Many people know that I have had Crohns disease since I was 22 years old  – that was when it was officially diagnosed but probably from 4 years before when I was 18 years old. It has had an immense effect on my life firstly medically – I have had 3 bowel resections and been on medications since the last one in 2002 which very nearly killed me. The only times when I was really fit in and well were when I was pregnant and breastfeeding which sparked my interest in becoming a breastfeeding counsellor 35 years ago. It meant I fed my second and third daughters for much longer (I became very ill soon after I weaned my first) and became passionate about supporting women to breastfeed. As a pharmacist that rolled into an interest and then passion about drugs in breastmilk.

When I regularly had contact with mums with IBD asking about their medication I decided to set up the Facebook group as a mutual support group. Mums who understood the urgency of toilet visits when out shopping, understood how debilitating it was to be in constant pain, that we could discuss anything in a private forum with others in the same situation. Coincidentally it has become a place where people ask each other about drugs and look to me to provide evidence of safety in breastfeeding – that wasn’t the original intent but an excellent spin off.

I havent set up any other specialist interest groups – this is out of my personal interest. Unsurprisingly the diagnosis and treatment of inflammatory bowel disease has taken up a lot of space in my book Breastfeeding and Medication and I am keen that professionals understand that breastfeeding protects our babies but is also something which we value above many things.

As of this morning we have 1.6K members from all over the world, climbing steeply recently January 2022).

Specialists seem to be very concerned about the safety of the drugs – which are strong admittedly and breastfeeding. But we also need to bear in mind that IBD is at least partly linked with being formula fed so we want to maintain breastfeeding and use specialist sources.

Live vaccines may be delayed or omitted – particularly the rotavirus vacc. However, this is as much to protect the mother who may contract the illness from the viral particles shed through the faeces, Exclusively breastfed babies are at low risk if contracting rotavirus in any case.

I am going to admit that I am passionate about the subject – this is the core of my life

See also Facebook live video

Inflammatory bowel disease and breastfeeding – facebook live

CONCLUSIONS: In a study of women receiving treatment for IBD and their infants, we detected low concentrations of infliximab, adalimumab, certolizumab, natalizumab, and ustekinumab in breast milk samples. We found breastfed infants of mothers on biologics, immunomodulators, or combination therapies to have similar risks of infection and rates of milestone achievement compared with non-breastfed infants or infants unexposed to these drugs. Maternal use of biologic therapy appears compatible with breastfeeding.

With the help of the Breastfeeding and IBD facebook page I wrote this article:

what would you like your healthcare tean to know about IBD and breastfeeding

Finally I have put together all the information on studies on anything to do with prescribing, procedures and vaccines for breastfeeding mums with IBD. If you have IBD take this with you to appointments. If you are a professional please make sure everyone in the team has a copy. I am happy to offer Teams Training to any group of professionals who support mums with IBD.

All you need to know about investigating and treating IBD in breastfeeding mothers factsheet