I was compensated by Med-IQ through an educational grant from Takeda Pharmaceuticals U.S.A., Inc. to write about the signs and symptoms of inflammatory bowel disease. All my opinions are my own.
According to the National Institute of Diabetes and Digestive and Kidney Diseases cyclical vomiting syndrome, sometimes referred to as CVS, is an increasingly recognized disorder with sudden, repeated attacks of severe nausea, vomiting, and physical exhaustion that occur with no apparent cause.
It is as horrible, scary, and frustrating to endure as it sounds.
And I know this because Dude 2 suffered from it between the ages of 7 and 9.
Two straight years of horrible gastrointestinal (GI) pain and discomfort, multiple visits to specialists and treatment centers, weight loss, exhaustion, confusion, and frustration, only to discover he has this thing that they can’t explain or fix.
He just had to endure.
And we tried everything –we tracked his episodes, tried various medications, changed his eating from vegetarian to gluten free to vegan.
And then one day, we realized it had been months since his last episode, and then a year had passed, and now, it has been nearly 4 years since his last episode.
The first year he was healthy, he gained 20 lbs. Twenty. Whole. Pounds!
He was like a different person—a heavier, healthier, happier, different person.
I think out of everything, his quality of life is what suffered most.
Because GI diseases are so debilitating. They tie you to a bathroom so you rarely want to venture far away, and they deplete your energy making it difficult for you to find any semblance of normalcy in your day-to-day life.
I hadn’t heard of cyclical vomiting syndrome before my son became a victim to it, just like before partnering with Med-IQ I didn’t understand the true nature of inflammatory bowel disease (IBD) and how it could impact young people.
Not to be confused with IBS (irritable bowel syndrome), IBD causes inflammation in the bowels, which leads to swollen intestinal walls that can cause painful and serious digestive problems.
Two of the most common forms of IBD are Crohn’s disease and ulcerative colitis.
Although symptoms of inflammatory bowel disease vary from person to person and also within the same person over time, common symptoms are rectal bleeding, diarrhea that wakes you up in the night, weight loss (defined as 5% of body weight), fever, and inflammation in other parts of the body other than the GI tract, including arthritis, ulcers of the mouth, joint pain, or inflammation of the eye.
And there is also fear and frustration, confusion and sadness, all of the emotions that come with suffering from a disease that is as hard to talk about as it is to treat.
This is can be especially true for teenagers with IBD.
Most individuals with IBD are diagnosed in their 20s or 30s, but it is not uncommon for this illness to affect younger people—in fact, 25% of those with IBD were diagnosed as children or teenagers.
As a parent, facing an illness such as IBD in your child can be scary and overwhelming, but you shouldn’t feel helpless.
That’s what I hated most when we were struggling with our son’s GI issues—the feeling that you can’t do anything, that no one is listening to you, and that all you can do is leave your child’s fate in someone else’s hands as you stand by and watch him suffer.
I will never be that parent again, and you don’t have to be either.
Learn more about IBD in this chat with Dr. Hanauer, Medical Director of The Digestive Health Center at Northwestern University.
Inflammatory Bowel Disease: How to Be a Healthcare Advocate for Your Child
Learn everything there is to know about your child’s illness. It’s the only way you can be an informed advocate for your child and his or her care.
Find a medical practitioner who views you as a partner—together you can work to find the best treatment solution for your child.
Be an accurate, meticulous historian.
Keep a journal, or use an app. GI Buddy is a great option to help you track your child’s symptoms and reactions to treatment so you can provide accurate feedback to his or her medical professional.
Your doctor needs as much information as possible to make informed diagnoses and determine effective treatments.
Talk to your child.
Remember that they are the ones experiencing the symptoms, and part of your job is to give them a voice.
Help your child understand IBD symptoms and help them learn how to express what and how he is feeling. He may not have the words initially and will probably need your guidance to learn how to be specific and informative in a way that can lead to help. There are also lots of resources available out there for teens with IBD. Click here for a guide for teens that walks them through what IBD is and offers ways to manage the illness.
Always make your child feel respected and supported. You want them to feel comfortable coming to you with anything, no matter how embarrassing they might find it, so that you can find a way to get them the care they need.
Don’t be afraid of aggressive treatments.
If you believe aggressive treatments may be effective for your child, don’t be afraid to ask for them. In recent years, IBD treatment has shifted to a top-down approach in which, instead of going with the more-conservative treatment option, doctors are electing to treat symptoms aggressively. This approach helps to reduce surgeries and hospitalizations over time. I have seen similar approaches in the treatment of food allergies and other illnesses.
Be open to trying new treatments—medical science is ever changing, and what worked even 5 years ago may be obsolete today.
That said, do what you believe is right for your child and don’t be afraid to pull the plug on a treatment that is not working or change courses when needed.
Also, take care of you.
Your child needs you to be your best you so that you can support him throughout this ordeal. Get enough food, water, and sleep so that you are able to do that for him.
If you think your child may be suffering from inflammatory bowel disease, please visit your medical professional for further guidance.