Hi all,
I was wondering if someone could help me...
So basically I was "diagnosed" with Crohn's early 2009. Well, if only it was that simple!! 2008 was a pretty horrid year for things going wrong left, right and centre. We had a lot of stress as a family but I seemed to cope well until November of that year. I was vomiting or rushing to the loo after eating or drinking, completely exhausted and, understandably, feeling very sorry for myself. I went to see my GP who diagnosed me with gastointeritus and said I would be feeling better after 2 weeks. Provided me with a sick note and sent me on my way!
3 weeks later nothing had improved so I came to the conclusion that my doctor was wrong! I kept returning and kept being signed off. Eventually I was off for a total of 5 weeks. Luckily my work are very understanding and because I felt better after the rest I returned to work in the new year. My Stomache was still playing up but the vomiting settled slightly.
I returned to see a different doctor at my surgery who instantly referred me to a gastointerologist. I decided to utilise my private health cover to obtain quicker diagnosis... So I thought.. The specialist did some blood tests which showed a raised CRP of 28 and decided it sounded like Crohn's but wanted to check by performing a colonoscopy, then an endoscopy, then another colonoscopy, these all came up clear... So he performed a capsule endoscopy where he noticed scarring in my terminal ileum. This, to him, confirmed his initial diagnoses. Therefore I was put on a course of Prednisone. This did not lower my CRP or ease the symptoms. I just piled on the weight and suffered horrendous mood swings!
He then sent me for a MRE where they found scarring in the terminal ileum again, I was told this could only be one of two things, Crohns disease, or a reaction from drinking unpasturised milk in India... I've never been to india! I am then put on Azathioprine which makes me vomit, sulfalsalazine which I end up having an anafalactic relation to so am taken off immediately, pentasa which increases the diarehea. As you have probably guessed, I am someone that is allergic to many medications, my specialist tried every group of medication with me but no luck. He mentioned Humira but as this drug is rather potent and due to my history of reactions to other drugs he felt that the risk was too high.
I was then recommended to have a right hemicolectomy. I went to all the councelling, read all the horror stories but prepared myself to wake up and have a break from the pain and diarehea. However when I awoke, I was told by a nurse they had removed my appendix... Not performed a right hemicolectomy... I was confused but relived when told they didn't see any sign of the crohns so as I had scarring on my appendix this must have been what was causing the symptoms so I would soon be better. They also said it could have been IBS causing the diarehea as well.
5 weeks later, back to square one. Same symptoms, but discharged from seeing private specialist, went to see NHS specialist, told yes it's crohns, no its not, yes it is... Can't take any meds so they can't help me, if I have a flare up I hve to rest... CRP now 39 and stuck at home in bed!
My doctor has signed me off again as I am exhausted all the time and as I am unable to take medication rest is a must.
Has anyone else had a similar experience or have I just been unlucky with this?
Thanks
I was wondering if someone could help me...
So basically I was "diagnosed" with Crohn's early 2009. Well, if only it was that simple!! 2008 was a pretty horrid year for things going wrong left, right and centre. We had a lot of stress as a family but I seemed to cope well until November of that year. I was vomiting or rushing to the loo after eating or drinking, completely exhausted and, understandably, feeling very sorry for myself. I went to see my GP who diagnosed me with gastointeritus and said I would be feeling better after 2 weeks. Provided me with a sick note and sent me on my way!
3 weeks later nothing had improved so I came to the conclusion that my doctor was wrong! I kept returning and kept being signed off. Eventually I was off for a total of 5 weeks. Luckily my work are very understanding and because I felt better after the rest I returned to work in the new year. My Stomache was still playing up but the vomiting settled slightly.
I returned to see a different doctor at my surgery who instantly referred me to a gastointerologist. I decided to utilise my private health cover to obtain quicker diagnosis... So I thought.. The specialist did some blood tests which showed a raised CRP of 28 and decided it sounded like Crohn's but wanted to check by performing a colonoscopy, then an endoscopy, then another colonoscopy, these all came up clear... So he performed a capsule endoscopy where he noticed scarring in my terminal ileum. This, to him, confirmed his initial diagnoses. Therefore I was put on a course of Prednisone. This did not lower my CRP or ease the symptoms. I just piled on the weight and suffered horrendous mood swings!
He then sent me for a MRE where they found scarring in the terminal ileum again, I was told this could only be one of two things, Crohns disease, or a reaction from drinking unpasturised milk in India... I've never been to india! I am then put on Azathioprine which makes me vomit, sulfalsalazine which I end up having an anafalactic relation to so am taken off immediately, pentasa which increases the diarehea. As you have probably guessed, I am someone that is allergic to many medications, my specialist tried every group of medication with me but no luck. He mentioned Humira but as this drug is rather potent and due to my history of reactions to other drugs he felt that the risk was too high.
I was then recommended to have a right hemicolectomy. I went to all the councelling, read all the horror stories but prepared myself to wake up and have a break from the pain and diarehea. However when I awoke, I was told by a nurse they had removed my appendix... Not performed a right hemicolectomy... I was confused but relived when told they didn't see any sign of the crohns so as I had scarring on my appendix this must have been what was causing the symptoms so I would soon be better. They also said it could have been IBS causing the diarehea as well.
5 weeks later, back to square one. Same symptoms, but discharged from seeing private specialist, went to see NHS specialist, told yes it's crohns, no its not, yes it is... Can't take any meds so they can't help me, if I have a flare up I hve to rest... CRP now 39 and stuck at home in bed!
My doctor has signed me off again as I am exhausted all the time and as I am unable to take medication rest is a must.
Has anyone else had a similar experience or have I just been unlucky with this?
Thanks