OC SPOTLIGHT is a regular column on medical professionals in the ostomy community.
For women with inflammatory bowel disease (IBD) who wish to conceive, the process can often be a daunting one and finding a physician who has firsthand experience with the illness is nearly impossible. Unless you’re lucky enough to be a patient of Dr. Vivian Huang, a gastroenterologist at The Preconception and Pregnancy in IBD clinic in Toronto. Not only does she specialize in pre-pregnancy health and management for patients with IBD, but she herself was diagnosed with ulcerative colitis and lives with an ileostomy.
Dr. Huang can relate to others who have daily digestive issues and are too embarrassed to talk about it. She was officially diagnosed in 1996 during her first year of college but had symptoms of IBD for six years prior. “Back then I didn't bring it up with my family because it’s not something we talked about. I hid the fact I was sick and had incontinence issues,” she said. “I didn’t make it to the bathroom in time and had an accident at school. I realized that day how very ill I was and desperately needed treatment.” Soon after, Dr. Huang was diagnosed with ulcerative colitis.
Even though she was finally receiving care, the demands of her degree seemed to exacerbate symptoms. Reflecting on her university days she remembers the disease becoming quite active during medical school. She said, “I got really ill during my clerkship but adjusted my schedule around walking to school, lunch rounds, interning on the wards, walking home, etc. I tried attending social events but often wouldn’t stay long when I had flares.”
Dr. Huang’s experience with ulcerative colitis was so profound that it influenced her choice of specialty. “I confirmed late in my second year of training that I wanted to do a GI fellowship. I had so many questions and knew I could do more to help other people with IBD.” After finishing medical school the disease progressed and her condition continued to deteriorate. She was treated in each of the biologic drug categories, which seemed to work temporarily and other times not at all. A colonoscopy in November 2017 showed severe active disease and in January 2018 Dr. Huang had to have surgery to remove her colon. She said, “I think I blocked out any choice for surgery. The topic of an ostomy was put on the table a few times during my years with IBD. I got away from it each time by trying the next new drug. I even thought of going back on Prednisone, but when there’s no more ‘next drug’ I had to accept the fact that surgical treatment was the only option left.”
Her situation was semi-urgent with little time to plan. She was becoming dehydrated from diarrhea and the inability to tolerate food had her losing weight quickly. During the next two weeks, Dr. Huang was able to choose the right surgeon and use preoperative nutrition and antibiotics to prepare. The surgery was successful but even then she didn’t slow down. “I was trying to recover post-op but because I had left my clinic emergently, I ended up working from home two weeks post-op. In retrospect, I think I tried to return to work too early. But what can you do when you have several hundred patients who need you?”
And those patients are lucky to have her. A doctor who truly understands what you’re going through is comforting. At her Toronto clinic, Dr. Huang sees women with IBD and ostomies to address their concerns with infertility, conception, and pregnancy. Although many of these concerns – such as inheritance of IBD, the danger of medication during pregnancy, and birth complications – are unfounded, Dr. Huang notes that pregnancy with IBD can be more complicated. For example, though ostomy surgery itself does not affect fertility or pregnancy, women who have had extensive abdominal surgery may have significant scar tissue and adhesions. “Women with an ostomy may have changes in the peristomal area (e.g. blockage if the intestines are compressed as the baby grows, leakage if there are skin changes or stretching, and the appliance may not stick as well) or partial obstruction related to adhesions that may have formed during abdominal surgery,” she said in a recent interview with Shawtel Bethea.
For women who have IBD and who are thinking about trying to conceive, Dr. Huang recommends discussing pregnancy with your healthcare team beforehand. Most pregnancies go smoothly, but Dr. Huang notes that women with IBD will be placed in a high-risk category as a precaution. And although they should take the same precautions as “healthy” women in terms of alcohol use, supplements, etc., women with IBD should also see their GI more frequently, pay close attention to their nutrition, weight, and disease state, and seek treatment immediately if they feel their condition is worsening.
Learn more about managing IBD during pregnancy at pregnancy.ibdclinic.ca.