Has Crohn’s Disease Robbed Us From Starting a Family Naturally?

During my first in-person appointment in over seven months, I asked my PCP about seeing a reproductive endocrinologist. You know, to dot the i’s and cross the t’s.

She flat-out warned me, “Be prepared to open a Pandora’s Box.”

She wasn’t wrong.

I’m now left wondering, “Has Crohn’s disease robbed us from starting a family naturally?”

Getting older with Crohn's

I turned 39, last month. It’s so weird to re-read that. I don’t feel like I’m 39.

Speaking of being 39 … I totally recognize that age is just a number. However, as a person with Crohn’s disease who's considering starting a family, it’s a cold-sweat, nervous-laugh-inducing number.

I’m not sure if you can hear that faint “tick-tock” sound in the background? Pay no mind to it, it’s just my geriatric womb’s biological clock taunting from afar.

Responding to critics about family planning

I’ve seen a lot of commentaries, over the years, asking why someone with IBD or a chronic disease wants to start a family. Comments calling IBD patients selfish for passing on the chance of getting the disease to a child.

My normal responses are, “Why wouldn’t they start a family,” or "Do you know how genetics with passing an IBD work?"

This usually opens up the door to start a conversation and drop some knowledge.

Family-planning research around IBD

For example, there’s about a 3% risk of a child from a parent with Crohn’s developing an IBD as well. That is a 97% chance that a child will not develop an IBD.¹ The risk does increase if both parents have an IBD, or multiple family members have an IBD. And being in remission is the best time for someone to fall pregnant.²

A popular reply online usually goes something like, "Citation, please?"

So, it was very pleasing to see a load of citation-worthy information debut last year. Like the 16-page specialty report about IBD management for pregnancy, care pathways, and risks. It was issued, last year, by the American Journal of Obstetrics & Gynecology.²

Then, there was also the launch of the IBD Parenthood Project from the American Gastroenterological Association (AGA).¹ The website has so much information available and easy-to-digest (pun not intended) factoid infographics.

Considering options around pregnancy with Crohn’s

About that Pandora’s Box that I opened, here’s how that went.

Let me preface what I’m about to say with, I know life is not a competition. However, it's hard not to feel sad or like we are not doing something right.

Because all the couples around us already have a baby or are on their way to having a second. And here we are with my geriatric womb and the clock going tick-tock.

For the record, I hate the term and truly hope someone in medicine comes up with a less offensive title like "advanced womb."

At the beginning of this year, I wrote about expanding our family in, “Crohn’s and the Unknown with Starting a Family.” After posting the article, I decided to rip the bandaid off and make an appointment with a reproductive endocrinologist. I was scared.

But, I also wanted to know what we were dealing with in terms of ovarian reserve and genetic testing. Never, in a million years, did it occur to me that there could be something physically wrong.

Pandemic postpones appointment

Then, the pandemic made its way to Florida and non-essential medical practices closed. So, pursuing this appointment got put on the back burner.

Florida’s infection numbers remained throughout the spring and summer. My husband and I were not “not trying” but we also were not putting in a maximum effort either. My focus remained on our health, our parents' health, along with keeping my Crohn’s in remission.

Non-essential medical offices began to open up in July and I was not pregnant. Cut to that conversation, I mentioned above, where my PCP warned me about opening up a Pandora’s Box. As it turns out, I ripped that box wide open.

My reproductive endocrinologist visit

About an hour after leaving the PCP appointment, I called the reproductive endocrinologist practice I had researched earlier in the year. Much to my surprise, they were seeing patients again virtually and in-office. Two weeks later, we “met” for a virtual appointment.

Our first meeting went well and she reviewed how things work in general for a patient my age. I found comfort that I was not her first or only IBD patient. The only thing about the process I'm not fond of is that some uncomfortable procedures are necessary.

Lab tests include hormone levels at different times during your menstrual cycle. Certain procedures also have to take place after your period. I highly recommend using a period or ovulation tracking app to help in facilitating setting up these future appointments.

Back to the Pandora’s Box, I had mentioned, here it is…

During the start procedure, I heard, “Well that’s not normal.”

My brain began to race and it immediately ran to my mother’s rare cancer.

An obstruction was showing in my uterus. My doctor directed her assistant to schedule a second procedure for the very next day. It was supposed to be a paper-work morning and the cycle schedule makes the timing of the essence.

The next thing out of her mouth was, “I don’t think it is cancer.”

To be continued ...