Second Guessing Crohn's Disease Activity is Crucial When You're Pregnant

My daughter was born scarcely two months before I received a diagnosis of inflammatory bowel disease (IBD). I had already undergone dozens of unremarkable barium studies and trips to the emergency room (ER) for what I now know were partial intestinal obstructions.

During the pregnancy, I made several ER visits and was always released the next day without a name for what had put me there. Although I got an iron shot week after week, my folic acid level was at rock bottom, which is very typical of anyone with active Crohn's disease. When my episiotomy did not heal after being redone twice, the local doctor got suspicious and sent me to a gastroenterologist in Tucson, 75 miles away.

My daughter came into this world when I was 31, about 18 months after her father and I married. An only child, I had already decided this would be a fate worse than death for any of my offspring. I was, however, somewhat sensible about physical limitations and at least slightly more than clueless about how IBD would change my life. As a result, I set 35 as a cutoff as far as having a second child.

And this is where things began to go wrong. The first delivery took more than 37 hours of labor. As a result, the doctor advised me - still prior to my Crohn's diagnosis - not to get pregnant again for at least a year. The gastroenterologist said the disease probably wouldn't kill me but would change my life forever. He added that I had an advanced case and probably had been coping with it more than 10 years.

IBD patients can learn a lot about pregnancy and their illnesses by consulting the web site for the Crohn's Colitis Foundation of America (CCFA). I had been told by physicians that Crohn's typically flares right after a delivery due to female hormonal changes, then becomes quiescent. I waited and waited for my disease to go into remission. It didn't. Eventually, we decided to take advantage of a period when it was at a low point. In preparation for a second pregnancy, I went off my medications for a month. I was successful the first time I tried.

But with each day I rejoiced at the prospect of my second child, I got sicker and sicker. The baby did not thrive. Eventually, ultrasound showed it had died. While waiting to undergo a D&C, I actually experienced a miscarriage and had to have the surgery in the middle of the night.

I would like to tell you that I recovered, had my first small-bowel resection and went on to have my second child. That's what the fairy tale says should happen. But this is not what occurred.

I had the surgery at 35 in part to try to get one more opportunity to become healthy enough for a successful pregnancy. However, soon after I got out of the hospital, my former husband and I separated and subsequently divorced. I had to go back to work full time. There was never a second baby in my arms.

Beyond the poignancy of losing a child even before birth, the challenge that I, along with any prospective parents with Crohn's disease, face was finding a time - the right time - when the disease was quiet enough to let my body successfully nurture a child. Today, IBD patients are advised of the dangers of trying to get pregnant when the disease is not in remission.

Some Crohn's patients whose disease is active most of the time are never able to carry a child to term or to even become pregnant. In this instance, the special challenge they and their spouses face is learning to enjoy what life has to offer in the present moment without dwelling on what the disease has taken away from them.