Eating with Gastroparesis: Low FODMAP Diet: What it is + why it is beneficial

By: Carolanne Monteleone

First off, I need to preface this with a reminder that what may work for one person with gastroparesis may not work for another. This is simply a general rule of thumb and helpful tool to aid you in balancing food and delayed gastric emptying. 
To start off with the basics, here a few scientific facts about how digestion can be slowed down further with what you eat: 

• Liquids – Thin liquids travel faster from the stomach to the intestines than thick liquids and solids.
• Fiber – Fiber slows down gastric emptying, so those with gastroparesis should keep fiber intake low.
• Fat – Higher fat foods slow down gastric emptying. Carbohydrates pass through the stomach the quickest, followed by proteins.
• Food temperature – Hot foods move through the stomach quicker than cold foods.

(source: Katelyn Collins gastrogirl.com) 

Now with that knowledge on hand, let’s break down why eating a low FODMAP diet helps patients with gastroparesis: FODMAP is just a fancy acronym  for fermentable oligosaccharides, disaccharides, monosaccharides and polyols, which are short-chain carbohydrates which are hard for the GI system to digest. By eliminating foods that can irritate the stomach or cause delayed emptying, you have a much higher chance at being able to tolerate foods orally. 

So what foods are high FODMAP and which are low FODMAP? As you can see in this graphic, the basic breakdown is to avoid: dairy, wheat (gluten), beans and lentils, and certain fruits and vegetables. Also don’t forget that red meat, high fat foods and fiber can all aggravate the stomach as well. 

If you’re looking in your pantry thinking, “well what’s even left to eat?!” you are not alone! This elimination diet is tricky and trial and error is the only true way to know how your body will react to these foods. But don’t fret! There’s a long list of low FODMAP foods that are typically well tolerated by GPers. Here’s a curated list of groceries you may want to pick up and give them a try:

•  baby food purée (check to make sure the fruit and veggies in it are low FODMAP)
• starchy foods such as potatoes without skin, white rice, gluten free bread and gluten free pasta 
• puréed soups such as butternut squash, potato, pumpkin, parsnip and sweet potato
• ginger! Add it to any dish you can. Not only is it low FODMAP but it has anti-nausea properties as well
• almond milk or rice milk (including ice cream, pudding and yogurts made from these milks)
• lean meat such as fish or chicken breast

This is by no means an exhaustive list but it will help point you in the right direction. You can also check out G-PACT’s cookbook for tummy friendly recipe inspiration! Don’t be afraid to try out nutrition drinks such as Ensure, Boost, Kate Farms, etc. as these drinks are usually easy on the stomach, high in calories, nutrient dense and liquid. 
Here’s a low FODMAP recipe to get you started:Lo MeinMakes about regular 6 servings (keep in mind eating smaller portions with gastroparesis is a good idea)

•  box of rice noodles 
• Just enough veggie broth or stock to mix in with the noodles 
• generous heaping spoonful of powdered ginger
• 2 scrambled egg whites
• soft, well cook veggies like carrots, bok choy or zucchini if tolerated

1. Prepare noodles as stated on the box
2. Once al dente, place noodles in a wok or frying pan and add either your broth or stock covering the noodles
3. Add in ginger and stir
4. Scramble egg whites into the noodle mixture and let it simmer until most of the liquid is thickened up and absorbed
5. Add in well done veggies (optional!) and give it one last good stir
6. Plate up and enjoy!”

Recipe Wednesday

Each Wednesday of Awareness Month, we’ll be sharing a Gastroparesis friendly recipe on our social media pages. Make sure to keep an eye out each week for a new recipe! First up, Vanilla Pudding!

Awareness Month Continues….

Have you noticed G-PACT has a new look? Our team had some pretty awesome externs during the spring who helped with awareness month, and more. We’ll be introducing the amazing team each week during Awareness Month. Today, we introduce some of the extern team, beginning with Eva. 

The moment Eva could pick up a pencil, she knew her life would forever be filled with art. Having an Associate’s of Applied Business in Design at the Modern College of Design, studying to achieve a Bachelor’s Degree as well, Eva’s main focus is Branding and Digital Illustration. Being a patient of Gastroparesis for over 10 years, art therapy and her close relationship to her family are what helped her through the hardest of times.

Next up on the extern team, is Evan Leigh. 

As far back as Evan Leigh can remember she has been drawing, painting, writing, and taking pictures when she could get her hands on a camera. Wanting to continue to be creative and not wanting to have a regular job where she is doing the same thing over and over again, she chose to become a Graphic Designer, which led her to The Modern College of Design, focusing on Branding, Print Design, and Photography

Gastroparesis Awareness Month

Happy Awareness Month! If you don’t already know, August is Gastroparesis Awareness Month! Each year, G-PACT posts all month long sharing stories, information, fundraisers and more! Our goal is to bring more awareness to Gastroparesis and highlight patients from our awesome community.

Each Monday, we’re sharing a patient story. Some of you may know about our first patient already. Her story on TPN was featured on the Pact Blog a few years ago. Over the years, her ever evolving story has been shared to help advocate for, and inspire others living with the disease. Our first patient story is our very own G-PACT president, Samantha….

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When I got my first diagnosis, my whole world was flipped upside down. I was thrust into a world of doctors, needles, appointments, medication and fear. I didn’t know it then, but who I was and the life I knew it was gone. There are a lot of things I could talk about when it comes to living with chronic illness but for me, this became the most important.

In the midst of the chaos, it was important to find something to calm the storm. For me, that became running.

I want to preface this by saying I was never an athlete. Actually, I hated running and teenage me would laugh at the prospect of me running for fun.

It has never come easy for me. I get asked often how I’m able to make it work. Truth is, sometimes it doesn’t. For two years, I ran with a feeding tube. I had to find a proper balance of nutrition and exertion so I was able to safely run without trouble. I’m a diabetic so I was constantly adjusting insulin and food intake around my runs. I have a port for daily calcium infusions and had to have a good idea where my calcium levels were before a run to make sure I didn’t drop and cause a whole mess of trouble from low calcium. My robot parts, as I lovingly refer to them, have helped keep me alive, but also can make running even more of a struggle.

Don’t worry. This isn’t me telling you to start running. If you can and do, awesome! Welcome to the club! If it’s not your jam, that’s cool too. What I want to urge you to do is find your thing; find that thing that helps remind you that your life is worth fighting for.

Running allows me to just BE. It gives me time with my body. My body and I have to learn to work together to run. It physically keeps me strong, but more importantly, it keeps me mentally strong. It’s the one thing I REFUSE to give up. It lights the fire inside me to fight for the life that illness has tried to take from me over and over again. Doing hard things makes us stronger. It might not feel like it in the moment, but I know I’m better for it. I like knowing I conquered something I didn’t think I could. Really, who wouldn’t? Knowing I beat the thing that was trying to beat me…there’s nothing like that.

Every year since I’ve gotten sick, I think damn that was a hard year. Surely enough, the following year was always harder and more complicated. There were many times where I wasn’t able to run or do much of anything but survive. Running taught me how to survive. It taught me that you can fail your way to success. It taught me that no matter what happens, you can’t lose if you give it your all.

Last year while training for my half marathon, I became septic. It’s an unfortunate risk that comes with having a central line. It was my third time and by far the worst. While in the ER, I wasn’t sure I was going to make it. I felt the fire in me being put out and slowly could feel my body giving up. Somehow, I made it through and got through some really tough days that were ahead. While I don’t remember the first few days in the hospital, I do remember asking the doctor when I could run again…and he looked at me like I was nuts! To this day, I believe, and my doctors do  too, that running saved my life that day.

When you find what sets your soul on fire, something changes. You aren’t afraid to fail, you just keep pushing forward. I had an injury to my hip in 2018 that put running on the back burner for me. I was at risk of causing more injury if I pushed it. I had it surgically fixed in the beginning of 2019. I was immobile for a few weeks; and unable to run for months. I had moments where I wanted to give up. I had moments where I felt like I would never get my ability to run back. You see, I wanted to run so damn bad that I absolutely refused to give up. I told myself I was going to run a half marathon that fall, come hell or highwater.

Ten months post surgery I crossed that finish line. If I hadn’t wanted it as badly as it did, I don’t think I would have gotten there. You see, I firmly believe that when you find something that does for you what running does for me, you become unstoppable. You stop saying why me? And start saying why not me? Chronic illness will always be with you. It will take from you. It will knock you down. It will try to break you. It will make you want to give up. Chronic illness can also teach you how to fight. It can give you the fortitude to take on the world. It can show you exactly what you are made of.

The night before my first half, I wrote “I talk a lot about running, probably too much. When you’re as passionate about something the way I am about this, you’ll know what I mean. I walked down to the arches today and immediately felt a tightness in my chest. I’ve set many goals for myself over the years, and due to unforeseen circumstances, usually health related, I’ve had to either change the goal or give it up. Going into 2019 facing down hip surgery was no joke. I had NO idea if I’d be able to run the way I wanted to after I healed. I didn’t even know how well I would heal. I wouldn’t let go of my goal and that helped me through. These last ten months haven’t been easy, but being here…it’s so satisfying. I’m nervous, I’m intimidated, and still wondering how I’m going to pull this off. No matter what happens tomorrow, I did what I set out to do. I ran 265 training miles. I never gave up, even when it was unbelievably hard. The moral of the story is perseverance, so tomorrow, we run.”

And run I did.

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The PACT blog always wants to hear from you! If you have a story you want to share, email us at smiths@g-pact.org!

Reflecting on 18 Years

To conclude this years awareness month, we share a very special piece written by G-PACT founder, Carissa. It’s an important piece that not only looks back on what’s been accomplished in the last 18 years, but also what is to come.

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It started out as a hobby that turned into something I never anticipated. I was 23 years old, just out of college with a B.A. in Studio Art and double concentration in Graphic Design and Illustration. I was planning to attend graduate school for Art Therapy, starting in the Fall of 2000. Unfortunately, my health had deteriorated to the point that I was no longer able to consider a move, classes, or rigorous schedule and courses required for a Masters Degree in that program. I was unable to work, quickly approved for disability, yet I had a passion to do something. That’s what eventually led to the founding of G-PACT  in August 2001.

I have been fighting Gastroparesis since 1994. At that time, resources were limited. There was minimal internet to access information, and what was available was sparse. I had to accept what my doctors were telling me as truth without having the option to speak to others about their personal journeys and share stories. As the internet grew, I became even more determined to seek out any information I could find, recognizing that I did not fit into what my doctors considered a typical case of Gastroparesis.

Immediately after graduation in 2000, I decided to use my time to create my own personal website to share my story and increase awareness of Gastroparesis. At that time so little information existed so my site was high in rankings on search engines. I received so many messages from all over the US asking for information. Everyone shared a unique story and were seeking others who could relate. I was so overwhelmed with the responses that I decided to start a Yahoo group so everyone could connect with each other and share experiences.

I did not expect the group to get more than 50-75 people total. I was amazed as the numbers climbed into the hundreds within months, and eventually into the thousands. The growth of the Internet was changing the world and the loneliness of fighting GP.

As the core group grew very close, we realized there was a need for a non-profit dedicated to fighting Gastroparesis. I gathered a group together, we met for a few months to discuss our ideas, and they chose me to be the President. I agreed, on the condition that they understand that I was planning to go to grad school in a couple of years and would no longer be able to able to do it. I filed the paperwork with the PA Department of State on August 23, 2001 and we became an official 501(c)(3) non-profit.

Clearly my life took a different path. My health continued to deteriorate. Eventually, I went through a 5 organ transplant in 2006 which included my small bowel, stomach, pancreas, liver, and duodenum. Although I had almost no chance of surviving the initial operation, I came through it extremely well. During the three years I was out for transplant, a few dedicated volunteers kept G-PACT alive.

In 2007, I had no desire to return to G-PACT. I was ready to move on to new adventures. However, too many people wanted to get it up and running and encouraged me to relaunch our programs and begin expanding. I agreed to do it, again, with the understanding that I was going to go to graduate school in a couple of years. Instead, I developed even more health conditions and was never able to begin my graduate program. Over the years, I have been in and out of G-PACT, at times unable to be involved as I have been in various hospitals and nursing homes, and struggling with conditions which left me bedbound. Other team members have always jumped in and helped G-PACT continue to move forward in my absence. G-PACT has been lifesaving for me too, giving me a purpose and reason to keep fighting in a way in which could accommodate my unpredictable extended absences.

As of October 1st, 2019 G-PACT will have a new President. I am stepping down in order to take some needed time to pursue some passions I have had since college. Although I am not planning to attend graduate school anymore, I have a passion for writing and illustrating children’s books, volunteering in my local community more, and having the ability for more down time to focus on improving my health.

As I look back 18 years, I don’t regret that my own plans were disrupted. I have seen how much G-PACT has grown and how desperately we have been needed. I love G-PACT. I love how patients have been so involved in who we have become by suggesting needed programs. It has been exciting to see the growth. I have enjoyed connecting with patients on a personal level. I love the heart, passion, and personality of the organization. I have enjoyed making it an organization with a serious mission, yet some fun and creativity with a personal touch. It has been amazing to see how much we have impacted the world of DTP from the awareness color choices, the founding of awareness month, the policy changes we have influenced, the awareness and education of so many who would have never been correctly diagnosed, to the support and many resources we have been able to provide. We may not get paid, but the stories we have heard from all over the world from patients who have been impacted by our work and to recognize that we have laid a solid foundation for others to carry and advance forward is pay enough. You can’t put a price tag on that!

We are right here with you. We are fighting every single day too. I encourage you to support the new President, Samantha Smith, and the team as they lead G-PACT forward. Take the solid foundation we have worked so hard to develop, come together as one community, and help eradicate DTP for future generations.

“​Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” Margaret Mead

Thank you for giving me the opportunity to serve you for 18 years and believing in the mission of G-PACT and our passion to fight for all of those suffering from any form of Digestive Tract Paralysis.

Meet the Team: Carissa

For our final Meet the Team post, we have our founder, Carissa Haston.

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– What is your current role with G-PACT?
President and Director of Creative Productions

–What brought you to G-PACT?
I was diagnosed in 1994, at the age of 17. At that time the internet was in its infancy, and no online resources were available. I was not able to connect with anyone else who had GP for years.

After I graduated from college in 2000, I had plans to go to grad school for Art Therapy. When I realized I was not going to be able to go due to my health, I used my graphic design knowledge and decided to start a personal website to showcase my art, share stories about my life, and reach out to others with gastroparesis. I started to get so many contacts through my website that I couldn’t respond to everyone! That’s when I decided to start a Yahoo group so a number of people could communicate with each other and discuss life with GP.

I expected to get about 50 people in the group. Within just a few months, there were several hundred! After a year with close to 1,000 patients, it became clear we needed a non-profit dedicated to dealing with the challenges of GP and seeking a cure.

As leader of the Yahoo group, I was able to bring together a small handful of people who were interested in helping in the founding of G-PACT. I was unanimously nominated to take on the role as President. We started initial meetings around March 2001 to discuss mission, goals, and develop ideas on how to operate. On August 23, 2001, I walked our Bylaws, Articles of Incorporation, and other legal forms into the PA Department of Charities, making us authorized to officially begin operating as a 501(c)(3) non-profit.

G-PACT has changed some over the years due to growth, change in leadership roles, adding additional conditions, and gaining high respect and popularity in the gastroparesis world. However, the core of G-PACT has never changed. G-PACT has a heart and unique personality which is appealing to patients who are struggling. We are all volunteers who in some way are dealing with gastroparesis, chronic intestinal pseudo-obstruction, and/or colonic inertia. Knowing that a cure could take years, even decades, we understood that patients had unique needs that the medical community could not address. Our mission is to provide resources to patients to help manage Digestive Tract Paralysis as well as possible now, while we advocate and fight for a cure.

-How long have you been with G-PACT?
As one of the founders of G-PACT, I have been with G-PACT for 18 years. I am the only founder who is still volunteering with the organization.

–If you were stranded on a desert island and could only take three things, what would they be and why?
Well, considering Wilson floated down the ocean in Castaway, I don’t think I’d take a volleyball.

1. I’d take another person. Two people are more likely to survive together than one, and each will have unique skills which will make working through survival techniques easier. Plus, the second person is allowed to bring three things too, right? So, that increases the number of items we will have available, especially if my person brings someone else along too…and so on…:)
2. I’d take a knife to hunt small animals for food. It would be more useful for me than a large knife. I could make tools I need to build items, cut wood to TRY to get a fire started, and make weapons to protect myself and the person with me. Eventually, I could build a boat using a combination of the natural resources available and get us all off the island, or send one person to go find help! A knife is crucial!
3. Assuming I’m surrounded by saltwater, I’d take a filter to get rid of the salt in the water and any potential bacteria. I can’t survive an island for long without water, especially if it’s in a region where I won’t get much rain or snow!

–Who has inspired you most in your life and why?
My parents. I wouldn’t be alive if not for them. They have always been around for me when I’ve been so sick, provided for my needs when I couldn’t do it, and have stood up for me against medical professionals when I haven’t been able to do it myself. They have spent many days and nights with me in the ER or hospital sleeping on hard chairs in uncomfortable positions.

One of the most inspiring aspects of my parents is how their marriage has carried on in spite of how sick I have been, and years when they were separated while I was away for medical care. Most marriages in which a child is seriously ill end in divorce under normal circumstances. In my case, my mom moved to Pittsburgh with me for two years while I was waiting for a five organ transplant. My dad stayed in Harrisburg to work. Although he made occasional trips to Pittsburgh, they were limited. My mom was not able to leave me to go to Harrisburg to be with him at all during those years. I was unable to care for myself, developed major emergencies frequently, and could get a call for the transplant at any time.

About 6 years after the transplant, I started having some serious complications that had my mom and me in Pittsburgh for most of three years again. Still their marriage held together. What an example in a time when divorce is so common and easy to obtain. I can’t imagine my life without both of them in it; not as single, separated parents; but as a married couple as much in love, if not more, than ever today.

-What’s been your biggest hurdle since your diagnosis?
The hardest part of being ill for me is feeling as if I don’t have the energy or strength to do all that I want to do, and knowing that I have no control over how I will feel from one minute to the next. I love life. I want to do so much. My dreams are not unreasonable for a healthy individual, but my limited energy, strength, pain, medication side effects, long and frequent hospitalizations, and complications from the many procedures have shortened the amount of time and energy in a day I am able to accomplish what most people can.

It is unfathomable to me how anyone can work a full-time job, have kids, come home and cook dinner, give the kids a bath or run to school programs or games, pick them up from practices, get the kids in bed, and then get up and do it again. Then, when I consider the weekends and soccer or baseball games or practices, school events or other programs, shopping for groceries, clothes, or other necessities, it is overwhelming. Just a couple of those tasks in one week is enough to exhaust me to the point that I can’t function.

It is so hard for me to feel like I have to measure out my days and try to plan based on how much energy I may have and when it may be depleted. The unknowns, ups and downs, and inability to truly be able to plan and make a set commitment to anything has always been a struggle. I hate backing out of any commitment I have made to anyone. It is so hard to not feel like I’m letting people down when I can’t do something I offered to do, or it takes me much longer than I anticipated because so much else gets in the way.

People often don’t understand that being chronically ill and on disability is not being lazy. Being chronically ill is more than a full-time job in itself. The appointments, tests, contacting insurance companies as needed, keeping up with paperwork, trying to get in touch with medical staff, scheduling appointments, and trying to keep all doctors on the same page is enough work alone. However, beyond that, there is no break from the illness itself. I can’t go on vacation and leave any of my illnesses behind. They insist on coming with me! Not only that, but they typically decide to hit me harder when I do try to go somewhere! I can’t sleep them off. I can’t run them off. I can’t hobby them off. They are always in control. The best I can do is try to work through the symptoms.

After 25 years, I have developed a lot of techniques and I can handle many symptoms and still function, but there are many days when I have no control over how they impact me, what time of day they will affect me, how severe one or many will affect me, and I can’t take a day “off” from them. One thing I haven’t conquered yet is how to call in my illnesses and tell them I need to take a sick day and stay home to be well for a day! If only it were that easy!

-What’s one piece of advice you’d share with someone newly diagnosed?
Find a strong support system. That’s crucial. Find physicians who believe you and are willing to try options “out of the box” if standard treatments don’t work. Find family members, friends, and other medical staff who believe in you and will support you. If you lose friends over being ill, don’t keep pursuing them. Look for people who will. Don’t be afraid to seek help from a counselor. You can’t do this alone. There are options for support and it’s critical that you develop the best support system you can. Some people will stick with you. Some won’t. You need others who will be there for the haul.

Honor Patient: Jenna

Last but not least, our final honor patient of the month, Jenna.

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“The patient is so pleasant in the exam room that the root cause of symptoms must be psychological in nature.”

This is a direct quote from a cardiologist at Mayo Clinic who examined me for just forty-five seconds. It was like Speedy Gonzales meets Judge Judy. From this doctor’s perspective, smiling and being polite aren’t consistent with any form of physical illness.


I wish I could say this was an isolated incident, but it’s actually representative of the majority. I was born with a genetic condition called Ehlers-Danlos syndrome, hypermobility type (hEDS). It impacts all organs and body systems that involve connective tissue: cardiovascular, gastrointestinal & autonomic nervous system, to name a few. As a result, EDS has a domino effect, bringing a variety of secondary conditions to my table–gastroparesis, mast cell activation syndrome (MCAS), postural orthostatic tachycardia syndrome (POTS), among others. I was formally diagnosed with each physical condition, all backed up by positive test results. I have always been sick, but the debilitating symptoms didn’t manifest until my early twenties. Many doctors looked right past the paperwork and made up their own conclusions based on the width of my smile.

In nursing school, I learned about the doctor-patient connection from the inside out. The doctor presents their solution to a health problem, and the patient obeys. When I first fell sick, I took my doctors’ advice to heart because I believed in them. I quickly learned that they did not believe in me. Despite hundreds of positive diagnostic test results, I was falsely labeled as the girl with only anxiety, depression, or a restrictive eating disorder. After all, how can a previously healthy young woman fall ill out of thin air? It just had to be in my head, right?


It didn’t take long for other doctors to follow in my cardiologist’s footsteps. One gastroenterologist tried to convince my mom to place me in a group home for young women with anorexia nervosa. My primary physician cycled me through six antidepressants before admitting depression wasn’t the root cause. Every time I’d start at square one with a new doctor, I almost expected them to blame it on the brain. The naysayers outnumber the believers, tenfold.

The few doctors who believed me still didn’t get it right. I became a personal project for them, some even admitting that my recovery would “put them on the map.” If they could help me get better, they could help anyone. A former, overly-confident endocrinologist misdiagnosed me with Hashimoto’s disease. He prescribed medication before drawing any labs, which destroyed my normal thyroid hormone levels. When I tried to confront him about it, he hurried me out of the office. Similar encounters with other physicians have complicated my health even further. Some medications have triggered anaphylactic reactions, others caused unbearable pain & nausea. Pills became either my best friend or worst enemy.

Eventually, I realized I’m on my own. You can’t blindly throw medication at a complicated illness and expect positive results. If I wanted to get better, I knew I’d have to put in the work myself. You can lead a horse to water, but you can’t force the pills down his throat.

The first half of 2018 I focused on taking back control of my life. I weaned myself off all unnecessary medication, cleaned up my diet, learned to walk again, started conditioning my body through exercise and focused on my mental health (socializing, seeing a therapist weekly, enforcing personal boundaries, etc). For a while, it worked! I earned back a few of my abilities, like driving short distances & eating creamier soups. For a few short months, I felt like my old self again.

Unfortunately, nothing lasts forever.

I was diagnosed with superior mesenteric artery syndrome (SMAS) in June of 2018. The extreme weight loss from gastroparesis caused a physical deformity that further inhibited my ability to eat. Within a matter of weeks I went from running on the treadmill to fighting for my life in the ICU. These drastic variations in health are the epitome of chronic illness, and that’s the hardest pill to swallow. I can’t expect anyone around me to recognize my abilities when I’m not even sure what they are moment to moment. After I lost most of my newfound independence, the judgment poured in like a monsoon. I tried my best to spread awareness while still maintaining whatever abilities I had left. I didn’t do it alone.


I have fallen time and time again, but I’ve never hit the ground. My husband, my mother, my brother, my in-laws, my friends–they’ve kept me sane. Michael, my husband of nearly five years, has accepted and celebrated me in every form. He makes me feel beautiful and strong, even when I’m being fed through a tube in my stomach. My mother has slept in too many uncomfortable ER chairs, and still wakes up with a smile on her face ready to fight another day. My brother should receive a therapist’s compensation for all the hours he’s spent working through my issues, from paper cuts to major surgery. My in-laws and (true) friends have never once questioned my motives. They even go out of their way to make sure I have something edible at their dinner tables. They care about me, and they’ve proven it every single day.

If being sick has taught me anything, it has broadened my view of the world. “Not everything is as it seems” is my motto in life. The angry man behind the cash register, the quiet woman who won’t look you in the eye as she walks by, the old couple silently holding hands in the waiting room next to you–they’re all fighting battles you know nothing about. I have learned to treat everyone the same, regardless of how they treat me. Be kind, be patient and be humble. You won’t regret it.

Honor Patient: Katie

Today’s Honor Patient, Katie shared about how equine therapy made a difference in her life.

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I can’t remember a time  where I didn’t love riding horses,but I never knew how beneficial it would be in my battle against chronic illness.

When diagnosed  with severe gastroparesis, digestive tract paralysis & chronic pseudo-obstruction,EDS & POTS some doctors suggested taking it easy from riding but my other doctors encouraged it as a type of physical & occupational therapy. There are many benefits of equine assisted therapy for those with chronic illness, physical & mental disabilities. There have recently been more & more studies done to prove some of these benefits.

I know for me just being by horses puts me at ease; whether just grooming & feeding them or actually riding.

For that amount of time, I forget about being sick. Horses can relax a persons anxiety, calm their fears & boost their confidence. When in the saddle, it may look like all you do it’s just sit up there & the horse does all the work. Actually, the way a horse moves naturally helps with neuro-muscular issues, strengthen your core, (which helps when continuously having GI related abdominal surgeries) & improve balance that continues on into regular daily activities. I benefit greatly from my own equine type therapy I ride while hooked up to TPN or Tube feeds but I just use my own horse. This type of therapy is being recommended more & more by doctors for a variety of mental & physical illness.

#gpawareness #DTPAWARENESS

Honor Patient: Hannah

Continuing on with our Honor Patients, today hear from Hannah Setzer. Read below about how she has incorporated daily movement and exercise safely into her life, and what that means to her.

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My name is Hannah and I am totally feeding tube fed. I was born with a rare medical condition that affects my lymphatic system. There are literally thousands of cysts in my head and neck that block my airway, so I breathe through a tracheostomy tube, and my esophagus. I’ve had well over 50 surgeries in my 28 years, but thankfully no more anytime soon!

Growing up my family (parents and three brothers) never treated me any differently because I had a medical condition. I played sports (terribly!), had friends, was the cutest little Girl Scout you ever saw, and spent my days running around my neighborhood. From preschool to the end of middle school I had a nurse with me all day every day in my school classrooms. I had surgeries frequently too, but beyond that my life felt very normal. My family and friends never treated me as special because of how I looked or how I ate.

My life is awesome and remarkably normal. I went to college, took a job across the country, lived in Brazil for 8 months, got my Masters degree in Social Work, got married, embarked on a crazy quest for intentional movement, and became a foster parent! I have done all these things and lived every day with a feeding tube that has a mind of its own, breathing every breath through a tracheostomy tube, and having not so impeccable speech.

As I mentioned, growing up I played sports, in college I played ultimate Frisbee every single day on the quad, I’ve run several half marathons, and now I’m over 530 days into intentional movement. On January 1, 2018 I decided to move my body for 30 days. There was no schedule, no plan, and no goal in mind besides intentional movement every day. Thirty days came and went and quickly turned into a goal of 100, then 365, and at the time of writing this I’m on day 534 of movement. It looks different every day, I still don’t have too much of a plan. I’ve done several 30 day programs, a few 90 day programs, and am in the middle of a weight lifting plan currently. I’ve had dental surgery and multiple stomach bugs throughout the past year and a half but have always managed to at least walk to the end of the block and back. I do what I am able to do. Not having a schedule or agenda or physique goals allows me to be intentional every day and do what I am capable of doing that day. No two days look the same. I try to be kind to my body and listen as much as I can do what I need daily.

Despite having a feeding tube and tracheostomy tube for 28 years they are far from perfect. Some days my feeding tube is totally fine and doesn’t leak at all, some days it acts like a fountain and is very painful, it’s always a surprise!! For the first twenty four years of my life I was completely dependent on Pedia Sure and Ensure for all my nutritional needs. Five years ago I switched to a blended real food diet and my life totally changed. I am so much more healthy than ever before, get sick so less often, and have more energy to do all my favorite, and not favorite things (talking to you leg day)!

There has not been a day in the past 534 days that I have regretted moving my body. Even when I had no energy from the worst stomach bug of my life I felt better walking to the end of my street and back. I’m not a doctor or scientist so I won’t try to tell you the science behind how good movement is for you, but I can tell you that I am stronger, more disciplined, more joyful, more intentional, and more dedicated in all areas of my life due to creating the habit of intentional movement every day. I know we have lots of friends who are physically unable to move their bodies and I don’t think they are excluded from intentional living. We could all benefit from 30 minutes a day of intentional meditation, prayer, and gratitude. These are things that will radically change our lives if we incorporate them daily. I’d encourage you to try!! I’d love to hear about your experiences over on my Instagram @feedingtube.fitness !
Yesterday, Hannah celebrated a huge milestone of 600 days of movement! Check out her instagram to see just how she celebrated! Congrats Hannah! You rock! -from all of us here at the Pact Blog

Meet the Team: Samantha

To continue with our Meet the Team posts, this week we’re sharing a little about Samantha!

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What is your current role with G-PACT?
I am the Vice President, and newsletter editor

What brought you to G-PACT?
Well, I found G-PACT when I was first diagnosed with gastroparesis back in 2014. I had the opportunity to write a guest blog for awareness month in 2016. I started as a volunteer, and continued to become more and more involved. I’ve had a few different positions within the organization throughout the years, which gave me an inside look at how hard everyone works to keep G-PACT up and running.

-How long have you been with G-PACT?
Since 2016!

-If you were stranded on a desert island and could only take three things, what would they be and why?
Hmm, this is a hard one. I’d say pen and paper, spearmint mints, and my cat, Mayzie.

-Who has inspired you most in your life and why?
This is a hard one too. So many people have made an impact on my life at one point or another, but I would say my mom. Even in the hardest times, she never gave up and never let me either. When times get tough, she always finds a way through. She taught me kindness and empathy, and how to be a good human.

-What’s been your biggest hurdle since your diagnosis?
Honestly, balance. There’s plenty of hurdles along the way, but for me it’s knowing and learning how to know when to push, but also when to slow down. The first few years after I got sick, I lost out on a lot. Now, I do my best not to let any opportunity to slip by. Sometimes I take on too many opportunities, and realize my body can’t handle it all. It’s a learning process.

-What’s one piece of advice you’d share with someone newly diagnosed?
Don’t give up. It’s not going to be easy, and during the bad days, it’ll seem never ending. It may seem like it’ll never get better. Keep holding on, and don’t count yourself out because you’re sick. You’ve got this.