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since May 2004

In the years that have followed Gary has continued to live with several health problems. He developed Carpal Tunnel Syndrome and had surgery on his arm. This appears to be often associated with Autoimmune Diseases as explained here:
"In autoimmune diseases, the body's immune system abnormally attacks its own tissue, causing widespread inflammation, including, in many cases, the carpal tunnel of the hand. Such autoimmune diseases include rheumatoid arthritis, systemic lupus erythematosus, and hypothyroidism. Some experts believe that carpal tunnel syndrome may actually be one of the first symptoms in a number of these diseases. Studies also suggest that CTS patients with these disorders are more likely to have severe CTS that requires surgery."

He developed mysterious dental pains that the dentist couldn't explain but he lost two teeth as a result.

If he catches an everyday illness his temperature often spikes to 104 and antibiotics are needed to fetch it down.
If he cuts himself it takes much longer for him to stop bleeding: "The most common cause for a low platelet count is the autoimmune system. This disease is called IDIOPATHIC THROMBOCYTOPENIC PURPURA (ITP)."
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However, one of his symptoms has disappeared since his ileostomy surgery. Previously a nasty boil would flare up on the side of his nose. It would be large and inflammed and need a course of antibiotics in order to subside. It was always in the same place. After his bowel was removed the boil also stopped appearing.

Another coincidence? This is what I discovered at iVillage. The reader has asked a question about her mother's recurrent boils.

"Boils (furuncles) are painful bumps in the skin. They usually become filled with pus, which drains spontaneously. By far the most common organism causing furuncles is the bacterium Staphylococcus aureus, or "staph."
Most boils resolve without treatment. But sometimes, the furuncle progresses deep into the skin, connecting to other furuncles close by. It will appear as a large, inflamed mass with multiple openings that drain pus. This large infection is termed a "carbuncle." Carbuncles usually require surgery to drain them.
We all have small amounts of bacteria, not usually staph, that enter our blood from our intestines and mouths, but it is only temporary. Your mother is probably "colonized" by staph. This means that in between her outbreaks of boils, the staph is still present on her body. In cases like your mother's so-called "recurrent furunculosis," the bacterium often reside in the nose. This is common in patients on dialysis for kidney failure, but it also occurs in otherwise healthy adults and children.
There are a few other ways to prevent recurrent boils. Some people have a problem with neutrophils, a type of blood cell that fights certain infections. One medical-research study showed that vitamin C can help prevent boils in such patients. Finally, a few oral antibiotics have also been shown to prevent disease in cases like your mother's. One approach is to give two antibiotics for 10 days in an attempt to eradicate the bacterium."

This makes perfect sense, as Gary received extensive antibiotic treatment after his ileostomy, to rid him of his peritonitis and septecemia. This would surely remove any staph infection as well.

But I was also interested by 'Some people have a problem with neutrophils, a type of blood cell that fights certain infections.' and so I searched for more information. I found this:

"The proportion of spherical (unactivated) circulating neutrophils was reduced in active Crohn's disease compared with inactive Crohn's and normal subjects. There tended to be fewer spherical neutrophils in active ulcerative colitis than in quiescent colitis or normal subjects."
So maybe his flare up of his boil was actually a Crohn's flare? I just don't know.

In recent years he has developed walking difficulties, due to one of the strokes he had at 26. His tendons are damaged and he wears a leg brace for this. He also has aches and pains in his legs and arms to a lesser degree. The Rheumatologist has examined him thoroughly and is unsure of the cause. We all thought it was IBD-arthritis, but this has been ruled out. He's on strong pain killers for this, but walking is becoming increasingly difficult for him.

The other concern is his hearing. It has been steadily deteriorating and he is profoundly deaf in one ear (i.e. no hearing at all) and severely deaf in the other. A digital hearing aid is helping him, but he struggles in places with a lot of background noise. He has been attending lip reading classes, and found these to be of enormous benefit.
The specialist is unsure why he is losing his hearing, but thinks it could be an autoimmune hearing loss.

Gary has been in remission from Crohn's for over 22 years. So far neither of our sons have any symptoms. They are both growing tall and healthily. The older one has shown a few similarities to Gary. Like Gary he's dyslexic - which is often found in people with IBD. He went through a stage of heavy nose bleeds, his pain threshold seems to be high, and he rarely has an illness. But there the medical similarity ends.

Only time will tell, but all the indications are that they have not inherited Gary's autoimmunity factor.



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