A Gastroparesis Story
One of our gastroparesis warriors has graciously agreed to share her personal journey with gastroparesis in the hopes that all of you can learn from her experiences.
This is her story:
I think I’ve had mild GP flare ups my entire life. I used to sometimes wake up in the night with stomach pain and odd stomach contractions as a kid. I didn’t have nausea but I did, at times, experience getting full quickly. These were very mild symptoms and although I did start mentioning them to my doctor in my 20’s and 30’s, nothing came of it. I had more than one Upper G.I. test, but they never did provide any answers. Then the symptoms would go away again and I’d forget about it.
Then, in my late 40’s the symptoms suddenly started again, but worse. Little did I know, this would turn into one of the worst years of my life. The symptoms began with waking in the night with those odd stomach contractions again and pain. I started to get the early fullness when eating and then terrible indigestion about 20mins later. Soon I’d start feeling nausea pretty much all day long. Not severe enough to think I might vomit, but enough to make me feel miserable. I began to look at what I was eating and tried to stick to simple foods. But it seemed like anything I ate had the same effect.
My family physician put me on a proton pump inhibitor (Nexium) and I ate according to a diet for those with heartburn or GERD. I had high hopes for this medication, but after many months of taking it, I realized it wasn’t doing anything at all to help. My symptoms began to get worse and my doctor referred me to a Gastroenterologist. Unfortunately I couldn’t get in for 6 months—an excruciating long time when you are suffering as I was.
During that 6 months of waiting, I began to deteriorate. As I continued to cut out foods from my diet that I blamed for causing symptoms, I was eating very little. Plain rice cakes (if I was having an ok day I might put cucumber slices on them), warm white rice, sometimes smoothies—although often I had to sip on one all day as I couldn’t take a whole one at once. Occasionally, warm broth (as low fat as possible). I felt I couldn’t tolerate any fat, too dense or sugar. Some days I seemed to be able to tolerate a food and then the next day not. Naturally I lost a large amount of weight. I was down to below 90 lbs at the worst of times and menstruation stopped completely.
The worst of all though, was the anxiety that I developed during this time. I was very close to having a panic attack several times. I’d never experienced this before and I was terrified that I could not control it. Naturally this made my symptoms even worse and it started to affect my social life. I was afraid to go anywhere in case I’d suddenly feel ill. If I was persuaded to go out, I’d begin to get ill right before we were about to leave. The same thing would happen before mealtimes. I began to have an aversion to eating, knowing I’d feel awful afterwards, even though I was so hungry.
During this time I began to see a Naturopath. Although I knew he wouldn’t be able to “cure me” I was hoping he might have some ideas on what I could eat. In the end he provided a most valuable thing, he taught me deep breathing and relaxation exercises. Belly breathing, while lying down and relaxing every muscle helped me immensely—both physical and mental. I did my best to practice these breathing techniques while walking and at work. Sometimes my anxiety got the best of me though—more often on days with bad symptoms.
Shortly before my referral appointment, my family doctor suggested I start taking an anti-anxiety/antidepression medication (Pristiq). I was terrified to try it in case it would make my stomach even worse. I did agree to try and it I actually felt like it made a positive effect on my stomach symptoms. I definitely still had very bad days, but I also had good symptom days—which were pretty non-existent before.
The time for my Gastroenterology referral finally came. I had my husband come with me as I was feeling so fragile and emotional; I wanted a second person there to hear what the doctor said. As soon as he started asking me questions I began to cry. I think at some point he either asked me if I had anxiety or I told him I did. Unfortunately he got stuck on this and continued to ask about anxiety. At the end of our meeting he said that since I’d lost so much weight, he would do several tests but that he didn’t think they would find anything. He then suggested I continue with the anxiety medication. He was very kind as he was talking to me, and I left there feeling like he was right. That I caused all of these symptoms because I’m a worry wart, prone to anxiety. I did this to myself.
I told my family, friends and my family doctor that it was all caused by anxiety. I tried harder to use the breathing and relaxation techniques to “cure” myself.
During the next few months I went for several tests, ordered by my Gastroenterologist: an Upper G.I., endoscopy and lastly a stomach emptying test. It was the stomach emptying test that finally diagnosed the gastroparesis. I remember my family doctor calling me in and telling me the test results. She said “Just so you know, it wasn’t all in your head.”
When I met with my Gastro specialist again, he explained gastroparesis to me. I don’t have diabetes or any damage to my vagas nerve that they could find, so my gastroparesis was deemed idiopathic. He sent me for a referral to a dietician and gave me a prescription for Domperidone.
Just finding out the diagnosis and finally getting support helped my condition immensely. I continued to work on relaxation and breathing. The Domperidone seemed to help and I slowly began to eat more food according to the diet that was suggested. I got a lot of great help and advice from the website “Living Well with Gastroparesis”. It was really the only support out there at the time and was much better than what I received from the doctor.
I still had bad days and good days but the medications were helping and I finally got my hope back. I started to do guided meditation for about 15 mins before every meal, to help avoid my anxiousness around eating. I also began to see a counsellor to help me learn how to cope with anxiety and feelings of panic.
It took many months but my gastroparesis resolved. I understand now that this can spontaneously happen for some people, but not all. Occasionally I have mild flareups. This often can be attributed to hormonal fluctuations or something like eating badly for several weeks (like before Christmas!). I still have to be careful what I eat. I avoid anything deep fried or eating a lot of dense meat. I’m generally a vegetarian. I had a stomach flu a couple of years ago that caused a big flareup. It scared me but I went back to my Domperidone and breathing techniques to get me through it.
If there is anything I would like to change it would be for medical professionals to do a much better job of recognizing and supporting the mental health of those with chronic diseases. Some doctors see the anxiety and never look past it, assuming the anxiety caused the disease. Most of the time, it’s the other way around. As well, wait times are far too long for problems like this. I would have never deteriorated as far as I did, both mentally and physically, if I hadn’t had to wait for so long to be diagnosed.
I’m so thankful to the Canadian Digestive Health Foundation for their hard work lobbying to get GP more recognition and making such a helpful website with so many good resources. Because this is the type of problem that is so personal to each patient, I’m also so happy to see new options, like cannabis, becoming available for people to try. Who knows, I may need them again someday.