What does a diagnosis of IBD mean?

It’s a scary illness for a kid. Basically, there are two major types of IBD: one is called Crohn’s disease and the other is called ulcerative colitis, and they present in very different ways.

Ulcerative colitis is inflammation limited to the large intestine, and it almost always presents with bloody diarrhea. It is fairly easy to figure it out because bloody diarrhea is a pretty dramatic symptom, so these folks go to their doctors, and it’s picked up pretty quickly. There the goal is obviously to stop the bleeding and make the bowel movements more normal, and ideally we’d like to do it without too many medications.

Crohn’s is a little more challenging because Crohn’s can involve many different areas of the intestine. There are probably several different kinds of Crohn’s disease, but the most common one that we see is limited to the last part of the small intestine and the first part of the large intestine, and these patients often get missed for six months, a year or sometimes even longer; they’ve been sick for a long time. The symptoms are subtler: they could be weight loss, not growing, unexplained fevers, or sometimes it can be bloody diarrhea.

The first thing that we tell families once we’ve made the diagnosis is what disease they have, and the next thing I like to tell them is that these diseases are chronic serious illnesses, but almost all of the kids that I have taken care of throughout the years have gotten better, one way or another. They grow up, have children, and have grandchildren. They go on to do something productive. That’s really the first thing that I talk about. The next thing that I try to talk about is getting them to understand that the fact that this is a chronic illness doesn’t mean that they’re going to be sick every day. I usually use the analogy of asthma. You can have asthma, and if you have asthma you have it for your whole life, but that doesn’t mean that you’re wheezing every day.

The same is true with this bowel problem: you’ll have flare ups where you’re having bloody diarrhea, and then periods of remission where you’ll feel fine. And that’s my job: to make sure that you’re feeling fine as long as possible. No one knows the precise cause of either Crohn’s or ulcerative colitis. We believe that it’s genetic. We know that the immune system has something to do with it, and like other illnesses, like arthritis, we know that it’s cells turning on the body. That’s important to understand because most of the medications we use are immunosuppressants.

We also talk to families a little bit about stress. This is the stress primarily of having a chronic illness, and I emphasize that the illness is not caused by stress, which is another assumption that people make. This is not a bowel problem that was brought on by stress, but stress can be an amplifier.

Athos Bousvaros, MD, Associate Director, IBD Program


Inflammatory Bowel Disease (IBD) and Irritable Bowel Syndrome (IBS)

The distinction between IBS and IBD is not a difficult one. The problem is that IBS is very prevalent in children who also have IBD, and the distinction of what symptoms are related to IBD and what symptoms are related to IBS is difficult. And if you don’t think about that, people will go through invasive procedures, not realizing that a lot of their symptoms are due to IBS. I think how much IBS is contributing depends a lot on the person. It’s not easy to tell from the symptoms. And IBS is not a diagnosis of exclusion it has to be a positive diagnosis. I don’t know that any studies have shown that the prevalence of IBS is higher in the IBD population, but IBS is so common that many kids with IBD have it. IBS is related to many things. One of them is how the nerves are reacting and how your arousal state is. So if you have Crohn’s and you have some nerve damage, and then you’re anxious, then you have the right predisposition for IBS on top of your IBD, but I don’t know if it’s more prevalent.

Samuel Nurko, MD, Physician


Common concerns of parents and kids

I think that parents can worry that they’re missing something, because IBD symptoms are sometimes subtle. The child might have a normal childhood viral infection, but parents worry that they’re missing some type of manifestation of the Inflammatory Bowel Disease. I think that is really hard. All kids get belly pains, and if you have an eight year old who complains of belly pains, the first day, the parents worry, “Is this just a belly ache or is it his Crohn’s disease flaring up?” I think that is what is hardest for parents: they feel the responsibility of being first on line in assessing their child’s health. I think that for the kids, the toughest thing is that nobody likes to take medicine, and nobody likes to be sick. Taking medications every single day is really hard.

The other thing is talking about bowel movements it’s embarrassing and it’s something that is not normally talked about in school or at home. Sometimes there is no private toilet, and you have the anxiety of, “Will there be a toilet available?” Then, when they come in for clinic, we ask tons of questions about how many “poops” a day and what it looked like. That can be hard and totally embarrassing. Also, some kids have trouble with growth and are smaller, but usually when we get their disease under control, their growth picks up; one of our goals is to have them grow well. But prior to diagnosis, they can be smaller and have body image issues.

Mary Alice Tully, RN, PNP, Nurse Practicioner