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.
**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.