I Tried IVF So I Could Get Pregnant with Active Crohn’s Disease

I learned that pregnancy is easier for those in remission, so I turned to in vitro fertilization. Here’s how it went.

Fertility definitely wasn’t the first thought on my mind when I was diagnosed with Crohn’s disease in my late 20s.

At the time, I was simply focused on understanding my diagnosis and starting my treatment plan.

But once I became used to my new reality of life with inflammatory bowel disease (IBD) — and was approaching age 30 — I started thinking about whether IBD would prevent me from starting a family.

I noticed friends and colleagues around me were now getting pregnant, but at the time, the only thing I could see my body doing was failing. For example, 18 months after my diagnosis, I had complications involving two abscesses, a fistula, and a fistulotomy (an operation to cut open the fistula), which left me with a lot of scar tissue around the perianal area.

I was taking azathioprine, an immunosuppressant, and I still wasn’t sure if it was working or if I’d need to try a different medication.

It felt as if my body wasn’t doing a great job of taking care of itself — so surely growing a child alongside this wouldn’t be possible, right?

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Fears about pregnancy

It might sound like a leap, but it’s a common mindset.

A 2015 study found that almost 20% of women feared infertility after an IBD diagnosis and were concerned about numerous aspects of IBD and pregnancy.

For example, over 25% of women didn’t think they could breastfeed, and over 60% didn’t know if they could continue taking IBD medications while pregnant. More than 27% said they’d considered voluntary childlessness because of their IBD.

To what degree IBD actually affects pregnancy is less clear-cut and is usually dependent on disease activity.

Most women in remission have typical pregnancies and healthy babies. However, becoming and staying pregnant can be challenging during a flare, and other complications can arise.

These facts were somewhat reassuring when I first opened up to the possibility of trying for a baby, but I was in an awkward limbo: My blood tests showed I still had some inflammation, and I wasn’t technically in remission. But I wasn’t experiencing lots of symptoms or an acute flare-up, either.

A difficult decision

In situations like this, we’re often advised to speak to our medical team, but my doctor was quite noncommittal and would only advise not trying to conceive when I felt very unwell.

He gave me a choice: start a new biologic medication (adalimumab, commonly known by its brand name, Humira) to deal with the lingering inflammation or try for a baby first.

This is where I rubbed up against another misconception. While this IBD medication is deemed safe for pregnancy, it requires weekly blood tests to monitor for potential side effects.

That alone sounded scary — I read about how the medication could affect my white blood cell count or, rarely, be linked to certain cancers. Surely, I thought (although I had no real evidence to support it), this was not going to help in my bid to be a mother.

So, my husband and I decided to postpone the medication and try for a baby. It was a stressful time — as each month went by and I didn’t get pregnant, I felt another month closer to admitting defeat.

A race against time

In the UK, where I live, the NHS covers one round of fertility treatment for free in certain circumstances. As my husband and I didn’t have children, we were eligible, but we needed to try for at least 2 years unsuccessfully to qualify.

At this point, I didn’t feel I had more time to just wait — surely I’d have to start medication by then. And what if I went into a flare and had to put things on hold? Or even have another surgery?

Other potential parents planned pregnancies around vacations and promotions, it seemed, but mine had to be planned around the status of my digestive tract!

After a chat with my GP, she agreed that my health issues qualified me for earlier treatment, and we began with routine tests. These revealed that I had lower AMH levels, a measure of ovarian reserve, than expected for my age. While this didn’t mean I couldn’t get pregnant, it was one indicator that it may be harder for me.

I couldn’t find any connection between this result and Crohn’s disease, but to me, it felt like another sign that my body just wasn’t healthy enough to achieve pregnancy on its own.

Since I was so used to medical intervention, I believed that I would need it to have a child, too, and saw in vitro fertilization (IVF) as being our only way forward.

We were very lucky that there wasn’t a huge wait for IVF in my area (as there often is across England), so after I received this news, I decided to start IVF.

It wasn’t necessarily what my IBD team wanted for me. My most recent MRI results showed that I now had moderate disease activity. In an ideal world, I’d have waited until I was in complete remission to start IVF, but I jumped right in, as I couldn’t shake the feeling of not having time to wait.

Doing IVF with IBD

Living with IBD made some aspects of IVF more challenging. First, I had to have some extra blood checks to ensure I wasn’t deficient in any vitamins or minerals as a result of my IVF.

Next, I learned that I would have to inject myself with hormones to suppress my natural cycle and help my body produce many more eggs than usual.

My IBD symptoms have always been sensitive to hormones, typically worsening just before and during my period. The injections were no exception, as I found they increased my bloating and the number of daily bowel movements I had.

Of eggs and embryos

After a week or so, it was time to retrieve the eggs I had produced. The team was able to retrieve only four eggs from me — lower than average but expected due to my decreased AMH levels. Otherwise, the procedure went smoothly.

After they were retrieved, the eggs were fertilized with sperm to create embryos.

Five days later, the most viable embryo was transferred to my uterus. Most women are awake and watch the procedure, but since my fistulotomy, I have found things like cervical smears and vaginal examinations much more painful due to the location of my scar tissue. To avoid distress and the risk of disturbing the procedure, I had to have anesthesia for the transfer.

The last part of the cycle involved me taking progesterone each day to help support the potential pregnancy. The usual way to do this at my hospital is by a suppository inserted into the vagina, but again because of my fistulotomy, this wasn’t possible as it could aggravate the area. Instead, I had to give myself injections in my buttocks.

I always got a bit of pre-period diarrhea, but with the progesterone, it worsened, and so did my cramps. It felt very similar to a flare.

I remember the day before I was due to test for pregnancy, we’d gone out to eat, but afterward I had to urgently use a bathroom on the train.

As I dealt with excruciating stomach cramps and diarrhea, I hoped against hope that I could still be pregnant. The next day, there was a very, very faint line on the pregnancy test — but it didn’t progress. It hadn’t worked.

Making peace and moving forward

I’ll never know if my body was just super sensitive to hormones or if the stress and IVF had worsened my IBD symptoms. It’s even more difficult to know if these factors caused the IVF to be unsuccessful or if it was all simply coincidental.

But either way, I blamed myself and accepted it was finally time to start my new IBD medication.

I decided to take the Humira for 6 months to give my body a chance to heal before trying IVF again. I had only been taking the new medication for 2 months when I found myself staring at a very positive pregnancy test.

I’d only had sex once in this time while I focused on healing, and I’d never believed it could happen naturally if it didn’t happen already with all the scientific intervention I’d received!

But it had. And the first few weeks were tricky, as I experienced some diarrhea again (my gut really does not seem to like changes in progesterone!), but this time, things were OK. My body eventually adjusted to the change, and I soon felt healthier than I ever had been.

I spent the next 8 months in remission with a textbook pregnancy and had my son at 39 weeks. He is now 4 years old!

Out of those four fertilized eggs all those years ago, only one (besides the one that was transferred to my uterus) had been deemed high enough quality to freeze for potential later use.

At the time, that was my lifeline when my IVF cycle had failed, as it helped me feel that the whole process wasn’t all for nothing. I had one embryo that could be implanted when I was ready.

Now, if I wanted to try again, I wouldn’t have to go through the whole process of egg retrieval and embryo fertilization again, so the next round of IVF would be much simpler.

Now, our embryo remains in the freezer. I’m now 38 years old and probably will never use it, but knowing how many tears were shed to make that embryo, I can’t bring myself to close the door on it yet.

The takeaway

There was very little information about IVF for people with Crohn’s disease when I went through my procedure. Although recent research suggests that the success rate of IVF for people with IBD is similar to the rest of the population, I wish I’d been able to read about the experiences of more people like me at the time.

While I know IBD doctors can’t be experts in all areas of medicine, I really do believe they should spend more time talking with women about fertility and pregnancy.

If they had, perhaps I would have been a lot calmer and more rational about trying for a baby. Perhaps I wouldn’t have rushed into IVF, or I might have dealt with it with less stress. Perhaps I’d have had more confidence that my body was capable of pregnancy.

After all, Crohn’s disease is a chronic, lifelong condition — and while it can make life extremely hard at times, it doesn’t mean it’s incompatible with motherhood for the many who want to make this choice.