Hi Gizmo. My name is Doug. I live in the US in Arkansas. I read your story and saw similarities to mine.
I was in my early twenties and working in a fast food business, shoveling french fries, cooking pies, fish and steak, not to mention watching the steamer machine (for hot dogs and chili dogs). I also handled the onion rings and anything else that had to be fried. Talk about heart disease!
Anyway, the person who was supposed to give me my orders, so I could get them cooking, hardly ever gave me the full order. So at the last minute I would find out that I needed to cook twenty extra orders of fries, two steak, three fish, two hot dogs (one with cheese), three onion rings, and one cherry and 2 peach pies.
Talk about someone trying to get all that done in five minutes! whew. Needless to say the job was hard, but I must have been pretty good at it because most every one complimented me on my french fries.
It was in August of 1978 (I was 23) that I first noticed some blood in my stool. I didn't tell my mom or dad for a couple of months because I thought it was hemorrhoids. It only got worse, and I kept getting weaker. I started having periods of weakness that felt like an extreme case of the flu. I literally could not stand up. Then after about one or two days it would pass.
At work I nearly fainted several times. I had to get away from the frying machine so I would not fall into it. After that, I went to the doctor and he thought I had hemorrhoids. His treatment did not work. By now it was November and I was losing a lot of blood and averaging two hours sleep a night. I could barley walk but I still kept on working.
The people at work didn't seem to care how sick I was as long as the work was done. By December, near Christmas, my doctor finally discovered I had Ulcerative Colitis (using the same procedure as your doctor did). I had never heard of it. They started treating me with azulfidine and steroids (in enema form).
I stopped working in December and went back in February. The colitis broke out again so I had to quit the job. My body had gotten so weak from the disease because I had had it for months before anybody knew what it was.
So for the next ten years I was treated. I would get better then the problem would come back. I couldn't have any kind of life. By 1987 my body no longer responded to azulfidine and the steroid enemas. My mom changed doctors (she had to take care of this since I was in no condition to do it). I ended up at Saint Vincent's Hospital in Little Rock AR. To let my bowl rest, they kept me from food for a week.
My next treatment came from prednisone. It seemed to help. I was treated for about a year until my body no longer responded to it. I, like you, lost a lot of weight. Almost to the point of dying. This frightened my new doctors and they scheduled me for the ileostomy operation. It was February 25, 1988 that I got my ileostomy. I guess we had the same procedures since I no longer have a rectum either.
I still battle weakness and my body was treated for so long when I should have had an operation that I now have bladder problems and depression. I am glad to say I no longer take steroids (bad stuff!)
It is so nice to find another ostomate, who is so concerned about others and who is giving his story, so that people can understand what we have gone through to get to where we are now. It's not that we want recognition for this or to be treated special, it's just that our problem, and its ramifications, is not talked about in polite society and most people don't understand this disease. I think your site can dispell some of the myths and fears about having the disease and having an ileosomy.
Your friend and ostomatey,
Doug (using my sister's e-mail address)
glent@mail.cswnet.com
ps. Sorry for the long letter. You may share it with others if you like.