My Body Has Betrayed Me

I’ve seen this attitude around the IBD community and I don’t like it, but cannot discount the feeling. Crohn’s disease and Ulcerative Colitis can make us feel out of control, like our bodies have taken the reins and we are just along for an extremely bumpy ride. When I read this phrase I had an immediate and gut wrenching reaction. It made me feel very sad.

I do often feel the need to whine, “Why me?” “What did I do to deserve this?” I get in moods where I don’t want to take care of myself. I do things which are reckless; eating the wrong foods, not resting enough, forgetting medications. When I spent ten years trying to go to college and would have flare ups before a semester was completed, I felt like my body was betraying me. Four years ago, when I had surgery to take care of a stricture in my small intestine, had an ostomy for 5 months and after they reconnected me I had accidents for the first time, I felt like my body was betraying me. To name a few. I know, for many people an ostomy is life saving, but I could not come to terms with what was going on with my body. I admire people who live life to the fullest with an ostomy. Anyway, this is not about ostomies.

Now, I find myself somewhat more accepting of my body. Things have gotten a little better, thanks to acupuncture and yoga. I try to not be so angry when my j-pouch tells me I have to go to the bathroom nearly every two hours. I try not to cry uncle about the gut pain. I believe that having a negative relationship with our bodies helps to make our symptoms worse. But, I have to admit that I am not a naturally upbeat and positive person. I takes hard work for me to have a positive attitude.

Right now, I am in pain. I went to the bathroom about an hour ago and I feel the need to go again. I know this disease is more than a “pooping disease.” Still, for me right now, it is about the pooping and the pain. The pain is frustrating and stressful, not things conducive to to a positive attitude. But I try.

I wish we did not feel that our bodies have betrayed us. It’s such a strong and ugly word.  

For Mother's Day

As my second post on this blog, it is long overdue. Sorry, I haven't had any inspiration and I've suffered from extreme fatigue for a long time, now. I blame it on the pain in my belly which is exhausting. I just haven't felt good, not enough of a flare to put me in the hospital, but enough to keep me down. I'm feeling a little better now, and I hope to write more post in the future.

In honor of Mother's Day, I'd like to say a few words about my mother in relation to my IBD. I'm one of the lucky ones. She has been through a lot with me and, as we like to say, "We're in this together."

While I can't speak to how my mother felt when I was first diagnosed, I was scared half to death and I'm sure she was, too. My first night in the hospital, as I think I have already mentioned, while I was having a painful blood transfusion, she stayed with me and read to me from my favorite book at the time, "Restaurant at the End of the Universe." She has helped me deal with doctor's, often making phone calls to them because I have an unreasonable dislike for the telephone, (I've gotten better at it.) and she still goes with me to my GI appointments, we've done it for this long why stop now. :p  She has been my best advocate, though I can't overlook my father's role, but this is about mothers. When I'm in the hospital she takes the 12 hour night shift, my father the day. I can't begin to tell you how helpful and stress reducing it is to have someone there to advocate with the nurses and doctors. She's also there in the middle of the night when I need to go to the bathroom, can't get out of bed by myself and can't wait for the nurse to come. Mostly, she is just there, always, in and out of the hospital. She learned to be a short order cook when I was first diagnosed and had a restricted diet, and she has learned to cook gluten free now that I can't eat wheat. She is empathetic and selfless, she is my first and best friend. I could not have survived this journey without her.

I love you Mom