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"I was told I could never conceive...this has all been really hard to hear....after explaining my heartbreak and frustration, Dr. Moore told me about her study....I think if my partner and I could get some answers, it would help us understand something that we want so, so badly."
— Chantal Hunter, Patient with Inflammatory Bowel Disease (IBD)

Sarah Moore

MD, FRCSC, MS(c)
St. Michael's Hospital, Mount Sinai Hospital, University of Toronto, Canada

I am a newly trained colorectal surgeon with a clinical interest in the surgical management of inflammatory bowel disease. Throughout my training, I have helped to treat many young women with inflammatory bowel disease (IBD), and the question of fertility has frequently arisen. As a mother myself, I appreciate the stress that accompanies trying to become pregnant and carrying that pregnancy to term. I can only imagine how much more difficult that uncertainty becomes when compounded by struggling with IBD. Decision making around surgical treatment is challenging for IBD patients, and as a physician, providing accurate information to facilitate those decisions can be difficult.  Oftentimes young women who require surgery have to balance that need with family planning. I have had patients tell me they don’t want to let IBD control their lives – part of taking back that control involves giving patients the best options when it comes to timing of surgery to give patients the best shot at starting a family going forward.

Nancy Baxter

MD, FRCSC, FACS, PhD
St. Michael's Hospital, University of Toronto, Canada

I am a colorectal surgeon and researcher at the University of Toronto, Canada. Over the years in my practice, I have treated many young women with IBD. When the question of fertility and the ability to become pregnant with the disease arises, often I’m in a position of counselling patients about how to best time their surgeries to make this a possibility for them. I recall one particular instance when in consultation with a patient discussing this very issue. I distinctly remember not being able to answer her questions or give appropriate guidance, as she understandably spoke to me through tears. I can say that it’s difficult to provide the best advice when the studies in this area are lacking, which is extremely frustrating.  As a surgeon scientist, I have a passion for getting involved with quality research in colorectal surgery and using results from studies like these to change and structure clinical practice.

Zane Cohen

MD, FRCSC
Mount Sinai Hospital, Zane Cohen Centre for Digestive Diseases, University of Toronto, Canada

For over 40 years I have worked as a colorectal surgeon at the University of Toronto in Canada, treating hundreds to thousands of patients with inflammatory bowel disease (IBD). In taking care of innumerable young people with Crohn’s and colitis over the decades, I have witnessed the detrimental effects of these diseases on countless occasions. While I recognize IBD as a potentially catastrophic illness, what I have always found remarkable is the patient’s resolve and ability to push forward in the face of major adversity. I have witnessed tremendous changes in both medical and surgical treatments available for patients with IBD, allowing them to live fuller and more robust lives than they ever could before. Because of this, the question of pregnancy in IBD now arises frequently. As treatments for IBD have improved over the decades, it is imperative that we as clinicians are able to guide young women with the disease in their wishes to start a family. This, of course, involves giving appropriate recommendations about the timing of surgery against the timing of conception and childbearing to give them the best chances of having a healthy, happy baby.  

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Summary

Inflammatory bowel disease (IBD), including Crohn’s disease (CD) and ulcerative colitis (UC), is a lifelong, devastating illness consisting of progressive inflammation of the gastrointestinal tract. Previous research has suggested a link between inflammation secondary to IBD and increased infertility in young women. Surgery can be an effective treatment for IBD, and is required in 25-30% of cases. At this point, it is not clear whether surgical treatments are helpful or harmful in facilitating pregnancy. This study will investigate the impact of specific surgical procedures stratified by approach (laparoscopic vs open surgery) on fertility for CD and UC in Ontario, Canada. To do this, administrative databases from the Institute for Clinical Evaluative Sciences will be used. Data from Ontario will be later combined with data from other Canadian provinces as part of a national collaborative investigating fertility and pregnancy outcomes in IBD. 

Why is this important?

There have been few studies which have investigated the impact of surgery on fertility and live birth rates in IBD. Certain specialized procedures for UC (specifically, the ileo pouch anal anastomosis) have been shown to reduce fertility, but more up to date and robust studies are required to better delineate this. The impact of laparoscopic surgery, an approach which has become prominent in abdominal surgery for IBD over the past decade, has yet to be investigated using large databases. Additionally, Crohn’s disease has very little in the way of published data documenting the effect of surgery on fertility. Because so many women are required to commit to surgery as part of their treatment during their childbearing years, more studies are required to create an evidence-based approach to balancing surgery, fertility, the need for fertility treatment and pregnancy in this population.

Who will benefit?

Young women with IBD who require surgery as part of their treatment, yet are interested in preserving their fertility, or optimizing their chances of conception going forward. 

Budget

The majority of funds raised on Consano will be utilized to acquire access to detailed and reliable data held at the Institute of Clinical Evaluative Sciences (ICES) in Ontario, Canada. This type of data, referred to as administrative data, is meticulously stewarded at ICES. When analyzed thoughtfully, it can provide a global understanding of diseases at the population level which can be applied to the management of many patients in other countries. Because of the personnel and statistical expertise required to maintain these databases, data access for research requires appropriate funding, which is what we will use Consano funds to do.