A friend asked me about good Crohn’s causes she could donate to because a friend of her daughter is gravely ill from the disease. I shared my thoughts, but wanted to reach out directly to the person suffering.
I hear you are really going through the meat grinder right now and that you face life-threatening surgery. I’ve been there, so this is my attempt to give you some peace of mind.
I experienced all the things you are now — the massive loss of blood, the knifing pain in the gut, sleepless nights in the bathroom, and more blood. But looking back, I must say that in the long run it’s 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 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.
As you have probably discovered by now, the most popular drug to treat it is Prednisone, which comes with a long list of side effects. In fact, the drug screwed with me much more than anything else. More on that in another post I wrote called “The Bad Pill Kept Me from the Good Pill.”
But I’m here to tell you there’s no need to write yourself off as doomed. There’s the spiritual argument for this, where you put all your trust in God. I’m a true believer and subscriber of that argument. I also know that in your darkest moment, there are always people to help you through it.
A lot of people helped me survive a childhood of brutal Crohn’s Disease: My parents, great doctors, school friends who helped me catch up with my schoolwork and rooted for me whenever I got out of the hospital, and a great therapist who helped me sort through the mental byproducts of illness.
I think you’re going to get through the current attack and that you will be able to move on to a better life. Again, I lean on my personal experience.
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.
Had the doctors removed the colon when I was a kid, I think things still would have worked out. I would have learned to live with it. Whatever you have in front of you, I think you can make the best of it and push through.
Good luck and God Bless you.