IBD Questions You're Afraid to Ask Your Gastroenterologist

Healthcare providers are busy, and most patients only get 15 minutes or so to meet with them for answers to questions about inflammatory bowel disease (IBD). Even if you go into your appointment prepared, you might not be able to work through all your issues in one session, and you may even find that you're unable to put some of your concerns into words—or you may feel as though there are questions that you're not comfortable asking. Here are answers to questions about Crohn's disease and ulcerative colitis that you may be embarrassed to ask your healthcare provider.


What's Your Prognosis?

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"Prognosis" is a term that refers to the probable course of an illness. You might ask your healthcare provider if your IBD will ever be cured, or if you'll experience remission. For people with Crohn's disease, complete remission is less likely, and a majority of patients will have surgery within 10 years of diagnosis. The good news is that Crohn's disease does not shorten the lifespan of those that have the disease.

The prognosis for ulcerative colitis is similar. Less than half of all who have ulcerative colitis will require surgery to manage their symptoms. There is a risk of colon cancer, which increases after 8 to 10 years of active disease, but the vast majority of people with ulcerative colitis won't develop cancer. Many people with ulcerative colitis achieve remission at some point.


Is IBD Considered a Fatal Disease?

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You might be wondering if IBD is a disease that might ultimately lead to your death. While any disease can be fatal (even the seasonal flu can kill as many as 49,000 people in one year), Crohn's disease and ulcerative colitis are not themselves considered fatal conditions. IBD does come with the possibility of many different types of complications, some of which can be quite serious, or even fatal. However, IBD itself has not been shown to decrease a person's lifespan. The key to managing these diseases and their complications is working with an experienced healthcare team and sticking to a treatment plan.


Will You Experience Incontinence?

Empty Toilet Paper Rolls

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People with IBD can experience extreme urgency to move their bowels. Some people may experience accidents (incontinence or fecal soiling), which can lead to a host of problems, including being unable to travel very far from a restroom, missing out on social events, and even having trouble holding down a job. Incontinence associated with IBD could be caused by severe diarrhea or a weakening of the muscles of the anus after surgery, or IBD-related complications. A discussion about incontinence is not an easy one to have, but it's worth talking about with your healthcare provider. Be prepared to discuss when and how often fecal soiling happens (this even includes soiling/leaking in underwear). There are many effective treatments for incontinence, and receiving treatment could help you get back to your daily activities without fear of bathroom accidents.


Will You Need an Ostomy?

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An ostomy is a type of surgery done on the intestines that results in a stoma and the need to wear an external appliance to catch stool. A small part of the intestine, called a stoma, is brought through the abdominal wall. An appliance, which some people call a bag, is also worn over the stoma to collect stool. The appliance is emptied regularly throughout the day and changed every few days. Some people who have IBD do have ostomy surgery—either colostomy or ileostomy surgery. Ostomy surgery is only done after all other medical therapies have failed, or because of an emergency such as a perforation. Whether or not you'll need ostomy surgery is dependent on a number of variables. It's probably impossible for your healthcare providers to tell you for certain if you will need ostomy surgery one day, but even if you do, ostomy surgery often provides a better quality of life for people with IBD and—in some cases—saves lives.


Will You Get Colon Cancer?

Colon cancer is a common form of cancer, especially in the Western world. There are several risk factors for colon cancer, including having a history of IBD. While people who have IBD are at an increased risk, the vast majority (90%) will never develop cancer. People with ulcerative colitis carry a higher risk of developing colon cancer than those who have Crohn's disease. In particular, the risk of developing colon cancer in people with IBD increases approximately .5 to 1% every year after 8 to 10 years of having the disease. The risk is lowest for those whose disease is located only in the rectum; IBD throughout the colon carries a higher risk. Regular screening for colon cancer is an important part of the medical care that people with IBD should receive. If you have concerns about colon cancer, discuss your level of risk with your gastroenterologist, and together you can determine how often you should receive screening.


Will Your Children Develop IBD?

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Almost anyone who has a chronic condition wonders if she will pass on her disease to her children. There is a genetic component to IBD, and the genes that may contribute to the development of IBD are still being discovered. But the relationship is not as simple as IBD's being passed from parent to child: while IBD does run in families, and first-degree relatives of those with IBD are at increased risk, most people with IBD do not have a relative with the disease. Your gastroenterologist and a genetic counselor can help you determine the risk factors for passing IBD on to your children.

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  • Crohn's and Colitis Foundation of America. "Surgery for Crohn's Disease & Ulcerative Colitis." CCFA.org. 31 Aug 2010.

  • National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). "Fecal Incontinence." National Digestive Diseases Information Clearinghouse (NDDIC). Nov 2013.

  • Centers for Disease Control and Prevention. "Seasonal Influenza (Flu)." CDC.org. 6 Jul 2011. 

By Amber J. Tresca
Amber J. Tresca is a freelance writer and speaker who covers digestive conditions, including IBD. She was diagnosed with ulcerative colitis at age 16.