Rollercoaster of a Ride Called Gastroparesis
By Jennifer Ouellette
First published in the Inside Tract® newsletter issue 201 – 2017
My name is Jennifer Ouellette, I am 30 years old, living in Riverview, NB. I have lived through this rollercoaster of a ride called gastroparesis for the past 12 years.
I was 18 at the time I was diagnosed and had gone through absolute hell to finally reach a diagnosis of gastroparesis. It started simply enough when I couldn’t keep anything down after I would eat. I thought at the time it might be a stomach flu, but as more time passed it kept getting worse. I was starting to lose weight very rapidly and I could not keep a single bit of food from coming back up 15-20 minutes after I would eat it. I went to see my family doctor and was very scared and concerned. He brushed me off and said it was acid reflux gave me a prescription and said to come back in a week if it didn’t get better. So, I was back in his office the next week and, he again, did not listen to me and my concerns and gave me a prescription for another acid reflux pill.
At this point I had lost close to 25 pounds and was in very bad shape. I went back to see him the following week and refused to leave his office until he listened to me and did something about it. He then accused me of it “being all in my head” and accused me of being bulimic and said I needed mental health help. If he had bothered to ever listen to me or read my file, he would have known that at the time I was already on meds and in therapy for mental health issues, bulimia not being one of them. I yelled and cried and told him 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 scared and had no idea what was wrong and was slowly wasting away. He 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 was happy to finally know what was wrong with me, to have a diagnosis, to put a name to all the horrible symptoms I had been experiencing. Upon being discharged from the hospital, I was prescribed domperidone to treat it and given zero information about my disease and what I was supposed to do now.
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 for a while 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 and keep proper dosage of the medication, my health is declining once again. I am currently waiting to see my specialist to discuss the possibility of a permanent feeding tube.
This is a frustrating cycle that many of us go through. I wish that the medical community would start listening to gastroparesis patients. There need to be more treatment options available, there needs to be more research, especially here in Canada. There is one more medication option available here compared to when I was diagnosed 12 years ago, we need more advancement than this! People are dying from this disease as we continue to be ignored and mistreated. It is absolutely unacceptable. I hope that going forward, the medical community finally hears us and starts listening. We need more resources and options.