Coping With Severe Ulcerative Colitis: An Interview With Richard
Richard is a 76-year-old retired musician, piano
technician, and graduate of the New England Conservatory of Music.
After a severe battle with
in his middle years
that resulted in an ileostomy (removal of the diseased colon and
surgical connection of the ileum to an opening in the abdominal
wall), he now enjoys an active retirement in Florida. Richard shares his trials with and
triumphs over this disease.
Tell me when you first knew there was a problem.
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?
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?
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
Did anything precede the worsening of your condition? Any
emotional stress or major life events?
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?
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
Did you make any lifestyle or dietary changes in response to
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?
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.
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
It's been 25 years since you had the ileostomy. How are you
feeling these days?
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
What advice would you give to anyone living with this
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 roommates 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 roommate had emphysema from smoking, and I
listened to him coughing, hacking and fighting to breathe. So I
Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.