The Shade I Wear; How GP Has Colored My Life
With several awareness campaigns on the go, I took some time to try and organize the last 6 years of my life.
My name is Jessica-Faye Watters; I am a 26 year old artist living in Ottawa, Ontario. On Thanksgiving 2009 I became ill with bronchitis which soon developed into H1N1. As I'm sure many have heard, it was a brutal flu but what remains lesser known are the long term effects of this illness. I never seemed to get better, in fact I actually grew worse. One by one causes were ruled out; concerns of an eating disorder were even raised, but after seeing 3 therapists these fears were dispelled. After years of specialists, ineffective drugs, tests that were invasive and sometimes quite unpleasant, and even tube feeding after a weight loss of over 120 lbs, it wasn't until the end of 2012 that I was finally diagnosed with a condition known as Gastroparesis.
Simply explained, this is a disorder that slows or stops the movement of food from the stomach to the small intestine. Within our bodies is the vagus nerve that controls the muscles of the stomach that normally contract to break up food and move it through the gastrointestinal tract as well as the hormones and enzymes that helps us digest food. It goes deeper than this, however, also controlling our involuntary functions such as breathing, blood pressure, swallowing and heart rate. Even our emotions are affected by it. Gastroparesis occurs when that nerve becomes damaged by injury/illness and the stomach muscles cease to contract normally. This slows or all together stops movement of food from the stomach to the small intestine.
According to a Gastric Emptying Study done Nov 2012 this is how my stomach empties compared to an average person.
1 hr normal: 37-90% mine: 99% 2 hr normal: 30-60% mine : 88% 3 hr normal: 0-30% mine: 54% 4 hr normal: 0-10% mine: 44%
My day to day life includes but isn't always limited to the following:
Constant abdominal pain Constant Nausea Vomiting (inability to keep ANY food down or even small bits of fluids at times) Constipation (which can switch to diarrhea) Low Potassium, Magnesium, & Iron Muscle aches and weakness Hypersensitivity (to both touch and temperature) Insomnia Dehydration Abdominal Bloating Stomach Dissention Hair loss Dry Skin Anxiety Depression
Even with a diagnosis I still find myself in medical limbo. Since Gastroparesis has no known cure at this time and without earlier identification I have become too weak to even take the medication that would normally be prescribed for this. I was given a trial of Metoclopramide, Domperidone and Erythromycin (3 of the leading names in Gastroparesis treatment) but after having bad side effects from all, the last even landing me in ER I was told I could no longer even attempt them due to the potential of heart damage it could cause. This is due to having also developed chronic low potassium or Hypokalemia. I also suffer from chronic intestinal pseudo obstruction, which means my intestines are also not functioning properly and have developed Fibromyalgia, which adds more pain to certain points in my body and . Another trial of Erythromycin was attempted from late November-December 2014, but once again I experienced terrible side effects with no actual benefits.
Different procedures exist to try and combat this condition but my specialist has advised me to keep clear of them, saying that his other patients have actually gotten worse after having undergone them and while tube feeding is an option my blood work and state of mind are healthier by my current regiment of trying to eat by mouth, even though I can't keep it down.
More and more I see news of fellow GPers passing away and I am left scared and longing for my old self. I want to be there for the people I love and who have supported me throughout this nightmare. I can't begin to describe the expenses that have been exhausted, financially and emotionally. One by one I lost the dreams I'd struggled to achieve. I am passionate about expressing myself through my art, whether it be by hand, computer or photography; I have a certificate in Pre-animation/Illustration had been transitioning from Algonquin College's Animation program to a winter intake course, with plans to apply to Photography when my health became too weak to attend school. I now carry a hefty student debt, caused by medical expenses rather than education. With the aid of my loving parents I took a 6 month leave from work at Coliseum Ottawa Theater until the costs were too great. I worked in a limited position at the theater for another year only to have my health decline faster. It wasn't until my doctor firmly advised me to do so that I had to leave the job I loved. I am on Disability now but have discovered many limitations with what the program can actually provide. While full recovery may seem a distant dream I want to continue living my life and being a part of others.
In the month of June 2015 I underwent a period of hospitalization where I finally met a specialist who is knowledgeable on Gastroparesis. He incorporated a medication known as "Resotran" into my treatment plan on a trial basis and within 2 weeks of taking this my body began to absorb nutrients, and restore energy. The most evident sign of the medication's positive effects was the 16lbs I regained after period 2-3 years of barely being able to keep my weight above 80lbs; It was a dream come true.
With the trial being such a success, I was given a prescription right away only to have the dream shattered. The pharmacy informed me that Resotran is not covered by OHIP or my drug plan with the Ontario Disability Support Program. I was told to contact my caseworker with the Ontario Disability Support Program for aide, who then told me this issue was not their responsibility. I was then told the only action left to take was to have an Exceptional Access form sent to the Ministry of Health, which my specialist proceeded to do. While we waited to hear back I was occasionally provided samples when I ran out but only a few at a time since other patience required them as well.
On September 17th, after 11 weeks of waiting the verdict was finally decided, the Ministry of Health had denied the request. This decision means that even though I'm disabled and unable to work I would somehow have to meet the unrealistic expectation of paying for the prescription. The normal monthly dosage of 1 per day is priced at $135. My pharmacy has informed that a dosage of 2 a day would amount to $260 and this is does not account for the fact that my dosage has been adjusted to 2-3 a day depending on the severity of my condition. My specialist is currently trying to appeal this decision, but no more samples can be provided, which means in 3-4 days I will need to pay $300 for my dosage.
Several other factors must be used in addition to Resotran for day to day living; I must constantly keep a hefty supply of vitamins and Gatorade as well as use Restorlax 1-2 a day and Iberogast to function properly. These are items that are not considered medical, yet I can't live without and take their toll financially. There are different alternative measures and therapies that I would like to attempt to try and stimulate healing, not only physically but emotionally as well, but I am unable to afford them at this time.
Gastroparesis is considered an invisible disease, and even those of us who are suffering the worse do not always appear sick to the people around them. The feeling of alienation can be as bad as the condition itself which is why I find the theme of Green so appropriate for this cause. I hope to spread color to this invisible yet life threatening condition!
