Friday, July 8, 2011

Ulcerative Colitis

Hi, my name's Raene, I'm 42 and I have Ulcerative Colitis, or UC for short.

UC is when the body's immune system in the colon, starts attacking the colon. The colon gets inflamed, and ulcers are created that bleed. The colon doesn't absorb water like it should. The effect this has on bowel movements include cramping, diarrhea, nausea, bloody bowel, frequent urges to go, and stool incontinence.  The effect on the body is tiredness and dehydration. I have had all of the above.

I suffered for a year with it, not knowing what it was. I thought, "Gee, I'm just stressed" or "wow, I really ate something bad" or "Maybe I'm gluten intolerant" or "Maybe it's IBS" or "Perhaps it's hemorrhoids."

The first time blood was present, I went to my general practitioner. He did an exam (stuck his finger up my behiny) and declared no blood- perhaps it was hemorrhoids.  As to the diarrhea, so bad that sometimes I didn't make it to the bathroom - he gave me a Rx.

So I continued to suffer. I intended last summer to get a colonoscopy, but put it off- not wanting to face the process, or the possibility of the big C (cancer).

I should tell you I'm a teacher, and most of my years has been teaching kindergarten. This past year I've survived at work because we always had a bathroom connected to our room, and I had an assistant.

My day:
wake up 4:30 or earlier with urges to go to bathroom. Sit for a spell, endure the cramps, let it all out. go back to bed. Five minutes later, up again, same thing. Go back. Ten minutes later, back to the toilet. I call this the Bathroom Dance. It usually went on for an hour, with less and less ending up in the pot, but the urges were no less real. I knew every time I got out of bed it disturbed my fiance, so I took to laying down on a pile of clothes in my walk- in closet.

After "dancing spell" is over, I get ready for work, and hit the bathroom one more time (or two, or come back to the house before I'm out of the driveway) before getting in the car.

I stop for breakfast, take it to work and eat it, knowing that the act of eating will put me in a bathroom dance again, though not for an hour.

About 2 hours after lunch, got to go again- but not a huge dance. Two hours after that, when kids are gone- The dance begins again. Half an hour later, I'm good to make it home.

Have dinner, do a dance again. Go to sleep- if I'm lucky, my bowels won't wake me up at 2:45.
I suffered like this for quite some time. What made me finally go get a colonoscopy was that I started having waves of nausea and then cramping.

I made the appointment and the nurse went through my symptoms and she was the first to look at me incredulously- how had I been living like this for over a year? She was the first person that let me know I wasn't crazy, this wasn't all in my brain, and that I had something seriously wrong.

Perhaps another day I'll go into the colonoscopy prep and exam- suffice to say they put me to sleep for the whole thing.

At the results meeting, my doctor told me there are three kinds of colitis, differentiated by where in the colon the ulcers and inflammation occur. I have pan colitis, meaning it's all over from beginning to end. He said science really doesn't know yet what causes this, that it's the immune system attacking my colon. It's not catching, and they think it's genetic.

So he put me on a Rx called Lialda, and the differences wehe like night and day. Granted, I was taking three large pills every morning- but hurray! for not crapping my pants.

In June I started to have a "flare up", and needed to get it under control. I called and he upped me to 4 pills a day, and wanted to see me the following week. At that meeting he said if it gets worse, or doesn't get better, they have to switch Rx. I'd be going off Lialda and onto steroids and immunosupressants.

I didn't want to go that route, and tried ginger as well as aloe vera juice. I think the ginger made it worse, (too spicy) but the aloe may have helped a little. At least it felt like it calmed my intestines for a short time.

When the flare up started, I was having more severe cramping, and more frequent urges. Now however, it's totally watery.  I had things to do today, and couldn't sit at home on the toilet, so I didn't eat till I was back from my first outing. Afraid to eat is more like it. Afraid that if I eat, it'll start the gastro-engine and I'd be doing a dance, or worse (being out and not making it to a bathroom in time). I had a small lunch, napped for 2 hours (didn't get proper sleep last night because of bathroom dancing) got up, had a banana, but was still afraid that it'd trigger me during my second outing.

After second outing, I was enroute to the store and didn't make it to the bathroom in time. I'm literally tired of this shit. Even though it's mostly water, I'm tired of it.

I bought some Ensure, Gatoraid, Kefir, and.... big girl pampers. Sigh.

I hate that it's come to this. I know I'll see my gastroenterologist next week, and start on the new meds. While I like the thought of the steroids making me super productive as I start to set up my classroom, I'm not looking forward to not being able to rest. I'm wary of something lowering my immune system when I'll be around kids all day.

But it is what it is.

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