The Lasting Impact of Crohn’s Disease

The author has lived most of his life with Crohn’s Disease and has developed a few quirks as a result.

Mood music for this post: “Bleeding Me” from Metallica:

As the reader knows by now, I’ve spent most of my life with Crohn’s Disease, an affliction that in the long run has been more damaging to my mental health than my physical health.

It screwed up my brain and pushed me toward an adulthood of addictions and other hangups. I’m not going to give you a detailed scientific rundown of how the disease works. It’s enough to tell you that it attacks every part of the digestive system, ripping holes into the colon wall that can cause a person to bleed to death if left untreated.

I lost a lot of blood along the way and had a couple transfusions in the late 1970s. This left me scared to death in the 1980s and 1990s about AIDS, because many people got it from tainted blood transfusions. Fortunately, I’ve been tested many times for it and that didn’t happen. I was lucky.

A couple times, I’ve been told, the doctor’s came close to removing the colon. Too much of it was under siege and they didn’t know where to start in terms of targeting it. But it never came to that.

The pain was pretty intense. I really don’t know how my parents were able to get through it. I think it would cause me more anguish to see one of my kids suffer than to go through it myself. That had to hurt. Especially since they lost another child along the way. It also couldn’t have helped that I would be in the hospital for six-week stretches in 1978, 1979, 1980 and 1981.

The most popular drug to treat it is Prednisone, which comes with a wide list of side effects. In fact, the drug screwed with me much more than anything else. More on that in “The Bad Pill Kept Me from the Good Pill.”

All things considered, I’m probably one of the luckiest Crohn’s patients on Earth. The last bad flare up was in 1986 and I haven’t had once since. I still go through frequent periods of inflammation, but nothing that requires drugs or hospital stays. The colon is checked out every other year to make sure the layers of scar tissue don’t run wild and morph into cancer. The risk of colon cancer for me is pretty high at this point, but since it’s being checked so often I’m not worried about it. If it grows, we’ll catch it early and deal with it.

Instead, I entered adulthood with a binge-eating disorder that stemmed partly from not being allowed to eat anything for weeks during flare-ups and frequent bouts of depression.

But now that all those things are under control, I can have a little fun and share three of the more unusual byproducts of the disease:

–I look strangely on people with the name Colin. No offense to the former secretary of state or anyone else with the name. It’s just that when I hear the name, I think of bleeding intestines. Sorry, man.

–I can swallow pretty much anything without getting seriously hurt because of the thick walls of scar tissue. This pisses me off sometimes, because a loss of appetite would have come in handy back when I was binge-eating my brains out. On the plus side, I can suck down the coffee without consequences.

–Needles don’t scare me. As a kid I had to have weekly blood tests to monitor for anemia. This went on for years. And they always had trouble finding a good vein because they collapsed from all the IVs during hospital stays. No matter. I don’t have to look away when the needle goes in. It just doesn’t bother me. Good thing I never tried heroin. That’s something I never would have had the guts to do anyway, especially after reading “The Heroin Diaries.”

Sometimes having guts isn’t what it’s cracked up to be. Especially when the guts are cracked and bleeding.

This post has a happy ending — not just because the worst of the flare ups ended in 1986.

The medical establishment knows a hell of a lot more about Crohn’s Disease than they did back then. Today most people know what Crohn’s Disease is. That wasn’t the case in the 1980s.

And Prednisone, while still popular, is no longer the only pharmaceutical option.

Even the embarrassment factor is smaller. People are more open about discussing these things.

In my experience, openness leads to more solutions.

32 thoughts on “The Lasting Impact of Crohn’s Disease

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  14. I was diagnosed with UC in March of 2007 & had a total colectomy by March of 2008. At that point my colon was bout 85% diseased & it was either take it or die, those were my only choices. I lived with an ileostomy for 8 months in between 3 surgeries. It was a horrible experience! During my 2nd surgery they found Crohns in my rectum & removed that also! With no gallbladder, colon or rectum, I seriously sometimes feel like the walking dead! Well, I had my take down in November of 2008 and my doctors reassured me that I will be fine for a while & up until May of 2010 I was. It started with little complications like obstructions that I was hospitalized for which I’m used & almost immune to all the needle poking & hospital stinch! And the big slap in the face or major kick in the ass 4 me is finding out I have Crohns in my J-pouch! My world came to a halt when my doctor told me this 3 weeks ago after I had an endoscopy done. Wtf?! Why?! How?! And tears is all that was going thru my mind & running down my cheeks! Crohns was the last thing I expected after only a year and a half after surgery & being completely healthy & happy! Now its back to pill popping 4x a day & dealing with the physical & mental drain of this plague called Crohns! =(

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  30. I can tell you from firsthand experience that it is very painful watching someone you love and care deeply about suffer from a Crohn’s flare and the procedures they must endure in order to combat a blockage or other problem. That being said, I am sure my loved one suffered even more than I because he was the one with the tube down his throat and the pain in his abdomen that the nurse told me was about as bad a child birth.

    Also, like you said, Crohn’s stinks but the medications stink almost as much. Either you have a steroid which messes up your metabolism and your mood or you have an immuneo suppressant that makes almost every cold or sniffle a potential catastrophe.

  31. Bill, I know a few people who also suffer from such a condition, including one we both know. I also like the mood music, and recommend clicking listening to it while reading.

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