My journey with Gastroparesis has been a long one full of ups and downs. It was 2005 and I was 18 at the time I was diagnosed. Joanne has graciously agreed to share her personal health journey with gastroparesis and medical cannabis in the hopes that you all can learn from her experiences.
Jennifer’s Journey with Gastroparesis & Medical Cannabis
She has graciously agreed to share her personal health journey with gastroparesis and medical cannabis in the hopes that you all can learn from her experiences.
We had the opportunity to interview her on our medical cannabis: patient experiences webinar. This is her story:
My journey with gastroparesis has been a long one full of ups and downs. It was 2005 and I was 18 at the time I was diagnosed. I had to fight so very hard to finally reach a diagnosis of Gastroparesis. It started with what I thought was a stomach flu at the time. I couldn’t keep anything down after I would eat. As time went on it kept getting worse, not better and I was becoming quite concerned. I was starting to lose weight very rapidly and I couldn’t keep a single bite of food from coming back up after I would try and eat. I went to see my family doctor and I was very scared at that point. He brushed me off and said it was just acid reflux, gave me a prescription and said to come back in a week if it didn’t get better. So, after a week with zero change and still losing weight I was back in his office. He again, did not listen to me and my concerns and gave me a prescription for a different acid reflux pill and said to come back again if it didn’t help.
At this point I had lost close to 30 pounds and was in pretty rough shape.
I went back to see him the following week and refused to leave his office until he actually listened to me and did something about what was happening. It was at that point that he tried to tell me it “was all in my head” and accused me of being bulimic and said I needed mental health help. At that point in my life, I was already in therapy, on medication and getting help for mental health issues, bulimia not being one of them. If he had bothered to ever listen to me or read my file, he would have known that. I screamed and just broke down crying and said he HAD to do something, I wasn’t doing this to myself and I just wanted to be heard; I just wanted help. I was terrified and had no idea what was wrong and was slowly wasting away. He finally agreed to send me over to the hospital, but told me they would not find anything wrong with me.
I was admitted to the hospital, where I spent over three weeks with an amazing gastroenterologist who actually listened to me, acknowledged that something was very wrong and ran every test he could until he found out what was behind all of this.
He was very upset that my family doctor had let me get so bad and brushed me off countless times. At the time, gastroparesis was quite unheard of in my city, so they did not think to check for it until every other test came back negative. The gastric emptying scan finally gave me my answer, my stomach emptying process was quite delayed and I had gastroparesis.
I consider myself extremely lucky that over the years my symptoms remained mild to moderate with some flare-ups and my body continued to respond to the domperidone. Now let’s fast-forward a decade, when everything changed again.
It was as if I were 18 again and starting this cycle all over again.
I ended up hospitalized and that is where I met my new gastroenterologist. He has been supportive and helpful and has been fighting for me. One of the first things he did was repeat my gastric emptying test, which revealed how severe my gastroparesis had become over the years, showing that less than 1% of my stomach was actually functioning now.
We cycled through all of the regular medications, which either didn’t help or I developed horrible reactions to. This continued for a few more months as I progressively became worse. I eventually had to be hospitalized with a temporary nasojejunal (NJ) tube. My gastroenterologist decided to try a medication called Resotran (prucalopride). On release from the hospital, I was responding very well to the medication. This continued for several months; however, flare-ups started again and, without being able to keep medications down, my health was declining once again.
This is where my journey with medical cannabis started.
All the medications had failed me and I was out of options. I had first mention the possibility of medical cannabis to my family doctor, which was a big mistake. He is not a doctor who supports use for it even though he knows there are therapeutic benefits. He would not help me so I moved on to my Gastroenterologist. He was actually quite supportive of my decision to want to try it and at that point I had nothing to lose. He filled out a referral for me to go to the Trauma Healing Center Clinic (it is now called Harvest Medical) to explore Medical Cannabis options. After submitting the referral to the clinic I waited almost 4 months before I was able to be seen. When the day of my appointment arrived I met with a great doctor who listened to me and agreed that Medical Cannabis would more than likely be beneficial in helping me treat my symptoms. I got signed up with an LP and then started exploring the different strains and seeing what worked and what didn’t during a trial and error process.
Before I started using Medical Cannabis I was vomiting anywhere between 15-20 times a day and dealt with relentless nausea and pain.
Now, after years of treatment with Medical Cannabis I rarely vomit unless I end up in a bad flare up, the cannabis helps to keep the nausea somewhat manageable and it does help bring my pain levels down a bit. I had been doing research into medical cannabis for a while and continue to do so because I want to learn and have a greater understanding of the plant I am using as medication and the science behind it all. I have come to understand a lot more about different terpenes and cannibinoids and the roles they play in treating our symptoms.
In the past few years since becoming a medical cannabis patient I have been through several different LPs and it is always a trial and error process with each LP to find the strains that work and have the right terpenes for me. That is one of the drawbacks of our current medical cannabis system.
Every LP has different strains, they are all grown differently and can contain varying levels of cannibinoids and terpenes.
There is no one size fits all when it comes to using medical cannabis and it almost always involves a bit of trial and error to find the right strains and dosage to help treat various symptoms. I highly recommend to anyone just starting their journey to use a cannabis journal or an app like Strainprint to keep track of the strains, dosage and effects that you feel and how it helped.
My recommendations for patients that are new to cannabis:
If you are thinking about trying Medical Cannabis go have a chat with your doctor. A lot of doctors are getting on board and becoming more comfortable with recommending cannabis. Other doctors while they may not be supportive they may be able to refer you to a clinic if they aren’t comfortable or educated enough on Medical Cannabis. If those avenues don’t work and you are under the care of any other doctors try asking them and they may be able to help refer you to a clinic.
If you get to the point where you have seen a doctor and are now approved to order medical cannabis try and do a bit or research before making that first order. Try and find people who are using medical cannabis to treat your illness and ask them what works best for them. Educate yourself about terpenes and how specific ones can help your symptoms. Just remember that everyone is different and not everyone is going to have the same experience even with the same strains. It is a lot of trial and error and that is where I recommend using a Cannabis journal or an app like Strainprint so you can keep track of how each strain affects you and you can figure out from there what is working for you and what isn’t. When you are trying it for the first time, no matter how you use it start low and go slow especially if you have zero experience with cannabis.
Joanne’s Story: Fighting Gastroparesis Symptoms with Cannabis
Joanne is a 56-year old woman who has been diagnosed with:
Gastroparesis, Hypothyroid, IBS, GERD, Acid Reflux, FM, OA & DDD. She is currently using cannabis to manager her symptoms.
She has graciously agreed to share her personal health journey with gastroparesis and medical cannabis in the hopes that you all can learn from her experiences.
We had the opportunity to interview her. This is her story:
What motivated you to try cannabis for helping your GI Disorder? (your symptoms, other meds not working, was just curious? etc.)
I started having GI disorders from constipation to mild nausea during my teenage age. One of my youngest sisters notice a lump in my neck in grade 9 high school. I was diagnosed with hyperthyroid and goiter. I had to travel out of town for follow ups with an endocrinologist. This was over 40 years ago.
I was prescribe different medical trials (including radiation treatments) for over 1 year to shrink the goiter with no success. I was told that my thyroid was going to be fine but needed to be control on thyroid medication therapy and report was send to my family physician. I was never followed by an endo after this. I was put on Eltroxin to control my symptoms of hyperthyroid. I was having bloodwork done once a year to track my thyroid range. However, it was always completely off from what a normal range should have been and was told it just off a bit, you will be fine.
I often felt exhausted and had a hard time focusing at school. I suffered from headaches, body pain, irregular menstrual period.
I would end up hospitalized several times in those years due to severe nausea, vomiting & stomach pain. I was unable to keep any food down during those flare ups. I continued my education with lots of road blocks due to my health. There was nothing available other than Eltroxin and Synthroid at the time. The doctors did not pay attention to my symptoms of hyperthyroid. They often told me “it cannot be that bad” and kept changing my thyroid medication dosage once a year. I graduated DSW in college and found a permanent job that same year and work for 15 years with the same company.
In my early 20’s, I had an emergency operation. My gallbladder had to be removed due to several polyps and damage. I ended up with a severe infection and was hospitalized for over 2 weeks. My thyroid was still not stabilized and my digestion was still not good.
In the year 2000, during my yearly regular thyroid bloodwork level check. I was still showing signs of hyperthyroid and my symptoms was still not better. I request to get more test done. I was sent for an ultrasound of my thyroid and several nodules were found on my left thyroid. I was refer to an endo and had a partial thyroidectomy including the removal of my goiter. I continued with my thyroid medication replacement and my thyroid medication was change to synthroid . Few months after my surgery, I was in a MVA coming home from work. I was not at fault. Due to my injuries, I was dx with FM, OA and DDD and was put on several med trials to help me cope with my physical injuries.
At this point, despite everything else that was going on, I was still battling digestion issues. I began to gain a lot of weight inexplicably, and was unable to return to work.
In 2006, again several nodules and a tumor (2.5cm) were found on my right thyroid and I had a total thyroidectomy. I had a biopsy and no cancer found but was told that my thyroid was damaged from the nodules and tumor, and that it should be removed. Scared and not sure of why several nodules were growing again on my thyroid, I took the specialist advice and had a total thyroidectomy. From there, my gastrointestinal issues got worse. I was hospitalized several times due to severe nausea, vomiting and really bad stomach pain.
During one of my hospital stays, I was diagnosed with helicobacter pylori and treated with 2 strong IV antibiotics. I went through many tests, front and back door scopes, x-rays, scans… you name it…. still no answer.
By 2014, the only food I could consume was Ensure… for an entire year. It would take me a full day to keep two ensures down. Even then, they needed to be diluted with water. I would lay in bed for hours, curled up, with severe abdominal pain. I was under supervision of a dietitian for over 1 year and my family doctor. I was in and out of the hospital to ensure I was receiving adequate hydration. I was told that the next step was a feeding tube. I was in a dark place and felt trapped in a body that I did not know how to fix.
I was put on a waiting list to see a gastroenterologist and had to wait another year to see him. I had no answer of why I could not keep anything down, why my stomach hurt so much and the non-stop severe nausea. I had lost hope in the health system. I was down to 97 pounds (had lost over 30 pounds in 1 year).
My dietitian helped me to push for more help by communicating via email with my family doctor for more investigation. I kept a journal of my food intake and every small bit of food I tried would cause severe bloating and stomach pain. I did the GES test and it was confirmed that I had gastroparesis. I had no clue what it meant other than I have damage nerves in my stomach which cause slowing food to digest to my bowels.
I started to educate myself more on the internet about GP and join a wonderful gastroparesis support group on facebook . Some of the members discuss about cannabis therapy and how much it helped ease the nausea and appetite.
I started to learned more about cannabis plant. It was all new to me and never knew how much this plant was special for healing and join other close group on cannabis and Nature’s Tranquility Healing group.
I was new to cannabis. I would lay in bed with my heating pad and read for hours, learning about the endocannabinoid system and reading many wonderful success stories with many different illnesses.
In one of my cannabis group, I was bless to connect with a wonderful soul Mom whose son who had been diagnosed with gastroparesis for over 1 yrs. He had won the battle, bowel cancer with cannabis oil therapy and has been cancer free . He was having a really hard time to keep weight on or intake any nutrients. Suffering from malnutrition and many other gastroparesis symptoms.
Despite my worries about Cannabis (considering I had been raised to believe it was a street drug) she gave me hope. I was also very fortunate to have the full support of many others, including my 2 wonderful sons and my family.
Can you tell us about your experience with getting a prescription for cannabis? Did you go through your physician or a private clinic?
I was on my laptop reaching for help and I just wanted my life back. I was not ready to die and prayed to God and my guardian angels to give me strength. I made a decision from there that I did not want any more med trials and was in a fight to beat that feeding tube. I found my voice and started my journey with cannabis.
I approached my family doctor about medicinal cannabis shortly after I had made this internal decision. He, unfortunately, wanted nothing to do with prescribing me this new therapy option and had no support from him. Another road block!
I continued my research on the internet and came across a board of patients and doctors. One of the patients was a cannabis advocate. I reached out to him via email and he was able to set me up an appointment in Toronto to see a doctor that prescribe cannabis from a clinic.
By then, it had been almost a year before I had finally been able to find someone even willing to entertain the idea of prescribing me cannabis. I self-referred myself to Lockwood Clinic to Toronto (a full 8-hour drive from home). My youngest son escorted me via airplane. I was too weak and ill to drive, especially on my own. I was there for 3 days.
Finally, I had a wonderful experience! I had doctors that listened to my symptoms. I had several different test done and was also diagnosed with hiatal hernia and again H. pylori. I was told to stop the ensure that I was now pre-diabetic due to the ensure. I was also told that it was too dangerous to operate on the hiatal hernia in my stomach and was offered a prescription for medicinal cannabis to help my symptoms. I did not even ask for a medicinal cannabis prescription, it was offer to me. I was also given antibiotic medicinal therapy for the H. pylori.
My medical team gave me the choice to go to a dispensary or register with a Licensed Producer. We did not have a dispensary in my town and my doctor felt it was better for me to register to a Licensed Practitioner because of the law and regulation changing during that year.
What type and format of medical cannabis do you use, and how was that determined?
When I first started with my medicinal cannabis, I started with an Indica strain high in THC & CBD . My Licensed Producer only had dried flowers. I was paying $4.50/ gram and was on compassion program for fix income. I finally got my first order in April, 2015. I had my follow up with my cannabis doctor every 3 months via skype , as I could not travel that far from home, for 1 year. Now I have my follow up every 6 months. I now pay $6.50/ gram on a compassion program. I take CBD & THC oil, vape flowers, do edibles and make my own cannabis-infused lotions. I take my CBD oil twice a day. Early morning and afts. I take my THC at night. I vape also during the day depending how severe my nausea is , I find vaping has a fasting effects for my severe nausea. I started to do edibles last year because I found it has a longer effect and it is more affordable on my budget. I also started to make my own cannabis lotions with THC/ CBD flowers and my ABV . It helps my OA and DDD during my flare ups.
Were you worried about side effects? Now that you have been on it, have you experienced any negative side effects?
My biggest worries in the beginning was I did not want to get high and how I was going be treated by my health team here in my town. Now that I have been on it, I only have positive side effects. The high feeling did affect me at the beginning. I have learned by trying different strain, micro dosing and finding the right dosage. It was through trial and error but was determine to not give up. I also introduce mindful/meditation in my daily schedule .My dietitian noticed a change in my physical and mental health. She did not believe in cannabis when I first started and told me it was going to slow down my digestion.
I ask her for research and proof. I give her all the information I had received from my cannabis sup-port group. We both learned together and am thankful that she did listened to my VOICE. I was able to keep my fluids down and I was able to deal with this disease better mentally and physically. My dietitian found another doctor for me in 2016 out of town. I started to make homemade beef bone broth, and homemade smoothies. My new family doctor was a good compassionate doctor and de-cided to go ahead with the Natural Desiccated Thyroid for my thyroid, he had never prescribed it but was willing to learn with me. I unfortunately loss him because he had to relocate for personally reason. I am now under a care of RPN and she is also learning about my new thyroid meds.
I was never again hospitalized overnight due to my severe nausea and vomiting in the last 3 years. With all my experience, I also have PTSD when it comes to hospital because of no one listening to my symptoms for so long and believing it was going to get better with all the meds trials.
What advice would you give to someone who is considering cannabis? Did you experience any pitfalls along the way that you would want people to avoid?
Cannabis has saved me from a feeding tube. Without my cannabis, I feel full 24/7 and severe nausea. I suggest trying cannabis for anyone that’s battling gastroparesis or any other ailments and medication trials have failed or not helped.
Keep a daily journal document of each trial strain, Effects : decrease the nausea, help manage my pain, the smell of the flower, what method did you use , appetite etc… I joined another cannabis group 10 months ago named SheCann Empowering Canadian Woman. They have an App to help you journal your cannabis intake called Strain Print (from dried flower, LP oils, edibles …) I would recommend downloading the app, it will help you to keep track of different strains you’ve tried and you can see what helps you the most and see the progress of your disease.
You can also share the journal with your doctor.
I also recently been researching more into the terpenes of the plant and found the strain high in caryophyllene and limonene has helped me ease stomach and GI tract. They also help a lot with my heartburn and ease my sore throat from acid reflux.
Also, be mindful and listen to your body. Talk to your doctor about medicinal cannabis as a treatment option. If you do not get support from your family physician, find someone that will. Never quit or stop any medication on your own without your doctor’s advice. Medications are a bandage, get to the route of your symptoms. Listen to your body and follow your “gut feeling”. Without my cannabis, I feel full 24/7 and severe nausea. It has given me a better quality of life and I am able to spend better quality time with my love ones.
I would also recommend joining support groups on Facebook or online. I have met many beautiful souls from my gastroparesis and cannabis support groups that have helped me in many ways. Knowing that I am not alone battling this disease has given me hope. We do have a close support group for gastroparesis on Facebook called : Gastroparesis Eh ! : Gastroparesis Canada. Your more welcome to join.
I am not out of the woods, it is a daily struggle to try to keep a balance nutrition when been very limited in my intake due to my slow digestion and adsorption. I can tolerate fish, sweet potatoes, local chicken and eggs on my good days. I also do take other herbal therapy (chaga tea, chaga tincture, tumeric , ginger tea, homemade tonic to help my weak immune systems). I also take vitamin D supplement to help my severe vitamin D deficiency and magnesium to maintain my muscle function.
During my flare ups, I keep myself hydrated with homemade beef bone broth and smoothies. It will be 4 years on April 8, 2015 that I started my healing journey with medicinal cannabis, and it was the best decision I ever made to help my illnesses. I was able to gain back 25 pounds and maintain it.
We are all individuals with a unique endocannabinoid system. For many of us battling with chronic pain and long-term incurable illnesses, our endocannabinoid system is not balanced. With cannabis therapy, along with diet and exercise, we can have a better quality of life. Know that you do have other options when pharmacy medication does not help. Cannabis has so much potential.
Be your own advocate and keep fighting for your rights. My hope by sharing my journey of medicinal cannabis is to help many beautiful souls hurting in silence with this awful disease, have more research and hope for a cure. Do your research, join support groups and keep USING YOUR VOICE!
Thank you everyone involved in helping me through my journey of healing and all who took the time to read my story.