Crohn's disease: How one man copes
Crohn's disease: How one man copes
Crohn's disease has changed Guy Havelick's life, but it hasn't affected who he is.
In his younger days, Guy Havelick dreamed of becoming president of his company, which is now a world leader in information technology. He expected to take on the extra hours and stressful assignments that would come with striving to achieve his goal.
But at 35, a diagnosis of Crohn's disease — an incurable condition that causes abdominal pain, fatigue and chronic diarrhea — changed his priorities. Now Guy has an entirely different set of goals. And despite the anxiety and sometimes daily struggles that come with Crohn's disease, he lives a full life.
"Guy has had a very complicated course with Crohn's disease, requiring most all of the medications that are used (to treat Crohn's) as well as multiple operations," says William Tremaine, M.D., a specialist in gastroenterology at Mayo Clinic, Rochester, Minn. "And despite all that, he is doing well. He works full time and has a reasonably good quality of life."
Crohn's diagnosis: Finding a reason for his distress
Looking back, Guy believes he had signs and symptoms of Crohn's disease — abdominal cramping and diarrhea — long before he was diagnosed. "If I think back to my childhood, teenage years and college years, I think I even had occasional symptoms at that time." But it wasn't until he was in his mid-30s that he noticed more prominent symptoms. He experienced fatigue, abdominal cramps and diarrhea that required him to rush to the toilet. He also became anxious and depressed, not knowing when his problems might occur next. When he finally decided to see a doctor, he had severe diarrhea several times a day and painful cramps that kept him awake at night.
After several tests, Guy learned that he has Crohn's disease — an inflammatory bowel disease that affects about 400,000 to 600,000 people in North America. Although the exact cause of Crohn's disease is unknown, an abnormal immune-system response to intestinal bacteria seems to be involved.
Though he'd never heard of Crohn's disease, Guy felt relieved just to know what to call it. "Just having a name to put on the disease made it much easier to tolerate, because I knew that somebody knew what was going on even though I really didn't at that point," he says.
For many people with Crohn's, including Guy, daily life is centered on a continual need to hurry to the toilet and a constant fear of an accident. Guy describes it this way: "If you've ever had the flu where you have diarrhea, it's kind of like having that every day for your whole life." Long-term flare-ups can follow periods of remission, and symptoms can develop gradually or appear suddenly.
Though concerned about the lifetime effects of the disease, Guy remained optimistic. "After visiting with the doctor, my wife and I talked about the disease and realized that in my case, I was really lucky. It was a controllable disease that would not shorten my life."
In fact, the diagnosis was a milestone in his life, he says. It forced him to change his career goals and to realize what was most important to him — his family and friends. "My career goals changed, and I decided that being president of the company was no longer important," he says. "What I needed was a steady income with a good family life and work balance. It was a life-changing event."
Treating the disorder: A complicated road
Guy's treatment started with prednisone — a prescription medication that reduces inflammation. Within days, the drug eliminated his symptoms. But there were drawbacks. Among other side effects, the drug made him extremely irritable and argumentative.
After several years, he stopped taking prednisone and remained symptom-free for the next few years. But prednisone isn't a permanent cure. Crohn's can flare up any time, as Guy learned when his abdominal cramping, fatigue and chronic diarrhea returned.
Each time symptoms came back, he took another course of prednisone, giving him a short reprieve between flare-ups. "I went through that two or three times, and eventually the complications set in."
In 1991, about five years after finding out he had Crohn's disease, Guy developed a bowel obstruction — a complication of Crohn's disease in which inflammation of the intestinal wall or the growth of scar tissue blocks the flow of intestinal contents.
He underwent emergency surgery to remove the blocked portion of his small intestine, staying in the hospital for 10 days. Five years later, he had another obstruction. Over the next two years, Guy suffered several other complications, leading to a total of eight operations.
Balancing work, family and a chronic condition
Undergoing multiple surgeries in a couple of years can ruin a career. But Guy says his company has good medical benefits and understanding management. For his part, he tries not to miss work, even when he's feeling poorly. If he has flare-ups, he works shorter days rather than take them off. He also works from home when possible and brings his laptop computer to his medical appointments so that he can work while waiting for the doctor. But living with constant uncertainty is a challenge, especially at work.
The disease has also been tough on Guy's family — wife Judy, and a son and daughter, now both grown. Not only does the disease affect family activities, but it also creates a certain level of apprehension. "Whenever I don't feel well, the fear goes up a couple of notches with my wife," he says. "Same thing for the kids. They don't always share the fear as easily with me, but it's there."
Though stress doesn't cause inflammatory bowel disease, it can worsen the symptoms and may spark flare-ups. So Guy tries to limit stress in his life. He walks in the park with his wife, does tai chi — a form of martial arts — and meets his friends for coffee every Saturday morning. And he says he doesn't worry about the little things. "And they're all little things," he says.
Coping: Staying positive despite the fears
Guy employs candor and practicality to deal with his disease. "One of the things you learn with Crohn's disease is that it doesn't get any better, and you either live with it or it's a heck of a poor life."
He even maintains a sense of humor about the unpredictability of the disease. Recalling a trip to Las Vegas, he chuckles. "Six people driving in a van through the desert — when there's no rest area within 100 miles — is a scary situation. But sometimes, if you're going to live life, you just gotta take the chance ... and pack some toilet paper," he says with a chuckle.
Honesty, he says, also has been key. "It's very important to share with your closest friends and family what you're going through so that they can understand," he says. And sometimes, blatant honesty is necessary with strangers, too, when diarrhea suddenly flares up.
"It works best to be very direct," Guy says. Most people, he notes, are helpful and understanding when they learn of his condition.
Finding and giving support
Talking to others who face the same difficulties is an important tool for coping, Guy says. He finds the support so valuable that he and several others have formed a support group through the Crohn's & Colitis Foundation of America (CCFA). He's a facilitator of the local group and a one-time member of the board of trustees for the foundation's regional chapter.
"Much of what I get out of my role in the CCFA is selfish," he says. "I receive the support and well wishes of so many understanding people, and I learn so much about how others handle the disease and perceive their symptoms — which allows me to live a fuller life while struggling with the disease."
But Guy says that he enjoys leading the group for other reasons, too. "I derive a significant amount of satisfaction knowing that so many others receive the same benefits of support and education," he says.
Moving forward: Keeping it all in perspective
The essence of Guy's approach to Crohn's disease is to keep the condition in perspective.
"I've learned to separate the Crohn's disease from my life," he says. "Because, if you spend too much time thinking about what bad things can happen, it really gets depressing."
What he emphasizes most is that Crohn's disease doesn't have to hold you back. "It's important to recognize that you can lead a full life with Crohn's disease," he says. "It is sometimes uncomfortable, but on a whole you can lead a very full life."
Editor's note: After first sharing his story with us in 2000, Guy Havelick has continued to cope with occasional flare-ups of Crohn's disease by taking medication under his doctor's supervision. Scarring from past bowel surgeries caused another bowel obstruction in November 2004, again requiring surgery. Guy still works full time for the same company. He recently started treatment with a relatively new bioengineered drug, infliximab (Remicade), which is given as an intravenous infusion every two months. As always, he is optimistic, reporting good initial results from this new treatment.
Last Updated: 09/15/2005
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