My Turn: Living With Crohn’s | Newsweek My Turn: Health Triumphs

When you've got Crohn's disease, any meal has the potential for painful consequences.

By John Saccenti | Newsweek Web Exclusive

Dec 21, 2007

Email To A Friend

Please fill in the following information and we'll email this link.

SPONSORED BY

My diet is tricky. Most fruits and vegetables are a no-no. Wheat bread? Not a chance. Brown rice? Not going to happen. Nope, my diet consists mostly of PB&J on white bread, potatoes without the skin, and pasta with salt and butter—the types of food that most people are urged to shy away from for health reasons. But in my case, these are the kinds of food that keep me healthy and, with some luck, out of the hospital.

Such is the lot for someone with Crohn's disease.

Since being diagnosed in my early 20s, I've had to schedule trips and activities around what I put into my body and my proximity to a bathroom. Why? Crohn's causes my body to attack food as if it were bad and, when I eat, dispatches white blood cells to deal with the "intruders" accordingly. That in turn produces chronic inflammation of the digestive tract, pain, and diarrhea. Foods high in fiber tend to set me off, hence the bland diet. Eating is a balancing act for me, bouncing between bland and boring and fun and bad, and trying to keep track of what has made me sick in the past and how I'm feeling that day.

At first I viewed Crohn's as simply an inconvenience. It meant that I always needed a bathroom nearby, or that I needed to know where the nearest public restroom was. At one time I knew which hotels on Route 1 in central New Jersey had the best, cleanest bathrooms, just in case I needed to make an emergency pit stop. My gastroenterologist urged me to watch what I ate, which I occasionally did, and even told me that I should keep a food journal, charting what I ate and what effect it had on me.

But I was young, and like others my age thought I'd live forever. I ate what I wanted for the most part, didn't bother with the food journal and gave little thought to all the trips to the bathroom. My doctor prescribed a lot of pills—12 a day at one point—all to deal with my disease and its side effects. Everything seemed fine. It was just a minor nuisance, and the weight I lost was no big deal.

It wasn't until 1998, about five years after I'd been diagnosed, that I began to realize that Crohn's could be serious business. I was tired and could barely move. The uncomfortable pain I'd occasionally felt before blossomed into something far more excruciating, and getting in the fetal position for hours did little to help. My doctor had me take the steroid prednisone on top of the other pills I was taking. I reluctantly did and it helped, but it took a while and the weight of my five-foot-nine frame dropped to between 140 and 150 pounds, down from about 175.

I have a very different chronic disease from Crohn's but the darnedest thing about having a crhronic disease is the acceptance of it. I have been dealing with mine for almost twenty years and sometimes I am still surpirised that it is stll here, especially when I first get out of bed in the morning and start the difficult process of living each day. I think I was probably twelve or fifteen years into my illness before it finally dawned on me that it wasn't going to go away, not now, not ever. A friend was recently diagnosed with Crohn's and I've been reading the incredible news about it. I know he does not yet have any idea yet the scope of living with a chronic illness. And while I'll never have the damage from Crohn's myself, I do have an extremely irritable bowel, and I know what you mean about locating each and every restroom, especially the clean and nice ones, in the two counties where I work and live. I'm doing better now that my doctor has convinced me what I can and cannot eat, but it's a really weird way to have to live life, scoping out the restroom the moment I go into a new place, hoping I will not mortally embarass myself with a dietary indisgression. A chronic disease can and will change a person's whole life, even while thinking you will not let it change you. Mine has robbed me of big chunks of my health, my personality and my life. I was not able to finish college in a timely manner, and now it will never happen due to other complications. My income is much lower than it might have been, and I have to go to work every day in pain to earn and pay for the insurance I need in order to support the illness that I would rather throw out the window and be done with. I feel like I now live on the fringes of what once was once my life and the life that other people have. I would cry and rage about it, but that does no one any good, All any of us can do is live the life that God gave us to live as best we can and be happy with the good things that we do have.

Member Comments

- Reply
- Report Abuse
Posted By: jwjw94533 @ 06/08/2008 8:02:56 AM

Ask your doctor about probiotics. Probiotics are known to benefit digestive tract problems, including Crohn's.
Unfortunately the medical industry did not pay much attention to it.
You will find lots info on line such as this one: http://www.crohns-disease-probiotics.com/
- Reply
- Report Abuse
Posted By: Knnt @ 03/17/2008 11:53:33 PM

I have a very different chronic disease from Crohn's but the darnedest thing about having a crhronic disease is the acceptance of it. I have been dealing with mine for almost twenty years and sometimes I am still surpirised that it is stll here, especially when I first get out of bed in the morning and start the difficult process of living each day. I think I was probably twelve or fifteen years into my illness before it finally dawned on me that it wasn't going to go away, not now, not ever. A friend was recently diagnosed with Crohn's and I've been reading the incredible news about it. I know he does not yet have any idea yet the scope of living with a chronic illness. And while I'll never have the damage from Crohn's myself, I do have an extremely irritable bowel, and I know what you mean about locating each and every restroom, especially the clean and nice ones, in the two counties where I work and live. I'm doing better now that my doctor has convinced me what I can and cannot eat, but it's a really weird way to have to live life, scoping out the restroom the moment I go into a new place, hoping I will not mortally embarass myself with a dietary indisgression. A chronic disease can and will change a person's whole life, even while thinking you will not let it change you. Mine has robbed me of big chunks of my health, my personality and my life. I was not able to finish college in a timely manner, and now it will never happen due to other complications. My income is much lower than it might have been, and I have to go to work every day in pain to earn and pay for the insurance I need in order to support the illness that I would rather throw out the window and be done with. I feel like I now live on the fringes of what once was once my life and the life that other people have. I would cry and rage about it, but that does no one any good, All any of us can do is live the life that God gave us to live as best we can and be happy with the good things that we do have.
- Reply
- Report Abuse
Posted By: JudyLynn @ 03/13/2008 3:51:58 PM

You sound so much like me before I started Remicade treatments. I have my life back and work from 8-15 hours a day. It has made the difference in just existing and actually living again. It is worth checking in to.