A dad who was diagnosed with Crohn’s disease at the age of 17 after losing three-and-a-half stone and almost died twice when his symptoms returned in his 30s said that colleagues used to think his condition was “something mental”.

Karim Ullah, a 51-year-old restaurateur who lives in Puckeridge, East Hertfordshire, began experiencing severe stomach pains at the age of 16, and was diagnosed with Crohn’s – a lifelong condition where parts of the digestive system become inflamed – a year-and-a-half later.

From experiencing his first symptoms to getting diagnosed, Karim went from around 11-and-a-half to eight-and-a-half stone.

He focused on eating well and managed to get back to his original weight while on holiday in Bangladesh for three months – when he returned to the UK, his surgeon was “shocked” and decided he did not need a laparotomy (surgery to remove some of his intestine).

Instead, he was prescribed prednisolone, a steroid, and was able to live a “normal life”, until his symptoms returned 20 years later.

Karim was rushed into hospital as he was in extreme pain and surgeons this time performed a laparotomy but four years later, in 2014, the pain returned again as his intestines had narrowed.

Miraculously, Karim survived, despite being told both times there was a chance he could die, and has since recovered but is on regular medication to keep his symptoms at bay.

In 2022 he went on holiday with his wife, Sultana Satfali Parvin, 49, and their two children, Shakila Karim, 26, and Sonia Karim, 11, and discovered just how important his tablets were.

Having forgotten to bring his medications on the trip – namely azathioprine and colsecelam hydrochloride – Karim needed to defecate at least eight times a day with almost no warning.

He told PA Real Life: “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.

“They had no empathy whatsoever – I was someone in pain and real pain, but they thought I had a mental problem.”

At the age of 16, Karim began getting extreme stomach pains and had to use the bathroom more often – little did he know, this was his first warning sign of Crohn’s disease.

Karim explained: “I started feeling very unwell, my tummy started behaving really erratically… then I started getting stomach pains.

“And then the stomach pains became more and more acute, and irregular.”

Over a year-and-a-half later, at 17, an X-ray revealed he had Crohn’s.

“I was actually very calm – I was more relieved that they actually found out what was wrong because it was the most incredibly frustrating year and a half because nobody knew what was causing all this,” Karim said.

“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.”

From having his symptoms to getting diagnosed, Karim went from weighing around 11-and-a-half stone to just eight and-a-half stone and felt highly fatigued.

In need of a break, he went on holiday to Bangladesh for three months, “ate well” and managed to put on the weight he had lost.

When he arrived back in the UK, his doctor was “shocked” that he looked so well, so decided that Karim would be fine taking medication rather than having any surgery.

He said: “I was so shocked when they said I didn’t need it, I came back from Bangladesh ready to go under the knife.

“I was happy to have the operation so was quite surprised.”

Karim lived a “normal life” until in 2010 he had to keep “running to the bathroom”.

“Everywhere I’d go I had to learn where the toilet was… and in car journeys I’d be panicking if I needed to go to the toilet,” he said.

The same year, he also began experiencing excruciating pain, which he believed was caused by stress after he lost one of his businesses.

He was rushed into hospital, was told it was very likely he would die, and had the surgery doctors had considered when he was 17.

“Basically they had to get rid of a load of my intestines, because it was so badly damaged,” Karim explained.

“I became so ill that I had the most incredible, intense and violent pain.

“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.”

Fortunately he survived and the pain went away after the surgery.

However, four years later in 2014 the pain returned and it turned out he had a stricture – his intestines had narrowed because of scar tissue in its wall – and was, again, told he could die.

He said: “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 operation, Karim has lived a “normal life” and takes regular medication.

However, Karim was reminded how important his medication is when he forgot to take it on holiday in 2022.

Karim, his wife, and their two children went to Malaga for five days, and when they got to their hotel, he realised he had not packed his tablets -azathioprine, an immunosuppressive, and colsecelam hydrochloride, for his cholesterol.

Karim needed a prescription to get new medication abroad, and doctors could not do so in time.

He said: “It was very annoying, infuriating, that I had to be without them.”

Karim constantly needed to go to the toilet, around eight times a day, often having no choice but to buy food or drink in order to use toilets in cafes and restaurants.

He 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.

“There should definitely be more public bathrooms available for people like us to use (in the UK and abroad).

“I think people who suffer from extreme Crohn’s should have something like a blue badge for using the toilet.”

Karim’s family could not help but get frustrated with him.

He said: “They were not very happy with me, and my eldest daughter said, ‘Daddy, I’m not coming on holiday with you ever again.’”

Looking to the future, Karim is hoping to raise money for the NHS by selling apparel at his restaurant as his way of “giving back”.

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.”