Living with Ulcerative Colitis

Ulcerative Colitis is a difficult chronic disease that has affected almost every part of my life. Ulcerative Colitis, like many other diseases has no cure and can only be managed with diet and medication. Whether you suffer from Ulcerative Colitis or another chronic disease you have suffered embarrassment, guilt, anger, pain, and self pity. I hope by writing this article others who also suffer from Ulcerative Colitis, Crohns Disease, IBS or other issues may find some relief and realize they are not alone and there is indeed hope for a bright future.

Even before being diagnosed with Ulcerative Colitis I frequently suffered from digestive problems. 

Adjustments had to be made just to get through my daily routine. For one thing I could not and still can't relax and eat when I am away from home. When working I found it impossible to eat lunch without fear of an afternoon filled with diarrhea, cramps, and bloating. On the few times I braved or was forced by my schedule to eat lunch while at work I paid dearly! It was embarrassing to be seen heading to the bathroom every ten minutes (sometimes even sooner). Driving also took on a new meaning; I drove routes that I knew where bathrooms were, hoping and praying I could make it in time and the restroom would be available when I pulled up. 

I felt my family was suffering too. We had to work around my illness. A night on the town meant eating had to be the last thing we did or not at all. Fortunately my husband is truly a saint. He has never complained or fussed about the hardship my illness puts on our social life and tries to be as helpful as possible. Of course his behavior doesn't stop me from feeling guilty and at times like a party pooper. I spent the first year after being diagnosed with Ulcerative Colitis going back and forth from feeling sorry to myself, to waiting for my Gastroenterologist to find the magic pill to cure me.

Since there is no cure I am still dealing with this chronic disease but I am hoping to give others like me some keys to living with Ulcerative Colitis. 

The first step in living with a chronic disease is to get a Doctor you trust and be very open about all your symptoms and fears. Be prepared for the long haul. It may takes months or even longer to get the right balance of medication to reduce symptoms and not disrupt the rest of your body. Every patient is a little different so there will be some experimenting on getting your dosage leveled out.  Call your Doctor right away as soon as you feel a flare is coming up.

Try keeping a journal. When I have a flare up and again when it goes into remission, I feel like someone has flipped a switch. Of course as soon as my symptoms worsen my first thought is what did I do wrong. I wonder if I ate something I shouldn't. Its a tough lesson learning that I do not cause the illness or symptoms and they may be brought on by the weather or for no apparent reason at all. A journal can help you spot any patterns and possible food triggers that worsen your condition. You must understand though that sometimes the disease just flares up and sometimes it just goes away and this is just a part of living with a chronic disease.

Plan ahead. If you need to travel visit your Gastroenterologist a week or two before the trip and discuss increasing your medication or other plans for you being out of town. Even for day trips try to be prepared by locating restrooms ahead of time, bringing a change of clothes in case of an emergency and planning extra breaks for eating. When we go on vacations we plan on sightseeing until lunch, then we plan on taking some lunch back to our hotel and spending an hour or two resting at the hotel after lunch. I have most of my problems first thing in the morning and immediately after meals so whenever possible I do everything I need to do after 10 am.

If you are unable to work because of Ulcerative Colitis find a way you can work form home. The stress of working around my illness became too much for me and I was afraid I would never be able to contribute to our finances again. Instead I have learned how to work from home, creating and designing web pages and the paychecks have made my self image soar!