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Autoimmune Disorders Community
This is an un-mediated Patient-to-Patient Forum only. This forum is for questions and support regarding Autoimmune topics such as: Acute disseminated encephalomyelitis (ADEM), Addison's disease, Ankylosing spondylitis, Antiphospholipid antibody syndrome (APS), Aplastic anemia, Autoimmune hepatitis, Autoimmune Oophoritis, Celiac disease, Crohn's disease, Diabetes mellitus type 1, Gestational pemphigoid, Goodpasture's syndrome, Graves' disease, Guillain-Barré syndrome (GBS), Hashimoto's disease, Idiopathic thrombocytopenic purpura, Kawasaki's Disease,
Lupus erythematosus, Multiple sclerosis, Myasthenia gravis, Opsoclonus myoclonus syndrome (OMS), Optic neuritis, Ord's Pemphigus, Pernicious anemia, Polyarthritis, Primary biliary cirrhosis, Rheumatoid arthritis, Reiter's syndrome, Sjögren's syndrome, Takayasu's arteritis, Temporal arteritis, Warm autoimmune hemolytic anemia, Wegener's granulomatosis
Auto-Immune Diseses
by Jules561, Jul 12, 2008 07:36AM
I'm just going to outline a brief medical history (if I can??). At 14 I was diagnosed with Ulcerative Colitis, I was seriously ill, had to have 95% of my large intestine removed which left me with an ileostomy, I had that then reversed 6 months later. I had a j-pouch for 10 years - it worked successfully without any problems for approx 1 year, from then on I was suffering from fistulas & I was constantly in pain & running to the toilet. Also during this time I was having serious lower back pain, I was in & out of hospital but the doctors hadn't a clue what was wrong with me. I seriously thought I was going MAD!! Eventually nearly 3 years ago I couldn't take any more pain & I had no quality of life, I couldn't even sit down so I decided to remove the pouch & rectum & have a permanent bag - It was torture to face, it was the worst time of my life mentally but I can say now that the whole torment & months of recuperating was well worth every minute. I'm like a new woman!!!
Till last year I couldn't get out of bed, I couldn't move an inch and I was on morphine Injections to numb the pain, but even that wasn't working. weeks later I was diagnosed with Ankylosing Spondylitis - this sounds strange but it was such a relief to finally know that I wasn't going mad. Also while the doctor's were carrying out blood tests they found an abnormal reading of my liver enzymes, I had to go for further tests and then they diagnosed me with early Primary Sclerosing Cholangitis.. I was told that these 3 diseases are all linked to Auto-Immune Disease and that PSC is more prone in people with inflammatory bowel disease as bacteria passes from the intestine to the liver.
So basically what I am asking -
1. Has anyone with the HLA-B27 gene (that I carry) gone through anything similar to me - I need to know I'm not alone...
2. How are ye managing these diseases?
3. Does anyone know the outcome of Sclerosing Cholangitis? I am on Ursofalk capsules which I take at night. I know I am at the early stages and I have no symptoms yet but does anyone know what I'm up against in the coming years?????
Till last year I couldn't get out of bed, I couldn't move an inch and I was on morphine Injections to numb the pain, but even that wasn't working. weeks later I was diagnosed with Ankylosing Spondylitis - this sounds strange but it was such a relief to finally know that I wasn't going mad. Also while the doctor's were carrying out blood tests they found an abnormal reading of my liver enzymes, I had to go for further tests and then they diagnosed me with early Primary Sclerosing Cholangitis.. I was told that these 3 diseases are all linked to Auto-Immune Disease and that PSC is more prone in people with inflammatory bowel disease as bacteria passes from the intestine to the liver.
So basically what I am asking -
1. Has anyone with the HLA-B27 gene (that I carry) gone through anything similar to me - I need to know I'm not alone...
2. How are ye managing these diseases?
3. Does anyone know the outcome of Sclerosing Cholangitis? I am on Ursofalk capsules which I take at night. I know I am at the early stages and I have no symptoms yet but does anyone know what I'm up against in the coming years?????
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