Short bowel syndrome: Trusting my gut reaction

From: Helen Dynda (olddad66@runestone.net)
Tue Jan 9 20:25:32 2001


[]]]] Trusting my gut reaction: surgeons removed 20 feet of my small intestine -- and said I'd never eat solid food again. ( Man finds alternative treatment for short-bowel syndrome. )

I'm a tough guy, so I figured I could cope with the pain until after the weekend. As the CEO of a large commercial bank, I had been too busy all that week to pay attention to the sharp ache in my belly. I had an important meeting scheduled for Friday with some Wall Street analysts that I couldn't afford to miss. This could wait. But when my wife found me on the floor at 3 am, writhing with pain, we were on our way to Massachusetts General Hospital in record time. In the emergency room, the gastrointestinal surgeon told us that the most likely diagnosis was a blood clot, which might have been caused by an old sports injury, that had completely cut off the blood supply to my small intestine. My chances for survival were less than 50-50. I was 57 years old.

When I awoke from surgery in the intensive care unit, my surgeon told me that he had the proverbial good news and bad news to report. I had lost ninety percent of my small intestine, but I would survive. The pain I had felt was caused by gangrene; my digestive system was being starved for blood because of the arterial clot. By ignoring the pain for several days, I had allowed the gangrene to progress dramatically and to destroy most of my small intestine. My condition now was something called short bowel syndrome.

After the surgery, my bowel ( or small intestine ), the sausage-shaped organ that absorbs most of the nutrients in the food we eat, had been reduced from a normal length of 21 feet to less than one foot. The bad news was that I would live with a permanent catheter, or shunt, installed and dangling from my chest so that I could receive essential nutrients intravenously. This liquid -- called TPN for Total Parenteral Nutrition -- would "totally satisfy" my nutritional needs. The doctors said it was unlikely I would ever eat solid food again.

I stayed in the hospital for almost a month. My family tried to help me appreciate how close I had come and how lucky I had been. Few people survive the kind of radical surgery I had experienced; and fewer still learn to survive with short bowel syndrome. Doctors didn't have much to tell me: Even in a research-heavy environment like Massachusetts General, it is a very rare condition. There are simply too few people who have "made it" for doctors to treat survivors with certainty.

After I was discharged, visiting nurses came to our home every day to monitor my condition and to teach my wife how to hook me up to the portable IV pumping unit, which I would use every day for the rest of my life. I continued to experience intense stomach pains and chronic diarrhea, both of which are classic symptoms of my syndrome.

For many people, life itself would have been enough of a gift. But for me, the prospect of living hooked up to a pump was a living hell. Beyond this discomfort, I missed food! I have always been someone who lives to eat rather than the other way around; so I couldn't accept the quality of life I'd have on a steady diet of TPN. I craved all sorts of things -- a Grand Marnier souffle, spaghetti Bolognese, Chinese food. But mostly I craved the normalcy and mobility of the life I'd had before.

A month or so after I came home from the hospital, the Tall Ships were parading through Boston Harbor; and I was watching from a harborside balcony. But despite the excitement of the day, I just didn't feel right. By the next morning, I had a fever of 103 degrees and found myself in an ambulance en route to the emergency room. Back at Massachusetts General, I was admitted with a severe "line infection" -- a common but very dangerous complication of patients with permanent nutritional ports. The infection was a result of staphylococcus bacteria entering my blood stream through the port in my chest. Immediately, the doctors removed the shunt and hooked me up to a standard IV line, flooding my system with megadoses of antibiotics to combat the infection.

My doctors trooped in the next morning to reassure me. After 10 days or so of intravenous antibiotics in the hospital, I would be able to go home again, with my pump and my daily bags of liquid gold. "No way," I told them. This crisis had shown me that I couldn't go on this way. I had made up my mind. If I couldn't eat, I wouldn't live. "Take the catheter out," I said. "I want to give my system one last chance."

The doctors, God bless them, didn't argue with me. Clustered around my bedside, the five or six specialists and a host of medical and surgical residents held an impromptu conference. They admitted that because there was so little real data on successful treatment of short bowel syndrome, they weren't certain that the TPN was my only option. "Why not let him eat?" my surgeon suggested. "What's the downside?"

Finally, they agreed that I would go home and begin to experiment with a bland, low-roughage diet of bananas, yogurt, gelatin, rice, and clear soups. In six weeks, we would meet to determine if I could be sustained without the TPN.

So I started to eat again. Carefully, and suspicious of every bite, I listened to my tummy intently. I was learning which foods I could tolerate -- and the overall quantity my system could handle. After MY six-week trial, the doctors agreed that I could continue.

The first year was difficult. I had diarrhea almost constantly; and I had severe stomach cramps every time I ate. I lost weight. I was about sixty pounds lighter than I had been before my surgery. But some version of normal life had resumed. I was back at work -- more tired than before, it's true; but able to deal with the crises of the day. I gradually recommenced my daily exercise regimen -- working out on the treadmill and with free weights while I watched The Today Show.

At first, my diet evolved through trial and error. If I made a poor nutritional choice, my system let me know it within fifteen minutes -- as I'd find myself doubled up at the table with cramps. I discovered that I couldn't eat butter, cream, or any kind of animal fat. I also found that I had to be very careful of the amount of roughage I ingested. This made my diet very different from the regimen of whole grains, legumes, and vegetables I used to eat. Soy products, for example, were very bad for me.

A year later and almost by accident, I came across a nutritionist who had a good understanding of the requirements of short bowel syndrome. She convinced me that it was certain types of fat that brought on my gastric distress and weight loss. Except for pure vegetable oils like olive and canola, I should replace my low-fat diet with a no-fat diet. After my conversation with her, I was so excited that I made an immediate pilgrimage to the supermarket -- filling my cart with nonfat frozen yogurts, nonfat versions of mayonnaise, salad dressings, and crackers. Within a few weeks, my weight had stabilized. I found that I need to eat about 5000 to 6000 calories a day to maintain myself -- about twice the normal caloric requirement for a man of my age and size -- because I am able to assimilate only a fraction of what I ingest.

My basic diet became yogurt, juice, bananas, and toast for breakfast; a low-fat sandwich or pizza for lunch; and lots of rice, cheese, baked potatoes, and simple entrees of fish, chicken, or pasta for dinner. Eating many small meals -- rather than three large ones -- seemed to work best. Actually, the basic rules I established for myself allowed me to eat a remarkably wide variety of foods.

Unfortunately, my new diet alone wasn't enough to ensure continuing good health. There was still a piece missing from the puzzle. I discovered it in another near-fatal crisis about two years after the surgery.

My family had decided to celebrate one of my four kid's birthday at a local French bistro. Seventeen family members in all at one long table -- tasting and sharing appetizers, entrees and desserts. Unfortunately, every one of us picked up a gastrointestinal bug from the meal; and so we all got sick. Although the rest of the family recovered within a few days, a month later I was still suffering from severe diarrhea. I had lost 20 pounds in four weeks; and had to be hospitalized with severe dehydration and blood plasma loss.

Weeks went by and the diarrhea and dehydration continued. I was in and out of a score of doctor's offices, consulting the leading experts in infectious diseases, internal medicine, radiology, neurology. Nobody seemed to have a clue.

I could barely get through the day. Almost too exhausted to watch an entire Red Sox game from my bed, I remembered the name of a doctor I had spoken to at another hospital a year or so before. We had discussed a treatment that he and his physician wife were using on patients with Crohn's disease and colitis -- whose symptoms are similar to mine. My own medical team had decided that I was too much at risk to join the study. But that had been more than a year ago; and now I felt that I had little more to lose. I phoned him immediately. Quickly and somewhat desperately, I brought him up to speed. "I know just what's wrong with you," he said. "When someone like you gets a stomach bug, you'll suffer a hundred times more than a person with an intact G. I. system. You've so irritated the lining of your intestines that it can't recover."

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