When people hear that I have Crohns Disease, the typical responses are either A. That has something to do with your stomach, right? or B. What the heck is that? Crohns Disease is a part of a group of diseases collectively known as IBD (Inflammatory Bowel Diseases) along with others such as ulcerative colitis, which is not the same as Crohns. Doctors argue about where Crohns comes from, and how it started. Today, researchers released a report stating that Crohns can be traced back to Neanderthal DNA, so apparently I have too much caveman DNA—oh joy. Usually, I blame my mothers side of the family for it since it is often found in the offspring of eastern European women (my mothers family was from Germany). Interestingly enough, my mother suffered from psoriasis, which has been directly related to Crohns along with other auto-immune disorders such as Lupus, celiac disease, and rheumatoid arthritis among others. By the way, in addition to the Crohn’s Disease, I also suffer from another autoimmune disorder, Ankylosing spondylitis, which has affected my mobility, so if you see me in Wal-Mart , Sam’s Club, or Target in an electronic-convenience vehicle (ECV), that is why. I bought my own ECV that I use when we travel or visit places that require a great deal of walking. Crohn’s Disease can affect the entire gastro-intestinal tract from the lips to the butt; plus, it can also affect the skin and eyes as well as other organs and systems. My stomach is actually the least of my worries although when I am having an attack, the nausea can become so bad that I cannot eat, sometimes for days at a time; therefore, if you notice that I have lost a great deal of weight, it may not be because that diet is finally working; it could be because I have not been eating right or at all. Even the smell of food becomes nauseating. Oh, and now I also have to have monthly Vitamin B12 injections in addition to prescribed Vitamin D capsules because the Crohn’s causes the sufferer to lose those vitamins because of malabsorption of nutrients. Like many Crohn’s victims, I was undiagnosed and misdiagnosed. As a child, I was told I had a “nervous stomach,” and later in life I was told I had colitis. It took a colonoscopy ordered by my gastroenterologist to get the proper diagnosis. One has to remember that Crohn’s Disease is chronic and incurable. I take many pills every day (so many, in fact, that I joke that I rattle when I walk). I can honestly say that I have never missed one day of work because of the Crohn’s Disease—that includes sixteen years of teaching high school and another twenty-eight teaching college, the last eleven as a full-time employee. That does not mean that I have never felt bad. On the contrary, there are days that I don’t want to get out of bad. On other days, I am afraid to venture too far from the bathroom, scared that I will be caught short. (Ask Earl about the days when we have been out and about, and I have told him “Find a bathroom, now.” Some days I bleed like a stuck pig. I try not to complain and go to work and smile, but sometimes people can tell when I have a flare (that’s the technical term for a Crohn’s attack). I’ve been told “You don’t look like you feel good today,” and they’re right—there are many days like that, but I go to work. I have had three surgeries for the disease: two fistula repairs and one fissure repair (I won’t gross you out further by relating what those conditions are—let’s just say that they are not pretty. I will say that even when I had those surgeries, I was back at work the next day, looking awful, or rather worse than usual, but I hate missing work. Last month, I decided to supplement my prescription medicines with homeopathic treatments including coconut oil, marshmallow root, and cat’s claw (yes, more pills). The jury is still out on how they are working. When I was first diagnosed with Crohn’s, one of my family members said, “I looked up that disease you have. You’ll die of something else first.” That person was right—people do not die from Crohn’s Disease (although there is a definite correlation between long-term Crohn’s Disease and colon cancer). I do, however, die a little each day from the condition. There are so many activities I cannot do anymore. I remember when people used to tell me I was walking too fast (I am a New Yorker, after all); now, I use a cane whenever I am not using the ECV. I cannot eat nuts, seeds, or dried fruit (and one of my favorite snacks was cashews). After a while, I start to think my relative was wrong: people do die from Crohn’s Disease, just not all at once. If you are interested in learning more about the disease, here is a link to the Crohn’s and Colitis Foundation of America: ccfa.org/what-are-crohns-and-colitis/what-is-crohns-disease/
Posted on: Sat, 01 Feb 2014 04:57:52 +0000
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