Living with Chronic Disease

I have been living with ulcerative colitis* since June 2005. In that time, I have been hospitalized twice, had 2 blood transfusions, had a barium enema**, had 3 colonoscopies, had a gastroscopy, had too many IVs to count, and had blood tests in the hundreds. I have taken more medication for colitis and its associated secondary illnesses than I ever thought one human being could take. I have lived in chronic pain for most of the last 5 years.

Ulcerative colitis is an inflammatory bowel disease. It is confined to the colon where it causes ulcers that can bleed. Severe pain, cramping, diarrhea and blood loss are some of the common symptoms of ulcerative colitis. There are also symptoms that occur outside of the colon. These symptoms can include joint pain, eczema, eye problems, thrush, canker sores, yeast infections and other fungus, and skin eruptions (like boils). In reviewing the list of symptoms outside the colon, I have had most of them at various times.

For the most part, I persevere through all of this. I have developed an anxiety disorder living in pain and the stress of constantly locating bathrooms. I never know what the day will hold for my colon. In the early years, I would make 20+ trips to the bathroom. It was exhausting.

Fatigue is perhaps the worst part of this disease for me. I am so tired all the time. It is a different kind of exhaustion on a level I have never felt in my life until ulcerative colitis. I need to sleep 12 hours per night to function at all.

I cope ok. I am stubborn and I refuse to give in. However, there are days when I just lose it. Today was one of those days. My hemoglobin is low due to bleeding and Imuran.***  I am tired. I have had a difficult week. I have passed a lot of mucous and blood this week. Plus I have a very painful boil on my leg and canker sores in my mouth. It seems that the more symptoms I have, the less well I handle it. Add stress from life and I want a nice quiet place where I can cry. Today was one of those days. I don’t have a lot of those days. I probably have a right to have more of these days than I do.

*I will write about food and ulcerative colitis for Wandering Coyote at some point in NaBloPoMo.

**The barium enema, was hands down, the worst test I have ever had. It as humiliating, painful and did I mention humiliating? Plus you don’t get that wonderful conscious sedation so that at least you can forget about it the next day.

**Imuran is an immune suppressant medication that I take for ulcerative colitis. I also take mezavant and pariet.

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Published in: on November 6, 2010 at 9:08 pm  Comments (2)  

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  1. Hello There,

    I’ve had UC about the same legnth of time you’ve had, but fortunately for me I’ve not had it as bad. My symptoms started off slow from May ’05 untill I was finally diagnosed with it in November 2005.

    In the early days my highest toilet visit count was 16, and I’m with you… it was so exhausting! And even though I only have a mild flare these days it still can be!

    I had my second colonoscopy two weeks back and they found lots of poloyps as well the UC! They took biopsies of which I’m yet to get the results, I think that’s a good sign! Luckily I’ve never had the other two procedures… so far.

    You know, I understand your feelings of wanting to hide away and cry, I feel like that myself on and off all the time. So if you feel like it, then you should do it, you’d probably feel better after it.

    I already had an anxiety problem before I had the UC and after it, well… less said the better. It really annoys me when people start telling me to go out when I could soil myself in public! I’ve had a few close calls!

    I don’t want to rant, just wanted to drop you a message to say I understand.

    Regards,

    – Phil

    • I completely understand. It all really sucks. I do think that by getting our stories out so that people understand what it is to live with this disease.


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