I have Crohn's Dsease - a not very nice illness of the digestive system.
History
I was first ill in January 1997 when i was in my first year at university - quite a few of us got dodgy tummies and were taken to hospital, day by day people got better and went home, i didnt.
I was diagnosed with IBS and given some medication.
Things didn't improve and I started to struggle with my uni work, I was admitted to Bridlington hospital for 2 weeks of tests.
On the last day i was given an ultra sound and they found a large cyst on my ovary, they thought this was rubbing my bowel and causing me trouble so a few months later they whipped that out.
Things still didnt improve. I left uni and went to work in a boarding school which was a great job cos i was never far from a toilet, but it was lonely and isolated and I left in April 2000.
For a few months i worked as a receptionist in A+E and signed up to do my teacher training.
Teacher training was GREAT but it really took it out of me, i only just made my days up to qualify in July 2001.
I was diagnosed with Crohns in March 2002, saw a surgeon in August and had almost 1 metre of my bowel removed in September just a few months before my wedding.
I was scheduled to have an ileostomy during the surgery but the surgeon changed his mind during the operation. I wish to this day he had done it - you will see why later.



I recovered fairly well from my resection and apart from a non-healing wound, it all went as planned.
We got married on Easter Sunday and i was fine.
A few month later i started to feel ill again - back and forth to the toilet many many times a day. This made work very difficult because i was not meant to leave the children unattended so had to find someone to sit with them while i went to the loo - sometimes i didnt have that long.
Inevitably i ended up too ill to work - i would go out to meet the kind man who gave me a lift to work and by the time i got around the corver i would need the toilet and have to come home.
The doctors said that they didnt think it could be the Crohn's because my inflammatory markers werent high. I was given pain killers but nothing to stop the 15-20 trips to the toilet every day.
We couldnt go out much, we couldnt go far and i worried that Mark would tire of it, being stuck in the house - thank god he is such a star!
We moved back to South Shields so that we were near my family so that they could help out if i was really poorly. I just got used to the toilet trips and the pain.
The doctor here arranged for me to have a capsule endoscopy which is a very new thing and i am very lucky to live in a region where they have one.
You swallow a large pill that has a camera inside and it takes 2 pictures a second, i think, all the way through your body. The advanatages of this must be obvious. If you have ever had a normal endoscope done you will appreciate how invasive it is. This was not. I lay on a bed with a huge battery pack and waited for the tablet to come back out. Simple!
While waiting for the test results i suddenly felt much worse and wasn't really coping emotinally with the isolation and being stuck in the house. I called the GI nurse at the hospital who got me in to see the specialist.
The result of the tests showed that I am full of active Crohn's disease - all horrible yacky yellow and black bits in me! Urgh! Strangely it was comforting to know exactly what was causing the trouble - not knowing is worse - your imagination can be a terrible enemy!
The upshot being that there is too much disease to operate on it so i am starting weekly injections of Methotrexate and have to go on an elemental diet. This means you can neither eat nor drink anything at all except the cartons of pre-digested enzymes that they give you. It ain't going to be easy, if i have contact with you and am a bit arsy - forgive me - i may be hungry!
This could go on for months!
The methotrexate is a form of chemotherapy which turned out to be very useful in treating Crohn's.
I will keep you posted on how it all goes.
UPDATE : June 2005
I have been on modulen food replacment for almost 13 weeks now. I have lost two and a half stone and am now a size 18-20 instead of 24-26!
The dietician isnt very pleased cos you aren't meant to lose weight on this treatment but what the hell do they expect i ask you!.
There have been developments however in my other treatment.
I started on injections of methotrexate which is a chemo drug and was injected once a week into my thigh. Sadly, after 5 weeks my liver test results wewre sky high and they had to stop the injections very quickly because they were risking long term damage to my liver.
I admit to being very down when this happened because i didint know what would happen next. I thought they might try me on infliximab and that worried me cos its a fairly radical treatment.
Anyway, the genius doctor had other plans. A different kind of chemo that is in digestable tablet form that i can take at home. I have been taking this for a couple of weeks.
The doctor said that any improvements i have experienced have been down to the modulen cos i havent had any of the drugs long enough for them to have made a difference yet.
I'm doing well with the modulen and keeping my chin up - it hasnt been easy and i have had some days when i was tempted to stuff my face but i never did cos i know this will help in the end.
My good days outweigh my bad days, i am not going to the toilet as many times and usually only a couple of times during the night, often without waking up properly (thank god mum bought me the chemical toilet for upstairs!)
I am very very tired some days. Some days i can go out for a good few hours and do well and some days i struggle just in house but i think thats the nature of the illness. I still cant go out on my own cos the pain killers and the chemo drugs make me a bit doddery!
Thats it for now will update when there are more developments.


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