The 51-year-old was diagnosed with Crohn’s disease at the age of 17 after losing three and a half stone in weight in just 18 months – but his symptoms have been dismissed as a ‘mental condition’
A restaurateur who was diagnosed with a common disease at 17 after losing a staggering three-and-a-half stone, has revealed that his colleagues used to believe his condition was “something mental”. Karim Ullah, from Puckeridge, East Hertfordshire, began suffering from severe stomach pains when he was just 16 years old.
A year-and-a-half later, he was diagnosed with Crohn’s – a lifelong illness that causes inflammation in parts of the digestive system. During the period from his first symptoms to his diagnosis, Karim’s weight plummeted from around 11-and-a-half stone to a mere eight-and-a-half stone.
Determined to regain his health, he focused on maintaining a healthy 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 left “shocked” by his recovery and decided that a laparotomy (surgery to remove part of his intestine) was not necessary. Instead, Karim was prescribed prednisolone, a type of steroid, which allowed him to lead a “normal life”, until his symptoms made an unwelcome return two decades later.
In a state of extreme pain, Karim 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, now 51, incredibly survived. He has since recovered but relies on regular medication to keep his symptoms under control.
In 2022, during a family vacation with his wife Sultana Satfali Parvin, 49, and their children Shakila Karim, 26, and Sonia Karim, 11, he realised just how crucial his medication was. Forgetting his usual drugs – azathioprine and colesevelam hydrochloride – meant that Karim experienced the urge to go to the loo up to eight times a day without any warning.
Speaking to PA Real Life, he described the inconvenience. 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 believes that there’s a need for more public toilets and suggested, “There should definitely be more public bathrooms available for people like us to use (in the UK and abroad).” He continued: “They had no empathy whatsoever I was someone in pain and real pain, but they thought I had a mental problem”.
Initially at 16, intense stomach pains and frequently needing the toilet didn’t give Karim any clue that this was Crohn’s knocking at his door. Karim described the ordeal: “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.”
Finally, an X-ray done when he turned 17 confirmed Crohn’s disease. Reflecting on his diagnosis, he conveyed: “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.”
That same year, he also started suffering from agonising pain, which he attributed to stress following the loss of one of his businesses. A hospital emergency followed, where he was warned of the high risk of death, leading to the surgery that had been considered years earlier.
He said: “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 added: “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’.
Reflecting on his ordeal, he said: “It was amazing that I came out of my operations alive and I’m just so grateful”. He added: “The (whole experience) made me massively grateful for things and put my life into perspective.”
