Are you suffering from Inflammatory Bowel Disease? Support is out there

Dealing with unpredictable and debilitating bouts of diarrhoea, fatigue and painful cramps just at the very moment when you want to be partying and setting off on adventures is a huge challenge.

Crohn’s disease and colitis, which come under the catch-all term Inflammatory Bowel Disease (IBD) can make social life into an obstacle course and at the very least double the possible awkwardness of first dates.

Hayden Cohen, 38, from Leeds wasn’t diagnosed with IBD until he was his thirties, but since his teens has suffered from  persistent “tummy problems” involving frequent and prolonged bathroom visits. “Before university I did American summer camp, and after you put the campers to bed, a few people were going out,” he recalls. “I disappeared for an hour, and they didn’t know where I was. That’s happened quite a lot socially, and it has been embarrassing at times.”

Matty Fisher, who was diagnosed with Crohn’s aged 13, has tried not to let it affect his life. Now in the fourth year of a film, photography and media degree at Leeds University, he says initially he was reluctant to tell anybody because “it was very difficult to come to terms with, and then to have those conversations with people was just a lot to get my head around”. Alongside taking regular medication, Matty has to watch what he eats very carefully. In extreme cases the lifelong condition, which often starts before the age of 30, can result in patients having to live with a temporary or permanent stoma. Although IBD causes ulcers and inflammation in the gut, symptoms can affect many other parts of the body. Recent scientific advances do offer hope to sufferers of IBD, which is proportionately more likely to affect people of Ashkenazi Jewish heritage. A team at the Francis Crick Institute and University College Hospital has discovered a weak spot in human DNA that is present in 95 per cent of people with the disease. Team leader Dr James Lee says that this section of the genetic code helps to regulate inflammation, and some people have a version that makes their body overreact.

Dr Lee, who is also a gastroenterologist at the Royal Free Hospital, told the BBC: “This is undoubtedly one of the central pathways that goes wrong for people to get inflammatory bowel disease.”

Though this exciting discovery opens up the possibility of new treatments using existing drugs, sadly clinical trials are still a few years away. In the meantime, the charity Crohn’s and Colitis UK has teamed up with medical professionals and patients to create a tool kit aimed at speeding up diagnosis.

Fisher is determined to help other sufferers too. Soon after being diagnosed, he made a documentary to share his story, Matty Fisher: Life Goes On, which was seen by thousands of online viewers. A second one he made at university, 24 hours with IBD, won gold at the 2022 National Student Television Awards.

Not content with that, he is now an ambassador for JDigest @ Camp Simcha, a support group for newly diagnosed children and their parents. It has a WhatsApp group and hosts regular events with nutritionists and medical specialists. He’s also been appointed a Ronald S Lauder Fellow by the World Jewish Congress, which he is using to develop a network, “Young Jews with IBD”, for students and young adults to connect and chat about their experiences.

He says: “If I’d had someone to speak to who was going through a similar thing when I was diagnosed, I think it would have been much easier in that first year, when I wasn’t telling anyone and really didn’t know what to think about it.”

Twenty-year-old medical student Oliver Kaye, who has more than 20,000 followers on Instagram where he posts @thekidwithabag about his experiences with a stoma, says it has been “very helpful” being able to share experiences through the network.

“Just having this community emphasises that you never have to suffer alone and there are people who are also facing similar challenges.”

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Crohn’s and Colitis Awareness Week December 1-7, 2024

Instagram: @youngjewswithibd @thekidwithabag

communities.campsimcha.org.uk

crohnsandcolitis.org.uk

Whether or not they are the magic bullet that will get armies of the obese back into the workforce, as Health Secretary Wes Streeting believes, there’s a huge amount of buzz around so-called “skinny jabs”.

But a salutary note of caution has been sounded by safety authority the Medicines and Healthcare Products Regulatory Agency (MHRA), which has asked doctors to be on the alert for patients who are mis-using weight-loss medications such as Wegovy and Ozempic.

There have been reports of people who are not obese becoming sick after using them to shift a few pounds.

Dr Lisa Anderson, who has a private GP practice at the Wellington Hospital in St John’s Wood, told me that the agency is right to be concerned. “There are a lot of online clinics, and I’m not convinced that they always take a proper history,” she says.

“If someone does want to have weight-loss medication, they should go to a proper clinic and have a face-to-face consultation with a doctor backed by a multi-disciplinary team of a dietician, and psychologist if needed.”

Dr Anderson points me to the NHS guidelines. These stipulate that a patient should have a body mass index of 30, or one of at least 27 together with other factors such as knee pain, type 2 diabetes or cardiac problems. She says she has been asked for the jabs by patients who do not meet these criteria.

“I have heard of people that get it from friends, or get unused supplies or whatever, and are starting it without medical supervision.

“Quite often it’s, you know, they’ve got a simcha coming up, they’re going on holiday. They need to lose a few pounds, they’re not happy with their bodies, and they want to look better.

“I’ve had one patient who was overweight, but who is now so thin that I’m really worried about her.”

Dr Anderson emphasises that prescription has to be done in conjunction with dietary methods and increased exercise. “It’s not a quick fix. You’ve got to change your eating habits.”

She says that doctors also need to factor in the patient’s mental health, as well as potential interactions with other drugs they might be taking. There are concerns about fake drugs flooding the market and supplies that have not been correctly refrigerated also pose a risk. Even if the product is genuine, there can be side effects, including diarrhoea, abdominal pain, vomiting, dizziness and, in rare cases, pancreatitis. The medicines should be completely avoided for two months before conception, during pregnancy and breastfeeding.

“I think over the next few years, we’ll see that they’ve got huge benefits, but you have to understand the pitfalls and potential side effects,” says Dr Anderson. “A doctor should really be in possession of the patient’s full medical records before even thinking about prescribing.

“The take-home message is that they’re a very exciting group of drugs, but get them from the right place and get them from someone who will look after you.”