From no solid food for 15 years to eating a pizza one weekend: Joe’s journey with Crohn’s pain

  • IBD pain

  • Crohn's pain

  • Medical Cannabis

  • Patient stories


Leva Clinic

First Published 5/26/2023

Last Updated 6/29/2023

Joe’s journey with chronic pain began when he was 14 years old after returning from a holiday to Spain with stomach cramps. He initially thought that he had food poisoning from calamari. 

Over the next 12-18 months things went downhill for Joe. He began losing weight and was in agony every day. After months of investigations involving tubes and cameras - additionally having to battle a needle phobia at each procedure - he was diagnosed with Crohn’s disease. “I was wasting away.” 

Crohn’s is a type of Inflammatory Bowel Disease (IBD) that causes inflammation, primarily, of the digestive system. By 2011, part of Joe’s gut was necrotic and twisted, and by the time he was about to graduate university he was undergoing a resection to remove it and missing out on what should have been a positive ending of his time at university. 

Person holding pizza

Living with IBD pain

Growing up with chronic pain had its challenges for Joe. His teenage years were impacted by his prescription to strong opiate painkillers such as tramadol and co-codamol. By this time Joe was on a liquid diet. “I couldn’t do anything spontaneous - everything required planning. For each day I was away I needed to take 7 bottles of liquid food.” Even activities like spending time with friends were a challenge when he’d need to rush to the bathroom for extended periods and carry large, heavy amounts of medications on him. 

But Joe made the most of it and was able to work in hospitality and even a pizza restaurant (a point of significance for later in Joe’s life). “I was known as the good cook who would never eat his own food!”. It was only much later that Joe would be able to have very small amounts of food - perhaps a ramekin-sized portion every few days or a biscuit. 

At the peak of his pain Joe was prescribed Morphine and taking up to 120mg per day as needed. Given the nature of IBD/Crohn’s, Joe was unable to be prescribed anti-inflammatories. He was also later discovered to have a cyst in his spinal cord, causing its own pain such as migraines and nerve pain - something he would be prescribed gabapentin for. “I got to know the pharmacist on first name terms!”. Joe has been slowly decreasing his opioid usage since 2016.

Signposted from the NHS

Joe had tried everything for his Crohn’s pain, short of fentanyl. It was his NHS pain specialist who initially suggested Joe look into medical cannabis, and he quickly discovered Leva as a participating clinic in Project Twenty21 (Europe’s largest observational study of medical cannabis). 

Joe joined Leva in November 2021. In the last 18 months and under the guidance of his Leva specialist pain consultant, he’s been prescribed two strains of medical cannabis and has decreased his morphine intake from 40mg in 2021 to 10mg per day. He’s also cut his tramadol usage in half. On top of the medical cannabis, Joe has been receiving talking therapy and attributes his success to both. 

“One strain (of medical cannabis) kills the pain and the other has made me more open and meditative. It’s helped me become a nicer person, be more focused and quiet my mind. It puts the shine back on life.”

Incredibly, Joe says his Crohn’s pain has decreased from a 7-8/10 each day to a 0-3/10. “It’s deleted my Crohn’s pain!”.

Leva is the first private clinic Joe has worked with after experiencing long wait times elsewhere. “Response times (at Leva) are great, the team is friendly, I feel I am able to provide feedback and you’re approachable. There’s no stigma.”

Advice for others

Joe has advice for anyone else considering Leva: “Just give it a try. You don’t know how it’ll help unless you give it a go. If I didn’t contact them it would never have started.”

Now almost 15 years on from his experience working in a pizza restaurant, Joe’s rediscovered the joy of them after his fiance spontaneously suggested they get one.

“Over the course of 2 days I was able to enjoy a pizza!  I never thought I'd see the day…any gastro issues were nearly non-existent. It just blew my mind. Bloody amazing.”

Joe's pizza

Today Joe works in IT and has aspirations to come off opiates altogether and get more predictability with his life, such as being able to go out without having to think through every aspect.

“Anything is possible.”

Joe is a real patient of Leva Clinic. We’ve been working with him since November 2021. He’s not received any financial reward or incentive to share his story. He’s doing so in the hope that it will be informative and inspiring for others. Photo by Jonathan Borba on Unsplash.

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