Company’s calling - living with ulcerative colitis
Jennifer, an attorney in Washington, DC, volunteered to speak to us about living with ulcerative colitis. Many people live with some sort of bowel disease, be it Crohn’s disease, irritable bowel, or others. Living with such a disease can be hard because people don’t talk about them as they might about diabetes or high blood pressure. The more awareness there is, though, the easier it might become for some to ask for help if they need it.
Can you tell me about when you first started experiencing the pain and what kind of pain it was?
About ten years ago, I was diagnosed with ulcerative colitis, a chronic disease of the colon. The physicians tried to manage the illness with drugs, but none of them worked. After 2 months, the doctors found that I had a hematocrit of 16 and sent me to the hospital. The gastroenterologist put me on a regimen of IV steroids for a couple of weeks to control the disease. It never worked, so the surgeon did a colonectomy and ileo anal pull through. This is a series of two surgeries three months apart. The surgeon removes the colon and takes a piece of the small intestine. This piece is shaped into a pouch and replaces the colon. Obviously, the pouch doesn’t work exactly the same as the colon. My digestive system experiences a lot of pain, but it varies day to day.
Did you seek help right away? If so, what type of help and, if not, why not?
I see a gastroenterologist every year to talk about different ways to make digestion more comfortable. So far, none of the suggestions have worked very well.
What did the doctors tell you when you did seek help?
The only useful suggestion was to start taking an anti-spasmotic drug regularly. It still doesn’t work completely.
What have you tried to help you with your pain?
My pain comes from digestion, so no pain medicines are going to help. Anti-spasmotic drugs help. I take Levbid twice a day. My pain is caused by eating, and you can’t stop eating. So I will have some pain for the rest of my life. Eating less than normal helps, but I love to eat.
Can you tell me a bit about what worked and what didn’t?
I’ve tried a variety of digestive aids such as fiber, probiotics, and Align. I’ve tried various drugs like Lomotil and Levbid.
How does having this pain make affect you in terms of how you live your life?
My type of pain affects the way I interact socially. I don’t eat dinner or eat a very small dinner if I know that I’m going out with friends at night. If I’ve eaten, I’ll get stomach cramps ad can’t go out. I get a lot of stomach cramps regardless of what I eat.
If you were to look back over what you have tried/haven’t tried, would you change anything? If so, what would you change?
No
What would you say to someone in a similar situation who is just starting to try to find treatment and relief?
I would talk to them about various medications that I’ve tried and recommend to keep working with gastroenterologists to new things.
Thanks Jennifer. Hopefully, your post will help stimulate some discussion among people about this issue. Please come back and visit again.
Image: iStock.com
Tags: colon, colonectomy, digestion, gastroenterologists, ileo anal pull through, Levbid, lomotil, stomach cramps, ulcerative colitis
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POSTED IN: Company's Calling, IBS/IBD/Crohn's
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