Daily Struggles with the Chronic Disease, Ulcerative Colitis

"I never know when I am going to have a flare up. I never know when the pain is going to return and make it impossible for me to go to work. I just wish there was a cure, and that doctors would realize how upsetting this disease is to a person's everyday life," says Bill G.

Bill, who has an uncle diagnosed with Crohn's disease, has been dealing with the daily complications and pain of ulcerative colitis for the last 24 years. He was diagnosed at the age of 42, nearly 10 years after he believes his symptoms first started.

"I first thought I had just developed a problem with dairy. I would get these attacks of pain and diarrhea, and sometimes they were so bad that I couldn't go to work for a week or more, even after taking every over-the-counter medication I could find to help. Finally, after 9 or 10 years of pain and suffering, I ended up in the hospital because of dehydration. That is when I was finally diagnosed."

Ulcerative colitis is a chronic and often debilitating type of inflammatory bowel disease that causes inflammation and ulcers in the lining of the rectum and colon. Symptoms generally first appear between the ages of 15 and 30, but people of any age can develop ulcerative colitis. Men and women are equally affected, and this disease appears to have a genetic component. Up to a quarter of sufferers have a family member with ulcerative colitis or another IBD, such as Crohn's disease.

Unfortunately, many of those who suffer from ulcerative colitis go a number of years before receiving a diagnosis and getting help for their symptoms. Many blame their symptoms on food intolerance, poor diet, or other health problems. The most common symptoms of ulcerative colitis, bloody diarrhea, abdominal pain, fatigue, weight loss, and loss of appetite, are often ignored or thought to be a result of stress or due to a poor diet. Doctors often disregard the symptoms as well, especially in women, delaying diagnosis even longer. This was Mary's experience when attempting to seek help for her chronic diarrhea and pain.

"I literally saw ten different doctors over a few years before ulcerative colitis was even mentioned. Most of the doctors tried to blame my symptoms on being overweight or on stress. One doctor even tried to convince me that my symptoms were all in my head, and he told me I needed to see a psychiatrist. The whole time, I was slowly becoming more anemic, but that didn't seem to matter."

Like Bill, Mary's job suffered, as did her education and her family life. "I just hurt all the time. I felt like I couldn't function at home or at work. So many days I couldn't even play with my children or cook dinner for my family," Mary recalls.

Ulcerative colitis is not caused by stress or food intolerance, but episodes of the illness can sometimes be triggered by such factors. While the exact cause of ulcerative colitis is not known, some scientists believe the disorder is caused by a malfunction in the immune system. Treatment generally involves the use of medications, such as aminosalicylates, corticosteroids, and immunomodulators. Up to half of those that suffer from ulcerative colitis will eventually need to have part of their colon surgically removed due to bleeding or severe illness.

Bill is currently considering surgery to remove his colon. "I have been taking medications for years, but my symptoms seem to be getting worse instead of better. I no longer eat any dairy, I have to take high doses of vitamins to make up for what I lose with the diarrhea, and I take probiotics and fish oil everyday. I just want to be able to plan a vacation without worrying that it will be ruined by an attack of pain that keeps me in the bathroom for days at a time."

Mary is currently in remission after taking azathioprine, an immunomodulator, for the last 10 months. She says she worries every single day that her medication will stop working and that her symptoms will return again. Although she has not had any serious symptoms in almost a year, Mary says her life is still severely disrupted. "I just started counseling actually. Sometimes I think the stress of waiting for another attack is worse than the attack itself. I hope and I pray every last day that they find a cure for this disease so that my children do not have to suffer as much as I have."