In her own words: living with Crohn’s disease
As told to Virginia Mansfield
Jane was diagnosed with Crohn’s disease in August of 1998. She is married, has two stepchildren and two children of her own. She runs a business out of her home, making presentation pieces for parties, weddings, and other special events. Her flu-like symptoms led to a diagnosis of Crohn’s disease. She was in remission for two years before having a flare up that landed her in the hospital. A few weeks after leaving the hospital, she was diagnosed with breast cancer. Now, two years later, Jane is in remission from both the Crohn’s disease and breast cancer. “I’ve learned to not take life for granted. Life is a precious gift.”
What was your first sign that something was wrong? What symptoms did you experience?
I had flu-like symptoms. I had a low-grade temperature, no energy, and diarrhea. But the diarrhea was somewhat normal for me. I would get diarrhea before my period, or if I had a lot of stress. So I never thought twice about the fact that the diarrhea was an indication that something was wrong. But then I started experiencing severe abdominal pain. I would take Tylenol, and that would take the edge off, but then I would feel horrible again. I was having tests done along the way. I had also started to lose some weight. Then it got to the point where every time I ate, I had pain. I also got a case of iritis, which is an inflammation of your iris.
What was the diagnosis experience like?
My father-in-law is a gastroenterologist, so I was describing my symptoms to him. He said, “I think you have Crohn’s,” and I just laughed at him. A few weeks later, the pain had gotten so bad, it was unbearable. I went the next day to my internist and I told her I had Crohn’s. She was skeptical, but went ahead and scheduled a small bowel follow-through. I was told by several people not to expect a diagnosis right away because they often can't see it just from this test. However, my condition was raging enough that they were able to make the diagnosis of Crohn’s.
What was your initial and then longer-term reaction to the diagnosis?
My initial reaction was “Thank God, I'm not going crazy.” My next reaction was “Now what?” I knew there was no cure for the disease, and it's prone to flaring up. I was scared. I was someone who had been healthy; I was never really sick; I never had habits I had to break; I was never in the hospital except to have a baby. I was freaked out by having to be on an enormous amount of medication. I was the kind of person that if I got a cold, I would drink orange juice and chew vitamin C instead of taking pills. I was also someone who could only swallow one pill at a time. Now, I can throw down eleven at once.
I guess I was scared, a little angry. But the fear and the anger made me realize that I had to be an advocate for myself. I had to learn as much as I possibly could, and make sure I asked my doctor lots of questions. At that point, I felt like the only control I had was knowledge.
How is Crohn’s disease treated?
I'm still on medication. When I had my flare up that put me in the hospital, I altered my diet substantially. I altered my diet when I was first diagnosed, but I made more significant changes after leaving the hospital. I take 20–25 medications a day. That includes a vitamin and iron pill, but I also take many medications related to the Crohn’s. I had a flare up in April of 2000, which put me in the hospital for six days. I was having the same symptoms that I initially had before the diagnosis. I was constantly uncomfortable, and I had lost a lot of weight. They did a CAT scan, and the next day they put me in the hospital. I was on IV fluids and IV antibiotics. They chose to treat it medically, instead of surgically.
Did you have to make any lifestyle or dietary changes in response to having Crohn’s disease?
It was hard to go out places. There were many things I couldn't eat, like salads. When you go to someone’s house you don't want to say, “Hey, can you just fix me a baked potato?” It required that I learn to deal with that kind of situation. I had to stay away from things like popcorn and other foods that are hard to digest. Because it was awkward, for a long time I just didn’t go out. I wanted to stay close to home. As I began to tell people, it was easier to get out and do things. My husband and I used to love to eat Chinese food, but now there is nothing that makes me more nauseous. I didn’t look forward to meals. For four years, I ate very cautiously. There were so many foods that made me hurt. Now that I'm in remission, I just try to be careful, but I don't deprive myself of some of the foods I really enjoy.
Did you seek any type of emotional support?
I discovered the Crohn’s and Colitis Foundation because my doctor gave me a free membership. I went to a symposium, and at that symposium, I met my best friend. She's fabulous, and she has Crohn’s. She understands me and I understand her. If I didn’t have her, I would be six feet under. The Crohn’s and Colitis Foundation is great! My husband and my doctors have also been very supportive.
Does having Crohn’s disease have any impact on your family?
I just was not available to do what I usually do. I tried really hard to do as much as I could, but it was very difficult. I had very little energy. My girls were frequently frustrated by my inability to do things for them. They were too young to fully “get” what was going on. They were 9 and 10 at the time. They weren't real sensitive, and that really bothered me. It hurt. My husband on the other hand, was so supportive, and so understanding. Constantly trying to even things out for me. I'm very fortunate. My extended family was also very wonderful. It's a very difficult thing to deal with because it's chronic. It was frustrating during the process of trying to find out what was wrong. Then once they knew, they had to deal with it and accept it.
What advice would you give to anyone living with Crohn’s disease?
I would tell them to seek out someone who's been through it. Someone who could talk about gas and farts, and not be embarrassed. It's not a visible disease, so it's very easy to feel alone. Get involved and raise awareness. It's a way to feel like you have control. Do as much as you can to help. Be part of the solution. I kept a journal, which was helpful for me to express how I was feeling, as well as to have an accurate record to share with my doctor. The biggest thing is to find a way out of the fear.
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.
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