I have Ulcerative Colitis (U.C.) and this is how I explain the illness to my friends or anyone else who wants to know. This is my explanation from my experience and my understanding from what doctors have told me and what I have read.
What is it?
Ulcerative Colitis is an autoimmune chronic disorder which affects the outer layer of the colon (the last, left section of your large intestine.) It is similar to the disease known as Crohn’s Disease, which affects the outermost layer of the various tissues anywhere along the digestive tract, from mouth to rectum. So, UC is not as serious as Crohn's.
In the event of a flare-up, when the disease is at its worst, the immune system sends a signal to the lining of the colon to secrete mucous and inflame. In a healthy person, this is the body’s reaction to some kind of other problem, like bacteria, and will help the person fight infection by causing diarrhea. In a person with UC, the signal from the immune system to ‘fight’ is false; there is no bacteria or foreign invader. The result is that the colon will inflame and oversecrete for seemingly no reason, unceasingly. If untreated, this can lead to abdominal pain, cramping, internal bleeding and bloody diarrhea, as well as what I like to call “constipated diarrhea.” Also, digestion and metabolism are hindered, resulting in dehydration, dramatic weight loss and fatigue, and loss of blood can lead to anemia. I have experienced all of these symptoms.
How is it treated?
Mild UC can be controlled with corticosteroids and antibiotics. Flare-ups are usually treated with a combination of steroid enemas and sometimes stronger steroids such as Predisone to control inflammation. More severe cases of UC may need to be treated long-term with immune system suppresent drugs or strong steroids, which often lead to other complications such as osteoporosis. People with UC also have a much higher incidence of colon cancer, and in the most severe cases, the whole colon may need to be surgically removed. UC patients may find they can control their symptoms also with diet, but the changes vary from person to person. The general recommendations include limiting or stopping ingestion of nicotine, caffeine, and alcohol, which stimulate the digestive system. People with UC can usually keep an active lifestyle and will probably benefit in the long run from it.
How common is it? What causes it?
UC is not actually very rare, it being associated with Irritable Bowel Syndrome, which affects almost 30% of Americans. But like IBS, doctors are unsure of the causes. In my case I can see that the events of flare-ups are stress-related. My doctor thinks that the initial onset, when I was 16, was triggered when I contracted salmonella. UC is usually diagnosed in the teens and early twenties, with a lower percentage of cases beginning with people in their late thirties. In some cases, like mine, the onset is thought to be caused by a ‘shock’ to the body from disease or a major life-change. When I was 15 I also had my gallbladder removed because of gallstones. I have had a few serious flare-ups in the fours years since my diagnosis, and have also become lactose intolerant. Right now I am recovering from the worst one, when I was hospitalized and restrained from eating for a few days in order to "let the colon rest." As of now, I cannot eat uncooked fruits or vegetables.
What Happened to Me
If you have symptoms of diarrhea which turns bloody, also occurring with abdominal pain and/or fever and loss of appetite, then you may be having the first event of UC. In any case, you should go to a doctor because none of those things are good! In my case, the initial symptoms resembled salmonella so much that I thought I had contracted it again. When it first started, I didn’t do anything for a week, hoping it would go away. My condition progressed to the point where I actually wasn’t digesting any of the food I ate. When I realized that I really felt that I could die if I did not do anything. After a gamut of testing, some awkward and painful, the doctor diagnosed UC and we started treatment right away. The first treatment was medicated enemas twice a day for a week.
Up until this point in my life, I had been relatively healthy, I thought. The gallbladder problem seemed minute, since it was hereditary and the surgery was supposed to take care of it. The shock of the diagnosis took me a few months to comprehend. Although I have a mild case, it was still enough to make me think: I have this disease for the rest of my life. Everything I do, I will have to take this disease into consideration, as if I have a child that stays young and needy forever. But more than that, I was very young, (I still am). I was still in that state of believing myself to be strong and invincible, but the disease threatened to defeat me. It took me a long time to cope with what felt like my body’s war against itself. Even still this feeling of helplessness creeps into what feels like an upward battle against myself. Day to day I can feel fine but if I wake up in the night with a pain in my gut I can never be sure what tomorrow will be bring.
I realize that there are a lot more terrible diseases that people deal with day to day. This is just my account of how I feel about mine. Anyone who lives with a chronic disease or disability, no matter how ‘minute,’ it is still a disability. It is a part of yourself that simultaneously wears you down and makes you stronger. The best you thing to do is to stay positive and take care of yourself.