Just like to say that I'm soo pleased to find so much info, support that is out here in the www, I'm from the uk, I live in Newport south wales. I was diagnosed with crohns disease at last !!! In march of this year, now don't get me wrong I'm not happy that I've got it but after many years in the wilderness it was once to find out that I wasn't a hypochondriac !!! And that yes there was something wrong !!!
I'll apologise in advance as this might be a long one, so go grab yourself a refreshment before I start!!!.
According to my mum I've always been a sick kid and apparently if there were ever any childhood illness around I always according to her " have it real bad" . Over the years have had lots of tummy trouble but always thought it was a bug, something I'd eaten or hadn't cooked properly etc etc.
Fast forward to 2004, and after a very traumatic period in my personal life, I was rushed into hospital after going to the docs with a very large and painful lump in my bottom area. It turned out to be a pilonidal sinus!!!. I'd never heard of this before but anyway four unsuccessful ops over an eighteen month period it had not healed!!!
I won't go into detail on a public site but I was not happy with my treatment I made a big fuss, made an official compliant etc etc, got a second opinion who declared that he thought it was a fistula !!!
See not all us Brits have a stiff upper lip attitude lol !!!
Anyway another op follows, and with myself and my then partner, who now is my husband, doing our own research after healing problems and suggesting it to my consultant agreed to the treatment and it worked !!! Well kind of until last summer !!
Last July after a period of yet more tummy troubles I temporarily lost my sight in my right eye, I was in sooo much pain and after four trips to my gp over ten days !! Who were treating me for conjunctivitis!!! Even thou I was throwing tramodol down my neck like sweets and that wasn't even no where near dealing with the pain, was rushed to the emergency eye clinic with a diagnosis of uvietis.
After a long barrage of tests I was diagnosed with crohns disease, along with my eye which flares, I suffer really badly with flare ups every three to four weeks !!!! I have a gi and a specialist nurse, and I suppose it's all trial and error but at the mo it's really getting me down!!! I'm a really positive person normally who has a very wicked sense of humour and usually see the glass very much half full, not half empty.
Since march iv been placed on endorcort, don't know if i've spelt that right which initially was 9mg daily but since June I'm down to 6mg as my gi started me on azathiaprine but my body couldn't tolerate it !!! To the point where I was off work for seven weeks !!!. The list of side effects they say you can get boy !!! I literally had them all !!! No joke !!! Was going to be placed on I think mercaptupurine ??? But unfortunately three weeks ago was in really acute pain again !!! And ended up seeing my gi, who thinks my gall bladder is playing up!!!
So I'm due a scan Friday, had an MRI a few weeks ago and the result of that is that I'm seeing my gi next week along with a surgeon but at this present time I have no idea what the result showed!!! This made me very upset as when i asked what the results were, he stated that we need to deal with my issue of the gall bladder first,and leave the MRI result until I see him and the surgeon next week !!!!
There are so many other things I could put on this thread but I'm not joking I'd use up all of the world wide web hard drive !!!. Lol!!!
Anyway !!! Now please hold on I'm nearly there, go on go and take a toilet break !!
basically iv been told it's in my anus, and my small intestine, I suffer with mouth ulcers, knee pain, skin tags, a really nasty sore rash that breaks out on my booty !!! Etc etc.
What I'd like to know guys is does it get better? Any advice would be most welcome. Any suggestions with how to approach build a relationship up with my gi!!! Because I think he's already pissed with me at every a ppt as I bombard him with endless questions!!!.
I've made changes to my diet such as I no longer can tolerate any veggies, fruit etc. Basically anything that is healthy !!!! I've stopped eating dairy as I read about
research work on the map virus, what are your thoughts on that ?
At the mo it's five in the morning in the uk and I'm up yet again with my many trips to the bathroom with my best friend the toilet!!!! We've bonded very well over the last few years!!! Lol!!!
Anyway guys, I truly apologise for my long thread and to the moderator if I've done something wrong on here then please let me know. I would just like to say hello, thanks for setting up this great site and I look forward to your replies.