Kathleen's Story

I have had an ileostomy as of July, l996.

My problems began when I turned 40. I am now 47. Strangely enough, I was old for this kind of problem according to my doctor.

A young person's disease he said. My problem was ulcerative colitis in l99l. It started as proctitis which I was told I had an 85% chance it wouldn't go any further. Surprise. In about 6 months it was throughout my colon, even though I used nighttime enema's and that was no fun. I was hospitalized and put on hyperalimentation (a catheter put into a large vein near the collarbone).

After the 3 weeks on hyperalimentation, things did get better. I had to start eating very slowly. It was very uncomfortable. Developed a lot of gastritis. After 2 weeks on the road to recovery, I woke up one morning with a temperature of l03 degrees. I was rushed to the hospital for bloodwork to find out that my white cell count was only 400. It's supposed to be between l0,000-l5,000. I was admitted. By the evening my temperature was l04.5. I had a very rare allergic reaction to Asulfadine. The dangerous lowering of white cell count. My life was in danger and the fear of pneumonia, I was watched very carefully and the doctors and nurses had to wear masks. I was given a needle in my thigh every night to withdraw white cells from my bone marrow.

This was a new procedure and it worked. In four days, my white cells had doubled and tripled. But before that, I could not eat anything because I had developed an infection down my esophagus and hyperalimentation was threatening me again, but I made it through without it. Once home after that hospitalization, I was very, very weak, my muscles cramped up on me constantly. Soon I couldn't sleep on my back for more than 2-3 hours. I was having insomnia from the Prednisone anyway but I found myself getting up in the night and trying to fall asleep sitting up on the living room couch. Finally, I had to go to a chiropractor which he said I had inflammed nerves and he proceeded to move muscles and tendons away from them by putting me in strange positions and cracking my back. Prednisone messed up my system. Hormones were way off, crying spells, headaches, insomnia, went on sleeping pills for months. I had to get some sleep. I soon weaned off Prednisone and was on Asacol for maintenance, a non-steroid anti-inflammatory for almost 4 years. I drank lots of Comfrey tea, then the FDA puts a warning label on it. I slacked off, also I was getting tired of it. I would juice carrots. Acidophilis I also took. This is very good for the good bacteria in the intestines. And I really feel these supplements helped. All these I had slacked off. Thought I had it made. Maybe it won't come back again. Surprise, April, l996. The bleeding was beginning, was hospitalized in June, put back on hyperalimentation, sent home with it again for 3 weeks. Our 25th anniversary was July 24th, I was really bad, hyperalimentation was NOT working this time. Had to cancel all plans for our anniversary. :( July 31st, I had to have my colon removed with thoughts of having the reversal J-pouch.

This procedure had to be done in 3 surgeries because I was so sick. This surgery is elective and a vanity-type surgery. There are a number of risks involved. It was supposed to be only 6 months with a temporary iliostomy, but, I developed a small intestine blockage, 3 days home from the hospital and back in again with a G-tube put down my throat, I was vomiting profusely. Sent home, back in the hospital in 3 more days, I had developed severe pain and they drilled a drain into my abdomen and found I had 4 different bacteria growing in me, one being E-Coli. At that point, my life was in danger, again.

I was hospitalized 21 days. An area was not draining, they tried extracting with a very long needle, hit a vein, this procedure failed, now there was blood in the cavity, the next morning emergency surgery was performed. This was only one month after my colonectomy. Woke up in ICU, with many, many tubes all around me. I got through that surgery, kind of lost my identity, and found counseling. November, l996, I developed another auto-immune disorder. Well? I was under a great amount of stress. Hematolic anemia, that is when the immune system is throwing out antibodies on the blood cells and the spleen was fighting off my blood cells. I became jaundiced, very anemic and needed a blood transfusion, hospitalized again. After 3 months on Prednisone again, up to 80 mls. now, weaning off did not work. I had to have my spleen removed. A perfectly fine spleen that was only doing it's job.

Needless to say, I cannot go through 2 more surgeries to have the reversal J-pouch surgery done. I have decided to live with the iliostomy. It's been about 2 years now, and I think I'm o.k. with it. I do a lot of country line dancing, dancing since l993, swimming, (actually boogie boarding) :) and I'm very healthy and eat everything. Life is short, and I've stopped being so hard on myself. I feel I'm different in a lot of ways. I'm enjoying life more. I am not on any drugs for the disease. Supposedly the disease is gone. But this immune disorder seems like a time bomb. One temporary drug I am on though, is for a small amount of osteoporosis which was caused by Prednisone. I only have to be on Fosamax for 1-1/2 yrs. Bone density should be back to normal by then. I am so thankful for that. My doctor thought I would have more osteoporosis considering the amounts of Prednisone I was on. I do take extra calcium. It's funny, I felt there was no way I could live with an ileostomy. What a decision. I had to weigh the risks involved. I decided not to play "Russian roulette" with my health.

Kathleen

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