“I was told I’d never marry”: what it’s like to live with IBD

Written by Ellie Broughton

One in four people living with inflammatory bowel disease (IBD) experience depression and anxiety. As a new study explores how CBT improves mental and physical symptoms, Stylist investigates what it’s like to live with IBD and whether therapy can finally improve patients’ lives. 

Omma Ahmed was 23 when she got a stoma. Now 33, she has written about her experiences and provides support for others going through similar situations. But at the time, she was extremely uncomfortable with how the surgery had changed her body.

“Before I got it, a nurse asked me: ‘Where do you want your stoma?’ I was like, ‘What are you talking about?’ No one had ever spoken to me about it before,” Ahmed tells Stylist. “Afterwards, I didn’t want to even look at it.”

Ahmed has Crohn’s disease – one of the two main types of inflammatory bowel disease (IBD). Both Crohn’s and colitis, the other main type, cause inflammation of the gut and lead to pain, weight loss and fatigue. 

Some people, like Ahmed, experience so much inflammation that they are given an operation –a colostomy, which diverts one end of the bowel through an opening, or stoma, in the tummy to stop people from using their gut altogether. In many cases, apouch is placed over the stoma to collect stools. 

After Ahmed left hospital, her parents began to worry about how having a stoma would affect her relationships. “My parents are quite traditional and my mum said, ‘If you know anybody, just marry them,’ says Ahmed. “My dad was worried for me and didn’t think I could get married. He told me: ‘You won’t marry someone South Asian.’”

IBD affects one in 133 people in the UK. About one in four people living with Crohn’s and colitis experience depression and about one in three experience anxiety.The relationship between IBD and depression is also bidirectional: flare-ups cause stress and stress causes flare-ups.

A new study has just been awarded £100,000 to trial routine mental health screening and cognitive behavioural therapy (CBT) for people with a diagnosis. Participants will have access to a 12-week CBT course supported remotely by a therapist who can follow their progress and provide video calls. The study recommends two and half hours of therapist support across 12 weeks.  

Although the study won’t focus on the relationship between mental health and gut health, recent research into the brain-gut axis is finding that both what we eat and our gut flora affects autoimmune diseases like IBD and multiple sclerosis. For example, last year a study found that stress hormones blocked signals from immune cells and increased the risk of pathogens in the gut – specifically a group of bacteria linked to Crohn’s disease. But for now, most studies into cause and effect between brain and gut are performed on animals – human studies are still very small-scale.

This new study will focus on how CBT improves mental and physical symptoms. At the moment, mental health treatment is rarely offered to people with IBD. “Very few people with IBD are provided the breadth of support that they need,” says study lead Prof Rona Moss-Morris. “Therefore I’ve moved into digital therapies as a way of creating cost-effective ways of supporting them.My aim is to work towards a more integrated system where mind and body are both considered within standard treatment.”

Because mental health support is rarely offered as part of IBD treatment, many turn to self-funded therapy. Lauren Curr, 23, who uses the pronouns they/them, has ulcerative colitis. They say that they’ve sometimes felt blamed for having colitis because they also have an eating disorder diagnosis. At times they have been turned away from services, including A&E, because clinicians said their needs were “too complex”.

Curr is queer and felt really supported by finding communities for queer people with IBD online: “It makes you feel so valid. It makes you feel listened to and, like: we’ve got this; we can do this. I wasn’t expecting it at all.”

They see a therapist privately. “With therapy, I’m able to process all the events of the week,” they explain to Stylist. “That allows me to get through it and get ready for next week.”  

A new study has just been awarded £100k to trial routine mental health screening and cognitive behavioural therapy (CBT) for people with a diagnosed with IBD.

Millie Rose Steptoe, 26, has had a stoma for six years, the first year of which she found very difficult. “I thought people would see me as this ‘creature’ with an organ on the outside of my body. I thought people wouldn’t see me as myself anymore.”

What has helped Steptoe was paying to see a therapist privately, as well as having the support of family, friends and support groups. “I’ve only come to the realisation in the last year, after having therapy, that it is OK to feel like this or to have bad days,” she tells Stylist. Steptoe now has the confidence to speak to the press about her experience and raise awareness about the reality of life with IBD.

The reason many people opt for therapy is that it offers a shame-free space to talk, says Frances Taylor, a psychotherapist who specialises in supporting people with ‘invisible’ disabilities, including Crohn’s.

“They’re not being self-indulgent,” she says. “People can really struggle to give themselves permission to have therapy or see it as if they’re complaining. But in therapy, they’ve got space to offload the frustrations of living with that condition.”

Ahmed, Curr and Steptoe have all been offered CBT since their diagnosis. Curr has recently been referred for a course of CBT but was surprised to hear it is just three weeks long. “I’m willing to try it, but I’m a bit sceptical,” they say. “I’m not sure how you complete a CBT course in three weeks. There doesn’t seem to be any long-term support available.” 

Like Curr, Steptoe is also sceptical about the role of CBT for people with a diagnosis like hers. She went through a six-week online course via a local NHS service but it didn’t work for her: “It felt like I was on Facebook Messenger talking to a stranger. All it was, was a person typing, ‘Write down your thoughts and try to counteract them with positive thoughts.’ At the end of it, I was actually sadder,because I really thought they were going to help me.”

For Ahmed, CBT was a mixed experience. It helped initially when she was dealing with the depression and sense of loss that came after diagnosis. But she didn’t find CBT helpful when she came back to it for support with how having a long-term condition was affecting her.  

Like Steptoe, Ahmed feels motivated to connect with people going through what she went through. In particular, she feels strongly about representing her experience as a South Asian woman: “It is important to me to highlight the prejudice women in my position face. We face all the normal struggles a non-Asian has, but then we have these additional struggles with our culture: the way you’re seen as inferior and the comments you get.

“If people with IBD can see another girl who has been through similar situations and come out in a more positive light, that is really important to me, so that they don’t feel alone. Hopefully, it means things get easier.” 

For more information about IBD visit the NHS website, which has details about symptoms and advice. Further support can be found via Crohn’s and Colitis UK, IBD UK and Guts Charity UK.  

Images: Getty

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