April is Irritable Bowel Syndrome Awareness Month.
Shawn was 10. On a family vacation in Mexico, he accidentally swallowed contaminated water while swimming in a chlorinated pool and became critically ill. He recovered, but soon developed IBS. Now an adult IBS advocate for many years, he says, “In those days, no one had a clue about IBS… Since the good doctors couldn't figure it out, I was sent for therapy and put on librium and told it was psychosomatic… I struggled for years through school… trying to explain to friends why I was in pain a lot and could not do things… My parents were very supportive and my mom is a nurse… However, … she could not help and I could see that in her eyes while I laid there in complete agony…” After decades of searching for answers, Shawn was helped greatly by a gut-directed hypnotherapy home course, but IBS still remains. (excerpted with Shawn’s permission)
What IBS is
* IBS is the most common functional gastrointestinal disorder, affecting 10-20% of the population. That’s more common than diabetes. “Functional” means it affects the function of the colon without showing obvious structural, organic or metabolic problems. IBS is more common in women than men, but affects boys and girls equally.
*The hallmark symptoms of IBS are chronic or recurring abdominal pain or discomfort and changes in frequency and/or appearance of stools. Usually the pain or discomfort improves after a bowel movement. There may be other GI or non-GI symptoms that vary from person to person, but fever, bleeding or weight loss unrelated to eating less aren’t IBS symptoms.
*The causes of IBS are complex and incompletely understood, but research has established abnormalities in how the brain and digestive tract communicate, how the brain processes pain and how the colon moves. Many other factors are being actively studied. Some children have genetic relatives with IBS or a related chronic condition like fibromyalgia or chronic fatigue syndrome. Post-infectious IBS after illness or exposure to contaminated food or water is also a high risk, but many children and adults develop IBS with no known risk factors.
*IBS is not the same thing as inflammatory bowel disease, food intolerances or allergies. It’s not life threatening and doesn’t increase the risk of cancer. It’s been found all over the world in every culture and ethnic group for generations and isn’t a modern fad or catchall label. While diet and stress may affect symptoms to varying extents for each individual, they don’t cause IBS.
If you think your child may have IBS:
*Please see a doctor. Many other conditions have some similar symptoms.
*Depending on your child’s symptoms, any family history of Crohn’s, colitis, celiac disease, etc, the doctor may order tests to rule out other conditions. However, there’s currently no test for IBS. The international diagnostic standard, called the Rome III criteria, is based on symptoms and is considered highly accurate if used correctly. IBS experts now discourage a lot of testing in most cases because it can be costly, time consuming, invasive, stressful and with IBS, all tests will be normal. The overwhelming odds are that a Rome III diagnosis is correct. If your doctor doesn’t know what Rome III is, find another doctor. A pediatric functional GI specialist is ideal, but they’re rare. A knowledgeable pediatrician or general gastroenterologist may be able to manage your child’s needs well. Studies show that people with IBS tend to do better with health providers they trust to work with them and take their concerns seriously.
If your child has IBS
*Each person with IBS is different in symptoms, severity level and experiences. There are various conventional and scientifically-accepted complementary interventions that may help, such as diet, exercise, stress management, medication, gut-directed hypnotherapy, probiotics, and psychotherapy, but what helps one child or adult with IBS may not help another. No doctor, adult with IBS or fellow parent can predict specifically what will help your child. Be prepared for trial and error. For some, this will be a short process, for others, a very long one.
*There’s currently no cure for IBS, despite hype from various sources. Some children and adults, fortunately, have mild or sporadic IBS symptoms. Most people, even with moderate or severe IBS, eventually find some things that decrease symptoms somewhat, but this may take a while. Each year, a small percentage of people becomes symptom-free, but again, nobody can predict exactly whom or how. Symptoms often return eventually, and most people with IBS are in it for the long haul. Educate yourself from reputable sources and choose wisely. There are many questionable entities simply out to separate families from their money, and many myths and misconceptions too.
*IBS is a hidden illness/disability. If you’re in the U.S. and your child is in school, consider a 504 plan for accommodations like unrestricted bathroom access, extended time or modified absence policies if needed. Other countries may have similar provisions. Support and advocate for your child. The pain, fatigue and other symptoms are real and not in his/her head. For some people with IBS, these can be intense and unrelenting or change from hour to hour or day to day. Help relatives, friends and teachers understand that your child isn’t faking, lazy or being picky about food. Encourage your child to do as much as he/she is able with your family and his/her peers. Many people with IBS isolate themselves because of feeling ill and fearing accidents or others’ reactions. Some schools may suggest homeschooling rather than accommodate such an unpredictable condition. However, research evidence shows that confronting fears often helps decrease stress that may trigger symptoms in a vicious cycle. Being matter of fact instead of viewing IBS as a shameful secret will prepare your child to deal more easily and independently with these challenges in the future.
*Moderate or severe IBS can affect the entire family. Seek help for your child, yourself or other family members if needed. Unfortunately, local support groups are rare, but there are reputable resources that may be able to help. If not, be proactive and consider starting a group. While research and social supports for IBS have a long way to go, there’s a pending bill in Congress for functional GI disorders and the beginnings of grassroots advocacy that’s historically been scant in the IBS community. We welcome you to join us and accelerate better circumstances for all children and adults with IBS.
Nina and Shawn, both adults with IBS, run IBS Impact (http://www.ibsimpact.com/), a grassroots advocacy and awareness-focused website, blog and discussion group with original content and links to reputable resources in 6 countries.