My journey with cannabis for Crohns disease: Greg de Hoedt

My name is Greg de Hoedt. I'm 35, and for half of my life, I have been using cannabis to treat the symptoms and manage the progression of Crohn's Disease. Using cannabis as my first line of medicine for nearly 20 years has taught me a great deal about the different strains and types of cannabis suitable for me and several health conditions. 

Safe, fast, effective, sustainable and continuous prescription cannabis has not yet been available to me despite medical cannabis companies being legally able to operate since 2018. In 2010 I was given two years left to live, forcing me to self-medicate against the law without a prescription. As founder of the UK Cannabis Social Clubs, I have been part of developing a model that suits patients' needs first and foremost. Seeing medical cannabis access still not provide the same level of service as cannabis social clubs has been disappointing. However, the current situation has inspired me to get involved with a medical cannabis company and provide better patient service. Enter Releaf, the UK's first medical cannabis dispensary model.  

Growing up with gastrointestinal issues 

Upon reflection, my gastrointestinal health journey started as an infant. My parents said I cried for the first 18 months of my life, and because of that, any of us hardly slept. There were minor bouts of digestive issues growing up that would pop up in phases, like dairy or lactose intolerances that would come and go. Recurring tonsillitis that took me down several times a year, and I was treated by the GP with course after course of antibiotics, refusing to give me a tonsillectomy which finally happened at age 11 when they had become so large they were pressing against each other, and I could hardly swallow. 

From this point on, I seemed to be pretty normal; I never missed a day of school, played guitar in the school bands, was the school goalkeeper in football, started lining up on the basketball team with hurdles and high jump in athletics, once holding the county record for my age group. Towards the middle of my GCSE years, things started worsening regarding my guts. As an adult, I now know I struggled with quite intense anxiety and have ADHD, which I didn't recognise then. Sharp pains with increasing frequency would plague me during lessons. Eventually, after realising I was going to the toilet too often, I agreed to go to the doctor. 

Going to the GP did not help me. If anything, I would say it made things worse. After a prescription of peppermint oil capsules left me feeling like I had my guts on fire for hours and made going to the toilet even more painful and difficult, I went back and asked for a colonoscopy. My mum had read an article about Crohn's Disease and thought the symptoms sounded like what I was going through. Rapid weight loss, chronic fatigue, more than usual toilet trips, and unable to eat because my appetite had vanished. 

College years and cannabis

By age 17, I would come home from college. Instead of making annoying music with my guitar effects pedals, I'd just go to bed, doubled over in pain until I inevitably needed the toilet. At one point that year I developed ulcers that started at my tongue and went right through my mouth and down my throat as far as I could feel. It was like swallowing glass, and that sensation continued to my stomach as the food was reaching there. The GP still did not want to send me for a colon or endoscopy.

That sounds like quite a PG-friendly version of what was going on with me, so be warned, the next bit might be slightly less pretty. Mornings were the worst. I would wake up feeling like my anus was hanging out of me; It wasn't, but the burning, throbbing pressure inside my rectum was unstoppable and made it feel like I constantly needed to evacuate my bowels. I would bleed, not just a little bit on the tissue when I wiped but small volumes of blood. I'd pass this strange mucus and my flatulence was world-class. The cramping sensations throughout my abdomen sometimes made me feel like I had lost my mind. Not knowing it was just extreme inflammation causing these aggravating symptoms, I would sit there and strain, thinking I had to push something out and was severely constipated, which can sometimes happen. 

Chronic Crohn’s Disease

Crohn's Disease is an autoimmune disease characterised by its proinflammatory nature. Medical professionals still aren't sure why the body switches on this immune response and forgets how to turn it off. Still, they do know there are some genetic and environmental contributing factors. Stress has always been a big contributor to my health and quality of life declining, as has not been in control of my diet. 

To not be at complete risk of starving to death from uncontrollable ulceration, I could only eat a few foods that didn't cause extreme pain. This dilemma ushered me into an elimination diet. I ate fish, potatoes, rice, chicken and eggs. I weighed about eight and a half stone which is 53kg. I was no longer on any sports team; I certainly wasn't getting up at 6 am to go and practice shooting hoops for 2 hours before school every day anymore. No one was inviting me out because I was always ill, and going out to eat wasn't possible. 

Within a year of the elimination diet, I realised I couldn't eat wheat and gluten products quickly, which I had a bad reaction to and would cause the onset of horrendous symptoms again. Dairy and lactose joined that. It was around this time, too, that the few friends I made at college during this time smoked a bit of weed and went skateboarding. One such friend was a local church Reverend's son. We would spend weekends skating and smoking cannabis before returning to the vicarage to watch films like Lords of Dogtown, Endless Summer and Keanu Reeves's Undercover classic Point Break. I just had no idea I was self-medicating, which simply allowed me to do things that people my age would ordinarily do. 

Doing this for two years allowed me to put weight back on, socialise, start playing music again, continue my studies and get a part-time job. I refereed youth football games at the weekend, becoming the youngest FA-qualified referee in the country, starting a trend of youth referee qualifications eventually integrated into the national A Level PE Curriculum. There was no way I could be labelled as a lazy stoner. However, my use was still very secret at this point because if my parents had found out I was using cannabis, I would have been kicked out of the family home. 

University with an illness isn’t easy

Fast forward to my second year at University, where I studied filmmaking; my girlfriend and I then moved in with each other. With the best intentions, she wanted to be "grown-up" asking if we could stop smoking cannabis when we moved into the new house. I agreed, having no idea it was my medicine. Within two months though, that familiar downward spiral started to happen again.  I was lost as to why it had happened. 

I went to the GP I registered with at my university and was sent to the hospital with a letter. Of course, I opened the letter on the way to the hospital, and it said that I was a hypochondriac and to not take me seriously. They kept me overnight and sent me for a psychological evaluation. I finally had a colonoscopy after being rushed to the hospital, there and then, the examining gastroenterologist told me I had advanced Crohn's Disease. Rather than this being a moment of horror, it was an absolute relief. I finally knew what was eating me inside out, both physically and mentally. 

The hospital prescribed me a big bag of drugs containing opiates, steroids, synthetic aspirins and immunosuppressants. Telling me, "Go home and take these". There was no discussion about what they were, what they did or why I was taking them specifically, I just needed to follow the prescription amounts. I thought that I had suffered as badly as possible at the heights of pain in my Crohn's journey, but man, was I wrong. 

The pain that these prescription drugs caused me was quite literally indescribable. To feel such aggressive disruption to my nervous system, mental processing, and ability to communicate effectively was devastating. The drug Pentasa made me foam at the mouth and sent my body into shock. Azathioprine made my whole body feel like it was caving in. It made my intestines so raw that I again developed an eating disorder and suffered from malnourishment. I wasn't allowed to be exposed to sunlight as skin cancer and leukaemia are potential side effects of the drug. 

Knowing I had Crohn's Disease, I went to the internet and searched for more answers and potential healing agents. At one point, I did come across a blog site by a woman called Michelle Reigny, a Canadian who had healed herself with cannabis. I dismissed this, though, as I had also seen the same kind of claims made about cucumber for Crohn's. I guess I had given up believing anything helped because nothing I had tried so far had. Even though I had used cannabis before and been healthy in those periods, the penny didn't drop yet. The doubt outweighed the urge to try it again and I didn't want to break my agreement with my girlfriend. 

Revelations for recovery

About a year later, I was in a motorcycle accident after a driver slammed his brakes on the dual carriageway in front of me. It was at this point when I got up off the ground and took off my helmet; I said to myself, "fuck it, I'm sick of this. I don't care if it kills me; I just want to smoke weed again", and it kind of came out of nowhere. I was on antidepressants by this point also and feeling number and number to the world, losing my creativity and struggling to focus on my university studies to the ability I knew I was capable of. 

I had no contacts to get cannabis though, and had to ask an old bandmate if he knew anyone that could get anything. It took about a day and a half, but that first joint was uplifting. The doom that constantly hung over me was gone, and mentally, I started to feel like my normal self that I had felt out of touch with for a long time. I needed to find cannabis from someone in my uni town, which was quite challenging. Pills, ketamine and analogue psychedelics seemed to be much more of the preferred options where I was studying.

I hadn't done it intentionally but stopped taking my antidepressants. I would get side effects if I missed a day in the form of short internal and distracting head buzzes. I had gone over a week without taking any before I realised. I was happier, more involved with my coursework, and not struggling to communicate with customers at my weekend job. Most importantly, I realised that my gut health was improving. I wasn't struggling in agony on the toilet in the morning, and I was putting weight back on because I now had an appetite. 

This renewed bout of health inspired me to research, this time into the benefits of cannabis as a medicine. I wasn't prepared for what I discovered. I had been lied to. Cannabis was not the devil's lettuce or wacky tobacco - for people like me it could be a life-saving medicine. The revelation made me feel like I had been gaslighted by the people trying to protect me, telling me to stay away from it because it is so harmful. It was the thing that was going to save me all along, and I had purposefully chosen to avoid it. 

Getting political 

My GP was unable to prescribe me a cannabis-based medicine. At this time, Sativex was the only available option, which was not licensed by the NHS, meaning my GP wouldn't have been able to prescribe it anyway. She told me to speak to my MP. I met with Henry Smith, the MP for Crawley. I told my MP my situation and asked him to stand up and speak about my case in parliament to further the conversation about accessing cannabis medicines legally. 

Henry Smith said he sympathised; his father-in-law used cannabis legally as a medicine in California, which he found very helpful for arthritis pain. Confusingly, Mr Smith said he wouldn't be raising my dilemma in parliament because "it's not something enough of my constituents want". The thing is, he made this decision without asking the town's constituents. I felt let down. Our MP is our way of having a political voice but he denied it. I knew more was needed to raise wider awareness for people in my situation.

Flare ups: life or death

Another year later, I was struggling with my health again. Despite knowing that cannabis was my medicine, I found it challenging to access good quality. The now educated and experienced me knows I was sold early harvested flowers that had not had time to reach the maturity stage needed for the plant to produce THC or CBD. As a result, my money was going up in smoke (vapes weren't a thing yet), and I was getting sicker. 

In October, I was sent to hospital by my employer because I was struggling to walk across the shop floor. After a few x-rays and a failed colonoscopy, Dr's told me that my Crohn's had progressed so much that I was in great danger. I needed surgery to remove most of my digestive system to give me a stoma and insert a pic line to feed me through my arteries. I'd also need to take a higher dose of the medication already giving me life-threatening side effects. However, even with that, I would still probably live between 2 and 5 years. Telling my parents about this prognosis was soul-destroying, watching them trying to hold back the tears with the thought that they would have to bury their son. 

I was 22; I had my whole life ahead of me. The thought of not living out my dreams wasn't an option. By this point of my cannabis journey in 2010, I had started a podcast. It helped me connect with cannabis activists, campaigners and legal business owners in places with more advanced laws and access systems than the UK. The dispensary model in the US opened the doors to health for me when  National Organisation for the Reform of Marijuana Laws (NORML) invited me to their 40th Anniversary conference in Denver. 

American Medical Marijuana

Gaining my strength back came around faster than I had anticipated. Within six weeks of taking medicinal cannabis daily, I could go on a four-hour hike into the Rocky Mountains of Colorado. At this point, during a climb that exposed some of the most beautiful scenery imaginable, my perspective on my future health shifted. I realised cannabis had given me a second chance. 

The road ahead led me to investigate the emerging legal cannabis industry in the United States. I could tour cultivation facilities learning about the complete operation from seed or cutting right through to harvest and processing, gaining work experience and documenting it on video as I went along. Veteran campaigners invited me to work alongside them sharing with me some of the knowledge they had learned in the 40 year fight that was still on going. I got to see California, Oregon and Washington along the way. They showed me what kind of effort and careful strategy were necessary to achieve incremental change.  

Growing change 

Eventually, it was time for me to come back to the UK, where I would now face the challenge of ensuring I could stick to my current medical cannabis dosage regimen in a country that refused to make progress in this area.  

Due to the lack of positive response from medical professionals and my MP, I took the first steps that would eventually lead to a large shift in the conversation around prescribing cannabis to patients in the UK. I founded the UK Cannabis Social Club in November 2011, a month after returning home to England. There was a proactive response, and we wrote a guide to help patients run communities stoking awareness and providing a safer route of access to cannabis than the traditional black market. 

The campaign to legalise medical cannabis continued at some pace. In 2018 I was invited to speak on the BCC's Victoria Derbyshire show about the need for legal and regulated medicinal cannabis. MP George Freeman, who was also on the panel, invited me to speak at the Conservative Party's Big Tent of Ideas festival, allowing me to discuss medical cannabis legalisation with former Chancellor of the Exchequer George Osborne. 

By the time the medical cannabis campaign was about to peak, the UKCSC had 160 clubs and around 60,000 members combined. We hadn't done our job yet as no one had a legal prescription. Patients, including myself, were still at risk of getting a criminal record because there was no other way for us to get our medicine. 

A change in law

The law finally was changed. Nick Heard, Minister for Policing, announced publicly that cannabis was being moved from Schedule 1 to Schedule 2, meaning specialists could now prescribe it. I was elated. I truly believed from this point on, things would be so much better for me and everyone else in the same situation. 

I was wrong. The NHS still wouldn't prescribe medicinal cannabis. After asking my gastroenterologist at my next appointment for him to write a prescription, my referral ended. He believed cannabis had no medical benefit for me, and I refused to return to the medication I had adverse reactions to. I again had no help from the legal system that was supposed to provide the medical support I needed. Even though the law had changed, there was only one cannabis clinic open. It was almost impossible to get an appointment, and an ounce of medicinal cannabis was £900 with £250 of appointment fees on top. 

Wrong side of the law

In July of the following year, a reader of my published magazine thought it would be a kind act to send some cannabis flowers in the post to our registered address. I was arrested at the post office when I went to pick it up with the red slip. I was held in a cell for 23 hours before being interviewed for an hour and then released. The police took all of my cannabis, a three-month supply of oil and flower that had recently been given to me by one of the collectives that grew for the patients in the club. With no cannabis to control my symptoms, I was in the hospital three months later. I had extremely high inflammation markers, was in chronic, unbearable pain and had lost nearly two stone in weight. 

Being arrested for using cannabis as my medicine when I didn't have a prescription drastically impacted my life. It put my housing situation at risk. My health plummeted, preventing me from running my large membership campaign organisation and stopping me from publishing my magazine. Everything I had worked to build for over a decade effectively died, which was hard to accept. 

My court took four years to call my case. I plead not guilty, opting for a trial by jury. This weight hanging over me for this time is probably the biggest pressure I have had to undergo because I was on bail throughout. Medical cannabis clinics became more prevalent during this time, and the price was almost affordable, finally making it an option for me. 

The day of my trial came. The judge and the prosecutor did not want to try the case as they believed the Crown Prosecution Service had made a mistake in pursuing a prosecution against me. Unfortunately the court could not reach CPS who did not answer the phone so the trial went ahead. The judge allowed me to plead my case. The jury found me guilty on one charge of cannabis possession and not guilty for the cannabis sent to my office. The Judge then discharged the guilty verdict making that charge a spent conviction.

There is a definite psychological difference between worrying about the police putting handcuffs on you and having a legal prescription. The chances of being arrested if the police smell me vaping in public are incredibly slim, so my mind is completely at ease. Even if I get arrested by mistake, I am getting that pot of medicinal cannabis back. The one thing that has been most frustrating about legal medicinal cannabis is it's often hard to get the same strains repeated monthly, making it hard to maintain regular symptom relief. 

Moving forward 

I reached a point where I missed working in the cannabis space after a year of having a legal prescription. More than just my medicine, it has been my life's purpose. The subject genuinely interests me like nothing else in the world because there are many avenues to explore with more information published daily. Releaf just so happened to be starting at the same time that I was looking, and I have to say I have never felt like I have been in the right place as much as this. 

Releaf values being a patient-focused service delivering a new approach to medical cannabis. The dispensary model is built around the patient's needs by promising a continuous supply of the correct medicinal cannabis strains and removing stages of the process. The level of talent and professionalism within the company genuinely blows me away. That has given me great faith in the future of medical cannabis here in Britain.

I am now in a position where I contribute to the medical cannabis patient experience in the UK by being involved in the procurement and quality control process. I speak with British and international cannabis producers to ensure the products are suited to patients’ needs in a way that they need them. This makes me happy. 

My advice to anyone that believes they have a genuine clinical need for a medical cannabis prescription is to stop waiting and take steps to become a legal patient. It removes much stress from worrying about the law and access issues. It ensures that you are supported by doctors who understand the benefits of medical cannabis and the medicine you receive is not contaminated with pesticides that could harm your health. You know exactly the cannabinoid levels and terpene profile you are taking. And obviously, I believe Releaf is a great choice.