When Diagnoses Accumulate: My Gastroparesis Story

As Gastroparesis Awareness Month is coming quickly to a close, I thought it high time to share my story. As many of you know, I was diagnosed in June with a form of digestive tract paralysis (DTP), specifically gastroparesis, via antroduodenal manometry and a gastric emptying study. And let me just say, this diagnosis was one of the toughest pills I’ve had to swallow in recent years. Not because I hadn’t known that some kind of DTP diagnosis was in the works but because I was blindsided by the resurgence of Crohn’s along with small bowel dysmotility on top of the gastroparesis. And it knocked me down and it wore me out as I anxiously wondered how many diagnoses one person can possibly accumulate.

So what is digestive tract paralysis? According to G-PACT, a supportive community for those struggling with DTP, DTP occurs when any organ in the digestive tract doesn’t propel food or liquids forward at a normal rate. Gastroparesis is a form of DTP and it literally means that the stomach is paralyzed. Nearly 1 in 25 Americans suffer from DTP. It can be caused by a number of diseases (diabetes, etc.) and surgical manipulations and it is often treated by making significant dietary changes (predominantly oral nutrition and soft, easy-to-digest foods). Symptoms include feeling full quickly (or early satiety), nausea or vomiting, abdominal pain, bloating, weight gain or loss, lack of appetite, malnutrition, dehydration, acid reflux and erratic blood glucose levels (G-PACT, 2019).

Given all these symptoms, this then begs the real question: how does gastroparesis affect my quality of life? Truth be told, it has robbed me of quality of life and the ability to eat for a few years now. So even though I had been in remission from my Crohn’s Disease, gastroparesis and small bowel dysmotility really didn’t let me enjoy any “break” from active Crohn’s.

What I went through was unfortunately an experience that’s all too common with any new diagnosis– running from doctor to doctor for a label and solution to my most recent symptoms while trying to get a grip emotionally on the latest battle my body is facing. First, I was told it was post-surgical IBS then small intestinal bacterial overgrowth (SIBO) and finally when the bowel obstructions started last summer, I was finally told to see a GI motility specialist. After all that, no one thought to check for gastroparesis because I have Crohn’s, no colon and an ostomy bag, as a result of which I should only be having looser stools, not hard ones that took forever to make their way out.

Now 3 frustrating years later, I finally have the diagnosis thanks to the Mayo Clinic. But it still hasn’t been a walk in the park. I was plagued by a period of denial followed by a period of grief, which ultimately led to an acceptance that finally told me, “Tina, you got this.” Since then, I’ve worked hard to get back on my feet. Getting on new pro-motility medications has been a tough balance with all the rest of my medications. Not to mention ostomy explosions night after night from the pro-kinetic medications.

“V” is for victory after an arduous 8-hour small bowel manometry

But I think the real kicker has been the dietary changes. Yes, I’ve had to change diets for the umpteenth time given the myriad of digestive issues I’ve lived with for years. But this particular diagnosis, for whatever reason, was beyond backbreaking. Why? Because as my dietitian suggested, I suddenly had to substitute salads for baby food and cooked vegetables for soups and smoothies. And it required lots of discipline and a complete overhaul: I had to begin limiting fiber which had been my bread and butter as a vegetarian. Plus grains and I don’t do so well as they are even more binding. It was quite a drastic change and I cried and hit rock bottom as I didn’t know how to make such a liquid diet work with my concurrent Crohn’s, IBS, SIBO and dysmotility diagnoses.

But I learned it could be done with a lot of perseverance and a will to regain some quality of life. And my husband’s support became instrumental in this process. He was kind enough to buy us an instant pot and set up a meal-delivery subscription service that specialized in soups and smoothies. And my dietitian gave me all sorts of tips and tricks to put together easy but nutritious meals to prevent malnourishment.

And now, while I continue to adjust to the gastroparesis diagnosis, I’m also juggling getting a handle on my Crohn’s via the Power Study and additional measures my physicians see fit (see In The Name of Science & Research). It certainly hasn’t been an easy summer but what has helped me is reminding myself, “Tina, you’ve adjusted countless times before. You can do it again.”

So, for all of you who may be facing a new diagnosis, please know you aren’t alone. We are all in this together. Own your Crohn’s, own your gastroparesis, own whatever ailment(s) life throws at you, and work hard at centering yourself to find peace in the midst of medical chaos. Finding my new normal is helping me weather this storm and I promise you I will keep at it.