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Crohn's Disease

Meeting the Challenge of Crohn's Disease

During the early stages of her diagnosis, Donna Hoffman was treated by a protégé of Dr. Burrill Crohn, the gastroenterologist who identified the disease that now bears his name.
Photos courtesy of Elliot Siegel

Donna Hoffman, a South Carolina resident originally from the Northeast, has met the challenges of Crohn's disease for 40 years. After a slow initial diagnosis, she has kept the disease under control with the right medications, healthy foods, plenty of sleep, low stress—and compassionate gastroenterologists. She recently spoke with NIH MedlinePlus magazine about dealing with Crohn's disease.

How old were you when you first experienced the symptoms that would later be diagnosed as Crohn's disease?

I was 18, and it was the summer I graduated from high school in 1969. I had been a healthy teenager up until then. I started having stomach problems. Then I began to lose weight and have trouble with certain foods. I didn't think much of it at first.

But then I got persistent diarrhea, and the other symptoms got worse. And I continued to lose weight and have stomach pains. I was going to community college and living at home with my parents. It got to the point that I would go to school and then come home and sleep the rest of the time. I was totally exhausted.

And it became totally isolating. It was terrible; very depressing. That fall my parents and I decided to have something done. I was in and out of at least three or four hospitals that fall. They kept admitting me. They did a barium enema. There were just a limited amount of tests back then.

Crohn's disease is sometimes difficult to diagnose because it's similar to some other conditions, including ulcerative colitis or IBS (irritable bowel syndrome). How long did it take for you to get a correct diagnosis?

It was not diagnosed right away. I went through at least two years of hospitals. At one point they sent me to a psychiatrist because they thought it might be psychosomatic.

It got to the point that in the summer of '71—I was 20—I was 90 pounds—and I'm 5 feet 5 inches. My mother was feeding me baby food because I couldn't digest anything. I was so physically emaciated and exhausted. But they couldn't find out what was wrong with me.

Fortunately, one weekend, we were over at a friend's house. I was having a bad attack, and they thought maybe I had appendicitis. They put me in the back seat of a car, and my dad drove me to a nearby hospital I had not been to. Our friend's doctor there did exploratory surgery that same day.

They ended up removing two inches of my ileum [the final section of the small intestine], and told me it was as hard as a rock. Then I developed a dangerous inflammation of my abdominal wall—peritonitis. And I almost didn't make it. I was in the hospital for weeks.

It was a long recovery, but a wonderful comeback. I was treated by Dr. Daniel Present, who happened to be a protégé of Dr. Burrill Crohn, the gastroenterologist who identified the disease that now bears his name.

Dr. Present treated me with some then-experimental drugs. And he treated me with high doses of prednisone, an antiinflammatory drug.

What have been the biggest lifestyle challenges you've faced with Crohn's disease? Diet? Exercise? Travel?

I had to change my diet. And I had to get plenty of sleep and avoid high levels of stress. After I was married, one of the things that helped me recover was my pregnancy. Throughout my pregnancy—and for 20 years after—I was in remission. The Crohn's disease only came back when I went through a period of very high stress.

In terms of food flare-ups, I've found I'm better eating foods with no chemicals and no other additives. That, and low stress have been the answer.

Are there any foods you like that are definite no-no's?

Anything with lactose; I do miss pizza and ice cream; I do cheat once in a while.

Aren't there non-lactose substitutes?

For me, it's not the same. [laughs]

Are there medications you take to help manage your symptoms?

I take Pentasa (mesalamine), an antiinflammatory medication daily. My doctor also gives me methotrexate, a breast cancer drug, which in minute doses keeps the immune system from attacking itself and keeps my intestine from attacking itself.

What advice might you give to someone who has just been diagnosed with Crohn's disease and wants to manage it?

Find a compassionate, knowledgeable gastroenterologist. The best must have a special gene that makes them compassionate. I've had four doctors in 40 years, and they have all been compassionate.

Then, I would tell them to consult a dietitian. You really are what you eat.

You need to learn to read your body. I can tell when I'm going downhill.

And just remember, as one of my doctors told me, not every day is going to be a good one. But we're very fortunate to live in a time when we have these treatments. I have a healthy 32-yearold son. I've never let Crohn's disease affect my travel. I'm planning a trip out of the country right now.

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Read More "Crohn's Disease" Articles

Living with Crohn's Disease / What Is Crohn's Disease / Meeting the Challenge of Crohn's Disease

Winter 2016 Issue: Volume 10 Number 4 Page 6-7