My Crohn’s Disease was originally diagnosed as Ulcerative Colitis (UC) when I was twelve years old. They are remarkably similar diseases only Crohn’s is considered worse since it extends further into the intestinal tissue. When I first realized I was ill (I am so lucky I caught it early) and brought it to the attention of my mother she was sure I was becoming the hypochondriac my older brother is. She was also in denial. My mother has UC, only she never told us kids until I was diagnosed. Her disease first became active when she was nineteen. She was very sick. The only medication then was prednisone (steroids) which I know all to well make you irritable and irrational with an unpredictable appetite or lack thereof, coupled with the urge to clean the garage or something else to focus the energy that somehow refuses to be focused into the work you need to get done. Prednisone has made me keenly understanding towards those with ADD and ADHD. My mother went into remission after a few years and her disease only recurred about a year before I started displaying symptoms. The doctors don’t know what causes my disease or how to cure it (only treat it) but they do know it is at least sometimes hereditary.
On NIH.gov they explain the disease, “Crohn’s disease is an inflammatory bowel disease, the general name for diseases that cause swelling in the intestines. Because the symptoms of Crohn’s disease are similar to other intestinal disorders, such as irritable bowel syndrome and ulcerative colitis, it can be difficult to diagnose. Ulcerative colitis causes inflammation and ulcers in the top layer of the lining of the large intestine. In Crohn’s disease, all layers of the intestine may be involved, and normal healthy bowel can be found between sections of diseased bowel.” If the ulcers go untreated they bleed. As early as 50 years ago people bled to death from this disease. But I am fortunate because my disease is very under control and I have never had to be on medication with bad side effects for more than short periods of time and I have never had to have surgery.
I never told anyone about my disease when I was first diagnosed. I was intensely embarrassed by it (due to the nature of the beast) and I saw no reason to share. Slowly I revealed it to my closest friends. Probably five people outside my family knew.
My high school had a retreat every year at the end of the year. Towards the end of Shabbat at Seudat Shlisheet the seniors would get up and make a speech with the goal of making everyone cry. I decided it was time to talk about my disease. To get over my embarrassment. Only I didn’t explain the disease at all. I told people I was sick, what the disease was called (then still diagnosed as UC) and thanked them for those days when they smiled at me and even though they didn’t know I was in pain made me feel better. I thanked the people who knew for protecting my privacy and being there for me. I made people cry. People came over to me after to make sure I wasn’t dying (I guess I wasn’t so clear about that). I distinctly remember a friend on the ride home singing to me.
Over the years I have met others with Crohn’s and UC. In Machal at Camp Stone there was Shira. She was part of SOS, Shira, O, Sarah. We were the best of friends and when we couldn’t find each other we just shouted “SOS!” It was great. She wasn’t diagnosed until after camp. I have not seen her since we were fifteen but we kept in touch here and there. She was sicker than me and had to be on predisone for long periods of time. I have never had to be on prednisone for more than two months. When you take the steriods for longer than that your body starts to store fat in weird places, the worst of which is the face. You get moon face. Shira’s brother was diagnosed with UC a year or so after her. Thank God, they are both doing well.
Then in college I had Sarah S. She was my apartment-mate my last semester on campus. God has a sense of humor because Sarah’s dad is a gastroenterologist (intestine doctor). Sarah had surgery a couple years back to take out part of the diseased intestine. But she took full advantage of her freshman freedom and drank often when we lived together. Every morning she would lie on the couch and moan that she would never drink again and then that night go out with her friends (she has since given up this pattern). From her I learned that clear alcohol is less likely to cause problems than colored. Fortunately, I am not a big drinker, I have to have an occasion and even then since I am such a lightweight I don’t need to drink much. I also learned how bad caffeine is for my disease in college but I seem to lose more and more control over that addiction as I have moved into the working world. I love the way coffee tastes and I need a boost around two in the afternoon to get me through the day. Sarah made me more confident about talking to people about my disease than anyone else ever had. She would call me “crohnsie” and I could talk to her about my intestines all day long without fear of her getting grossed out. Sometimes we would just shout “CROHNS!!!!” into each others rooms when we came home. I love that ginger firecracker.
Now I have Jonathan. He lives in my neighborhood. We only usually see each other on Shabbat at meals and to everyone else’s dismay, we are both completely comfortable talking about our disease in public. Jonathan was also diagnosed when he was twelve (he is a year older than me though). He can’t eat popcorn. I can’t eat pop rocks. We talk to each other about the medications we are taking. I can tell him when I am having a bad day and he knows exactly what it feels like. No exaggerations and no underestimations. He knows exactly. He also calls me “crohnsie” and we are something of a neighborhood joke with our penchant for discussing our intestines in large groups of people. Jonathan is planning on staging an intervention with a few other friends so I don’t leave but then again he also thinks he is going to hug me goodbye. Neither will happen (due to the fact that you almost never know if a hug is derach chiba there are only two boys outside my family that I will hug goodbye and I think they know who they are).
I am so thankful for those people who brought me out and made me comfortable with this huge part of who I am. It is not the doctor’s visits or the aches and pains, or the gigantic pills that have had a big effect on me. I am tough and those things don’t really phase me or change my daily life. What changes my life and the person that I am is the fact that I know that if I had been born in an earlier time I would have bled to death when I was twelve. My disease is a constant reminder to value my body and my health. It also makes me more sensitive to other people. And this is why have such a complicated relationship with the disease. My mother went into remission about four years ago after taking part in a study for a new experimental medication. She was very ill for an entire summer while taking it but now the only pills she takes are vitamins. I have always said I was jealous of her remission. This is the second time in her life she went into remission. Not everyone does.
But, I am not sure I want to go into remission. I have never been able to pray for my recovery with a full heart. I know, it sounds masochistic but everyday, I take three pills in the morning, three in the afternoon and three at night. So, when I pray, this thought haunts me, “if I did not have those three daily reminders of how precious my life is, would I forget?”
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