Don’t Mistake Remission for a Cure

As someone who suffered badly from Crohn’s Disease as a kid and still deals with the effects today, I find the story of Ari Meisel inspiring. The NYC resident tells Fox News that he found a way to beat the disease, which is considered incurable.

Mood music:

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A friend sent me the article and asked what I thought of it. The headline thrilled me: “Curing Crohn’s? Man says he found way to beat incurable disease.” I started reading and got more jazzed as Meisel explained how he radically changed his diet, embraced yoga, weaned himself off his medication and drove all the illness from his body.

Then came this paragraph:

“Although he realizes he fundamentally cannot be ‘cured’ of an incurable disease, he and [Dr. Bart Kummer, his specialist,] can agree he is in remission — for now.”

From the Resources section: Websites for dealing with Crohn’s Disease

The rest of the article is a debate over whether Meisel’s lifestyle changes made the difference or if the medicine he had been on — mercaptopurine, or 6MP — did the trick. Meisel never claims he cured himself. Yet Fox teases the reader with a headline suggesting someone has found a cure.

It’s a misleading headline that’s sure to disappoint those who suffer from Crohn’s Disease today. The article itself is good, and the lessons are important. But it is not about a cure.

I’m not going to rip Fox over it, because I’m an editor who has produced his fair share of dud headlines over the last couple of decades.

As for Meisel’s story, it’s inspiring but not surprising.

When a Crohn’s attack is on full burn, it will make you think you’re on death’s door. In fact, it’ll make you wish you were there. Today’s medications are better than what was available to me in the 1970s and 1980s, but like the Prednisone that drove me to the brink of insanity, drugs like 6MP have horrible side effects, including an increased risk of cancer.

All Crohn’s patients know that diet and exercise are key to keeping the disease in remission. Even then, all bets are off. That Meisel has found solid remission through a strict diet and exercise regimen is admirable but to be expected.

I’m lucky. Though the disease manifests itself in different ways today, I haven’t suffered a crippling attack since 1986. My doctors tell me that’s rare.

I know I’m not cured, though.

Whenever you see an article claiming a cure for this disease, go ahead and read it, because you’re always bound to find useful, actionable information.

But don’t think for a second that it’s going to somehow free you forever.

Intestines

My Crohn’s Disease Is Doing Push-Ups

Recovering addicts have a saying: “My disease is doing push-ups in the parking lot.” The meaning is that you can be years into sobriety, but you’re never cured. The disease is ready to beat you down as soon as your guard slips.

I’ve learned that Crohn’s Disease does the same thing.

Mood music:

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As violent and damaging as my childhood Crohn’s Disease was, I haven’t had a full-blown attack since 1986. It would be easy to grow complacent and consider myself cured, but the disease sends me the occasional sign that it’s still there.

From the Resources section: Websites for dealing with Crohn’s Disease

What would otherwise be a minor stomach bug turns into full-blown inflammation. Not an attack with the blood, aching joints and an abdomen that feels like it’s on fire, but one that leaves me feeling bloated and off-balance, dogged by a dull soreness in the middle and sudden urges to make a bathroom run. I’m not sure urges is the best word, either. It’s a rushing discomfort that comes on suddenly.

I started feeling it yesterday, and it helped ensure a lousy night’s sleep.

I’ve been asked if I fear another full-blown attack like those that left me hospitalized and jacked up on Prednisone as a kid. I’m not.

I know I’m not cured, so I expect that one of these days, another attack will materialize. I’d rather it didn’t, of course. But I’ve developed a stoic attitude about it. If it comes, I’ll deal with it. I’ll accept the treatment and do what I must to shut it down, even if it means taking Prednisone — a drug I still blame for unleashing the chemical imbalance in my brain that has led to OCD, bouts of depression and a history of binge eating. I figure the drug can’t do much more to me on that score, though it would certainly give me a temporary bad attitude.

In a way, the little bouts of inflammation like the one I have now are a gift. They keep me aware of the disease that lives inside of me and what it can really do to me.

And they remind me to take care.

Inflamed Intestines