Deepan

Deepan Shah featured in the news last year when a new trial began, to test whether stem cell transplants could put an end to Crohn’s disease. This is his story.

I've had Crohn's for 20 years, from the age of 10. I spent 8 months in/out of GP's offices and A&E with them reaching all manner of futile excuses (not wanting to go to school, H-Pylori, many other random excuses that made no logical sense other than clutching at straws) all while I lost about 2 to 3 stone in weight. I then went private, and within a few days of a stool test, I was advised to go back to the NHS, as the doctors were the same, but the team was larger. It started off with a milkshake (modulen trial) diet for 8 weeks and then it was a constant stream of various medications and colonoscopies blood tests etc. The usual battery of assessments with the occasional "umm", "err" and "ooo". Infliximab (original trial) was the one medication that began to work, but only lasted 18 months while I transitioned from paediatrics to adult medicine at St Mark’s. I had my first operation in 2008, a total colectomy, this started my life with a colostomy and has been pretty rocky ever since. 

The Stem Cell trial was mentioned to me by one of those friends, and with my then and current consultant, we talked it over and decided to take a crack at it. The barrage of tests, as I said, would be enough to put most people off, but I kept on. I had no other choice. I'd lost response to all other medication and would have been living off painkillers while the ulcers prevailed. That was unacceptable.

My life has changed, but as it's been so long, it's difficult to know how my life would have turned out had there not been Crohn's, or a diagnosis, or how my life would be without Crohn's.

Mostly my medical care has been brilliant. There's been care, empathy and discretion throughout. Unparalleled. The support of a caring and empathetic consultant has been really helpful, as has the support of an equally caring and empathetic counsellor.

It's made me appreciate the relationships where both sides make the effort to keep in touch and abreast of what's going on. Over the years I've lost "friends" who've just fizzled into another passer-by when the going got tough. Same goes for relationships, everybody is superficial and I don't exactly have positive body confidence after 20 years and 6 operations.

Here is my advice to others who are dealing with IBD as a young person:

Trials are great, but please, please, please read the documentation and do your own research. Don't believe everything you read on the internet, but do read. Ask as many questions as possible. there are no stupid questions. Weigh up the pros and cons, and make sure to focus as much as possible on your education, that's just as important as being well/getting better.

Deepan took part in a trial that he would describe as "more that it was a treatment pathway with exceptional results and the potential for prolonged remission in sufferers with moderate to advanced disease presentation."