am adults story of EG

HI I am an adult with EG.

I will start right at the beginning of my story in my childhood.
I was always suffering with stomach ache as a child, I was diagnosed with abdominal migraines when I was 10. I was always picky with my food and would go through phases of what I would or wouldn't eat. I could never put weight on and was always on the tiny side. I was also classed as double jointed I guess now that would translate to hyper mobile.

In my teens I was diagnosed with irritable bowel. But continued to suffer on and off over the years. 8 years ago I had a really bad spell and had some tests done (we have colitis and crohn's in the family) I was diagnosed with celiacs, the gluten free diet helped for a few years. I then had more problems and cut out milk, again this helped.

Two years ago was when the problem really took hold. I started to lose weight ( I am 5ft 2 and then weighed between 7 1/2 and 8 stone I was tiny) and had really bad diarrhea, I would go to the toilet 20+ times a day and nothing was being digested. I became very weak and tired, my joints hurt and would swell I was sleeping around 16 hours a day.
All my blood tests kept coming back negative and didn't show anything up.

In June 2008 my bloods finally showed that I was very anaemic, elevated white blood cell count and showing signs of inflammation. At this point I was in and out of work on a weekly basis, I was signed off sick until things got sorted.

I couldn't get an appointment through the NHS for 6 weeks so I paid for my first appointments myself. I saw my consultant on the Tuesday and was in hospital the next morning having a scope. He transferred my across to the NHS and again I couldn't get a follow up for 6 weeks so I paid again. Two weeks later I was back to see him I was given the diagnosis of EG. I had never heard of it and went straight home to look it up on the net.

I was put on prednisone immediately which worked with in days for the first time in as long as I could remember I was not spending half my life in the loo.

I then continued to see him on the NHS and do so still every six weeks or so.

I am now on azathioprine, singular, ad-cal and risedronate (these counter act the steroids for osteoporosis) and lansoprazole for acid reflux (as he has now decided that I also have EE). I am on an elemental only diet ( I can have peppermint and chamomile tea, foxes mints and ribena)
I had 4 months off in 2008 and returned to work in the October since then I have had no time off due to my EG/EE. they time I have had off is due to infections etc due to being immunosuppressed. I have an understanding boss fortunately and they support my well. I am a teacher in a secondary school and work full time. I also try and keep fit by swimming and Pilate's / gym, when I am fit enough to do so.

I was asked to describe my pain so that parents could understand how the children feel when they are too young to explain themselves. In my joints mainly knees and ankles but my hands to get sore as well, it is like a dull ache that you feel you just want to rub, I only find that volterol gel works for this. The ache does keep me awake at night when it is bad, and nothing really seems to help me here with it. The pain I get in my stomach is like someone squeezing it and in my intestines it is more like a cramp.

Like I said I do have a fairly normal life and do work full time and I hope that this gives you hope that your child will have a reasonably normal life.
I am a very strong minded / willed person and I am determined not to let this take over my life and want to get on with it and do everything I can. I went hiking in Austria in the summer, I am going on a cruise next summer and I am going to do the three peak challenge with some of my pupils next year.

I hope this helps you all
Jane