Man's common disease dismissed as 'mental condition' before he almost died twice

A teenager who found his weight plummeting was told his problems were psychological. Karim Ullah was just 17 when he was diagnosed with Crohn's disease after losing three-and-a-half stone in weight.

But initially people thought the cause stemmed elsewhere and was mental rather than physical. The restaurateur from Puckeridge, East Hertfordshire, is now raising awareness of the symptoms he experienced and encouraging others to seek medical help if they suspect something is wrong.

The 51-year-old told how he first started experiencing severe stomach pains at 16 and was diagnosed with the chronic condition, which causes inflammation in the digestive tract, 18 months later. During this time, his weight plummeted from 11.5 stone to just 8.5 stone.

Determined to regain his health, Karim focused on a nutritious diet and managed to return to his original weight during a three-month holiday in Bangladesh. Upon his return to the UK, his surgeon was amazed by his recovery and decided that a laparotomy, an operation to remove part of the intestine, was not necessary.

Karim was then prescribed prednisolone, a steroid medication, which allowed him to live a normal life until his symptoms returned two decades later. In extreme pain, he was rushed to hospital where surgeons performed a laparotomy. However, four years later, in 2014, the pain returned as his intestines had narrowed.

Despite being warned both times there was a risk he could die, Karim survived. He has since recovered but relies on regular medication to keep his symptoms under control.

In 2022, while on a family holiday with his wife, Sultana Satfali Parvin, aged 49, and their children Shakila Karim, 26, and Sonia Karim, 11, he discovered the critical importance of his medication. Forgetting his regular medications, azathioprine and colesevelam hydrochloride, Karim found himself needing to use the bathroom up to eight times a day unexpectedly.

Karim said: "So often I'd have a toilet break, then we'd leave the hotel and be in a taxi to go somewhere and of course my stomach started misbehaving so I would have to rush back to the hotel, leaving my family outside.

"I think so many people have no idea what Crohn's is and how it affects people even when I was really ill (and working as a waiter) colleagues thought I was trying to skive work or thought Crohn's was something mental."

He added: "They had no empathy whatsoever I was someone in pain and real pain, but they thought I had a mental problem". Karim's journey with Crohn's disease began subtly at 16, with intense stomach pains and frequent toilet visits giving no hint of the condition lurking.

"I started feeling very unwell, my tummy started behaving really erratically... then I started getting stomach pains. Then the stomach pains became more and more acute, and irregular."

It wasn't until an X-ray at the age of 17 confirmed Crohn's disease. Looking back, he said: "I was actually very calm I was more relieved that they actually found for once what was wrong because it was the most incredibly frustrating year and a half because nobody knew what was causing all this."

"Every week I'd have blood tests... and I was working full-time at the time doing manual work (as a waiter) and couldn't always turn up for work."

In the same year, debilitating pain ensued, which he linked to stress from losing a business. His condition escalated to a critical point during a hospital emergency when the threat of death became imminent, resulting in surgical intervention that was once considered premature.

"Basically they had to get rid of a load of my intestines because it was so badly damaged. The pain was so severe that it was the most incredible, intense and violent pain I've ever felt. I mean, it was just unbelievable the pain was something else, I've never experienced anything like it because, within a minute of that pain coming on, I would be drenched because the adrenaline would kick in. My head would be sweating profusely and this is me sitting down doing nothing", he said.

Thankfully, he survived and the pain subsided post-surgery. He expressed: "I feel incredibly lucky so many people come away from operations like that with colostomy bags. When it was life-threatening, it got so bad that they tried to actually find a new treatment and they applied for NHS special funding to avoid the operation."

"It got to the stage where I was in a really severe state that they said we can't wait for this treatment. I was more worried about my family than myself."

Since the surgery, Karim has led a "normal life" and takes regular medication. Looking forward optimistically, Karim plans to support the NHS by selling branded merchandise at his restaurant to 'give back'.

And he is calling for more public facilities saying: "There should definitely be more public bathrooms available for people like us to use (in the UK and abroad)."

Reflecting on his time living with the disease, he said: "It was amazing that I came out of my operations alive and I'm just so grateful. The (whole experience) made me massively grateful for things and put my life into perspective."