Marking World IBD Day

To mark World IBD Day, Research Manager, Kate Mahoney, and Research Officer, Lorna Orriss-Dib raise awareness about inflammatory bowel disease (IBD) and highlight some facts you might not know about the condition.

What is IBD?                                                                                           

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.

IBD and IBS are different conditions

We recently carried out a project exploring the experiences of people with IBD during pregnancy and the postnatal period. When we discussed the project with others, it was interesting how many people thought we were focusing on irritable bowel syndrome (IBS) instead. Several people used the terms ‘IBD’ and ‘IBS’ interchangeably. These chats made us realise that there isn’t a lot of awareness about the differences between IBD and IBS. As Crohn’s and Colitis Australia highlight, IBD and IBS are different conditions but can have similar symptoms, like diarrhoea:

IBD, most commonly Crohn’s disease or ulcerative colitis, is characterised by inflammation and damage to the gut while IBS is characterised by irregular bowel movements, abdominal pain and gas.

The conditions are also treated differently. IBD treatments aim to reduce inflammation, whilst IBS is treated by reducing dietary triggers and taking antispasmodic medication. People can have both IBD and IBS.

Most people with IBD will have happy and healthy pregnancies

The majority of women and birthing people with IBD will have happy and healthy pregnancies, with similar maternal and neonatal outcomes to the general population. Keeping IBD in remission is important during pregnancy and the majority of medications used to manage IBD are safe to continue with during pregnancy and breastfeeding. Always check with your gastroenterologist.

IBD symptoms can stop during pregnancy

Several women that we spoke to for our research project described how their IBD went into remission during pregnancy, meaning that they didn’t experience any symptoms. Our participants were relieved to be feeling better and enjoyed their pregnancies as a result:

It was amazing. It was like I didn’t have it. So, I always loved being pregnant. Well, I had morning sickness. Anything to do with Crohn’s was perfect. I had other sickness for other things but the whole pregnancy I’ve never been so well really, with both of them.

However, they did also share their uncertainty about what might happen next:

It is a shock when you go from being so unwell and then when you start feeling normal because then you are also fearful that you’re going to lose that, that was the thing with Crohn’s. You’ve always got this fear of what’s going to happen around the corner.

Not all our participants experienced remission during pregnancy. They felt that it was important to raise awareness about the women and birthing people with IBD who continued to experience symptoms. As our research found, it is important that materials on pregnancy and IBD recognise that everyone’s experiences of pregnancy are different.

If you have IBD, you may have a flare after giving birth

None of our participants were warned by health practitioners that they would experience an IBD flare after giving birth. This meant that they were unable to adequately prepare for experiencing a flare-up whilst caring for a newborn baby. All the women we spoke to stated that they would have valued being warned about this:

As soon as she was born, my body didn’t have a clue what it was doing. Went into this flare-up. I think I had no heads-up about that. I think if there was something out there that said you could flare, [and] be ready for that, that could have been helpful.

In response to our research findings, we collaborated with our participants to co-produce an informational resource that provides advice for women and birthing people with IBD across the course of their pregnancy journey. It includes a section on how to prepare for a postnatal flare.

You can read more about our research on IBD during pregnancy and the postnatal period here and find our informational resource here.

For more information about this research project, please contact Lorna Orriss-Dib at [email protected].