
I'm now starting to realise how frustrating this disease can be. I had thought that after 6 months things might be improving. Plus, having had a history of depression, I get really violent mood swings from the pred, which doesn't help much. But hey ho, you have to look on the bright side, at least I finally know what's wrong.
Sorry this is so long, it's been quite cathartic to write it all down. I feel like there's more to say, but I'll keep it at that at the moment.
Thanks for reading x
