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

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Eventually I started to feel better, and I vowed to be more careful about what I ate. But in 2005 I was sick again. My Crohn's had suddenly flared up, which it can do even when I think I'm eating the right things. I lost more weight, took steroids, and got better for a month or so. Then one evening I found myself racked with abdominal pain. I was throwing up and, for the first time in years, couldn't go to the bathroom. My digestive tract had become so inflamed and swollen that I ended up in the hospital for almost a week. I was allowed nothing to eat but clear liquids and was stuck to an IV that delivered steroids, antibiotics and fluids. The doctors told me that I had an intestinal obstruction that was probably the result of the scar tissue that can form when the intestines are inflamed for so long.

When I got out I was hopeful that I'd feel better. I started to pay closer attention to what I could and couldn't eat. I gave up most high-fiber foods, like broccoli and carrots, entirely. But less than a year later I was at the University of Pennsylvania for surgery to repair a hole in my intestine that led to my bladder, yet another result of regular inflammation. While inside my abdominal cavity, the surgeon cut out chunks of my colon, removed my appendix, and fixed a few other areas that apparently needed fixing.

It took months to start feeling better. But one week shy of a year later I was in the emergency room again, racked with pain. That stay lasted less than 48 hours. It wasn't fun and it wasn't over. Two months later I hit the hospital again, this time for two weeks because of a bad reaction to 6-MP, an immunosuppressant meant to lower my white cell count.

I've been out for a few months now and hope to make it a full year without a hospital stay. I'm cautiously optimistic. Multiple stays in the hospital have taught me that I could be there again tomorrow without notice, so I'd better make the best of today. I've started to jog and I am vigilant about sticking to my strict diet.

I also realize that I'm lucky. As bad as I've had it, I know that there are others who have it much worse. Other Crohn's patients have had multiple surgeries. Some have to use colostomy bags, or they have had the disease spread to areas that make their lives much more difficult. They miss school and work and often have to stay home. There are even children who have it, an idea I find unbearable, especially since I have a daughter of my own.

For my part, I'm going to take it one day at a time and do my best to stay healthy by eating better, exercising, and being more aware of what makes my Crohn's flare up. I know I may not be able to avoid another hospital stay. But it gives me comfort to know that I'm doing everything I can to prevent it.

Saccenti lives in East Brunswick, N.J.

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.

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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/
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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.
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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.