Heatherina

Horrible, horrible, horrible

That pretty much sums up how I’ve been feeling

**Warning: this is not a post for the faint of heart or weak of stomach

“Who needs sleep? Well you’re never gonna get it. Who needs sleep? Tell me what’s that for?” A song by the Barenaked Ladies that was popular when I was in high school.

Well, apparently, sleep is not for me. For the past week I have spent my nights up and down, in and out of bed. Because as if struggling with one disease wasn’t enough, I have another that will always haunt me. At least the cancer will go away eventually. Even with treatment, I will always have ulcerative colitis/Crohn’s disease.

If you are unfamiliar with these diseases, ulcerative colitis (UC) is a form of inflammatory bowel disease (IBD). Ulcerative colitis is a form of colitis, a disease of the intestine, specifically the large intestine or colon, which includes characteristic ulcers, or open sores, in the colon. Ulcerative colitis is an intermittent disease, with periods of exacerbated symptoms (flares), and periods that are relatively symptom-free. Although the symptoms of ulcerative colitis can sometimes diminish on their own, the disease usually requires treatment to go into remission.

Crohn’s disease and UC are very similar, in fact, my doctors use the terms interchangeably. The biggest difference is that Crohn’s can affect the entire digestive tract, while UC is restricted to the colon. My technical diagnosis right now is pan-colitis. This means that I have the disease throughout my colon. Fortunately, the most diseased section, which cause the most flare-ups, was my ascending colon, which was also where I had the biggest tumor, so it was removed during surgery. But I still have disease throughout the parts of my colon that I still have. And it will never go away unless I have my entire colon removed; a less than desirable option which includes a colostomy bag.

So, not only do I take medications for cancer, but also for colitis. You would think that medications that were created to treat colon cancer wouldn’t have an adverse affect on the colon, but they do. At least they do in my case. Usually, I struggle with some mild diarrhea right after my treatment which resolves itself within a few days. This time, it didn’t. In fact, it slowly got worse.

The problem is, with all the medications I’m on, and the way my body works, it is such a delicate balance to keep everything functioning properly. I need constant monitoring and adjustment of medications. Since the tumors in my bone marrow are shrinking, I am having less back pain. This is great. However, now I am weaning myself off of some strong narcotics which were controlling the back pain. For the past month, I have also been weaning myself off of steroids which were controlling my colitis prior to surgery. What I didn’t realize was the painkillers were actually replacing the steroids in controlling my colitis symptoms. So being weaned off of both simultaneously, in conjunction with the chemo made my body go a little crazy.

For the past week I’ve dealt with this crazy body. At night, I am up at least once an hour going to the bathroom. I have, on several occasions, fallen asleep both on the toilet and in the bathroom on the floor. I can’t remember the last time I’ve slept for more than two hours consecutively. The symptoms lessen during the day, but I’m always tired and I’m always hungry, but I have very little desire to eat because I know that I’ll end up in the bathroom an hour later.

Anyone with IBD knows what I mean. And as gross and graphic as this may sound, I’m not even really going into detail, because it’s not really necessary. My doctors and I are playing the “try and see” game again with my colitis medications. A game that I’m good at since I’ve been playing it for the last year. Make an adjustment, wait a few days, and see how you feel. If the symptoms don’t improve, make another adjustment, wait, and see. And the cycle goes on and on until there is something that works.

But until we find that balance…here I am… 5 am and blogging because sleep eludes me.