A Conversation with Samantha Sauer
We sat down with Samantha Sauer, President of Gastroparesis Patient Association for Cures and Treatments (G-PACT), a nonprofit dedicated to supporting people living with gastroparesis and related digestive motility disorders.
In this interview Samantha shares how her own experience with gastroparesis and recurring SIBO has shaped her dedication to patient advocacy and her deep commitment to supporting others with complex digestive conditions.
Before the diagnosis
Before we dive into your health journey, tell us a little about yourself. What are some of the things that bring you joy, keep you motivated, and make you who you are?
This question is harder to answer than I’d like to admit! Some things that bring me joy are going for a run (when my body allows), curling up with a good book, and Marvel movies. For everything else, what keeps me motivated is the gastroparesis community. We’ve had such little help for so long. Knowing that what we’re doing at G-PACT is making a difference helps me on the hard days.
When did you first realize something might be wrong, and what were those early symptoms like?
I distinctly remember when I knew something wasn’t right. It was Christmas dinner just over a decade ago. It was one of the best meals, a lot of my favorite foods, and they made me SO sick. I was throwing up all night, my stomach was hurting in ways I never experienced before, and it didn’t stop. I experienced a lot of hard days and confusing days after that, which eventually led to my diagnosis.
Looking back, what was the hardest part of the journey before finally receiving a diagnosis?
For me, the hardest part was feeling like my life had changed overnight. I had been struggling with health issues earlier that year, but I could tell this was different. Realizing this might be my new reality, while having no idea yet what was actually causing it, was tough.
Understanding gastroparesis
If you were explaining gastroparesis to a family member with no medical background, how would you describe it?
Put simply, gastroparesis is when your stomach doesn’t move food properly. Digestion is much slower than it should be. Food can sit in the stomach longer than it should, which can cause nausea, vomiting, pain, bloating, and feeling full after just a few bites. The tricky part is that it can be unpredictable, and what works one day may not work the next. Foods high in fat and fiber can make symptoms worse, and finding foods that are tolerable can be very difficult because what works from day to day or patient to patient can be very different.
Can you describe a day that captures what living with gastroparesis is really like? What are the challenges that people do not usually see?
The unpredictability for me is the worst. I was diagnosed over a decade ago, and even after all these years, I still never know what my insides are going to do. One day I might have minimal symptoms, and that doesn’t always translate into how I feel the next day. You can do everything right, and it doesn’t make it easier. I think the isolation that comes with it is hard to understand. Most, if not all, social events are around food or include food. When you can’t eat anything, or when people keep trying to offer “just one bite” without understanding “one bite” can have heavy consequences, attending social events starts to feel so stressful. Eventually, you just can’t go to the events anymore because it’s become too physically and emotionally hard to be there.
What do you wish more people, including healthcare providers, understood about living with gastroparesis?
Gastroparesis isn’t just a “stomachache.” It can affect every part of your life: eating, working, socializing, traveling, exercising, relationships, and even your mental health.
I wish clinicians understood how unpredictable it can be. You can look completely healthy on the outside and still be incredibly sick. You can tolerate a food one day and be completely unable to tolerate it the next. And, if treatments don't work, it's not because you're not trying hard enough.
Mostly, I wish healthcare providers understood that patients are experts in their own bodies. We don't expect every provider to have all the answers, but we do need to be listened to, believed, and treated as partners in our care. Sometimes just hearing someone say, “I believe you” makes all the difference.
When SIBO entered the picture
When did SIBO become part of your journey, and how did you realize something more than gastroparesis might be going on?
I had my first positive breath test with SIBO a long time ago. The nausea, bloating, loss of appetite, etc. was WAY worse than usual, and my usual medications and treatment weren’t working. My doctor mentioned SIBO and scheduled a breath test. Once I had a positive breath test and we knew what was going on, I started the antibiotics right away. It took some time but I was able to feel better after being on the medication. Being on antibiotics is always hard for me, they definitely bother my stomach, but I was able to take them and get my symptoms under control.
Did having gastroparesis make it more difficult to recognize or diagnose SIBO? Were there any challenges getting someone to take those symptoms seriously?
Absolutely, gastroparesis makes things more difficult. I think a lot of that is because the symptoms overlap quite a bit, and when those symptoms get worse or unmanageable, it can be easy to assume it’s just a progression of the gastroparesis. If you’ve never heard of SIBO, you would not even know to ask to be tested for it as a possible source of the worsening symptoms.
Looking back, what do you wish you had known earlier about the relationship between gastroparesis and SIBO?
I wish I’d known what SIBO was and to get tested earlier. I also recently learned how SIBO can slow down motility too, which no one ever mentioned to me before. I also didn’t know it can lead to more absorption issues in the more severe cases, which explained a LOT of my own symptoms.
Learning to live with chronic illness
Living with gastroparesis often means constantly adapting. What are some of the “little things” that people without gastroparesis might never think about but become a big part of daily life?
Doing ANYTHING with gastroparesis is a chore. I don’t just mean daily life and functioning. I mean leaving the house, traveling, exercising, or anything where you need to be a functional human is so hard with gastroparesis. You have to make sure you have your medications, snacks, water, electrolytes, or protein. You need to know where a bathroom is going to be, how long you’ll be away, etc. It takes a lot more thought and preparation than it would for someone without gastroparesis. You can’t do anything on a whim anymore.
Many people with SIBO experience a recurrence of bacterial overgrowth, especially when they struggle with another gut motility disorder. What has been your journey to keep SIBO in remission?
Currently I'm on a monthly regimen of antibiotics to keep everything at bay and have been working on diet modifications to help manage symptoms and to try to limit any recurrence. I do have less symptoms, meaning the medication works. But I'm hoping that treatment doesn't mean I have to forever be on antibiotics. I'm hoping continuing to monitor symptoms and food triggers, while working with a dietician will help. It's hard finding the best options for nutrition when what works for SIBO doesn't always work for what I tolerate as a gastroparesis patient.
What are some of the most helpful tips or routines that have made life easier for you?
Make lists! Lots of lists! Lists are the most helpful thing to keep me on track for travel, medications, etc. Also, finding a routine around medications and food (which takes a lot of trial and error) helps me identify triggers and helps me feel better because I’m doing things in a similar way each day.
The role of G-PACT and patient advocacy
How did your own experiences lead you to become involved with G-PACT?
Once I was diagnosed and experienced how dysfunctional the healthcare system was, the insane lack of treatments, and the nonexistent help available to gastroparesis patients, I wanted more. I knew G-PACT existed because that’s where I went to learn about gastroparesis. I wanted to do more within and for the gastroparesis community. That was over ten years ago now! Being a patient running an organization for patients isn’t easy. Patient advocacy is never easy and some days feel really defeating. But I love this community and I’ll never stop fighting for it.
For someone who has just been diagnosed with gastroparesis, how would you describe G-PACT and the community it has built?
We’re here to meet patients where they are. We want patients to feel safe, supported, and validated in their patient journey. Our community is strong. We want others with gastroparesis to know we are here for you no matter where you are on the diagnostic journey. We are here to help you in the best way we can. We especially want to help you be the best advocate you can be for your own needs. We’ll also continue to advocate as loudly as we can for you. Having this diagnosis is hard and isolating and we’re here so no patient ever feels alone.
What types of resources or support do you think make the biggest difference for patients and families?
I think it’s a tie between our support groups and the education we provide. As a patient myself, I feel safer when I have more information to make the best decision possible for my care, but I also feel safer when I feel seen. Feeling seen comes from being around other people who get what it is like to have gastroparesis.
If someone reading this interview wanted to become involved, where would you encourage them to begin?
Check out our podcast, Surviving out of Spite, and come to a support group. We have a nice mix of experts, patient stories, and everything in between over on our YouTube channel. Our support groups have grown, and they’re a great place to learn, be around others like you, and hear more about who G-PACT is.
Looking forward
What message would you like to leave with someone who is reading this today after receiving a diagnosis of gastroparesis or SIBO?
Receiving a diagnosis of gastroparesis and/or SIBO can feel incredibly overwhelming, but it doesn't mean your life is over. There will probably be some trial and error. What works for one person may not work for you, and that's okay.
Remember to give yourself grace, find people who understand what you're going through, and remember that you are so much more than your diagnosis. It’s possible to live a life beyond your illness.
Learn more about G-PACT at its website https://g-pact.org/