Written by Tanya Manohar
My name is Tanya, and I live in Chennai, India. I was diagnosed with Crohn’s disease in 1999, a time when little was known about IBD in India. This means that I have segments of intestinal narrowing and scarring throughout my small intestine known as strictures caued by Crohn’s. I had one small bowel resection in 2009. A treatment regimen, comprising Azathioprine and Mesalamine, was the cocktail my Gastroenterologist Dr. Ashok Chacko prescribed to treat my Crohn’s. In combination with a restricted and closely monitored low-fiber diet, this regimen has kept me fairly stable. It has allowed me to live alone in a foreign country, pursue a Master’s degree, fall in love, get married and work.
Timing My Pregnancy with IBD
Pregnancy is a very personal journey especially with IBD, but that makes it even more important for us to share and empower others. For some people, there is a visceral need to experience motherhood. I too wanted to feel life growing inside of me, to nurture and bring a baby into this world. However, with my Crohn’s disease and surgical history, I wasn’t sure if my dream would ever materialize.
I was 31 years old and had been married for 6 years. Some of my friends had already had their second child by then. However, between routine follow-up appointments and optimizing medication to stay in remission, I kept suppressing my desire for motherhood, like an unspoken dream deep in my heart. Saying it out loud meant confronting the possibility that it could get permanently rejected.
During one of my appointments with my gastroenterologist, Dr Chacko suggested that this would be an optimal time to plan for a family as I was doing well in remission and staying fit with exercise and yoga. It was finally happening and I was cleared for pregnancy! Dare I dream?!
As my doctor explained to my husband and me, the best time to plan for a baby is when your body is in remission. The mother being in remission at the time of conception ensures a much higher chance of a smoother pregnancy. The mother’s health should guide pregnancy, rather than a biological clock or age or worse still, social pressure!
Buoyed with hope and excitement, my husband and I zeroed in on a renowned gynecologist at one of the leading hospitals in Chennai, India. We walked into our consult, full of dreams of parenthood and holding our precious baby.
The minute the gynecologist heard I was on Azathioprine and that I had Crohn’s disease, her singular response was that I would probably never conceive with Crohn’s disease and that I should not go ahead with pregnancy while on this medication.
Shattered and dejected, we reported this development to my gastroenterologist. He strongly advised us that there had been enough research proving that pregnancy is possible with Crohn’s and that Azathioprine was not contraindicated for IBD patients. He said that he would stand by us throughout the entire journey. This was the support that we needed to continue this journey.
Identifying the Right Gynecologist
My husband and I began to get ready to confront the hurdle of finding the right gynecologist to handle my care.
During this time, I realized the following about finding the right gynecologist:
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- A gynecologist is like the Captain of the ship in one’s pregnancy journey. This gynecologist should have worked with IBD patients before or at the very least with patients on similar drugs, should be familiar with IBD medication and doses, and should be willing to work with our gastroenterologist throughout the pregnancy.
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- For us IBD patients, coordination between the gastroenterologist and gynecologist is vital to ensure a smooth pregnancy.
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- I would highly encourage patients to look around, take feedback and meet as many gynecologists they need in order to find the right fit.
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- It is even more important that we advocate for ourselves once we have found the right gynecologist and not settle for less. Do not hesitate to voice concerns; even if they may seem trivial, they may not be.
We ensured regular GI follow-ups during my pregnancy to ensure my IBD was under check. Given the fact that IBD may make us more prone to anemia, monitoring parameters like iron levels and blood counts are critical. With a baby growing inside me, I was extra vigilant about my diet, exercise, my medication, and my meditation to make sure I was as healthy as possible.
Diet in Pregnancy with IBD
As a South Asian, the minute you are pregnant, from the neighbor to the shopkeeper, everyone has advice on what you should eat to have a healthy baby. I am on a particular diet to manage my many strictures. There are days when all I can tolerate are soupy fluids. With all the unsolicited advice, the guilt of my severely restricted diet was getting to me and I was concerned about nurturing and nourishing a growing fetus. I was terrified that I would end up delivering a malnourished baby.
This is when we decided to meet a dietician and I can safely say this was one of the best decisions I made. She sat with me, understood my limitations, and guided me on how I could nourish the growing baby, given my strictures. We drew up a list of possible healthy food options and snack ideas. We monitored caloric intake closely. I firmly believe that my son at the time of delivery was a healthy 3.52 kg (7.76 lbs) because of the extra attention I paid to my diet during my pregnancy.
Navigating More Hurdles
It was this weight that ended up becoming extremely critical within a few hours of his birth. Post a smooth C-section delivery, my son was whisked away to the NICU due to meconium inhalation at birth, which is apparently quite normal in many full-term babies. He was put in an oxygen chamber to ease his breathing. Due to an oversight at the hospital, he was removed from the chamber too early. By the time the senior neonatologist could evaluate him, he was struggling to breathe. The doctor was concerned that the baby would deteriorate rapidly without intervention. Within a few hours of his birth, before my husband or I could even hold him, my son needed to be moved to a hospital with a nitrous oxide ventilator.
I was shaken by this entire experience of watching my son struggle. The neonatologist, however, assured me that I had given him the best chance of fighting for his life, by nourishing him wholesomely every day.
Breastfeeding on Azathioprine
I had always wanted to nurse my baby; it was something that really mattered to me. At the time, I was not aware of the latest research that had concluded that moms with IBD on Azathioprine could safely breastfeed their children. Though my gastroenterologist insisted that Azathioprine was completely safe during breastfeeding, the lack of availability of easy-to-understand research and patient resources (particularly in India) meant that I struggled to convince my loved ones about the safety of my medication. Managing my elders and families’ opinions was one more hurdle for me to navigate even though I had barely recovered from the C-section and the hormonal changes in my body postpartum.
Additionally, since my son was in the NICU and was developing infections due to ventilator exposure, some doctors felt that the Azathioprine passing into my breast milk had lowered the baby’s immunity. Since the transmission into breast milk (a negligible amount) happens within the first 2 hours of taking the medicine, I was advised to feed the baby in the morning, take my Azathioprine and then pump my milk after 4 hours and discard it. The baby would be on bottle feed for those hours and the rest of the “Azathioprine-free” feeds would be from me directly.
But my son continued to remain in NICU, fighting infections heroically every day. My little Hercules was suffering and I was pushed into a corner and made to feel like my medication was the cause of his suffering. And I was devastated.
With absolutely no let-up of my son’s symptoms, I asked my gastroenterologist if I could stop my Azathioprine completely. Dr Chacko was torn between upsetting an already emotionally distraught mother pleading for a chance to feed her baby and the concern that weaning off the Azathioprine would push her into a flare. He decided to take a chance and allow me to stop my medication. I am eternally grateful for his kindness and empathy that day. I got to nurse my son for 5 whole months before my Crohn’s flared up and I had to be back on Azathioprine.
Looking back, I wish that I had been better prepared about my medication and that my husband and I had done more research, had access at that time to patient-friendly resources like the PIANO study and the American Gastroenterological Association’s IBD Parenthood Project. This would have helped us advocate for ourselves as parents and to stand our ground that Azathioprine was 100% safe for breastfeeding.
Onwards & Upwards
But now all that matters is that my son is happy and healthy. When I see my 7-year-old son today chuckle with mischief or climb a jungle gym with ease, the memories of his first days on this planet seem so distant. We named our little boy Vikrant, meaning valiant, strong, and powerful. He has been the center of our world and a fountain of excitement, enthusiasm, and joy.
My biggest strength in this entire journey has been my wonderful partner, Prashant. His equanimity in times of struggle, his clear logical thinking and his indomitable love and support throughout my life have been my greatest blessings.
So when Tina asked me how I own my Crohn’s, I told her, “living with IBD may not be easy; it can be a tumultuous journey. But with discipline, self-care, self-advocacy, optimism and support, it is possible to find a means to live a full, happy life and follow your dreams, including having children.”
FAMILY PLANNING WITH IBD RESOURCES:
To watch a Facebook Live discussion by our nonprofit, South Asian IBD Alliance, on Family Planning with IBD, visit our YouTube channel: https://youtu.be/uKFv1FcBO3o.
To contribute to the PIANO study and advance understanding of advanced therapies in IBD during pregnancy, please visit https://gastroenterology.ucsf.edu/research/piano.
Other resources for pregnancy after IBD surgery (ostomy or j-pouch) from United Ostomy Associations of America: https://www.ostomy.org/pregnancy/ & https://www.ostomy.org/labor-delivery-with-ostomy/
IBD pregnancy & fertility advocates to follow include: Natalie Hayden of Lights, Camera, Crohn’s & Jessica Caron of Chronically Jess
As always, thank you for your readership! I hope you found this blog post as heart-warming and as educational as I did! Happy Caregivers’ Month! May all our moms living with IBD be blessed for all the love they exude into the world! <3
