Hello All
I have had Crohns disease for 36 years - I was diagnosed at age 15 but had had problems for a couple of years prior to that, mainly severe abdominal pain, diarrhoea and weight loss. I had the usual medical treatments which seemed to help, but I did have side effects from continued use of steroids (including some osteoporosis).
I went through a number of nasty investgations which was traumatic aged 14.
I was eventally diagnosed with mainly large bowel Crohns including my rectum and anus. Wrecked my last two years at School - I was never in!
Over the next few years I developed severe arthritis in my hip and had big problems with uveitis.
In the late 80's my rectum fistulated with my bladder and also several sites on my bum, had to wear pads down the undies for years. Agony. I put up with this for a number of years but finally gave in and had a pan procto collectomy, including removal of the anal canal. I now have a permanent ileostomy. A few years after this operation the area around the stoma fistulated so it had to be resited on the other side.
My experience is that having a good (interested) consultant is key - I had one when being treated at Hope Hospital in Salford, Greater Manchester. He really did safe my life on two occasions (he is retired now).
In all this time I have only had 4 years of relapse 1988 -92 however, I did go back to Higher Education and achieved a first degree and a masters.
I am still on and off the steroids and just hope for no more fistulae.
Best wishes
I have had Crohns disease for 36 years - I was diagnosed at age 15 but had had problems for a couple of years prior to that, mainly severe abdominal pain, diarrhoea and weight loss. I had the usual medical treatments which seemed to help, but I did have side effects from continued use of steroids (including some osteoporosis).
I went through a number of nasty investgations which was traumatic aged 14.
I was eventally diagnosed with mainly large bowel Crohns including my rectum and anus. Wrecked my last two years at School - I was never in!
Over the next few years I developed severe arthritis in my hip and had big problems with uveitis.
In the late 80's my rectum fistulated with my bladder and also several sites on my bum, had to wear pads down the undies for years. Agony. I put up with this for a number of years but finally gave in and had a pan procto collectomy, including removal of the anal canal. I now have a permanent ileostomy. A few years after this operation the area around the stoma fistulated so it had to be resited on the other side.
My experience is that having a good (interested) consultant is key - I had one when being treated at Hope Hospital in Salford, Greater Manchester. He really did safe my life on two occasions (he is retired now).
In all this time I have only had 4 years of relapse 1988 -92 however, I did go back to Higher Education and achieved a first degree and a masters.
I am still on and off the steroids and just hope for no more fistulae.
Best wishes
