Inflammatory bowel disease FAQs

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How much will IBD affect me?

William A. Faubion, Jr., M.D., Gastroenterology, Mayo Clinic: I think most simply, it depends on where in the bowel the disease is affecting and how severe your case is. Every practitioner will tell you that in an ideal world, it shouldn't affect your life at all. It's been well studied that actually inflammatory bowel disease does not significantly change the overall lifespan of the patients. But what we really care about is quality of life. I think for the vast majority of patients that we see, the appropriate medical plan can keep patients generally free of symptoms over the order of one to three years. So I think the biggest ways that the disease is going to affect your life is perhaps you may need to watch a bit what you eat. You'll need to keep in touch with your treatment team and you'll need to take medications as they've been prescribed. But if you do those three things, I think that most practitioners would tell you, we'd rather you not be thinking about your inflammatory bowel disease. Let us worry about that.

Why do people get IBD?

Most of us that are involved in the research of this condition would suggest that there's three major causes that we study for this condition. The first would be the environment. Most of us believe that there's some environmental insult that leads to the chronic inflammation in the intestine. That environmental insult may be dietary. It may be a particular bug that lives in the bowel, or may be a function of that bug, which is also a function of the diet. The second most important thing is having the right genes. The genetics of inflammatory bowel disease is complicated and actually quite widespread. So most people have the right genetic makeup for this disease but don't actually develop the disease. And then the third component is these two things impact on the immune system. And the immune system is what is actually causing the chronic inflammation that's present in the intestine that we prescribe medications to treat.

Can IBD affect my lifespan?

The short answer is no, it will not. There's multiple lines of research that when patients with inflammatory bowel disease are controlled against patients their same age, with their same medical problems, without inflammatory bowel disease, achieve roughly the same lifespan.

Does my diet affect IBD?

If one has a narrowing in the small bowel related to Crohn's disease, something called a stricture, diet becomes very important because if certain patients eat foods that have too much roughage or fiber, then those types of foods can cause an impaction or block the narrowing in the small bowel, leading to signs and symptoms of something we call an obstruction: Belly pain, vomiting, loud noises in the bowel. Another way diet can impact the disease is if you have damage of the small bowel, that can impact your ability to do certain types of functions in the small bowel -- like absorbing dairy products, for example.

Is there any cancer risk from having IBD?

The main risk factor for cancer would be colorectal or cancer of the large bowel. And that comes, we believe, from the chronic inflammation of the colon. That's why it's a good idea to maintain close contact with your treatment team. And that's why we recommend routine colonoscopies, passing the scope up into the colon, looking for those early changes associated with cancer.

What's the risk of passing IBD to my children?

That's a very common and valid concern amongst parents that come for evaluation for their inflammatory bowel disease. Generally the risk is slightly higher for Crohn's disease than ulcerative colitis. But that being said, you're still far more likely to be the only member of your family with this condition, than have a familial what we call penetrance.

Are stool transplants real?

The short answer is yes. This science was actually developed for an infection rather than inflammatory bowel disease. The science has been developed over a period of about 15 years. And it really has come to age with an infection called clostridium difficile or C. diff. Stool transplants now are actually a very common tool to treat recurrent or refractory infection with this C. diff species. Because of the excitement in the infectious disease field or the C. diff field, there are numerous trials that are running in inflammatory bowel disease.

How can I be the best partner to my medical team?

So I think just showing up is the first thing that you can do. We always consider this as a partnership between the patient and the provider. There's a lot to consider when we talk about the medications for inflammatory bowel disease. Some of those medications have risk factors. So those discussions are important, can be complex and can be time-consuming. So showing up, being present, participating in those conversations, and being educated yourself. There are a lot of resources out there to investigate what the risks and benefits to a variety of different strategies might be. Communicating well with your team and again, just being there and showing up.

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