My husband has moderately severe ulcerative colitis (UC) and, despite being on medication, has frequent symptoms. Difficult for him, then, is his encounters with people who think this disease is no big deal or it can be self-cured. While some people with UC respond so favorably to medication that they remain in remission for very extended periods, for many this is not the case, and, there is no such thing as curing yourself of UC.
It seems hard to lead people to understand that UC is an autoimmune disease that has very little to do with controllable factors in a person’s life. About 500,000 people in the U.S. have UC, and about 50% of these have milder cases that respond well to medicines. The other 50% have more symptoms, have to go through difficult treatments, and may even have to have their colon removed.
What is Ulcerative Colitis?
Ulcerative colitis is a single disease, but it does vary significantly in its manifestation. It can be quite mild if found and treated early, or it can be deadly if not treated. The colon is an upside-down U-shaped organ, and UC can affect just the lower part of it (“proctitus”), the left side of it (“distal colitis”), or all of it (“pancolitis”). My husband has pancolitis, and no doubt this is partly due to a late diagnosis.
What happens with UC is that, for reasons currently unknown, the body attacks things in a person’s colon–and the colon itself–because it mistakenly views these things as infections. The colon becomes chronically inflamed, and this in turn further damages the colon. Left untreated the colon can become completely nonfunctional (called “toxic megacolon”), swell significantly, perforate, and cause death.
Ulcerative Colitis Symptoms
All of the symptoms listed below can range from mild to severe, and keep in mind that not everyone experiences all of these symptoms.
- · In children, a slowed growth rate
- · Abdominal pain and cramping; diarrhea
- · Blood and pus in stool
- · Weight loss; loss of appetite
- · Fever
- · Fatigue
- · Swelling and pain in joints
- · Nausea and vomiting
- · Lumps in skin that become ulcerated and then spread; mouth sores
- · Swelling of the iris of the eye
Complications from Ulcerative Colitis
- · Malnutrition, caused by malabsorption and/or medications
- · Bone loss and low bone density, caused by medications. (My husband had a foot break from only exerting normal pressure on it, and at a later point was found to have basically no vitamin D in his system.)
- · Anemia, and in some cases, massive internal bleeding
- · Colorectal cancer; cancer risk significantly increases each decade
- · Blood clots (especially in the legs, and clots formed there may travel to the lungs)
- · Kidney stones and liver abnormalities
- · Weight gain from certain medications, and emotional distress
- · Toxic megacolon, which leads to death if the colon is not removed
How is Ulcerative Colitis treated?
There are varying treatments, depending on the severity of the disease. They include proper nutrition relative to UC, prescribing “aminosalicylates” for mild to moderate UC, “immunosuppresents” for more severe levels of UC, and more difficult to handle drugs for emergencies or very nonresponsive cases. Please see Ulcerative Colitis: Medications for a detailed overview.
The ultimate treatment is the removal of the colon, or proctocolectomy. There are two different surgeries relating to proctocolectomy: the outcome of one is having an exterior bag that collect stool; the outcome of the more difficult procedure is that stool is expelled through the anus, made possible by a surgeon forming an interior “bag” from the small intestine. To read more about these procedures, see Removing the Colon: Surgical Options and Opportunities.
The CCFA: An Advocacy and Support Group
The CCFA, or Crohn’s and Colitis Foundation of America, is a nonprofit organization that funds research into inflammatory bowel diseases (IBDs) and publishes the scientific journal “Inflammatory Bowel Diseases.” The group not only has local chapters, but all kinds of information for coping with UC and other IBDs, research information (including clinical trials needing participants), leads to support groups and doctors, and an online community. If you want to find out more about UC and IBDs, or if you want to help find a cure through giving, the CCFA would be a great place to start.
Ulcerative Colitis – PubMed Health/A.D.A.M. Encyclopedia
Survival and cause-specific mortality in ulcerative colitis: follow-up of a population-based cohort in Copenhagen County – NCBI/PubMed.gov