I just turned 60. People usually describe me in terms of what I’ve accomplished in my career or my list of degrees. I seldom do.
My greatest achievement is surviving Crohn’s disease, not drafting regulations for Congress to ponder.
Crohn’s is one of two inflammatory bowel diseases (IBDs). Its cousin is ulcerative colitis. While removing the colon cures ulcerative colitis patients, there is no cure for Crohn’s disease.
According to The Crohn’s Colitis Foundation of America (CCFA), as many as 1 million Americans have IBD. Of that number, up to 25 percent have a close relative suffering from either disease. Nobody in my family had either condition.
My history, unfortunately all too common among Crohn’s patients, is predominantly one of being ignored. My mother managed to shrug off a host of childhood illnesses that struck within the same school year instead of questioning why her daughter’s immune system that allowed this to happen.
In the 1950s, anything a physician even muttered to himself was considered gospel. So she didn’t question the doctor when he hypothesized that boils all over my body at age nine were probably due to having just had a cold.
Over the years, I have hit the Emergency Room and hospital doors 100 times, many of them to be treated for Crohn’s disease. The inflammation in my gut hit high gear in my late teens, as is typical for many patients. This time, my parents confided to the ER doc that my symptoms were probably due to drinking soda.
After many, many ER visits and unremarkable barium studies over the years, a gastroenterologist in Tucson who had seen many Crohn’s patients sent me once again to a radiologist. This time, the results were unmistakable: advanced Crohn’s disease.
I was 31 years old. I had a baby a month old.
I was also ready two kill or seriously injure two pathologists. Neither had picked up that I had Crohn’s disease during successive surgeries when I was 20 and then 25.
My gastro quickly filled me in on this insidious, incurable disease. One of the best things he did was hand me a textbook used for medical students and suggest I return in two weeks to discuss what I’d learned so I could manage my own disease. He also told me that while the illness was seldom fatal, it would change my life.
Nearly 30 years later, I have learned to cope. Here are my suggestions for patients and their families:
1. Realize you will be going through the stages of grief. If you’re a patient, you have just lost the possibility of perfect health and all the blessings accompanying it. I also suffered a miscarriage when the disease flared. For family members, realize that you are not so powerful that you can take away the illness for your loved one.
2. Acknowledge accepting the disease. Until you walk down the street and feel the urge to smack every person you see, you have not come to terms with having this illness. Part of acceptance is acknowledging physical suffering. I took a lot of comfort in realizing that there was probably nothing I experienced that somebody else had not undergone at some point in time in some place on this earth.
3. Don’t accept blame for others’ behavior. I had more than one unsuccessful marriage. Each one involved an individual who dealt poorly with the illness and the way it affected the relationship. It took me years to learn that this was his problem in each case, not mine. I had enough deficiencies of my own. Contrary to what will be thrown in your face from time to time, Crohn’s disease is NOT caused by stress; irritable bowel syndrome (IBS) is.
4. Respect your doctors but make the final decision. Most of the Crohn’s patients I know have had at least one surgery to remove damaged tissue that drugs could not prevent. I have had five. I have intractable disease, which means drugs such as Asacol, Imuran (an immunosuppressive), and steroids like Prednisone or Budesonide cannot burn it out. I took the responsibility for ending infusions of Remicade when it became clear to me after two years that they were not helping.
5. Learn to live in the present moment. My surgeon and I agree that this is probably the hardest thing you as either a patient or a family member must do. Unable to control the disease, we frantically grasp to control anything we can reach. While scrambling to track IRA and retirement balances, I missed more than a few kid hugs and beautiful cardinals resting on a tree branch a foot from my bay window.
6. Banish the four-letter “F” word. It’s spelled F-A-I-R. There is nothing equitable about having this disease. You can no longer expect to automatically be able to work to age 65, whether you need to financially or not. You cannot anticipate always having automatic or affordable insurance coverage. Or a job. You simply must do the best you can to cope with life as it is.
7. Develop a truce with the disease. This might be impossible for some people. It took me years to learn to peacefully co-exist with Crohn’s disease. I treat it much as I do my bum knee with torn cartilage. I eat (or don’t) to accommodate it. I pamper it by getting extra sleep at times. I acknowledge that some of the drugs to treat it make me immunosuppressed, stay away from sick people, and wash my hands 30 times a day.
8. Be grateful for the good days. The medical community knows a bit about this disease. Only a bit. They know our own tissue for some reason attacks itself. And they know many of us have odd reactions to normal bacteria in our small intestine (or at least the half of mine that’s left). There is no magic treatment out there, no cure on the horizon. While remaining positive and helping raise funds to treat the disease, consider becoming grateful for the good days. These are the ones when you only have to go to the bathroom 6 times instead of 16, or your body temp is 99.4 vs. 101.4.
9. Limit defining yourself as a patient. Like most Crohnies, I initially wore a figurative T-shirt proclaiming myself a sufferer. I would blab to anyone who would listen about the illness and my most recent surgery. However, the trust is, very few people over 45 have perfect health. We also suffer from arthritis, migraines, hypertension, pot bellies, and bad knees, all of which are harder to fix than gray hair. However, we are also accomplished in our careers and hobbies, are sometimes parents and grandparents, and frequently serve as volunteers to make the world a better place. Take off the T-shirt from time to time.
10. Spend some time with other patients. Ideally, find one less experienced with coping than you are and help him or her. Just make sure you talk about more than Crohn’s disease or what a jerk your ex-fiancé was for breaking the engagement.
It’s true that IBD is frightening, expensive, discouraging, and mystifying. But we all have to live our respective lives whether we have it or we don’t. Since the a diagnosis initially makes our lives spin out of control, the best way to regain some control for all of us is to purposefully try to make each day the best it can be.
Reference:
- The Crohn’s Colitis Foundation of America (CCFA) – web site
