'I'm running out of time but I'm not giving up' - fundraiser launched to help Sheffield man battling disease
The family of a 29-year-old who’s spent the last 16 years fighting a disease that has torn his life apart are looking for help in finding the care he needs.
When he was only 13, Zehn Sarwar, from Handsworth, was diagnosed with Crohn’s disease, a condition that causes inflammation in the bowels leading to severe, debilitating pain and which in some cases can be life-threatening.
The diagnosis came after a number of hospital visits, as doctors attempted to figure out what was causing the teen’s constant discomfort.
While it may have been a relief to finally have answers, this revelation led to a number of operations and hospital visits that ended up consuming his teen years.
By the time he was heading to college, he had his first colostomy bag and subsequently spent the following two years straight in hospital without a single day of home leave.
“Having a colostomy [bag] when I was younger was quite hard and debilitating,” Zehn told The Star.
“It caused a lot of depression issues and all sorts. It was quite hard to adjust around that as well as just living with Crohn’s.
“When I was young I had lots of self confidence issues, with things like going to the bathroom frequently or how my stomach made noises - I was worried what the other kids at school thought.
“Crohn’s has no cure, It’s more about managing the symptoms. My particular case is very aggressive - it’s more dangerous than the average.”
Throughout this difficult life, Zehn’s relied on his family, who he says have been ‘very supportive’.
Tragically his dad passed away in 2020, leaving his mother and two siblings in charge of his care.
Following complications during a surgery in 2022, Zehn’s life once again was overturned, with his nutrients now being supplied entirely through daily IV fluids, while he’s left taking more than 15 medications a day.
This still hasn’t left him stable, and while the family say that the NHS has ‘done what it can’, they are running out of options.
And due to Zehn’s reliance on what is referred to as a Hickman line - a tube through a vein in his chest that provide nutrients - his time is beginning to run out.
“The line only lasts for a few years before it gets changed,” he added.
“That means eventually I’m going to run out of usable veins. I won’t be able to have the fluids, and I won’t have a way to have the medication.”
Zehn has had appointments in Oxford analysing the possibility of a full stomach and intestine transplant, a surgery that is split across a number of years and is only performed in one place in the country.
In the meantime, the family are asking for support to fund private appointments with specialist gastrologists.
A fundraiser has been set up with a £2,000 target, with the family saying that ‘no donation is too small’.
His sister, Zehnab, wrote: “Despite trying nearly every Crohn’s medication available and pushing through unimaginable pain, [Zehn’s] still not stable. The NHS has done what it can — but we are now out of options.
“It’s just me, my mum, and my brother now - we lost our dad in 2020, and life hasn’t been the same since. My mum has been a tireless carer and advocate for my brother while managing everything alone. We’re physically and emotionally exhausted, but we’re not giving up.