60. People usually describe me based on what I have done in my career or on a list of degrees. Rarely.
My biggest accomplishment was surviving Crohn’s Disease, not the draft rules of Congress to think about.
Crohn’s is one of two inflammatory bowel diseases (IBDs). Sobriety ulcerative colitis. While ulcerative colitis is treated, Crohn’s disease is not.
According to the Crohn’s Disease Foundation of America (CCFA), as many as 1 million Americans have IBD. Of that number, up to 25 percent have an underlying disease. No one in my family had either condition.
My story, unfortunately, is all too common among Crohn’s patients, and is predominantly ignored. My mother’s guest pities childhood managed to twist, which was struck within the same year at school instead of asking why born what immune system allowed this to happen.
In the 1950s, whatever the doctor muttered to himself was considered gospel. So the doctor did not question when he hypothesized that my whole body was effervescent at the age of nine, probably because I had a cold.
Over the years I have been in Emergency Rooms and knocked on hospital doors 100 times, many of them to be treated for Crohn’s. disease The inflammation in my stomach kicked into 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 from drinking soda.
After many, many, many ER visits and unremarkable barium studies over the years, a gastroenterologist in Tucson who had seen many Crohn’s patients sent me back to a radiologist. This time the results were clear: Crohn’s disease advanced.
I was 31 years old. The baby was born in a month.
I am also prepared to seriously injure two murderers or two pathologists. Nor did I get Crohn’s disease during successive surgeries when I was 20 and 25.
My stomach quickly filled me with this insidious, incurable disease. One of the best things he did was give me the art used for medical students and suggest that I come back in two weeks to discuss what I would like. , so that I could cure myself of the disease. He also told me that while the disease was rarely fatal, it would change my life.
Almost 30 years later I learned to die. Here are my suggestions for patients and families;
1. Recognize that you go through the stages of pain. If you are sick, you have just lost the possibility of perfect health and all the accompanying benefits. I, too, when the disease flared up, suffered a miscarriage. For know that you are not so powerful that you can take away diseases for your loved one.
2. Acknowledgment by accepting the disease. Until you walk down the street and feel the urge to smarten up everyone you see, you have not met with this disease. Part of acceptance is to acknowledge the emotion of the body. I took a lot of comfort in realizing that there was probably nothing anyone else had ever experienced anywhere on this planet.
3. Don’t take the blame for other people’s behavior. I’ve had more than one unhappy marriage. Each one involved a single person who treated him badly in a weak and wayward relationship. It took me years to learn that this was their problem in every situation, not mine. I lack enough of mine. Contrary to what will be thrown in your face from time to time, Crohn’s disease is not caused by stress; It is irritable bowel syndrome (IBS).
4. Listen to your doctors but make the final decision. Most of the Crohn’s patients I know have had at least one surgery to remove the damaged tissue 30 times a day.
8. Be thankful for the good days. The medical community knows something about this disease. Just a little bit. They know our website is attacking them for some reason. And many of us know that we have odd reactions to the normal bacteria in our small intestine (or at least half of mine. what’s left) . There is no magic cure, no cure on the horizon. Staying positive and helping to raise funds to treat illnesses, consider being grateful for the good days. They are when you only go to the bathroom 6 times instead of 16, or your body temp is 99.4 vs. 101.4.
9. Defining speed. I would like to tell anyone who will hear about my illness and my latest hand. But trust me, very few people over 45 have perfect health. We also deal with arthritis, migraines, hypertension, stomach ulcers, and bad knees, all of which are harder to fix than a dog. /a>. However, we are also engaged in our careers and hobbies, sometimes parents and grandparents, and often volunteers serve to make the world a better place. Take off your shirt from time to time.
10. Spend some time with other patients. Ideally, find someone less experienced than you and help him. You just have to talk more about Crohn’s disease, or what your spouse was mean to you to fight.
It is true that IBD can be intimidating, expensive, discouraging, and alarming. But we all have our lives, whether we have them or not. When a diagnosis initially takes our lives out of control, the best way to regain some control for all of us is to make an effort to do better every day.
Report:
- Crohn’s Colitis Foundation of America (CCFA) – web site
