Today, a well-meaning friend told me I must be tempted to have surgery, because a friend of hers with Crohn’s had a colostomy two years ago and now doesn’t have Crohn’s anymore.
I had to break it to her. You never get rid of Crohn’s. Even with surgery.
All surgery does, from what I understand, is put out a fire — an abscess, for example. Or, maybe, it gets rid of a really bad patch — and then, more often than not, it comes back, finding another place in your body to dwell, whether your colon or your stomach or your esophagus or your mouth. It will show up in your exhaustion and your rashes and your eyes and your throat. It is going to be there. (NOTE: I would absolutely have surgery if I needed it, and there are definitely times and places for that with Crohn’s disease. This is a decision to be made with your doctor, not on the basis of what I say here. This is just my experience.)
Surgery is often a first suggestion of many ill-informed people. People like to think everything is curable. There must be some way … right? … to make this disappear. I’ve had Crohn’s for 15 years. Don’t you think I would have subjected myself to this magical surgical cure already, if it could rid me of this disease forever? The answer is a hearty yes!, I would.
About 18 months ago, I was diagnosed with gastroduodenal Crohn’s. That’s Crohn’s disease in your stomach. Between 1 million and 1.5 million people have Crohn’s disease. About 5% of them have gastroduodenal Crohn’s. I’m part of an elite group! (I also have it in my mouth, small and large intestines, and get global symptoms like exhaustion, skin rashes, and weakness, and I am chronically anemic.) The first thing people said to me after that diagnosis was, “They should just remove the patches in your stomach.” Sure, that would be great. And then I would lose part of my stomach, and guess what … the Crohn’s would grow back. So I’d have a very painful surgery and recovery, not be able to eat even the small amounts I eat now, and then, eventually, get to start with it all over again.
I appreciate people’s concerns and thoughts, but I’d rather they ask me questions than offer advice they have no basis to give. Do they think my top-ranked specialist at a major hospital is just not telling me the secret to getting rid of Crohn’s? Do they think I’m just too scared to have surgery? I don’t know — but it’s frustrating. I don’t mind when people ask well-thought-out questions, and accept my answers. But I do mind when they make statements and then argue with me about outcomes I’ve already researched.
I realize this disease is a mystery to most people. There was a time when I, too, didn’t know anything about it. (Though that seems like forever ago!) But I would like people in my circle of friends and family to be willing to educate themselves. I’d like them to be open-minded to the truth about this disease. To believe what I say.
And I’d like them to realize that not everything has a cure.
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