Healthwatch Essex launch new report and information resource exploring women’s experiences of inflammatory bowel disease during pregnancy and the postnatal period.
Over half a million people in the UK live with Inflammatory Bowel Disease (IBD). IBD is an umbrella term for two chronic gastrointestinal conditions: Crohn’s disease and ulcerative colitis. The disease is characterised by a cycle of relapse (often referred to as ‘flare-ups’) and remission. Flare-up symptoms are unpredictable, and can include chronic fatigue, anaemia, abdominal pain, rectal bleeding, weight loss, constipation, and diarrhoea. There is currently no cure. People living with Crohn’s and ulcerative colitis have to self-manage their condition. This involves recognising the signs of a flare-up, trialling medications, and trying different diets. Self-management is a trial-and-error process that can be tiring and time-consuming.
Having a baby has a huge impact on people’s lives. There is little research, however, on how pregnancy and caring for a newborn affects the lives of women and birthing people who are already self-managing a long-term condition like IBD. Healthwatch Essex’s new report – The Dual Challenge of Pregnancy and IBD – fills this gap, capturing the lived experiences of women with IBD during pregnancy and the postnatal period in their own words. It draws on in-depth qualitative interviews to understand how women managed their disease during and after pregnancy, and experienced care under multiple specialities, including their GP, maternity, and gastrointestinal services.
Our study found that it is never too early for women and birthing people to plan for pregnancy with their IBD team. These conversations reduce anxiety about medications, fertility, and maintaining remission. IBD nurses provided our participants with vital support throughout their pregnancy journey. One woman we spoke to also shared how she was diagnosed with Crohn’s during her pregnancy. She wanted to tell her story so that others in a similar situation would feel less alone.
Participants highlighted the balancing act that they performed whilst attending multiple appointments, searching for information on pregnancy and IBD online, and liaising with several specialist doctors, all while maintaining their other daily responsibilities. Having a gastroenterologist, obstetrician and/or midwife present at antenatal appointments can reduce this sense of fragmented care.
All of our participants agreed that women and birthing people with IBD needed better support over the postnatal period. Flare-ups can occur shortly after childbirth. However, none of our participants were warned by clinicians that this would be the case. Our participants experienced debilitating fatigue during this time, coupled with significant weight loss and a need to go to the toilet all the time:
‘Went into this flare-up [after giving birth]. I think I had no heads-up about that. I think if there was something out there that said you could flare, be ready for that, that could have been helpful. If there was something to read or some resource, that would’ve been really helpful’.
You can find our participants’ recommendations in our report here. They highlighted the absence of a centralised source of UK-based information on pregnancy and IBD. Working with our participants, we have responded to this need, co-producing the information resource From Bump to Baby: Pregnancy and postnatal information for those with IBD. This resource provides guidance on each stage of pregnancy, suggestions about what to discuss with your maternity and IBD teams, personal reflections from women with IBD, and links to reliable websites and support forums. It also features an alert card for individuals taking biologic medication. The card can help to facilitate discussions with your healthcare provider regarding your baby’s immunisation schedule.
Healthwatch Essex’s Research Manager Dr Kate Mahoney said:
‘This report makes an invaluable contribution to the previously under-researched topic of maternal IBD. By foregrounding the voices and experiences of women with this condition, we have been able to identify the key issues that they face over the course of their pregnancy journey, and how the support they receive within health services can be improved. Our accompanying resource, which was developed with the support of our research participants, IBD nurses, and a community pharmacist, is one of the only centralised sources of information on pregnancy and IBD published in the UK. This research contains wider learnings about women and birthing people’s engagement with multiple specialities and self-management, which is generalisable to a range of long-term conditions.’
This project was led by Research Officer Lorna Orriss-Dib and kindly supported by our Research Ambassadors Ife Ajala, Madhusree Dasgupta, Maria Karpouzou, Onyi Nnamani, Elliott Pascoe, and Gemma Wood.