Helping Family Members with Ulcerative Colitis, Crohn's or Other Bowel Diseases

My sister was diagnosed with Crohn's disease in 1966 when she was a teenager and I was four years old. The constant stomach pain and frequent uncontrollable diarrhea made it impossible for her to finish high school. My sister-in-law was diagnosed with ulcerative colitis around 1969, when I was seven or eight. A serious flare up led to the premature birth of her second child. The doctors were unable to save him.

The treatment options for ulcerative colitis and Crohn's were very limited in the sixties and seventies. Even diagnosing the conditions was difficult. Barium X-rays were around back then, but often failed to show the problem. Both my sister and sister-in-law underwent several exploratory surgeries, as their doctors searched for the source of their pain.

Because I grew up watching my loved ones suffer from these diseases and from the procedures used for diagnosis, one of my goals as a health writer has been to provide information about options for those who suffer from Crohn's or ulcerative colitis. Crohn's, in particular, is often misunderstood. For many years, some of my family members and even my sister's physicians believed that her symptoms were psychosomatic, since barium X-rays and exploratory surgeries revealed nothing. She went through many tests, some of which she found quite embarrassing. Doctor's tried a variety of medications including steroids, immuno-suppressive drugs, anti-inflammatory drugs and strong pain medications, before finally recommending a colostomy as her only option for living a fairly normal life. Colostomy is rarely recommended for Crohn's patients today, since symptoms often appear in other portions of the intestines after surgery.

My sister-in-law eventually chose colostomy, due to the severity of her symptoms. Since the surgery, over thirty years ago, she has been symptom free and only visits her doctor for regular check-ups. Sadly, my sister was never well, even after the surgery, and passed away many years ago. I truly believe that if the options and alternatives that we have today were available to her when she was young, she would have lived a long, happy, healthy life.

To begin with, diagnosing Crohn's and other inflammatory bowel diseases is more accurate today and less surgery is required. Physicians initially use blood tests to look for low red blood counts, low blood proteins and low levels of minerals. These low levels indicate that chronic diarrhea and/or intestinal bleeding is stealing essential nutrients and other elements from the body, explaining symptoms like fatigue and others that are related to malnourishment.

Colonoscopy is a diagnostic tool that has all but replaced exploratory surgery. It is an outpatient procedure that rarely causes complications and may lead to earlier diagnosis and more effective treatment, without surgery. New tools, such as virtual colonoscopy, may be available in the future. Some doctors have been using virtual colonoscopy, a non-invasive procedure, to detect polyps and screen for colon cancer.

Once a diagnosis is made, new drugs can relieve the inflammation and help the disease go into remission. Corticosteroids are used if symptoms continue, but only on a short term basis. The side effects related to long-term use of steroid medications were not as well known during my sister's treatment phase. Her physician's probably kept her on the medications for longer than they should have, since she experienced the swelling and roundness of her face, gained weight, had mood swings and problems with her blood sugar and blood pressure. Better immuno-suppressive drugs, with fewer side effects, are also available today. And, there are still more options.

Diet and nutrition play important roles in inflammatory bowel diseases. Probiotics, a type of nutritional supplement, have been used to relieve diarrhea and help balance the levels of natural bacteria that live in the intestines. Diets often need to be planned on an individual basis, since certain foods cause flare-ups in some people, but not others. If you suffer from Crohn's or colitis, consulting a food allergist and then a nutritionist can help.

Keeping a food diary is also a good idea. You may find that simple foods like corn, because the hulls are not digestible, are a problem for you. Some of the most common problem foods are dairy products. Many people with inflammatory bowel diseases are lactose-intolerant. I suspect that my sister was lactose intolerant, but diet was not considered a major factor in the disease at that time. Today, there is a researcher at Oxford University who believes that Crohn's is caused by a bacteria found in cow's milk. We grew up on a farm and fresh milk was a part of every meal.

Other problem foods were mainstays of our diet. Beans, raw vegetables and fruits are considered healthy foods, but not everyone can tolerate them easily. They produce gas, which can increase pain and lead to flare-ups in both Crohn's and ulcerative colitis.

Focusing on diet and good nutrition can reduce your symptoms and prevent additional problems, such as fatigue and depression. Most doctors recommend a daily multi-vitamin and mineral supplement to replace those the nutrients lost during bouts of diarrhea. Also, there are herbs and botanicals that naturally reduce inflammation, but choose carefully and only try one at a time. That way, if you have a negative reaction, you will know which product caused the problem.

Finally, I believe that support groups are very important. My sister was isolated from friends her own age for most of the week. There was no one who knew what she was going through. Isolation and feeling alone can lead to depression. About 500,000 people suffer from Crohn's and another 500,000 suffer from ulcerative colitis. Most are diagnosed when they are teenagers, a time when friends and relationships are particularly important. Crohn's & me (http://www.crohnsandme.com/) is a site specifically geared towards young adults with the condition. The Crohn's & Colitis foundation of America (www.ccfa.org) offers information, support, advice, activities and a number of other services for all age groups. Because of the internet, there is no reason that anyone should suffer alone.