Loss of Control and IBD

One of the most difficult things about suffering from ulcerative colitis or crohns disease is the loss of control. I have talked a great deal about what this loss of control has done to me. In a nutshell, it forced me to find things that I could control and focus so intently on those things. The loss of control that can come alongside with a diagnosis of ulcerative colitis or crohns disease (no, you cannot have both) really does take its toll on someone. As with anything else, the impact this has on a patient varies from person to person.

There are many reasons why IBD patients often feel like their life isn’t in their hands. For starters, flare ups often come on without warning and very unexpectedly. This generally means that any plans a person has for however long that flare up lasts pretty much goes out the window or needs to be altered dramatically. As you can imagine, when this keeps happening over and over again, it can lead to feelings of anger and frustration.

The need to be hospitalized can also come at random, inopportune times. The risk for dehydration and bleeding is greater when you suffer from IBD and there are also so many other things that can land a person in the hospital unexpectedly thus taking them out of life yet again. So now an IBD sufferer is forced to be miss work, skip class or be away from loved ones. Meanwhile, life is carrying on. The stress and responsibility didn’t go away just because a person needs to be hospitalized.  A patient still needs to worry about make up assignments, deadlines and missing family events.

The loss of control of normal bowel function is also something that I feel is sort of a taboo subject. I honestly don’t know how great I would be at talking about this with someone who didn’t have IBD and wasn’t in my family actually in person. Anyway, the loss of control of your bowels is extremely upsetting and it is something that those of us suffering from ulcerative colitis or crohns disease will have to deal with at some point. It is really hard to go from barely thinking about going to the bathroom to it being the sole focus of your life. That is how it was for me. It wasn’t even a thought and then bam one day I have UC and that is all I can think about.

Being a patient with ulcerative colitis or crohns disease is really, really difficult. It may be an invisible illness but it has very real side effects. The toll these two diseases can take on a person is ridiculous. Truly absurd. I say “absurd” because the fact that these truly heartbreaking, gut wrenching illnesses barely get any awareness is beyond me. And when they do – the severity of IBD is minimized so much that I would honestly prefer it get no attention whatsoever.

Later today, I plan on expanding on the post I wrote Tuesday on “Body Image and IBD” http://keepingthingsinsideisbadformyhealth.wordpress.com/2012/12/04/body-image-and-ibd/. I thought this would be a good segway into “The Visible Parts of an Invisible Illness.”

  • Jodi

    Just caught up on the last 3 blogs… you are doing great work as a patient advocate. Your blog about docs was right on… unfortunately, I think it’s a reflection of the state of healthcare in this country.
    You have regained control (as much as you possibly can) by writing this blog and doing something positive with a “less than ideal” situation. I know it will help others feel a better sense of control as well.