Opening Up About a Discouraging Condition

How does a patient with bowel disease handle intimacy? The symptoms can be embarrassing and devastating: Chronic diarrhea and bleeding from the anus, abnormal tissue growths between organs and other body structures, painful abscesses that can burst and drain.  As if to make matters worse, inflammatory bowel disease, or IBD, typically strikes before the age of 30—prime child-bearing years. The ensuing inflammation of the lower intestines combines with the growth of ulcers to spawn a host of challenges to the quality of any couple’s intimacy.  Expert Mary Harris uses candor and data to help sufferers work through the issues. Can living with IBD discourage the idea of having a family? Absolutely. You need self-esteem to have an intimate relationship.  Patients may be afraid they’ll be incontinent during intercourse.

They can have body-image problems due to the abnormal growths, perineal disease, difficult surgery, excess body hair and medication side effects.  Women, especially if they have the abnormal tissue growths, may find intercourse painful.   A small percentage of men experience erectile dysfunction after surgery.  Part of what I do is bring up these issues to help patients deal with them.

Do genetic factors make patients skittish about conceiving?

One of the most common worries is that they’ll pass on their IBD, and some factors do increase that possibility—being Ashkenazi Jewish or having one particular condition within the IBD group:  Crohn’s disease.  If both parents have IBD, there’s a 35 percent risk their child will too.

What about fertility?

When a woman’s disease is in remission, conception shouldn’t be a problem.  Active Crohn’s, however, could affect her ability to conceive, and an anal pouch could cause an 80 percent drop in fertility.  Certain IBD drugs can also interfere with the formation of sperm or impair the motility of sperm cells.

Should women worry that their medication could affect a pregnancy and breast-feeding?

That shouldn’t be a deal breaker. The key is education and planning. I’ve prepared a packet for my patients and their obstetricians on all the IBD medications that are safe in pregnancy and breast-feeding.  Patients should be in remission at least three months before conception. I see mine during each trimester and six to eight weeks postpartum.

So, for you, reassuring your patients is everything?

Of course. This is about quality of life.  Patients are reinvigorated and rejuvenated knowing they can lead a normal or near-normal reproductive life.

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The Johns Hopkins Division of Gastroenterology & Hepatology