Whilst medical cannabis is completely legal and a great method of treating pain symptoms, it’s still something that is available on the black market and there are still people self-medicating through this method. In the first of a four-part series, we caught up with TMCC UK patient Charles Cumming, who opened up about his struggles with Crohn’s disease and his journey into the legal cannabis market to treat this.
“After experiencing the symptoms of abdominal cramping, depression, low energy, anxiety, diarrhoea, bloody stools and weight loss, I was diagnosed with Crohn’s disease in 2012. My condition seemed to be specifically exacerbated through high levels of stress, with flare ups happening after specific intense points in my life.
One of the most unpleasant symptoms of Crohn’s is diarrhoea, and this often inflicted severe pain in my abdomen and resulted in blood stools. Inevitably, this also contributed to water and nutrient loss and, eventually, malnutrition – which also meant that I lost weight, which wasn’t helped by the added loss of appetite that comes with the disease. The constant, and often very frequent, occurrence of this left me feeling like my body was being stripped of everything and I was left exhausted, sore, anxious and depressed.
Varying levels of chronic pain can be one of the hardest symptoms to deal with, from the low level pain to the more severe ‘stabbing’ abdominal pain. When the disease is active, I find myself feeling like a passenger in my own body, unable to control what’s happening but feeling everything throughout. It leaves me feeling completely helpless, which is a definite trigger for my anxiety and depression. The condition also often leaves me with chronic fatigue for long periods, sometimes due to the anaemia that can occur and also due to the inability to properly absorb food when the disease is active. My joints ache, my fingers feel stiff and I get sporadic muscle pain and headaches.
The first medication I was prescribed for my condition was a non-steroidal anti-inflammatory drug (NSAID) called ‘Asacol’, which I then developed a kidney condition called ‘Interstitial Nephritis’ through as a rare side effect. After coming off this medication for a few months, I did see some improvement, but then discovered through one of my routine blood tests that my estimated glomerular filtration rate (eGFR) had dropped to 26. Due to this, it was advised for me to have a kidney biopsy, which confirmed Interstitial Nephritis. This particular condition held no obvious symptoms, but unfortunately had made some lasting and irreversible damage to my kidneys which halved the function that I once had. This diagnosis meant I was immediately put onto a high dose of steroids (Prednisolone), starting at 60mg a day to try and bring the inflammation in my kidneys down. This gave me headaches, nausea, hot flushes to my face, insomnia, increased appetite and noticeable acne – with my facial appearance then causing me further anxiety and depression. This dosage was gradually reduced, eventually down to 10-15mg a day which I took for just over a year. My kidney function did improve slowly, and I was eventually stable around January last year.
Over the period of tapering steroids from 5mg to 0mg, I once again experienced daily chronic fatigue, abdominal pain and nausea. However, most distressingly, I also experienced extreme mood disturbances. Two weeks after completely coming off Prednisolone, my Crohn’s flared up severely and I was prescribed further medication with a four month course of Budesonide. This caused more extreme mood swings, together with tremors, muscle and joint pain, low mood and a general feeling of malaise. Then after quite an extreme panic attack, I decided that the drugs were doing me more harm than good and stopped taking them.
Most recently, I was prescribed further medication (Mycophenolate) as an attempt to further improve my kidney function before coming off the prescribed drugs. On this, I experienced tremors, muscle twitching, chills and shivering, dizziness, fatigue and more of a feeling of malaise. When I then collapsed on a busy train, I once again wondered if I would be better off coming off the medication.
At this point, I had experienced so many challenging and damaging side effects from pharmaceutical drugs, I started looking for a more natural option to manage my condition. After some research, I saw that cannabis had been a successful aid to others with Crohn’s, so I decided to purchase a small amount on the black market to try it for myself. However, I didn’t know the variety or quality and my methods of smoking it weren’t ideal, but it still did instantly make me feel better. At this point, I had insomnia, nausea, anxiety and was generally not feeling very well. I was expecting the cannabis to help me sleep, which it did, but it also calmed me down and helped with the anxiety and depression. It also seemed to manage my headaches and nausea, depending on the variety I purchased.
When my Crohn’s is active, my quality of life declines, and this is something that can drastically change with cannabis. It gives me the ability to function on a basic level and find comfort, distracting me from the distress and low moods and helping me eat when I’m struggling with my appetite. However, due to how I was purchasing this and the association of cannabis as a recreational drug, I would often be questioned by some of my peers as they struggled to see it as a safe treatment, despite my first hand experiences of the positive side effects. The black market contains a small percentage of people who are genuinely passionate about cannabis, who have an apparent focus on helping to improve health conditions. I’ve tried to meet suppliers through local cannabis clubs, but outside of that it’s difficult to know who or what you’re funding when the reliable sources dry up. The cannabis flower available on the black market is also normally high in THC, with very little availability for balanced varieties including levels of CBD. This is where the legal market really stands out, as all these concerns were then eliminated for me and any additional stress associated with trying to get my medication was also removed.
Using a legal prescription of cannabis helps me show others that it’s a legitimate and effective medicine, as when it’s legally prescribed it shifts the perspective from me ‘self-medicating’ an illegal black market substance to being prescribed a treatment via a trained doctor and a legal supply. I also allows me to consistently access a safe, balanced, high quality and reasonably priced product that I can use under professional guidance without breaking the law and putting myself at risk.
When I decided to book an appointment with The Medical Cannabis Clinic, it was a fairly straightforward process that was similar to a lot of other online booking systems I’d used previously. After registering, I received an email that I was able to click a link through to follow up with a confirmation of booking a time, date and specialist that I would be seeing. I was then able to pay for my initial appointment. I was sent a consent form to complete, which allowed TMCC to access my medical records from my local GP, as well as an additional form that allowed me to outline my conditions and current cannabis use. I even received a reminder email the day before my appointment, which told me exactly what I would need to bring as well as providing the link for where I would be meeting the specialist online.
In my appointment, the doctor was friendly, relaxed and explained how cannabis is currently prescribed. We talked honestly about the controversial nature of the medication, and he advised that I start with two different types of ‘granulate’, with the understanding that this prescription could then be changed if I found it to be ineffective. I was happy to be able to have the change to obtain a legal prescription, and greatly valued the care and advise of a medical professional on the matter. I was also advised that the initial prescription could take up to a week to be confirmed, and the delivery of the flower could take up to a month. However, a few days after my appointment, I received a notification from Dispensary Green that my prescription had been accepted and that a payment link would soon follow. After around two weeks, I received a text message from the courier telling me that my medication would arrive the next day.
When it did arrive, it was discretely packaged in a plain black envelope. Inside this, there were two single pots of cannabis ‘flos’, labelled with dosage advice and giving information on the strength of the product. My prescription was a balanced daytime granulate, and one to help me sleep at night which had a higher percentage of THC. I was surprised to see that it was pre-ground when I opened the lids, but It smelt very green with a light hint of citrus and orange, despite still looking similar to the black market products. I was intrigued to see how different this would be, and if the effects would be more specific to my needs.”
To find out more about Charles’ journey and see how the medical cannabis helped his symptoms, stay tuned for the next instalment of this series.