My cannabis journey: Nigel Burt

Medical cannabis helps me manage the side effects of my congenital birth disorders. 

Having been born with a multitude of congenital birth defects, including a malformation of the heart leaving three holes open, Congenital Short Bowel meaning Nigel had no back passage, colon or sphincter muscle, was missing a kidney, his tailbone and four ribs. He spent most of his early life in hospital. There was also a degree of conjoined intestines which stopped around the belly button area, with the bowel and bladder being attached to each other. Having his first operation at just a day old where a stoma (colostomy bag) was fitted, later they would perform a “pull through” creating a rudimentary back passage. 

Congenital disorders are structural or functional abnormalities that happen when a foetus is developing in the womb. In some cases they can be detected in development, but quite often they are only discovered when the child is born. World Health Organisation statistics estimate around 6% of the world population was born with a birth defect but only 2.2% of children in the UK were born with at least one congenital abnormality in 2020. 

Nigel’s early medical journey

By the age of 10 Nigel had already undergone 21 surgeries including open heart surgery twice, it was at this point he was given a clean bill of health and sent on his way. It wasn’t all plain sailing from there though, the hospital had done as much as they could to create a functioning digestive system, he was still left with the challenge of managing some side effects of being born this way. Whilst Nigel’s life was no longer at risk from the abnormalities, his body still wasn’t as fully operational as a healthily born child. 

“The most horrific thing that’s happened to me is that I used to have to carry a month's supply of nappies to school at a time. This was at age 11 but I still had the nickname “nappy rash” in secondary school. So there’s been some mental scarring too” Nigel says. “My dear mother, rest her soul, suggested I wear her sanitary towels as I got older.”

It wasn’t until Nigel had reached his late teens that he encountered cannabis for the first time. He noticed it had helped but it wasn’t something that he started taking more seriously for the medical benefits until his early 20’s. Up until this point, the awkwardness of needing the toilet so frequently made him struggle in socialising and spending a great deal of time having much fun but that all started to change. “Now I’m a social chameleon!” Nigel exclaims, “I don’t have to worry as much as I used to when I have THC in my system because I feel like my symptoms are under control”.

Nigel’s struggle without legal cannabis access

Fast forward to 2018 and life had really deteriorated for Nigel. With no legal access to medical cannabis his health was in a bad shape and he ended up having a 22nd operation. The operation was a Delormes Procedure where the surgeon removed 8 inches of baggy, scarred bowel at Saint Thomas’ Hospital, London. It was supposed to be a 5 day stay as doctors need to ensure you are capable of having a bowel movement before you can leave - “I was there for 11 days, but there was a great view of parliament and the food was better than any other hospital I’ve been in”. 

A study into IBS patients, who are frequently admitted to hospital, has indicated that patients who report cannabis use have shorter inpatient stays and use less resources before they are discharged, significantly reducing the cost. 

Through all the tests, probes, scans and surgeries it has been determined that the membrane in Nigels bowel is hypersensitive, telling his brain his bowel is constantly full. “As a result it leaves my bowel in constant spasms and cramps where food passes straight through my system so quickly I struggle to absorb nutrients. There is diarrhoea with no warning and it’s persistent”. Compounding that with extensive internal scar tissue and acute IBS - life for the last 10 years hasn’t been easy. “I’m practically incontinent at the age of 45 - that is without THC in my system…

“If I consume cannabis, my metabolism slows right down, my cramps are gone and I can feel my guts relaxing within minutes”.” I can leave the house and trust my bowels, instead of constantly thinking I will have an accident. This is huge. This has given me some kind of life, instead of 30 trips to the toilet (on a bad day) I’ll maybe go once after breakfast like a normal person.”

“The cost and struggle of finding my medicine has always been a huge challenge. Affording the quality and the quantity I need to relieve my symptoms everyday and the supply being infrequent and inconsistent has undoubtedly led to the deterioration of my health” claims Nigel. “Inevitably there have been times, sometimes weeks where I had nothing because I live in a village with poor access and I can’t leave home without it to find any - these are not fun weeks”. “I may not be at risk of death from the state of my condition now which is why the NHS won’t prescribe cannabis to me, but I fear at times that the depression it causes me could be.”

“For ten years I was just leaking and had no way to control it unless I had access to cannabis which at the time was infrequent and the strains I was getting hold of weren't the most suitable for me.” “The pain would sometimes get to an eight or nine out of ten and I would be curled up on the sofa or in bed unable to work, socialise or relax. When I did go out I was petrified of incontinence, I’d wear two pairs of underwear because it would act as some kind of barrier and stop my trousers from marking through. 

Overcoming challenges

Being left without access to cannabis medicine is “frustrating and demeaning” Nigel says, struggling to work full time due to the condition of his health. Previously working at the highest levels of graphic design for global household brands and using state of the art technologies it’s something he would like to get back into and for a moment he did, where he built the website and complete graphic design for the UK cannabis trade show Product Earth. 

He was prescribed Imodium by his GP in 2018 which made his insides burn and left him constipated for days at a time.  “I can’t run if I haven’t evacuated my bowels fully because I will have an accident by not reaching a toilet in time. If I have cannabis instead I have a full bowel movement and I can go running which I like to do every day.” “I’ll run at least 5km a day but now I’m getting good quality medical cannabis. I am managing 8 or 9 km a day.” The running really helps by clearing wind which is hard to do because of the scar tissue. “It relieves a lot of pressure and the “runner's high” created by endocannabinoids does wonders for my mental health”. And it’s true, a study by John Hopkins University showed that there are elevated levels of endocannabinoids in the blood after a raised heart rate due to exercise creating a “dramatic antidepressant effect”.

“A prescription means not having to worry about the police, it’s a huge plus. I would hate to go through the court system because of my medical conditions as friends have unfortunately had to, but in all honesty it has been the neighbours I worry about the most.” 

Despite the battles Nigel has faced he remains upbeat and positive about life “with medical cannabis, I don’t have to suffer until I am finally given the date to have the next surgery”. Nigel also hopes that his prescription will mean he can stay in the best possible health and avoid more surgery in the future. 

Releaf understands that medical cannabis can be life-changing for many people. That's why we offer tailored monthly packages based on your cannabis prescription, specialist consultations for medical cannabis, and a unique medical cannabis card for protection.