Coping with severe ulcerative colitis: an interview with Richard

Tell me when you first knew there was a problem.

Richard: That's hard to say. I've had digestive problems all of my life-mainly stomach problems, pains in the gastrointestinal area, and nausea. But when I was in my early to mid-forties, I started having a lot of diarrhea...stubborn diarrhea that would last a week at a time. It would come back every so often, and this made it really difficult when I was working. I might be tuning a piano in someone's house and have to ask to use the bathroom, and it was embarrassing. Or I might be playing in the band and have to go. Eventually, it got so severe that I lost a lot of weight-at my worst I got down to about 96 pounds! I got so weak one day that I couldn't get out of bed and my wife had to call an ambulance to take me to the hospital.

So when were you first diagnosed with ulcerative colitis?

Richard: When I was about 50. I had been trying to control the problem with nonprescription antidiarrheal medications like Kaopectate, but the problem had become chronic. I had all kinds of tests-endoscopic procedures and lower GI series.

What was your reaction to the diagnosis?

Richard: Well, at first it was just hard to believe. I thought that there would be a cure. But I ended up in the hospital for a month and nothing they did really helped, so my doctor said I needed surgery-an ileostomy. I've heard of people having some real emotional problems with this, and knew someone who had to get psychiatric help because he and his wife were having such a hard time dealing with it. But I actually wasn't too worried-I just didn't want the disease or the surgery to put me out of commission. I wanted to be able to function at work and live a normal life. And when I was in the hospital, I was so sick that I was relieved that they could do something about it-even if it meant major surgery.

Did anything precede the worsening of your condition? Any emotional stress or major life events?

Richard: Well, I had a lot of stress because I worked a lot-tuning pianos during the day and playing in a band at night. I also have a nervous temperament. Then my father died suddenly, as did another relative, and my daughter got sick. It was a bad year. I also was taking medication for a tooth problem, and right after that, the colitis got worse. I always think that had something to do with it.

How was your disease treated?

Richard: While I was in the hospital, I had cortisone-the upper limits of it for about 10 weeks. It puffed up my face and ankles. I took another medicine -I think it was some type of drug that the Chinese use, but I can't remember the name of it. But it helped to soothe the inflammation before I ate. I received lots of electrolytes too-I had IVs in both arms. All of my treatment was in the hospital. Before that, I just took nonprescription antidiarrheal medication.

Did you make any lifestyle or dietary changes in response to your illness?

Richard: I tried everything-taking vitamins, being careful with what I ate. I stayed away from roughage (fiber), but that might've been a mistake-I'm not sure. I drank more milk because, years ago, the thought was that it was good for ulcerative conditions. But that's not recommended anymore.

Did you seek any type of emotional support during your battle with ulcerative colitis or when you were facing surgery?

Richard: Not really. Only from my family. Although I did have a musician friend who had gone through the same thing who visited me before and after the surgery. He gave me a pep talk and then explained how to use the ileostomy equipment.

Tell me about the challenges of adjusting to an ileostomy.

Richard: Well, at first there was a lot of embarrassment. You tend to think you're a freak. The doctor told me I wasn't a freak and that I wasn't the only one in the world who had an ileostomy. I guess I adjusted well compared to others. The hardest part was the physical adjustment-the routine of having to eliminate. But it became second nature after a while-no big deal. In the hospital several people showed me how to use the equipment I needed. The people who actually had ileostomies were the best teachers though. I learned a lot through trial and error. And some equipment is better than others.

I had to adjust to getting back into life. I had to time what I was doing in order to change the ileostomy bag. I was lucky that I had a job where I could come and go as I pleased, but I imagine it might be tough for someone with a strict work schedule. And I had to prepare for emergencies, and what I'd do when I was playing in the band.

It's been 25 years since you had the ileostomy. How are you feeling these days?

Richard: I'm feeling very good-as normal as I should at this age. I'm having no trouble with the ileostomy. Certain foods bother me sometimes, like if I eat too many vegetables-something that's good for most people. But with an ileostomy, the stools are looser.

What advice would you give to anyone living with this disease?

Richard: Well today I think they have better methods so that they probably don't have to use surgery so much. I would advise people having a problem to see their doctor as soon as possible-and make sure they get a good doctor. See what methods are available besides surgery. Also, know that it's a problem that can be handled, so try not to be too upset. Get care, help from the people around you.

One thing that really helped was humor.When I got home from the hospital my kids used to laugh at me because I was eating all the time. They could hear me out in the kitchen munching or tearing the wrappers off of something-and I was so skinny! I never have fully recovered my normal weight which used to be between 145-150 pounds. I'm about 25 pounds lighter.

One good thing that came out of this is that when I was in the hospital for so long, I gave up smoking because they wouldn't let me smoke. I had smoked since I was a teenager. But two things especially impressed me to quit. I was in intensive care and one of my roomates had an operation for lung cancer and he was a mess. He died shortly after, but I remember him saying to his wife "Smoking wasn't worth it." Another roomate had emphysema from smoking, and I listened to him coughing, hacking and fighting to breathe. So I quit!