Every now and then I read a post-heading that says, "What's your worst symptom?" Most responders report that their worst symptom is debilitating fatigue, such that they sometimes have difficulty getting out of bed, let alone going to work/school, raising children, or doing normal, "must-do" daily activities.
While I definitely have had my own fatigue problems, it has never been debilitating. Because of other health issues, I've had problems with being extra tired since I went through puberty. Before puberty, I remember spending most of my time outside playing with neighbor kids. After puberty, I stayed inside, often curled up reading a book, because I was too tired to run around outside. On and off through my life I've had to take an hour . . . or more . . . nap every afternoon. (Keep in mind I was diagnosed with UC at age 57.)
So fatigue is not one of my worst symptoms. Tiredness has just been my whole life.
I actually have three "worst" UC symptoms. I could not pick THE worst because, for me, they all affect my daily life, basically causing me to hibernate in my house. They are, in no particular order:
1. Urgency. This is the time between when you first feel you have to poop and when you better be sitting on the toilet to avoid an accident. Before I developed UC, I could hold it for hours, if needed. At my worst after I got sick, before I was diagnosed and put on medication, I had three to five seconds to run to the bathroom, get pants down, bottom on the toilet. This is not an exaggeration. I had many accidents and was constantly washing my clothes, myself, and the toilet area, until I discovered the miracle of adult diapers. Even once in remission, I had about thirty seconds. I was finally getting to where I could wait a few minutes (and I purposely tried, just to see how it went) but then I went into my first flare after my first remission and the shorter urgency returned.
Before my flare, although I was thankful to be in remission (see last month's post, "Now I Know What a Flare Is"), it was frustrating that I still had to be aware of where bathrooms were located, everywhere I went. And just to be clear, when your urgency time becomes very short, you cannot leave your house.
2. Frequency. This is how often you poop in a twenty-four hour period. Before being put on medication, I was going about sixteen times a day. Your life becomes sitting and pooping, sitting and pooping, rinse (literally) and repeat. You don't sleep much. In my case, once on the toilet, I would usually be there for twenty to forty minutes. Then an hour again, do it again. You cannot leave your house because you might not get to where you're going without an accident.
I feel blessed because during my current flare, the worst I did was pooping about six times a day, and not at all during the night.
3. Pain. Pain with bowel movements is bad enough, and if that was all it was, I could handle it. I'm talking about the pain I have after pooping, when I'm sitting on the couch trying to recover from my bowel movement. Sometimes it's a dull ache, sometimes a harder pain, sometimes cramping with sharp pains. It lasts anywhere from a few hours to all day. Regardless, when this happens, I'm feeling so awful and sick that I can't do a lot. I become mostly couch-bound.
When these three symptoms hit, I can't leave my house. I have to stay in a room close to the bathroom. I have to wear diapers. I lay on the couch, fighting constant pain, along with waves of stronger pain, and try to figure out the one thing I can get my body to do that the day. Even having just one of these symptoms makes it so I cannot do my normal, every day living.
Thankfully, I'm going into remission and so currently do not have pain and my frequency has returned to once or twice a day. But my urgency is about ten to twelve seconds. And I've still had a few times when I ran into the bathroom and barely made it.
I wish I had only one "worst" symptom.
Actually, while I'm wishing . . . well, I'm sure you know.
© Colitis Senioritis 2024
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