My 28-year journey with cannabis: from terminal disease to post-pharmaceutical healing

Sarah Jane Godfrey (Bucknell, UK)

Drugs and Alcohol Today

ISSN: 1745-9265

Publication date: 4 June 2018

Abstract

Purpose

The purpose of this paper is to convey the experience of medical cannabis users and growers in the UK.

Design/methodology/approach

Biography and personal ethnograpy.

Findings

Medical cannabis users are forced into cultivating their own medicine.

Research limitations/implications

Single case study.

Practical implications

There is an urgent need for policy change to enable medical cannabis users to access their medication easily and affordably.

Social implications

A rising number of people are denied their constitutional right to health by a misguided policy.

Originality/value

This study fills a major gap in the literature on medical cannabis growers.

Keywords

Citation

Godfrey, S. (2018), "My 28-year journey with cannabis: from terminal disease to post-pharmaceutical healing", Drugs and Alcohol Today, Vol. 18 No. 2, pp. 137-146. https://doi.org/10.1108/DAT-08-2017-0042

Download as .RIS

Publisher

:

Emerald Publishing Limited

Copyright © 2018, Emerald Publishing Limited


Part 1: terminal disease

My use of cannabis as medicine began in 1989, when my Crohn’s disease started aged 17. I already smoked tobacco, so I began smoking joints of tobacco and hash to ease my symptoms of pain, nausea and diarrhoea with blood in it. But cannabis was difficult to get and expensive, so my housemate introduced me to her friend, James, who sold hash. It was love at first sight, and James showed me how to smoke hot knives and pipes for my symptoms.

In 1989, I was training to be selected for the junior Olympic dressage squad in Surrey; I started riding without stirrups and reins and the horses went better that way. But Olympic rules meant you had to use whips, spurs and double bridles, and I started questioning my vocation. Not long after this, I collapsed and passed out with pain for the first time, and came round in Guildford hospital, where I spent five days, then was discharged without a diagnosis. My painful symptoms, no diagnosis and the fact that dressage now felt cruel to me led to a nervous breakdown. I was now too ill to teach and ride for 4-5 hours daily as I had done. I wanted to live with James, but my father would not let me, so I ran away with him, to stay with his family in Lincoln.

James, his mother and myself started pooling our resources to make buying hash more affordable. But eventually we had to find our own place and, without a diagnosis, I could not claim sickness benefit; without benefits or a job, I could not rent. We became homeless and found empty houses to break and enter. It was squat or sleep on the streets, and I found myself in dangerous situations.

I still could not get a diagnosis: the local GP was dismissive of me when I took a stool sample in for testing. I was worried I had bowel cancer due to the blood, but he refused to test it, told me I was neurotic and prescribed β blockers, which made me feel worse, so I threw them away. I did not tell the GP about smoking hash as he was so judgmental. My health continued to deteriorate and now there was mucus and pus in my stools as well as blood.

I found cooking with hash more effective than smoking, but I could rarely afford to eat it. The only way to afford enough hash and avoid dangerous situations was to become a hash dealer, but it was impossible to find the money to start.

We left the squat after being offered an emergency council B&B, which was followed by renting substandard housing after finding low-paid and dangerous production line work. My sister lived in Hay-on-Wye and we decided to move there. She got me a job at a local hotel, and we stayed with her for three weeks, before finding a showman’s caravan to rent on the outskirts of a nearby town. But my health kept deteriorating and I developed an abscess in my groin; I was finally taken seriously by the local GP, and referred to the local hospital.

By the time I got a diagnosis the day before my 21st birthday in 1992, I was given less than six months to live without a permanent ostomy bag, after being diagnosed with Crohn’s and severe ulceration and numerous polyps throughout my terminal ileum, my entire colon and my rectum. All I could think was, “How will I tell Mum?” because I came home from the hospital to find a “Happy 21st” bouquet of flowers from my mother. I rang her the next day and told her, which was difficult, partly because her sister had secondary breast cancer.

I was opening my bowels 20 times daily with blood, pus and mucus in my stools, and passing out with pain every time, as well as vomiting daily. I was prescribed conventional Crohn’s drugs, such as Salazopyrin, Mesalamine and antacids, but they all came straight up or passed straight through me whilst aggravating my symptoms, so I stopped taking them. My gastroenterologist said there was one more option to try before the bag, and that was a high dose of steroids, the same dose of the same steroid as my aunt who had secondary breast cancer. We wrote to each other with tips on how to cope with the side effects. Sadly, my aunt died two years later.

The steroids improved my symptoms, and I gained weight and was opening my bowels ten times daily instead of twenty. But after one month, my consultant said that the steroids had given me osteoarthritis and I had to reduce them slowly. As soon as I reduced by one a day, the symptoms came back worse than before: I started passing bits of skin as well as blood, pus and mucus. I fished them out of the toilet and showed James, spreading the pieces of skin out on toilet paper to try and see what size and shape they were, but I had no way of telling where they had come from and gave up trying. I was now incontinent 22 times a day, passing out with pain every time I opened my bowels and vomiting daily. I also developed iritis, skin rashes and bruising, and my hair started falling out. I finally accepted that I was dying.

The pain was extreme and I smoked 3.5 grams of hash daily as analgesia, mostly in hot knives, which James gave me continually. James and my mother insisted I have the bag, but I refused. I accepted my death, but did not realise how slow and agonising death from ulceration was. My mother begged me to try an alternative, even though I asked her to let me die, and she booked an appointment with a medical herbalist she had found in Kent called Anita Ralph, who had previously treated Crohn’s successfully.

My mother drove me to see Anita in Kent; I smoked my hash pipe all the way. Anita was kind, and while she gently examined me, I asked her why bits of skin went down the toilet after the steroids. She replied, “We just don’t know. Steroids have a thinning action on the skin, so there may possibly be a connection, but I can’t say. Using steroids to heal ulcers is a bit like using a sledgehammer to crack a nut, because pharmaceuticals take the active ingredient, isolate it and synthesize it, whereas plants contain not just the active ingredient, but also many other compounds that balance out the effect of the active ingredient”.

Anita seemed to believe that herbs could heal me, but I did not; how could plants save me when the strongest pharmaceuticals could not? But I had to follow her instructions for my mothers’ sake. So in 1992, I started an eight-week fast with slippery elm powder and herbal tea[1], which Anita called a “non-surgical rest of the bowel”. The herbal tea and slippery elm powder were instant analgesia for my stomach and bowel. Fasting helped, because by then, every mouthful of food or sip of water felt like swallowing razor blades. I was angry at my situation, and raged to James about it. He listened calmly and passed me my herbal tea, slippery elm and hot knife, saying, “This cost your mum a lot of money. Smoke this, drink that, and stop ranting”. It worked: I inhaled the hot knife, drank the medicine and was quiet until the pain was unbearable again.

James kept giving me hot knives and herbal medicine, but the only benefit money I was receiving was £30 per week and being ill was expensive. Fortunately, James made contact with someone who supplied us with a larger amount of hash on credit and we started selling small amounts to cover some of my consumption. My symptoms continued to slowly improve and Anita told me to introduce raw juiced beetroot and carrot after the first four weeks of fasting, as I would be low in nutrients. My mother bought me a juicer and James made me juice. Then after eight weeks of fasting, Anita told me to slowly and carefully introduce foods one by one, the first one being porridge made with oats and water. I relearned how to eat by chewing each mouthful 20-30 times: if I did not chew that much; I passed out from the pain of eating. I still suffered from daily nausea and retching, but as long as I had slippery elm and tea, it did not progress into vomiting. My diet was vegan, extremely restrictive and plain, but it made eating just about bearable with cannabis, herbal tea and slippery elm powder.

The ulcers and polyps slowly healed, my symptoms slowly improved and my Crohn’s started going into remission. My life had been saved, but scar tissues had formed where the ulcers had healed, and my bowel felt like it was tearing apart as food travelled past the scarring. I still had daily nausea, which progressed to retching, then vomiting if I did not eat every two hours and take slippery elm. The diarrhoea and incontinence had reduced by 50 per cent.

I developed another abscess, this time at the base of my spine next to a collapsed disc, at the top of my left buttock. James and I treated the abscess with cabbage leaf poultices but the infection never seemed to go. The abscess became semi-permanent through the summer and I asked James to break open the skin every day and let out the pus because the pressure was unbearable and I had enough of doctors. Then our landlord asked us to move out of the mobile home we were living in because it was a summer let only and the council would not allow winter lets. We parted on good terms but could not find anywhere else to rent, so we bought a 39-foot-long bus on a repayment plan.

For the next few years, I was a “new age traveller” who was too ill to travel more than 25 miles to the next park-up. Going to the toilet outside was challenging because I never made it in time before my bowels opened. I discussed this with Anita, who explained that walking activated the latissimus dorsi muscle, which helped slow bowel peristalsis. She recommended eating raw garlic as an antidiarrheal, which helped, so I persevered. Raw garlic became another one of my staple foods/medicines, alongside slippery elm and herbal tea.

If I ingested sugar, wheat, dairy, meat, alcohol or anything processed, oily or spicy, it made me pass out with pain and pass blood again. I had to accept that “normal” food and drink were out of bounds to me. I had to start eating fish as I was losing weight and was unable to digest plant-based protein such as nuts, lentils, beans, etc. Soya was completely indigestible. I studied diet and herbal medicine whenever possible, buying second-hand books because there was no internet then.

Part 2: fight for life, again

I loved living on the bus, but despite my strict protocol, the abscess kept growing. I reluctantly ended up at the hospital again having surgery to drain the abscess. But when I came round from the anesthetic, I found I now had a hole approximately 5-6 cm in diameter. The abscess had been smaller than that before surgery and I did not understand why the hole was so large. The surgeon apologised: he said there was so much scar tissue that they had had trouble cutting through it. I was furious and asked for a second opinion, but my consultant gastroenterologist refused and we started arguing. “But it’s my legal right to a second opinion!” I shouted. He glared at me and stormed off, and I was discharged without a second opinion and with a deep open wound, called a “sinus”.

The district nurse came out to my bus every day to pack the wound with approximately 12 feet of ribbon gauze. It was like an agonising and gruesome conjurors trick when she pulled the bloody gauze out. Anita sent me marigold tea and a bottle of garlic oil to rub on my buttock as the wound slowly healed. James continued to give me hot tongs (antique hair curling tongs replaced hot knives for ease of use) as I learned to cope with a deep open wound at the top of my left buttock, close to a collapsed disc in my spine, whilst attempting to re-train my bowels, whilst living off-grid with no running water and an outdoor toilet.

My mother found an NHS Crohn’s clinic at St Bartholomew’s Hospital in London and booked me a private appointment with the gastroenterologist there, called Professor Farthing, which cost £85. My parents paid the bill, as I was still living on £30 a week. Professor Farthing was a bus enthusiast, which helped, and he booked me a place in his NHS clinic. I had to travel by train from Hereford to London every four weeks for the clinic; the guards on the trains were helpful, as I was often too ill to remember what I was supposed to be doing. I smoked a hash pipe on the train, as I did most places, and no one seemed to notice because I was discreet.

The gastroenterologist that I had argued with at my local hospital refused to send my notes to London. “We’ll do our own tests then”, said Professor Farthing. So I spent a week in St Bart’s having tests, smoking hash pipes and roll-ups of tobacco on the fire escape. The doctors and nurses knew I was smoking hash, and did not have a problem with it. Professor Farthing’s wife, Dr Maclean, was the Head of Radiography and performed a barium scan on my bowel. When the barium reached my colon, she was shocked, and pointed to the screen, saying, “See that? Your descending colon wall is a quarter of the thickness it should be. This is the worst scarring I’ve ever seen in a bowel”. I remembered the bits of skin that went down the toilet and realised this was the result.

Next was a bone density scan, which diagnosed osteoporosis. The doctors said that my bone density was very low and my calcium levels were so low that if they did not improve, I would need calcium injections directly into my bones. They also said I was deficient in vitamins D and C and I had chronic B12 deficiency and pernicious anaemia. As I was wheeled out of the scanner unit, I felt shocked. In under 5 years, I had gone from training horses for 4-5 hours daily and lifting 60 kg, to being a wheelchair user, malnourished and underweight with an agonising disease that had nearly killed me, and which came back whenever I broke my strict protocol.

Professor Farthing diagnosed a peri-anal fistula, a hole in my rectum, which was causing the abscesses. I was discharged after five days of tests, still very ill. The vitamin and mineral supplements I was prescribed aggravated my symptoms; I asked Anita’s advice. She said that supplements did not only contain vitamins and minerals, but also other ingredients such as chalk and silica, and were harder to absorb than plant-based forms of calcium. She advised me to swap my sunflower spread for tahini, an excellent plant-based source of calcium, so I did.

But the abscess continued to grow, as I was losing weight again and went a yellowy-grey colour; I saw the local GP who diagnosed septicaemia. I delayed going to hospital due to my mistrust of doctors, but the abscess became so huge that I had no choice. By now, diarrhoea had been leaking into my body through the fistula for approximately fourteen months. In April 1994, aged 23, I was driven to A&E in London by my mother (I refused to go back to the local hospital) where the abscess was drained. The next day the surgeon hugged me, saying, “I don’t know how you coped with the pain, let alone the septicemia: I removed over a bucket of pus from the abscess. You’ll probably need a bag; your only chance of avoiding one is to be referred to a specialist fistula hospital, St. Mark’s”. I was shocked to hear the word “bag” again, but was amazed at his kindness and relieved he had cut through the scar tissue so neatly, leaving a hole approximately 3 cm in diameter. Professor Farthing told me I now had a huge cavity where the abscess had been.

I was transferred to St Mark’s for three surgeries. The fistula was laid open by cutting through my buttock, rectum and anal sphincter muscle, to enable it to heal without a bag. A Seton stitch, a loop suture, was inserted through my anal sphincter muscle to help close the wound and help retain continence. I spent three months in hospital with an open wound that was approximately six inches deep and six inches long and which took four months to heal.

I refused all drugs apart from analgesia, and was forced to sign a legal disclaimer when I refused heparin injections. My mother organised a rota with my family to bring me food when she could not; my recovery depended on not eating hospital meals, which were poor quality and aggravated my symptoms. Every time I opened my bowels, which was six times daily by then, the wound filled with diarrhoea, which felt like acid on the open flesh.

My wound had to be digitated, irrigated and packed four times daily. “Digitation” means manually breaking any bridges of flesh that have formed inside a wound, to prevent early skin closure over the cavity and to prevent pockets of infection forming. My mother was trained to digitate, irrigate and pack my wound; it was large enough to fit her whole hand into. The Seton stitch had to be turned every day to prevent skin healing over the loop.

The wound management was agonising, and I went through so many failed pain relief experiences that became suicidal. I was injected with morphine, but the nurses, who were understaffed, would be too busy to come back and digitate, irrigate and pack the wound until 1-2 hours after the injection, by which time it had mostly worn off. Daily agony became normal again and I started suffering from waking night terrors. After four weeks, I was given Entenox gas which worked, but by then, I had been through a month of deep wound management without effective analgesia.

James sent me an ounce of skunk in the post to the hospital which I smoked daily in pipes and joints. In the UK, the word “skunk” has become a generic term for any high THC strain of cannabis containing <1 per cent CBD and 15-22 per cent THC with a ratio of approximately 1:65 to 1:110 CBD: THC.

Once, I experienced a paranoia attack on my way back to bed after smoking a joint. This was caused partly by the stressful situation I was in and partly by smoking approximately 1:100 CBD: THC cannabis with tobacco. This ratio can cause anxiety, paranoia and other mental health problems in some people who are predisposed to anxiety or mental illness. CNS stimulant drugs, for example, tobacco and alcohol, exaggerate its effects. However, ratios from 65:1 to 110:1 CBD: THC containing 15-22 per cent CBD and <1 per cent THC have anti-psychotic effects (Isegar and Bossong, 2015) and are an effective treatment for anxiety (Crippa et al., 2010) depression, epilepsy (Porter and Jacobson, 2013) and many other mental health conditions.

I preferred hash over skunk, but I had run out. I was unaware until 2014 that the hash I craved contained 1:1 CBD: THC and the equal ratio of CBD to THC is an effective treatment for Crohn’s and many other conditions. GW Pharmaceuticals’ Sativex is 1:1, which, ironically, I was to be refused funding for 22 years later. The UK Government must re-schedule cannabis and encourage the use of ratios and percentages instead of using generic terms. This would enable patients to collaborate with cannabis producers, oil makers and doctors to find the optimum ratios and percentages for their conditions.

My mother bought me hash when I had smoked all my skunk; the nurses said they knew cannabis worked and had no problem with it. I shared my pipe with two other patients who agreed that cannabis was more effective than morphine.

I was discharged from hospital dependant on opiates. I became bedridden, developing pressure sores from being forced to lie in one position continually due to the constant pain. My life had been saved twice without a bag, but I was still left with agonising scarring in my digestion system where the ulceration had been. The scarring from the fistula made any movement painful, and affected my sciatic and femoral nerves, causing painful muscle spasms.

Part 3: the long, hard road

I was eventually awarded disability living allowance, after being forced to go to a tribunal. James was my 24/7 carer and helped me with everything, from eating to going to the toilet, and I had to wear incontinence pads due to my immobility. I was diagnosed with complex post traumatic stress disorder (CPTSD) and psychosocial problems. The waking night terrors and panic attacks continued. If we forgot my three-monthly B12 injection, the symptoms of Alzheimer’s-type confusion and exhaustion were overwhelming. Once, after missing my injection for nine months, I forgot where I lived and started to forget my own name; it was terrifying. My memory returned soon after the injection.

I was prescribed 250 mg oramorph, 200 mg diazepam, 360 mg dihydrocodeine, 120 mg mogadon and 200-400 mg carbamazepine daily. My life was so painful that I started making out a living will, not because I had anything to leave behind when I died, but so my parents would know when I committed suicide, it was because the pain was unbearable. My doctors said that my diet was too restrictive and dangerous, but I ignored them. Every few months I questioned my decision to refuse the bag: would my life be less painful without my badly scarred bowel? The people I knew of with Crohn’s and permanent ileostomies had to be periodically fed through a Hickman line in their necks, and they were all on the same high doses of morphine, with limited mobility. I decided that with or without a stoma, there were no easy answers.

I still suffered from daily nausea and stomach pain which progressed to retching then vomiting if I did not have slippery elm and food. I was diagnosed with gastritis. If I did not eat every 1-2 hours, I collapsed with hunger, exhaustion and pain. I could not even leave the house without food, herbal tea and slippery elm or I became very ill. I also had to take a memory foam cushion with me to sit on, due to pain from fistula scarring and my hip.

Once I forgot to take my food with me when my mother took me out to a pub, and I ended up on the floor retching, half unconscious, my stomach in agony. My mother ran to the pub kitchen and found the only food plain enough for me, which was half a cucumber. She fed it into my mouth for me and I started to regain consciousness and was able to start chewing and sit up. I never went out without food again. I subscribed to magazines Living Earth and What Doctors Don’t Tell You; the food and pharmaceutical industries appeared to be based on profit, not long-term results.

After 14 years on industrial amounts of prescription drugs, I finally found a GP sympathetic to my protocol and began to slowly reduce my medication. It had to be slow; stopping a long-term benzodiazepine dependency too quickly can cause seizures. The oramorph was causing bad side effects: James had to set alarms every four hours or I suffered withdrawal symptoms of sweating, shivering and diarrhoea. The oramorph was also causing bowel spasms. I was still smoking 3.5 grams of hash daily in pipes, hot tongs and joints, and now needed an inhaler due to my continued heavy smoking.

In 2007, I managed to finally come off oramorph and diazepam after years of slow reduction. I slowly became more mobile, and was able to get around with a walking stick instead of two crutches and a wheelchair. I found that swimming was the only bearable form of exercise, so I did my own water therapy whenever possible. A colonoscopy revealed that under my protocol, approximately 50 per cent of the scarring in my bowel had healed.

In 2008, I split up with James after over 18 years together, as our relationship had been permanently changed by my illness; we could not break out of the patient/carer roles as I became more mobile, but we stayed good friends.

I started growing cannabis indoors with help from a friend because commercial cannabis was expensive and always aggravated my stomach pain, CPTSD and cognitive dysfunction. Herbal medicine was expensive even with my parents help and I had to find a way to make my own. I started making cannabis tinctures with brandy, but commercial alcohol aggravated my Crohn’s, so I had to learn to make my own alcohol. In 2009, I bought a still and started learning how to produce alcohol at home.

In 2010, I met my next partner, J, who had plenty of cannabis-growing experience. He taught me to grow hydroponically, which was less labour intensive.

In 2012, I experienced an unknown cardiac event and was diagnosed with a heart murmur. I gave up smoking tobacco and started vapourising cannabis. My heart and lung problems improved and I stopped needing an inhaler. I had another bone density scan, which showed that I now had osteoporosis mildly in my left hip: tahini and targeted exercise had worked, and the “incurable” osteoporosis was nearly gone. But the scan also showed I had a prematurely aged and narrowed left hip, probably from being bedridden for so long.

Part 4: post-pharmaceutical healing

Then, in December 2013, I was contacted on social media by someone who sent me cannabis oil. I was amazed by its effects: instant treatment for my brain fog/cognitive dysfunction and CPTSD, and extremely effective as analgesia, anti-emetic, antacid, anti-diarrhoeal, anxiolytic and anti-insomnia. I immediately started making it myself with help from J. I thought it would be straightforward to take a tincture, evaporate the alcohol and make FECO (full extract cannabis oil), but the first time we made it, by evaporating it at 100° C, the oil tasted vile and aggravated my nausea and stomach pain. J told me that at a free festival in the 90s, he met somebody who knew scientists that were working with cannabinoids, who told J that cannabinoids “shrunk” at high temperatures. J felt that human blood temperature would work, which also matched what I had learned from Anita about not exposing herbs to extremes of temperature.

So we made oil at 37°C: it was very different and far more effective on my stomach pain, nausea, malabsorption, fatigue and cognitive dysfunction. However, the oil still tasted bitter which aggravated my nausea, so I continued to experiment with distilling solvents. Distilled organic cider had the sweetest taste, so I settled for that, hoping that it also contained polyphenols. J showed me how to wash the tannins from the oil after it was made, which improved absorption and taste, although the oil had to be dried after washing.

Despite managing to come off oramorph, diazepam, mogadon and carbamazepine over the years, I could not stop taking dihydrocodene because without it, the pain and diarrhoea were unbearable. J had helped me replace some dihydrocodeine with hash bhang, which is a traditional Indian cannabis drink and is a fast and economical way to medicate.

But the dihydrocodeine were now causing more pain in my duodenum and ileum than the other pain and diarrhoea that they were helping. So in February 2014, with encouragement from J, I stopped taking dihydrocodeine completely and detoxed from my 18-year dependency. I had severe vomiting, incontinence and pain for the first month: J made oil and fed it to me on an antique silver spoon which held exactly 1 gram of oil. I had to ingest 7 grams of FECO and 7 grams of hash daily to make the vomiting and incontinence bearable and to prevent a drastic weight loss. By the second month, I was able to reduce to 6 grams of hash and 6 grams of FECO daily; by the third month, I reduced to five grams each daily, and so on, until I got down to 3 grams daily of each, where I stabilised.

I continued to reduce my oil and hash consumption whenever my health allowed, and at the time of writing this, I have stabilised at approximately 1 g of FECO and 1 g hash daily. We infused FECO in coconut oil to make suppositories to heal the scarring in my rectum and anus, which I also used topically on my left buttock and hip. I tried ingesting the infused oil but it had a laxative effect, and I had to stick to ingesting FECO. My consultant at St Mark’s wrote me a letter saying that cannabis oil is an excellent medicine for me and I wished to be prescribed it. I sent a copy to my MP with a letter I had written, telling him I was forced to grow my medicine illegally.

In summer 2014, I started raw-juicing cannabis, which is non-psychoactive, but the juice caused vomiting in myself and my friends. I repeated the experiment (with two less volunteers this time!) and we all vomited again after drinking it. J and I were certain that the commercial mineral salt hydroponic plant food I was using had caused the vomiting: it was the most likely candidate because we were accustomed to contamination from plant food when smoking commercial cannabis. I changed plant food, the vomiting stopped, and I vowed to never use commercial mineral salt-based food again. I gradually swapped shop-bought hydroponic food for home-made and started studying living soil and home-made hydroponic food.

I managed to get my oil tested through other activists on social media: the oil we were making at 37°C was 1:1 THCA: THC. It seemed most effective at 37°C, but it still made me slightly tense. My aim was to make 1:1:1:1 CBDA: CBD: THCA: THC oil in the hope that the anxiolytic effects of CBD would eliminate the tension.

The scarring in my colon was still very painful despite my oil intake, so I discussed this with a friend on social media, Harm Hids, who makes and studies water-soluble cannabis oil for Crohn’s patients, including his son, in the Netherlands. Harm advised swapping to enteric-coated capsules to ensure oil delivery closer to my colon; the improvement in pain was so great that I used enteric capsules from then on, despite the increased cost of the capsules.

Every 28 g of cannabis gave approximately 5 g of FECO, so it was difficult keeping up with my own demand. Friends who grew donated me trimmings and there were many times when I had to buy commercial cannabis at £165-185 per ounce.

Before making oil, I was growing strains such as Skunk no. 1, which contains <1 per cent CBD and 15-20 per cent THC, with ratios ranging from 1:65 to 1:100 CBD: THC. I grew them specifically to smoke and cook with, and in this form, they were effective for my pain, diarrhoea and insomnia. But I soon discovered that they caused me paranoia and anxiety when made into oil, especially when taking grams daily.

I had many paranoia attacks which were extremely unpleasant until I realised that I needed an equal amount of CBD. I spent most of my time studying the endocannabinoid system, research papers (Izzo et al., 2009) and seed catalogues. But I found it impossible in 2014 to get strains that were high enough in CBD, so I started making oil from hash that contained approximately 10 per cent CBD, which was enough to ease my paranoia.

J and I noticed our old nasal fractures straightening approximately eight to ten weeks after increasing CBD from <1 per cent to 10 per cent (Kogan et al., 2015). But I had quality concerns after seeing some unknown residue one day during oil making with Moroccan hash, so I stopped buying Moroccan and bought more expensive hash. But more expensive hash contained more THC, and I found it caused me anxiety and paranoia. I had it tested and it contained 1:4 CBD: THC. Interestingly; 1:4 hash did not cause me anxiety and paranoia when I smoked it, unlike when made into oil.

In 2015, I was donated CBD seeds, so I was not forced to use hash for CBD anymore. My CBD levels increased to 16 per cent, which made a noticeable difference to my osteoporosis and anxiety. But I found it so difficult to make enough ethanol that I started making two different oils, one at 85°C where I reclaimed the alcohol vapour in a closed loop system using a home distiller machine, and one at 37°C. We drew up plans for a vapour reclaim unit so I did not waste ethanol when making oil at low temperatures, but unfortunately we never had the time or money to make it.

In 2015, J and I split up, and I found myself with no help. I collapsed with exhaustion on a daily basis for eight to ten weeks due to the hard work involved in my protocol and growing and making oil. My Crohn’s started coming out of remission, I had a nervous breakdown, and was forced to ask social services for help. I wanted to tell them about the oil, but my parents advised me not to. I asked my consultant to write a letter for social services stating that I kept my Crohn’s in remission with my dietary and herbal protocol so that I could get help with it. My consultant obliged.

In 2016, J and I got back together and split up again, but we stayed best friends and grow partners. I became well enough to tolerate fermented foods and started studying the microbiome and home-made probiotic food. Unlike me, J experienced an inappropriate inflammatory response to my sauerkraut, which he felt was connected to our different blood groups. I read about blood markers and gut bacteria; J appeared to be correct. I realised that individualised healthcare is essential because factors such as blood type and genetics profoundly influence our health.

My health slowly improved and I was able to introduce more raw food into my diet, including non-psychoactive raw cannabis foods. I was now able to tolerate infused oil without any laxative effect, so I started making medicated foods and advising others on diet, herbal tea and oil making.

I finally managed to make 1:1:1:1 oil and it had the effect I had hoped for. My first batch of 1:1:1:1 oil was tested at 1.6:1.4:1.1:1.5. Since then, I have made many batches in an attempt to get closer to 1:1:1:1, but I cannot currently access low-temperature testing to check on my results.

I still struggled, even with help, to grow enough cannabis because I was now giving oil to my parents and friends. I still had to buy commercial cannabis to increase my THC levels and was appalled at its poor quality. I tested the cannabis I bought by smoking it in a pipe and knew from the effect and taste whether it was contaminated, which it always was.

Once whilst making oil with commercial cannabis, I noticed salt crystals forming in the leftover water as it cooled, which I believed were from salt-based plant food. By now, I had met someone with an even more sensitive body than mine for whom I made oil and it heightened my anxiety, knowing that I was forced to use contaminated cannabis for their medicine and mine.

Commercial growers use synthetic food and pesticidal sprays to increase yield. A study from 2013 found that a significant amount of synthetic pesticide residue was released from cannabis when smoked and vaped (Sullivan et al., 2013). Other sources of contamination, for example, mould and fungus, are widespread and can adversely affect patients with compromised immune systems. I believe that harm reduction in cannabis production is needed to prevent dangerous growing practices, and to prevent the effects of these practices being blamed on cannabis.

I continued studying probiotic farming and living soil (Naeem et al., 2012), and started growing probiotic cannabis, salad and vegetables and eating them daily. My fatigue improved noticeably, which I believed was due to nutrient-dense probiotic food (Flores-Félix et al., 2015). Although the oil had reduced my pain, diarrhoea and fatigue by approximately 50 per cent, I still suffered from daily nausea which progressed to retching without slippery elm and food; but the vomiting had massively reduced and the time in-between the hunger, nausea and retching had doubled. My weight was stable for the first time since I was a teenager. I still had to chew each mouthful 20-30 times, but the reduced pain and fatigue when eating made it less stressful. I still needed a wheelchair for distances, but cannabis oil had given me a quality of life for the first time in 24 years.

In August 2016, a colonoscopy showed that the scar tissue in my bowel had healed everywhere except my descending colon, but sadly I had a few ulcers in my terminal ileum. Biopsies showed that the Crohn’s was still in remission, but I needed to rest. But when I rested, I ran out of oil, and without cannabis oil, my symptoms became unbearable again.

I realised that for people like me, a “cure” did not exist, and I would always need cannabis oil, my protocol and support. A doctor at St Mark’s, who was on the board that approved Sativex on prescription, said the remaining scar tissue in my colon would probably always be there, but I hope that eventually it will completely regenerate.

As I write this, it’s been 18 months since I last passed out with pain, which happened regularly for 24 years. It is often too much to take in: every day I cry tears of joy and wonder, then tears of anger and frustration that it Is illegal. My counsellor said I Am grieving the last 24 years. Fortunately, micro dosing psilocybin is AN effective treatment for my depression and my breakdown in 2015 (Carhart-Harris et al., 2012).

In March 2017, I began writing a plan for a disabled workers cooperative farm and food/medicine business, growing nutrient-dense food and medicine using probiotic hydroponic systems. I am working on applying for a high THC cannabis licence for a research project, and I hope to collaborate with professionals on this in the near future.

Note

1.

Herbs used in this tea were: chamomile, Matricaria chamomilla; comfrey leaf, Symphytum officiale; lime blossom, Tilia Europoea; marshmallow root, Althaea officinalis; and meadowsweet, Filipendula ulmaria. Note that all of these herbs have many other medicinal actions but there is no room to list them all here.

Glossary

Antacid

preventing or correcting acidity, especially in the stomach.

Anti-diarrhoeal

preventing or relieving diarrhoea.

Anti-emetic

preventing vomiting.

Anti-insomnia

aiding sleep and treating sleep deprivation.

Anxiolytic

preventing and treating anxiety.

CBDA, Cannabidiolic Acid

the acid precursor to CBD. Research shows it to be anti-emetic, anti-proliferative, anti-inflammatory and anti-bacterial without the psychoactive effects of THC.

CBD, Cannabidiol

the most researched cannabinoid along with THC. Research has shown CBD to have analgesic, anti-inflammatory, anti-epileptic and anti-anxiety properties without the psychoactive effects of THC.

CNS stimulant drugs

a drug which stimulates the central nervous system. Tobacco and alcohol have both stimulating and sedating effects on the central nervous system, and we still do not properly understand their actions.

FECO, Full extract cannabis oil

a method of making cannabis oil using a solvent which produces a concentrated form of the plant.

Hash

a type of cannabis made from the resinous glands of the cannabis flower.

Polyphenols

compounds which have antioxidant properties.

Skunk

a term originally used to describe a strain of high THC, low CBD cannabis called Skunk no. 1 that was bred in the late 1960s and early 1970s. However, in the UK, it soon became a generic term for any strain of high THC, low CBD cannabis.

Tahini

pulverised sesame seeds.

Tannins

a yellowish or brownish bitter-tasting organic substance present in some galls, barks, and other plant tissues, consisting of derivatives of gallic acid. Tannins can block absorption of some nutrients such as iron.

THCA, Tetrahydrocannabinolic Acid

the acid precursor to THC. Research has been shown it to be anti-inflammatory, anti-emetic, neuro-protectant and anti-proliferative. THCA is non-psychoactive.

THC, Tetrahydrocannabinol

the psychoactive cannabinoid. It is currently the most researched cannabinoid along with CBD. Some of its many effects are analgesia, anti-emetic, anti-inflammatory, anti-proliferative, anti-depressant. It also causes vaso-dilation, bronchiodilation and neurogenesis.

References

Carhart-Harris, R.L., Erritzoe, D., Williams, T., Stone, J.M., Reed, L.J., Colasanti, A., Tyacke, R.J., Leech, R., Malizia, A.L., Murphy, K., Hobden, P., Evans, J., Feilding, A., Wise, R.G., Nutt, D.J. et al. (2012), “Neural correlates of the psychedelic state as determined by fMRI studies with psilocybin”, Proceedings of the National Academy of Sciences of the United States of America, Vol. 109 No. 6, pp. 2138-43.

Crippa, J.A.S., Derenusson, G.N., Ferrari, T.B., Wichert-Ana, L., Duran, F.L.S., Martin-Santos, R., Simões, M.V., Bhattacharyya, S., Fusar-Poli, P., Atakan, Z., Santos Filho, A., Freitas-Ferrari, M.C., McGuire, P.K., Zuardi, A.W., Busatto, G.F. and Hallak, J.E.C. (2010), “Neural basis of anxiolytic effects of cannabidiol (CBD) in generalised social anxiety disorder: a preliminary report”, Journal of Psychopharmacology, Vol. 25 No. 1, pp. 121-30.

Flores-Félix, J.D., Silva, L.R., Rivera, L.P., Marcos-García, M., García-Fraile, P., Martínez-Molina, E., Mateos, P.F., Velázquez, E., Andrade, P. and Rivas, R. (2015), “Plants probiotics as a tool to produce highly functional fruits: the case of Phyllobacterium and vitamin C in strawberries”, PLoS ONE, Vol. 10 No. 4, p. e0122281, available at: http://journals.plos.org/plosone/article/citation?id=10.1371/journal.pone.0122281; www.mdpi.com/1420-3049/21/5/573/htm

Isegar, T.A. and Bossong, M.G. (2015), “A systematic review of the antipsychotic properties of cannabidiol in humans”, Schizophrenia Research, Vol. 162 No. 1-3, pp. 153-61.

Izzo, A.A., Borrelli, F., Capasso, R., Di Marzo, V. and Mechoulam, R. (2009), “Non-psychotropic plant cannabinoids: new therapeutic opportunities from an ancient herb”, Trends in Pharmacological Sciences, Vol. 30 No. 10, pp. 515-27.

Kogan, N.M., Melamed, E., Wasserman, E., Raphael, B., Breuer, A., Stok, K.S., Sondergaard, R., Escudero, A.V., Baraghithy, S., Attar-Namdar, M., Friedlander-Barenboim, S., Mathavan, N., Isaksson, H., Mechoulam, R., Müller, R., Bajayo, A., Gabet, Y. and Bab, I. (2015), “Cannabidiol, a major non-psychotropic cannabis constituent enhances fracture healing and stimulates lysyl hydroxylase activity in osteoblasts”, Journal of Bone and Mineral Research, Vol. 30 No. 10, pp. 1905-13.

Naeem, M., Masroor, M., Khan, A. and Moinuddin (2012), “Triacontanol: a potent plant growth regulator in agriculture”, Journal of Plant Interactions, Vol. 7 No. 2, pp. 129-42.

Porter, B.E. and Jacobson, C. (2013), “Report of a parent survey of cannabidiol-enriched cannabis use in pediatric treatment-resistant epilepsy”, Epilepsy & Behaviour, Vol. 29 No. 3, pp. 574-77.

Sullivan, N., Elzinger, S. and Raber, J.C. (2013), “Determination of pesticide residues in cannabis smoke”, Journal of Toxicology, Vol. 2013, pp. 1-6, available at: www.hindawi.com/journals/jt/2013/378168/; https://static1.squarespace.com/static/57faf399cd0f68a69b4c670c/t/5839e6a2be6594d45acf9e82/1480189604172/Digestive+disease+review+nature.pdf

Corresponding author

Sarah Jane Godfrey can be contacted at: sjg1972@hotmail.co.uk

About the author

Sarah Jane Godfrey is Writer/Activist based in Bucknell, UK.