Personal Update: Normal Gastric Emptying!

Apr 29

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This is the post I've been waiting to write since I started this blog almost seven years ago. More than a decade after being diagnosed with idiopathic gastroparesis... I no longer have delayed gastric emptying! Last week, I had my first normal gastric emptying study (after more than half a dozen delayed ones). And not just "kind of" normal or "borderline" normal... we're talking just 1% of the meal remaining after four hours. That's resoundingly normal.

Of course, if it were only the test result that had changed, it wouldn't mean much. It's the fact that my gastroparesis symptoms have also improved so significantly that has led me to share this exciting news.

I posted this news yesterday on Instagram and there were tons of questions. I'm going to try to address those - and more - in this post. But first, I want to make something very clear.While I do believe that implementing and following the comprehensive management plan that I teach in my books and programs allowed the gastroparesis to resolve over time, I am not claiming -- nor have I ever or will I ever claim -- that following my program will cure anyone of gastroparesis. I can't promise that. Nobody can. And, really, that's not the point of my work. My work is about a) decreasing symptoms b) improving quality of life and c) putting the body into a nourished, relaxed state in which it can function as well as possible. Hopefully that includes a resolution of the problem, but even if it doesn't, you're feeling better and living WELL.

I'm sharing this news not to say, "look, it works!" but because the intention of this blog has always been to provide a source of hope in a sea of scary, disempowering information. And delayed gastric emptying resolving after 12 years is nothing if not full of hope!

I'm including the nitty gritty details of my experience because that's what I've done from the beginning of this blog but also because I know many of you will have questions and I want to address them as fully and authentically as possible. In fact, I'm going to format the rest of the post as a Q&A.

If you aren't interested in all of the details, the summary is this: my gastroparesis symptoms, primarily nausea, fullness, and regurgitation, as well as severe chronic constipation, have all nearly or completely resolved over the past one to two years. I don't take any medication. I do still have symptoms related to IBS and reflux and my diet reflects that as it's low-FODMAP, gluten-free, dairy-free, and reflux- friendly. I do not eat particularly low fiber. There's no one thing that I attribute the changes to, although I think some of the most important things were: truly addressing stress and anxiety; changing my diet to alleviate constipation; and, focusing on nutrient-rich foods. I'll discuss all of these things (and much more) in depth below. So... here we go!

Do you think there was an error in the testing?

No, I don't. Both my motility doctor and I had a feeling the test would show normal gastric emptying based on the gradual improvement of my symptoms over the last year or so. He wrote in his office note from my most recent visit in December 2015, "I believe that, based on symptoms, her gastroparesis is improving."

There is, of course, some variability in the testing and my results have been up and down over the years. I've never had a "normal" result, though... and as I'll outline below, I've had a lot of emptying tests.

Are all of your symptoms gone? Do you eat whatever you want?

This might seem like an odd question since I just told you my gastric emptying was normal, but it's actually a really good one. That's because gastric emptying time doesn't always correspond to symptom experience and, as numerous studies have shown, it's completely possible for gastric emptying to improve without a decrease in symptoms (this is why prokinetic drugs like Reglan, which speed up gastric emptying, don't always provide symptomatic relief).

While I do have digestive symptoms, which I'll discuss below, my gastroparesis symptoms have nearly all resolved over the past one to two years. Nausea was always my biggest problem. Even after I had the gastric neurostimulator implanted in 2009, I was taking Zofran as needed and also using many of the things that I recommend on this site (ginger, QueasEase, Nauzene, etc).

In the past couple of years, the nausea has nearly disappeared (see below). I still have the neurostimulator, of course, and that could certainly be keeping nausea at bay, but I no longer need any prescription or over-the-counter nausea medicine. I haven't taken Zofran in over three years. In fact, when I really began to suspect things were improving was when I discovered that my device had somehow been switched off and we estimated it had been off for several months. The same thing had happened in 2011 and the nausea was so terrible that I immediately went running to New Hampshire to have my doc turn it back on.

Bottom line... nausea, much improved if not resolved.

Same goes for regurgitation. I used to have a problem with effortless regurgitation of both foods and liquids. They'd often just come right back up, immediately after I ate or drank, especially if I was overly full. This is no longer an issue.

Fullness was also a significant issue for me. The fullness has resolved so much that I eat fairly "normal" sized meals now. I used to eat half a baked potato and be stuffed. Now I can eat the whole baked potato and some chicken and still not feel uncomfortable. (I can still eat too much and wind up overly full for several hours but my "too much" now is significantly more than it used to be.)

In terms of pain, the improvement is less clear. That's because while I no longer have delayed gastric emptying and I no longer experience the symptoms that I associate with gastroparesis, I do still have some kind of functional gastrointestinal issue. My doctor is calling it IBS. With this has come new pain that I did not have before. It's actually more of a tenderness, almost a bruised feeling, in my upper right and left quadrants. This started in 2012 and has periodically gotten worse since then, one time landing me in the ER (mostly because I didn't know what it was and I was freaked out). I also tend to have more sharp "gas pains" now, that occur throughout my abdomen and radiate into my shoulders. The mid-chest aching/pressure sensation and the whole-abdomen pain that I used to call my "grumpy pain" because it would just make me totally miserable are both far, far less frequent (as in I can't actually can't remember the last time I dealt with either one.) The nausea I do still have seems to precede (and resolve with) bowel movements, which wasn't the case before. This makes me think the nausea I experience now is more related to IBS than GP.

One thing that has gotten worse for me is reflux. This might be because I'm now eating things that I didn't eat for a decade due to the gastroparesis symptoms... red meat, chocolate, etc. It might also have to do with the fact that until I had Lily, I walked 5 miles a day and for various reasons, I now walk... no miles a day.

Either way, I was first treated for reflux when I was 17 years old - long before I had gastroparesis - so clearly there's something that was going on then and is still going on now. It just, apparently, doesn't have to do with a delay in gastric emptying. For me, though, this is all easier to deal with than the nausea, fullness, and regurgitation were.

Given the IBS-like symptoms and the reflux, I still follow a low-FODMAP diet, and I avoid most "reflux triggers." I also follow a dairy-free and gluten-free diet. The former because my daughter has life-threatening allergies, and we don't keep dairy in the house. I'm gluten-free mostly because I've noticed a significant decrease in bloating without it. Over the past couple of years, my fat intake has increased quite a bit, though I find I still have to limit my consumption as my gallbladder was removed in 1998 and that impacts the digestion of fat.

Basically, my diet is far from "whatever I want" but it's also far from eating a half a potato and calling it a meal. I'm happy!

Update (April 2018): One year later, I do pretty much eat whatever I want in the context of dairy-free, gluten-free diet. My symptoms are even more drastically improved. Both the reflux and the pain that I talk about above largely resolved once I started working with a practitioner who does visceral manipulation type work on my abdomen. I wrote more about that here.

So, what about constipation?

If you've been following me for many years, you probably know that I struggled significantly with constipation. I often said it was harder for me to deal with than the gastroparesis. I could literally take a whole bottle of Miralax and nothing would happen except I'd be incredibly bloated. I used to need 12 stimulant laxative tablets (recommend dosage: 2-4) to have a bowel movement.

In 2010, I did a two-week biofeedback program at the Mayo Clinic in attempt to retrain the pelvic floor and alleviate the constipation. That didn't end up helping (though I wasn't as diligent with the home exercise as I should have been). In 2011, I started taking a drug called prucalopride (Resolor), which isn't available in the US but is used in other countries for chronic constipation. This actually worked fairly well, allowing me to have about three bowel movements per week, however I had to discontinue it in January 2012 when I found out I was pregnant.

What ended up being a big surprise was that my constipation was actually slightly better during my pregnancy, even without the prescription medication. I still used stimulant laxatives throughout the first and second trimesters, though in more moderate doses (approved by my OB/GYN; there are some potential risks). After I had Lily, I was taking "just" two stimulant laxative tablets a day and having bowel movements a few times a week. I thought that was quite remarkable.

Now I haven't taken any laxatives or prescription medication for constipation in over two years, and I have a bowel movement every single day. (I sometimes now have bowel movements too frequently, which is part of the new IBS diagnosis.)This is true so long as I stay away from certain foods. If start eating brown rice protein more than once a week or so, that includes MacroBars and vegan Orgain, I become constipated. Nothing like I was before but noticeably less "regular." These foods may very well have been affecting me before in much the same way... but I was so chronically constipated then, I'm not sure how I would've realized it. (2018 Update: I no longer need to avoid MacroBars and I no longer drink Orgain as I don't need it anymore.)

I don't think constipation caused my delayed gastric emptying, as it didn't start to become an issue until a couple of years after I was diagnosed. I do think, as I teach in the free Understanding & Alleviating Constipation class, that the ways in which we manage gastroparesis tend to cause or exacerbate constipation. And constipation can certainly exacerbate both the symptoms of gastroparesis (nausea, fullness, bloating, pain), as well as the delay in gastric emptying. So, I see it as a cycle and I think that, for me, less constipation meant easier management of GP symptoms, which meant expanding my diet, which maybe reduced constipation more, and so on...I will note, for what it's worth, that I was slightly constipated when I had this normal gastric emptying scan. We were traveling, which always constipates me a bit, and because I wasn't at home I wasn't eating as well. I also find that I'm naturally more constipated during certain parts of menstrual cycle and this happened to line up with the testing. Clearly it didn't have a significant impact on the test, though.

What were your previous 4-Hour Gastric Emptying Study results?

This question came up pretty quickly on my Instagram post, I assume for one of two reasons. Either to evaluate the severity of the delay in gastric emptying before or to see the progression of the results over time. Both are good reasons, but I think it's important to realize that it's not always easy to compare gastric emptying results (either yours or others). That's because there are many variations as to how this study is performed and the results, therefore, are not necessarily comparable.

For example, some clinics do the gastric emptying study with the patient laying down the entire time. Gravity plays an important role in normal digestion, so obviously this is likely to result in slower gastric emptying times than those tests in which the patient only lays down for the one-minute scan each hour. Some clinics use the recommended low-fat, low-fiber solid food meal of Eggbeaters and white toast. Others use oatmeal or soup. Those foods are all likely to empty at slightly different rates. Lastly some studies are only 90 minutes or two hours long, rather than the "gold standard" four-hour study. Emptying rates can varying at these different points, meaning you can have delayed emptying at 2 hours and normal emptying at 4 hours and vice versa.

This is just an aside, but I think it's an important one. You can see why comparing results -- either your own over time or yours to someone else's -- can be problematic unless you know the parameters in which the study was conducted. It's also important to note that some clinics report amount emptied at four hours and other report amount remaining at four hours, so you want to be sure you're looking at the same thing. The general consensus, as far as I know, is that more than 10% remaining or less than 90% emptied after four hours, is considered delayed gastric emptying.

With that out of the way....The test I initially had to diagnose gastroparesis in 2004 was a two-hour gastric emptying study and I don't know the numeric results, only that it showed "markedly delayed gastric emptying."

Since then, I've had several 4-hour gastric emptying studies at the Mayo Clinic and Dartmouth-Hitchcock Medical Center. Both clinics adhere to the protocol recommended by the American Neurogastroenterology and Motility Society (4 hours, Eggbeater meal, laying down only for scans), which makes it easier to compare the results over time.

Here are the results in terms of the percentage of the food emptied after 4 hours (normal is more than 90%):

2007: 50% {no stimulator}

2008: 76% {no stimulator}

2009: 57% {no stimulator}

2010: 87% {stimulator turned off} *

2011: 77% {stimulator turned on}

2016: 99% {stimulator turned on}

2018: 94% at 3 hours; test stopped due to normal results at that point {stimulator turned off}

*The accuracy of the 2010 result of 87% was questioned because of regurgitation issues that occurred during the test, but we didn't repeat the study so that's the best data I have.

In both 2008 and 2010, I also had gastric emptying scans at a GI clinic in my hometown that used a hamburger as the meal and evaluated total emptying time. I don't know how comparable this is to the other tests, so I didn't include them above, but the results were 57% and 61% at 4 hours.

Why didn't you have any scans between 2011 and 2016? When do you think it actually resolved?

I got pregnant in December 2011, so no scans were done in 2012. I saw my motility doc in December 2012. I'd felt relatively good during my pregnancy but at that visit, we were still discussing ways to reduce nausea, adding a scopolomine patch to the Zofran, for example. No reason to think much had changed.

I was supposed to go back in December 2013, but my daughter was hospitalized with Kawasaki Disease so I had to cancel that trip. I planned to return in 2014 but I was still struggling with anxiety and panic attacks and didn't feel up to making the 14-hour roundtrip drive. I was also feeling quite a bit better gastroparesis-wise, so it didn't seem as important.

I saw my motility doc in December 2015, not because of my regular GP symptoms but because of what I now know are IBS symptoms. I thought the GP was flaring in some weird/new way but after talking it through, he said that he actually thought the gastroparesis was resolving. He said he'd seen cases before where the GP resolved after a long period of time and symptoms seemed to "move through" the rest of the GI tract. (Not the dysmotility, mind you, "just" the functional symptoms.) We decided it was time for some repeat testing, both of us being quite curious what the gastric emptying scan would show.

Based on my symptoms, I think things really started to improve within the past two years.

Do you think the gastric neurostimulator is what made the difference?

In terms of normalizing the gastric emptying time, no, we don't think so. My gastric neurostimulator was implanted in 2009. As you can see from the results above, I had nearly identical emptying results in 2008 and 2011 - pre and post stimulator. I also had a better result, if we take it as accurate, with the device turned off in 2010 than with it turned on in 2011. Studies are very mixed as to whether gastric electrical stimulation significantly affects gastric emptying time. The ones that have shown an effect, however, have shown it at 12 months. Thus, my 2011 result may be higher due to having the stimulator in place, but it wasn't normal. My settings have not been changed since then.

Also, the results of the two "hamburger" emptying tests that I had, one pre-stimulator and one post-stimulator, were nearly the same with the total emptying time of the meal pre-stimulator being 7 hours and the total emptying time post-stimulator being a little over 6-1/2 hours.

That said, I do think the gastric neurostimulator helped in terms of my nutrition, stress levels, and certainly for my ability to cope -- all of which I do think played an important role in allowing this to resolve over time. I'll talk more about this below.

Do you think your pregnancy is what made the difference?

For me pregnancy was absolutely a turning point in my experience... but in a rather complicated way. In other words, I don't necessarily think it was just the physical act of being pregnant that changed things.

Obviously, the female body undergoes some significant changes during pregnancy and in the postpartum period. Not just in terms of hormones but also in terms of blood volume, respiratory rate, cardiac output, alignment, immune system... so many variables. Women with various kinds of chronic illness, including gastroparesis, have experienced near complete remissions during their pregnancies.

And I did feel better during my pregnancy. Not as "better" as I do now, but at the time I said it was the best I'd felt in years. And I think that might be a big part of what was so significant about it. I liken it, in many ways, to having the gastric neurostimulator implanted.

The gastric neurostimulator did reduce my symptoms to a degree but that's not, in my opinion, why it was so impactful. Being less symptomatic allowed me to expand my diet and start taking in nutrient-rich foods. It also gave me a sense of hope and relief and allowed me to see that things really could improve, which alleviated some of the constant stress and anxiety around my health. Basically, the stimulator decreased my symptoms a small but significant amount which then allowed me to eat/think/live in a way that decreased my symptoms even more.

Pregnancy did the same and to an even greater degree. For whatever reason, being pregnant seemed to decrease both my nausea and constipation a bit. That decrease in symptoms gave me more leeway with my diet and nutrition. Since it was about not just me but also my baby, I became that much more focused on nutrition and self-care. This is when I started juicing regularly, for example, and when I really made it a priority to eat a wider variety of foods. Not unimportantly, it also gave me something else to focus on besides my health and brought a new sense of joy to my life. Some people may think that's unrelated to health and how our body functions... I think they're quite connected.

Another important thing, that may at first seem totally paradoxical, is that following the birth of my daughter I struggled with debilitating anxiety and panic attacks. This is what led me to really start looking into the mind-body connection. I'd been teaching "stress management" as part of the comprehensive management plan for a few years, but it wasn't until after my daughter was born that I really started to explore the many ways in which this affects our physical health. And not in a "woo woo" way but in a legit physiological way.

This was huge for me. I read a bunch of books about the brain, thoughts, anxiety, and stress. I went to workshops. I tried a variety of treatments. I spent three years focused on overcoming anxiety and panic and I thoroughly believe that working on "rewiring my brain" also helped to improve my physical health. I'd go so far as to say it might have been the most important thing that I did.

So... what's the secret?!

Sorry, there's no secret. If I had one, I'd share it with you! I don't think there was any one thing that I did that led to this outcome. I think it was largely a matter of time and opportunity. By that I mean, providing the body with the time and opportunity it needed to do what it does (repair). I think the most supportive things I did to provide that opportunity were:

Becoming aware of my habitual thought patterns and addressing anxiety
Changing my diet to alleviate constipation
Focusing on nutrient-rich foods to provide the body with energy and the basic building blocks it needs
Spending less time and energy focused on gastroparesis (both in my work and in my personal life)

In my case, the neurostimulator and pregnancy were the catalyst for much of this, but I think there are likely other ways for people to access that "opportunity." That's what I try to help people do with my work.

This post is in no way a "plug" for my work. I make no claims that I am better solely because I followed the principles that I teach. I'm just sharing what I think helped me.

Wasn't your GP caused by EDS? Can that go away?

Depending on how closely you follow me, you may know that I was diagnosed with Ehlers Danlos Syndrome, hypermobility type (hEDS) in 2015. EDS is a genetic connective tissue disorder. The hypermobility subtype is classified primarily by (obviously) hypermobile joints, though there are many other features and symptoms that tend to come along with the condition. At the time, I was told that hEDS was the cause of my gastroparesis. In fact, I wrote a blog post called "Idiopathic No More!" explaining that I'd finally figured it out after ten years. Well... I've since unpublished that blog post, as I grew increasingly unsure that was true. I'm even less so, now.

Before I was diagnosed with EDS, I'd been noticing that my GP symptoms were resolving. Once I had that diagnosis as an explanation for my symptoms, I began to waiver on that observation. If something is causes by a genetic condition, it seemed unlikely that it'd get better without that condition being treated. To be honest, it was kind of deflating.

Well, a couple of months later when I went to see my motility doctor, we discussed it and he said he wasn't convinced that hypermobile EDS actually *causes* GP. (I know this goes against what many people with EDS and GP believe, but I'm relaying the information that I heard and what has come to make sense to me.) Yes, lots of people with hEDS also have GP but that doesn't necessarily indicate causation. That conversation allowed me to say, "Okay, this is actually improving and maybe I was right to believe it can still go away."

That said, I know I have some kind of predisposition to GI dysfunction. My mom, who also seemingly has hEDS, has had mild GI symptoms her whole life. Nothing that has needed treatment or even diagnosis, but they're noticeable even if not particularly bothersome. I've had "weak digestion" as long as I can remember. So, it makes sense to me that hypermobile EDS predisposes one to GI dysfunction. In my view, the "cause" of my gastroparesis was multi-faceted. I've called it a "perfect storm" of factors before and I still believe that to be true. EDS was probably one of those factors. But if my experience is any indication, that doesn't mean it can't resolve anyway.

Do you consider yourself in remission?

This wording has already come up a few times and I know it's common within the community. No, I don't personally choose to use the word "remission" because, if you look up the definition, it means "a temporary improvement." I don't choose to look at this as temporary. Not because I'm naïve to the fact that nothing is certain, and things may change but because I don't see any benefit in holding that belief. For me, perhaps not for others, the idea that this is temporary would only breed worry and a sense of waiting for the other shoe to drop. If things change, I'll deal with it when they do. (And, as I've always been totally honest and open here, if that were to happen, I'd share that with you, too.)

In the meantime, I'm just considering the GP to be resolved. I'm just living WELL.

Update (9/2019): I have become more symptomatic over the past 6 months or so. I don't know if my gastric emptying is delayed again, as I haven't had an emptying scan since the last normal one in 2018. Either way, my experience of the symptoms is quite different at this point. I talk all about it here.

What about your gastric neurostimulator now?

I'm not sure, yet. The plan is to turn it off and see how things go. Assuming I feel fine, we'll decide what to do from there. I'll keep you updated on that front!

Update (9/2019): My gastric neurostimulator has been turned off since 11/2017. While I am more symptomatic now than when I wrote this post, I manage symptoms with dietary and lifestyle modifications and haven't felt the need to turn my stimulator back on or take medication. I've shared more here.

What does this mean going forward?

Honestly, it doesn't change much as my life has been slowly changing over the past year or two as my symptoms resolved and changed anyway. I do hope it means that my story will be an inspiration to others who may think that things can't get better.

In 2009, I had what would be considered severe gastroparesis based on my test results and the severity of my drug-refractory symptoms. I had tried 14 different medications. I had been to a whole bunch of doctors and spent weeks at the Mayo Clinic undergoing testing. I had lost a total of 50 pounds. I couldn't work. Most of time was spent on the couch. I couldn't sleep more than 3 or 4 hours a night due to the nausea. Basically, things looked very bleak.

Now, seven years later, far beyond the time that most people believe gastroparesis can resolve, I no longer have diagnosable gastroparesis. I'm not nauseous. I don't take any medication. I've only seen my motility doctor once in the past three years. I eat in restaurants. I eat a fairly normal amount. The last vacation we went on, I didn't have to bring a suitcase full of food. I'm back to my pre-gastroparesis weight. I have a healthy three-year-old daughter whom I take care of full-time while still working as a health coach.

I don't feel perfect. As I said, I struggle with IBS symptoms and reflux. I still have issues lingering from my pregnancy and I’m still dealing with anxiety symptoms, having nothing at all to do with gastroparesis or digestion. But my life is so much more "normal" than it has been in the past twelve years and I'm just incredibly grateful

I'm also incredibly grateful that you've shared this journey with me. Above all, I do hope that my story, this website, my work helps to inspire and empower you. That's been my purpose from the beginning. I hope to be able to provide more resources going forward, specifically related to anxiety and that aspect of my journey.

Update (September 2019): I also really recommend reading this blog post and listening to this podcast interview where I share what really changed my experience of gastroparesis (and it wasn't these normal gastric emptying tests!).