So, in the past six months, I’ve had three friends diagnosed with Crohn’s disease or colitis. Considering that so few people, relative to the general population, develop these illnesses, it’s interesting that suddenly I know several people who, like me, are fighting inflammatory bowel disease.
I have offered to be their support system, their key to information, their sounding board. I didn’t realize how hard it would be for me, as someone 16 years into her own IBD journey, to be in this role. It’s difficult for several reasons. One is reliving my own diagnosis. But what’s really hard is watching my friends make common “IBD newbie” mistakes in choosing their treatment, while just listening and trying to ask intelligent questions without bombarding them with too much information.
Friend Number 1 was diagnosed with Colitis in the emergency room about six months ago. She was feeling terrible pain and had a CAT scan. The gastroenterologist on call diagnosed her and then told her to “just deal with it.” He offered no solutions, no medications, no ideas. She was on her own. She did her research on the internet and concluded her Colitis was from stress and eating the wrong foods. She then started keeping a food journal, writing down every little thing she ate to “find the culprit.” I begged her to go see my local GI doctor, explaining she would have to wait months for an appointment because this doctor is so well-liked, and that she needed to be medicated soon to get better. She resisted.
For the past two weeks, she’s been in a flare-up. She’s lost seven pounds and can barely leave the house to be away from the bathroom. She called my doctor finally and is unable to get in to see her until February. My friend now believes stress is not the cause of her colitis flare-up and that she can’t control the disease with diet. But now it will be months until she is properly treated.
More tests before treatment
Friend Number 2 was diagnosed with Crohn’s disease about six months ago She and her doctor, for some reason that I’m not clear about, decided she needed more testing before finding a medication that might work for her. Their solution: Probiotics. I warned her that probiotics can be problematic for people with Crohn’s Disease and that they are not a long-term solution. She ignored me, saying she knew they would work. Two weeks ago she developed a 104-degree fever and such swollen joints she was admitted to the hospital for two days of IV steroid treatments. She still hasn’t started any medication to help her avoid flare-ups.
Friend Number 3 was diagnosed with Colitis also about six months ago. She’s one of those very natural types; she hasn’t taken even a Tylenol for a headache in 25 years or so. She was sure she could cure her Colitis with diet as she claimed to know several people who had been flare-up-free for 10 years because of diet alone. I warned her this was not a solution. She got very sick, lost 30 pounds, and was hospitalized twice in just a few months. She’s now on Remicade, reluctantly, and doing well, but insists it’s the diet that’s making her better.
I wonder if others struggle when someone they know is diagnosed with their disease. When you are so far down the road in treatment yourself, it’s hard not to roll your eyes at all the “cures” you know are never going to work. It’s hard to be supportive. At the same time, you know these friends need to make their own journeys, as you have. You want them to be happy and healthy, and you hope they will be, whichever path to treatment they choose.
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