My Brother's Diagnosis with Crohn's and Information About This Disease

My brother was diagnosed with Crohn's Disease the middle of November and spent several days in the hospital on IV antibiotic therapy and anti-inflammation medications. We have since learned that Irritable Bowel Diseases (IBD) commonly affect members of the same family. In our family, our late father had colitis. According to the Crohn's and Colitis Foundation of America, if you have a relative who has one of these diseases, you are 10 times more likely to get this disease. I was shocked to learn that my chance of getting this disease is 30 times more likely, since it is my sibling who has the disease. Persons with IBD Diseases are also more at risk for Colon Cancer and its related syndromes and I have already experienced pre-cancerous colon polyps. This was found on my first colonoscopy and I will not be missing the follow-up colonoscopy, which is coming up the first of 2008. Persons who have pre-cancerous polyps are told to repeat the test in three years instead of the normal five-year interval.

Here is some of the information I have learned about the disease and an interview with my brother, who also has Diabetes and along with doctors will have to manage the effects of both diseases, as well as medication interactions.

What is Crohn's Disease
Crohn's Disease is one of the two primary diseases that are collectively known as Inflammatory Bowel Disease (IBD). Crohn's Disease is named after Dr. Burrill B. Crohn, who published his finding about the disease in 1932. It is classified as a chronic disease, meaning that there is no cure and its effects and symptoms are recurrent. The other main disease in the IBD category is ulcerative colitis. They are both autoimmune diseases, which means that the body improperly responds and attacks normal microbes and bacteria in the body as if they were substances that were not supposed to be there. Once this inflammatory process starts, the body does not know how to turn off the process. The resulting inflammation causes pain, ulcerations and injury to the involved body tissue. In ulcerative colitis, the body tissue that suffers injury is generally the colon. In Crohn's Disease, the body tissues involved can be any part of the Gastrointestinal Tract, from the mouth to the anus.

Cause of Crohn's Disease
The cause of Crohn's and other IBDs is unknown, however, it is thought to be a combination of inherited genes and how the immune system responds to outside stimuli, such as viruses or bacterium. For this reason, the treatment options address regulation of the person's immune system. There is no known cure. There are approximately one million people in America who have IBD with 500,000 of those having Crohn's Disease.

Although, there is presently no cure for Crohn's, recent research has shown that one gene, known as the NOD2/CARD15 gene is a mutation that shows up twice as often in Crohn's patients than others. Since this gene limits the ability of the body to recognize bacteria as harmful, it may prove to be important. It would follow that it would also impact the body's ability to tell the difference between harmful and non-harmful bacterium. As previously stated, this is one of the hallmarks of IBD; the immune system attacks tissue cells and bacterium that are not harmful.

Symptoms and Diagnosis of Crohn's Disease
The symptoms of Crohn's Disease are chronic diarrhea, stomach and intestinal cramps/pain, fever, and sometimes rectal bleeding. In Crohn's Disease, it is common for patients to experience lack of appetite and poor nutrition because the small colon is usually involved and that is where most of the digestion processes of the body take place. The disease can also involve joints (arthritis), eyes, skin and the liver.

Diagnosis is made from the list of patient's complaints and confirmed by laboratory tests and exploratory examinations, such as the colonoscopy and upper GI tract tests.

Medications and Therapy for Crohn's Disease
Medications include antibiotics, anti-inflammatories, immune modifiers and biologic agents. Medications that are sometimes prescribed include ones that control diarrhea and nutritional supplements. It is very important that Crohn's patients take their medication even when they are not experiencing a flare-up. Crohn's patients can recover from crisis events more easily when they have been diligent with their therapy program. Over the counter medications and some antibiotics can cause problems, so they should only be taken under your doctor's direction. Surgery to repair tears and remove obstructions is also a possibility and two-thirds to three quarters of Crohn's patients require surgery at some point.

There is no specific diet and patients are encouraged to work with their doctor to determine which foods cause the most problems for them and should be avoided. During a flare, soft, bland foods are usually better tolerated and in general low fiber foods seem to be the best choice even when the disease is under control. Emotional stress, although not the cause of the disease, has a big impact on the course of the disease. Smoking is very discouraged, as it can make the disease more active and interfere with recovery from a flare-up.

Tips for Managing Crohn's Disease
One of the tips that make life with Crohn's more tolerable is to always carry a change of clothes, even if your outing is just across town. Another must is to always have your medication with you. Eating out can present a dilemma and it is usually a good idea to frequent the places that serve a varied menu, so that low fiber and other foods that are less problematic to you can be chosen. Planning your route in advance and knowing exactly where the bathrooms are is also helpful.

Travelers outside the U.S. are advised to make sure to get all vaccinations and visit with your doctor to discuss medication required for the trip. If you are currently on steroids, some vaccinations need to be avoided. It is doubly important that Crohn's patients drink (and brush their teeth with) bottled water and not consume any water while swimming or showering if they are in a country where the water is questionable. Raw vegetables, uncooked foods and ice cream should be avoided in other countries. Fruits should be peeled before eating. Travelers should make sure that they have health insurance that will cover an emergency.

Interview with my brother, Gene H:

Question: Can you describe the pain in the days before you were diagnosed with Crohn's Disease?

I have had diarrhea off and on for years, but it became more pronounced and I had a severe, unrelenting pain in my lower stomach for about a week before I finally went to the emergency room and was admitted to the hospital.

Question: Have you been diagnosed or had other physical conditions that you now realize were related to Crohn's Disease?

As I said before, I have had diarrhea and problems with gas and bloating for years. I have also had various skin problems and an inflammatory eye condition that I now know could be related to the Crohn's Disease.

Question: How did you manage Thanksgiving, your first holiday only days after your Crohn's Disease diagnosis?

I had been doing relatively well in the week since I got out of the hospital; however, I am now having problems both with the steroid that I am taking and with my sugar level. I am also a diabetic and I have had to be in contact with the doctor about my diabetes medication and how to get my sugar level regulated. Although, I tried and felt I succeeded in eating sensibly on Thanksgiving, it was a real challenge. The steroid that I am taking for the Crohn's Disease really is causing mood swings and that combined with my other health issues is difficult. Hopefully, I can get past these issues and go back to work and get back to a somewhat normal pattern of life.

In conclusion, I would refer the reader back to my title, The Restroom Access Law, Old Navy, and a Girl Named Ally. If you have an Inflammatory Bowel Disease and join the Crohn's and Colitis Foundation of America, you will be sent a "Can't Wait" card. It will state that you have a medical condition that requires you to use the bathroom urgently. Carrying the card with you at all times should re-assure you that establishments will allow you to use their restroom, even if there is no "public" restroom. But will they? Ally Bain is a teenager with Crohn's Disease. In this short video, Ally tells about a trip to the Old Navy store and her experience with manager there. Ally Bain is now working with lawmakers to get laws passed in all states so that people with these diseases will not go through what she experienced. At the bottom of the video page, you can see if your state has passed this law. If it has not, you can access this site and take a moment to send a letter and help get this law passed in your state.

Resources used:
Crohn's and Colitis Foundation of America
ccfa.org

crohnsandme.com