IBD Kids: Questions and Answers

If you read my previous post, You, Me and IBD, you’ll know that I’m passionate about sharing information about Crohn’s disease or ulcerative colitis, two forms of inflammatory bowel disease (IBD). I believe awareness is key – and with 233,000 Canadians living with IBD, and 10,200 new cases are diagnosed every year, it’s crucial to fight the stigma associated with this disease.
Recently, I had a chance to moderate the #IBDKids Twitter Chat, which was supported by AbbVie, and co-hosted by The IBD Foundation and Dr. Eric Benchimol, Pediatric Gastroenterologist at Children’s Hospital of Eastern Ontario (CHEO), based in Ottawa, Ontario. Dr. Benchimol shared information about IBD and discussed coping techniques, provided up-to-date information about the disease and was even able to directly answer participant questions about diet, what to expect and where to turn for more info. (Always consult your doctor for treatment options.) 

Did you miss our chat? Here’s some info for you in a nutshell –
After the Twitter Chat, I asked Dr. Benchimol some questions that I know may be on the minds of my readers – and he was kind enough to take the time to respond! Here’s our Q&A below.

1. Shortly after their child receives an IBD diagnosis, parents often don’t know where to turn for trusted information. What are some of your preferred resources for parents of IBD kids?

There is a lot of misinformation about IBD on the internet.  We recommend using trusted sites to get information. Here is the site we suggest to parents: http://www.cheo.on.ca/en/links

2. It can be hard to wrap your head around the term “autoimmune disease”. How does the immune system play a role in Crohn’s and Ulcerative Colitis?

Crohn’s and ulcerative colitis are not technically “autoimmune” conditions, because patients don’t develop antibodies that damage their own body (auto-antibodies). Instead, they are more like “hyper-immune” conditions, in which the body is reacting to external factors in order to fight off what it perceives as infection. This reaction is inflammation. However, the external factors aren’t the problem (or have disappeared), but the body keeps reacting. That’s when the inflammation causes damage. Inflammation is a normal part of the immune system, but the inflammation is out of control in IBD.

3. What are some of the lifestyles adjustments or changes that can be expected for kids diagnosed with IBD?

At the beginning of the illness, children have low energy and appetite, and must adjust while they are slowly recovering. This might mean missing school, and initially refraining from exercise. It may also need a special diet (even exclusive formula instead of solid food) or dietary supplements. After the initial treatment phase, and when the disease is in remission, children should be able to live a normal life. However, we always recommend a healthy diet and exercise to optimize health and hopefully prevent flares.
4. Although diet and nutrition impacts everyone in a different way, are there certain foods that most children with IBD should typically avoid?

Not really. We recommend a good, healthy diet for children with IBD.  There has been no special diet that has been shown by scientific research to improve the course of IBD. The exception is the “exclusive enteral nutrition” diet. This is when doctors provide formula or tube feeds, and this is the only thing that patients can eat for 6-12 weeks. This has been shown to change the microbiome (bacterial composition of the intestines) and induce remission. However once in remission, we recommend eating a healthy diet. Different foods might bother patients and cause abdominal pain or gastrointestinal symptoms, so we recommend avoiding foods that bother the stomach of children with IBD.

What is very important is that teens and adults with IBD avoid smoking. This is probably the worst thing you can do in Crohn’s disease. Something about the tobacco or nicotine causes worsening Crohn’s and results in more flare-ups and greater need for surgery to remove pieces of bowel. We may also recommend alcohol avoidance with certain medications. We don’t know the impact of marijuana on Crohn’s and colitis, and more scientific research is needed to investigate this. Certainly cannabis is associated with poor brain development in children and teens, so we would always recommend against use of marijuana (medical or recreational) in those age groups.

5. Is children’s growth affected by the prolonged use of steroids?

Yes, growth and bone density are most likely affected when steroids are used for long periods of time. Therefore, we do our best to avoid repeated or prolonged courses of systemic steroids like prednisone. However, we also know that growth and bone health can be impaired by having active Crohn’s disease. Some newer studies showed that a single course of steroids has less effect on growth than having active Crohn’s disease, because the inflammation impairs hormones that promote growth. That being said, if the IBD keeps flaring when we try to wean off steroids, or if a child requires repeated courses of steroids, we will use the biologic medications to induce and maintain remission instead. Those medicines work very well, and are associated with catch-up growth in children who are growth impaired.

6. Once diagnosed with IBD, what sort of follow-up care can a parent expect for their child? For example, how often would they see a gastroenterologist or require a colonoscopy or other tests?

IBD is a chronic condition, meaning that there is no cure. In addition, there can be complications of the disease and the treatments. For these reasons, pediatric gastroenterologists who have expertise in IBD should be following children with IBD until they reach adulthood and can be transferred to an adult gastroenterologist (around 17-18 years old). We usually see patients frequently at the beginning, and then every 3-6 months once the disease is under control. A colonoscopy is needed for diagnosis, and then we tend to repeat this 6-18 months after treatment is started or changed in order to confirm that the intestines have healed. There have been studies demonstrating that if patients’ bowels heal (no ulcers seen on the inside), they have a better long-term course, including less risk of flaring or need for surgery. If the repeat scope is normal, we only do future scopes if there is a change in the disease activity.

In addition, many specialist treatment centres (like the CHEO IBD Centre) have a multi-disciplinary team caring for children with IBD. This could include specialist nurses, dietitians, social workers, psychologists, and bone health doctors. Children with IBD might see any of these care providers, depending on their needs.
I hope you found this information helpful! If your child, or a child you know, has IBD, please share this post to promote education and understanding. For more information on IBD for children and adults, please visit The IBD Foundation or the CHEO IBD Centre.

This post is sponsored by AbbVie. The opinions on this blog, as always, are my own.