A growing number of parents with Crohn's or Colitis are finding that breastfeeding is not only possible but beneficial and healthy, thanks to "breastfeeding evangelists" like Hayley and long-time advocate Wendy Jones, who is on a mission to correct medical misconceptions about the effect of IBD drugs on breastmilk.
We spoke to five mothers about their experiences.
For information on how your medicines might affect your ability to breastfeed, see our page on Pregnancy and Breastfeeding.
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Breastfeeding is not the norm in Hayley Potter’s family. As far back as anyone can remember, infants have been formula fed. “But I have watched enough kittens and puppies get on with it naturally, and they all thrive,” says the 32-year-old veterinary nurse from Speke, Liverpool. “I suppose they were my inspiration for wanting to feed my babies this way.” Hayley, who has Colitis, and her partner Billy carefully planned their first pregnancy. Three months before conception she was advised to stop taking the immunosuppressant drug azathioprine and anti-inflammatory mesalazine, which she had been taking to control her symptoms, and other than a couple of minor flare-ups illness stayed at bay until daughter Phoebe’s birth in September 2014. Then came a significant relapse.
“I was put on steroids, told to manually express the first feed after a treatment and then discard it as it wasn’t considered safe for the baby – they call it ‘pump and dump’,” says Hayley. “I tried that for as long as I could but it was very difficult dealing with a hungry baby.” Instead, she came off all her treatment and breastfed Phoebe for her first 16 months. Another flare-up, and a rediagnosis of Crohn’s Disease, put a stop to it. “There wasn’t much support for breastfeeding women with Crohn's or Colitis back then,” she says. By her second pregnancy, Hayley had joined a local mothers’ support group, and found the Breastfeeding Network and a Facebook group for breastfeeding mothers with Crohn's or Colitis.
Online groups were safe places to ask all the questions I had and they transformed my experience the next time around.
There were again minor flare-ups. “But I knew it was safe to take a short course of steroids, and made sure everyone was aware that I was planning on breastfeeding,” she explains. “This time I was the one educating the clinicians, asking them to read the evidence. I was sure of my facts because I had checked it all out with Wendy.” Nursing her second daughter Olivia, now nearly two, has brought all the satisfaction she hoped for. “I absolutely love the feeling of knowing you are providing everything to keep your baby safe,” she says. “I’m speaking out and setting an example to family and friends,” she says. “My sister-in-law has decided to go for it because of my experience. And that can only be a good thing.”
Wendy Jones’s name crops up often among breastfeeding mothers with Crohn's and Colitis. An experienced community pharmacist who specialises in understanding the effect of drugs on breastmilk, she was a founder member of Breastfeeding Network, formed in 1997 to support the growing number of women looking for information. It was Wendy who developed its drugs-in-breastmilk helpline, which generated a Facebook group that now has 585 members around the globe. The effect of medicines on lactation is an under-researched field, and Wendy is one of the few authorities in the world.
When it started, the helpline took occasional calls from health professionals and worried women. It has grown into an online resource fielding around 10,000 enquiries a year. Wendy, supported part time by another pharmacist, handles replies to women’s questions from her dining room table. “We try to back up what we say with research by dipping into the databases,” she says. “We deal with all aspects of drugs and breastfeeding, but it is the questions from women with Crohn's or Colitis that affect me most as I know how that feels.”
Wendy was just 21 and newly married when she was diagnosed with Crohn’s. After high doses of steroids and a bowel resection, she gave birth to a daughter, Kerensa. Despite a flare-up and a further resection, Bethany was born, followed by Tara. While working as a part-time pharmacist in her home town of Clanfield near Portsmouth, Wendy became a breastfeeding support worker, joined the National Childbirth Trust as a breastfeeding counsellor, and offered to update its guidance on the effects of drugs on breastfeeding.
Women who want to breastfeed should be actively encouraged, not scared off
The response inspired her passion to share her knowledge. “It became clear there wasn’t enough good information out there. Mothers were telling me about all the inaccurate advice they were being given by professionals and I made it my mission to help them,” she says. “I am all about evidence-based medicine, and people need to know the facts.” According to Wendy, very few treatments for IBD cannot be taken safely while breastfeeding. “Typically, pregnancy and breastfeeding are regarded as the same when it comes to studying the effects of drugs, but the body processes drugs in breastmilk very differently,” she explains. “There is evidence that you can take quite strong medicines and still keep your baby safe.”
There is no doubt that breastmilk is beneficial for babies, and it is believed that breastfeeding may offer protection to infants against developing Crohn's or Colitis in future. Yet no-one knows how many women with these conditions breastfeed, or for how long, or what influences those who choose not to. The author of three books about breastfeeding and medication, and holder of a PhD on the topic, Wendy is as driven as ever. “I’d like every gastroenterologist to realise that breastfeeding benefits babies and offers mothers a positive experience,” she adds. “To be told you can’t, or you have to stop, is devastating.”
For Georgina Simpson, lifelong irritable bowel symptoms escalated after the birth of her eldest son, Freddie, now five. Their breastfeeding journey was short-lived. “I was in constant pain, under stress and didn’t know where to turn,” says the Norwich-based waitress. “I thought I was failing as a mother.” When Tobias was born in March 2017 Georgina was diagnosed with Ulcerative Colitis, but was set on breastfeeding. When he was eight months old she needed a colonoscopy, and was told she couldn’t feed for 24 hours because of the sedative involved.
I was distraught. That would mean the end of breastfeeding. Again, I felt it was all my fault.
In despair she turned to an online forum, where she heard about Wendy. “She saved it for me,” says Georgina. “I gave my doctor a factsheet with all the information on the drugs that could be used in my colonoscopy. It wasn’t brought up again.”
Nottingham-based teaching assistant Maria Williams also required a colonoscopy to investigate her flaring Crohn’s soon after the birth of daughter Cassidy, now three. “My consultant told me I would have to stop breastfeeding for 48 hours or there would be no procedure,” she says. “And a nurse accused me of deliberately trying to harm my baby by wanting to keep feeding her.” Following information from Wendy, Maria insisted there was no need to interrupt her breastfeeding regime and moved hospital to another IBD team. “Too many health professionals are not up to speed, but some are prepared to listen to what women are telling them. Because of online forums and the Breastfeeding Network’s drugs-in-breastmilk service, we’re talking to each other. Word is spreading.”
You shouldn’t have to battle to do what you know is right
In Belfast, business analyst Gemma Boyd, 33, was responding well to the treatments she had been using to control Colitis since her diagnosis five years earlier when she became pregnant with daughter Sophia, now 13 months. She continued taking the anti-inflammatory Asacol and azathioprine during the pregnancy, and when she raised the fact she wanted to breastfeed, her consultant’s advice was to ‘pump and dump’. “I checked, and informed them that it was fine to keep feeding. I found the breastfeeding and drugs information on the Crohn’s & Colitis UK website comprehensive and Wendy is an angel, helping clarify choices,” says Gemma, who is no longer being treated for Colitis. “We’ve left it that I will get in touch with the consultant if anything goes wrong.”
It’s been a great confidence boost and empowering, working with professionals who are willing to learn and help me do things my way.
Not all mothers want to – or are able to – breastfeed. Crohn’s & Colitis UK recommends that you speak to your IBD team before making any decisions about breastfeeding while on medication.