The last two months have been the hardest in my life

Adelyn Lyon

It’s August 1st, which means it’s the start of Gastroparesis Awareness Month. I’m now 1 year and 9 months into my journey, and it’s been a harder year than I ever expected (and that is after losing 60lbs my first year). In the last year, I’ve had to go on leave from teaching, had 5 feeding tube exchanges, been hospitalized 23 days total, and had too many blood draws, IVs for hydration, doctor appointments, procedures, and ER visits to count. (Not to mention trying to parent and homeschool during a pandemic through all of this).

The last two months have been the hardest of my life, with a new flare that will not end and is keeping even my feeding tube from working properly. I’ve lost the 15 lbs I had managed to regain in the fall, plus an additional 8, making my loss 23 lbs in less than two months. I will likely keep losing weight while we figure out a solution and am now getting close to being underweight. I have a big procedure this Wednesday which might be my chance at finally feeling better and could use all the positive thoughts that it will be successful. This has to work because there aren’t really any other good options left. My doctor basically told me that my choices might be between using opiates, which would likely cause a dependence and may end up hospitalizing me bc I’m unlikely to tolerate withdrawal safely, or TPN, nutrition through my veins, which has a high risk of blood or heart infections, severe organ damage and sepsis. There should be better options. I’m only 34.

My situation isn’t unique among people with gastroparesis. And without a cure or funding, we will continue to be treated like drug seekers, or accused of having an eating disorder, or told we need to be more positive, or told we just need a therapist bc we’re “too young and sweet” to have a feeding tube, or refused care because we “seem healthy” despite how awful we feel from prolonged starvation (I have been told all of these things by doctors). We deserve respect from the medical community, to be taken seriously, and to have real options and care for a better life.

After over a year of hard work, our House Bill for GP Awareness only has 22 co-sponsers out of 435. Please, please help by supporting our bill. It will give us the awareness and funding we need to live. Please help save lives.

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Diagnosed after 7 years of symptoms

Josh Tewsley

I am asking my legislator to support this bill on behalf of myself and the many other Gastroparesis Warriors across this country who fight Gastroparesis and it’s debilitating symptoms on a daily basis.

Gastroparesis, or paralysis of the stomach is a rare disease that affects only a small percent of the U.S population and not many more than that worldwide.

I was officially diagnosed with Gastroparesis in January of 2019 after enduring symptoms of the disease for more than seven years. Because Gastroparesis is considered a rare illness, knowledge of it is severely limited. Many people, including myself go misdiagnosed for many years before being officially diagnosed with the disease. Many doctors have never even heard the term Gastroparesis, let alone it’s life altering symptoms. This disease does not only go misunderstood in the physician community but also with our families, friends, co-workers, and bosses. Because Gastroparesis is on the inside, often times we may look ok on the outside leading to ridicule and judgement from other’s. We may look ok on the outside, bet are literally starving on the inside. We may look ok to others but we had just been literally throwing our guts out moments before. We may look fine to other’s but we had just gotten out of the hospital because this disease knocked us down.

I am supporting this piece of legislation because of the fact that that person is me. I have had my life stolen right out from under me. I can no longer work because of Gastroparesis. Because of the life altering consequences of Gastroparesis I can no longer be the husband or the father that I strive so hard to be. I support this legislation because there is currently NO cure for Gastroparesis and treatment options are severely limited with many treatments not even helping the symptoms of this disease at all. We are a large group of misunderstood people fighting for our lives. We have cures and treatment for cancer and other illnesses that affect American people throughout and while I am not downplaying those diseases at all, I want to see Gastroparesis research to be better funded so those who come after us can have a legitimate chance of leading a normal life.

Lastly I advocate for this disease because it is the right thing to do. I want people to understand what we go through every day and what risks are associated with Gastroparesis. My message is simple, let’s find a cure, let’s find better treatments for Gastroparesis however we cannot do any of that without support and increased funding.

Thank you very much,
Joshua Tewsley
Louisville Kentucky resident
Gastroparesis Advocate

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They removed my large intestine, gallbladder and appendix

Beverly Mello

I was diagnosed when I was forty years old. They removed my large intestine, gallbladder and appendix. I lost my hearing, my job, my friends and almost my marriage. This isn’t a easy illness on a family. It isn’t like cancer because it isn’t well known so people judge you. The worst part is not seeing my granddaughters because I am too tired and sick and weak all the time. I am 58 years old. I am very tired and at this moment I have pancreatitis acute. I am so sick of suffering.

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Two and and half years after this nightmare began, and I am still home bound!

Jennifer DePuydt-Saari

January 21, 2018: What started off as a severe kidney infection (subsequently a diagnosis of Interstitial Cystitis), quickly became a much more serious issue. I started to lose some weight, was given several different antibiotics (all forms) as the infection was not going away, and then I started to not be able to get down or keep food in me. This went on for quite some time, developed C Diff (which complicated things even further), had a few tests done, found out I had Adrenal Insufficiency, and Hypothyroidism, and by April I had lost more than 30 pounds and was severely malnourished. During this time, I was continuously dismissed at the doctors office or the ER and told either that it was in my head, that I had an eating disorder and that I just needed to eat, or to come back next week and we will see what you weigh. April 12, 2018, I ended up in the hospital and was told that I was very lucky as I would not have made it much longer in the condition that I was in. At this point, I had also developed bowel incontinence. While hospitalized, I had some testing done that showed extreme irritation in my stomach and intestines, as well as SIBO. I was started on NJ feedings. Unfortunately, my body did not tolerate these feeds as it just sat and did not go through my intestines as it should have and caused unbearable pain. A few days later I had a PICC line placed in a large vein in my arm and was then “fed” Total Parenteral Nutrition (TPN) through that line straight to my heart. I was on this 24/7, along with other medications and fluids via my line. After a two week stay, I was then sent to see some specialists in Wausau, Wisconsin, and it then became pretty clear that I had multiple systems all affected and I needed more help than what they could offer.

The specialists in Wausau were quite perplexed by my conditions. I was told that I was a very complex patient. These specialists weren’t very sure as to what to do next, so my provider found a GI specialist at the University of Michigan as it was then recognized that one problem I was dealing with was Gastroparesis. I had also lost my voice and now had a nodule on my thyroid and dealing with issues from that. Two trips down to the U of M in Ann Arbor, Michigan, and three different specialists later, I came back even more confused and frustrated as each one of them said how complicated I was and that they didn’t know where to go with me.

By this point, I was now eight months into this medical journey. When I was released from the hospital in April of 2018, I was sent home with Home Nursing and different therapists coming to my house. I was taught how to set up, administer and handle my own TPN and what exercises to do to help my body physically and to try to get my voice back. A nurse came by one-two times a week to do dressing changes, draw labs and anything else that needed to be done. By this time, I had been home bound for six months and becoming more and more frustrated as the medical professionals could not figure out what was wrong with me; why I was not able to eat and why my different systems were not working correctly. In November of 2018, it was decided that I needed to have a more permanent line for my nutrition (I had now gone through four PICC lines in my arms as they kept getting infected) so I had surgery and had a Groshung Catheter placed in my chest with a line that goes through my vena cava to my heart and I am fed my TPN through there. Because TPN is so hard on the liver and my numbers were not looking too good, I had to go to a schedule of 14 hours on/10 hours off of TPN each day in order to give my liver a rest.

In January of 2019, a local surgeon knew that something was just not right so he ordered some more testing for me. It was then discovered that I had Superior Mesenteric Artery Syndrome (a very rare digestive disorder that occurs when the duodenum is compressed between the aorta and the superior mesenteric artery causing partial or complete blockage of the duodenum). I was then referred to a surgeon at Henry Ford Hospital in Detroit and travelled 9 hours from home to see him on March 5th. It was decided that I needed to have surgery in order to try to fix the compression and allow me to try to eat again.

On March 6th, 2019, I underwent a Duodenojejunostomy (DJJ) with derotation (moved all my intestines around and out from behind the artery), clipping of the Trietz ligament, clipping of adhesions, pulling my stomach up and attaching it to my abdominal wall and my gallbladder removed. It was supposed to be a few hour surgery that ended up taking longer due to the adhesions and the surprise of an affected gallbladder that we were unaware of. This surgery basically re-routed my intestines so that food would have a different route to take to avoid the compression at the duodenum. The surgeon called it “re-plumbing” of my intestines. I spent a week and a half in the hospital, followed by 5 days at a rehab facility near the hospital. Thank God I did, as I immediately started having problems at the facility and after 5 days of vomiting, I was re-admitted to Henry Ford for severe dehydration and pancreatitis. After a few tests, it was confirmed that my stomach had become completely paralyzed and was not even able to pass its own bile through to my intestines. I then had to have a NG tube placed through my nose down into my stomach to drain my stomach continuously. This was a very scary time as I was so depleted of all my electrolytes and there was so much going on with blood sugars and my whole body, that it took the doctors several days to get me stable. In fact, I do not remember a whole lot from those first few days of that stay as I was so incredibly ill. On March 27th, 2019, it was decided that I needed to undergo another procedure to place a G-tube in my stomach in order for me to be able to drain my stomach as it was still not working after giving me medications to try to stimulate it to do so. So, down to Interventional Radiology I went to take a medication induced nap and woke up to the NG tube being gone from my nose (thank God as that is probably the most uncomfortable thing anyone can ever go through and have) and the new owner of a G-tube coming out of my abdomen.

I learned how to use my G-tube for a couple of days in the hospital and then I was transferred to a skilled nursing facility about a half hour away. I stayed there for 2 1/2 weeks, still getting my TPN, using and taking care of my G-tube, drinking fluids, physical therapy, occupational therapy and recreational therapy. I was so incredibly weak and had lost a lot of weight again, that I needed to be at this facility before they would allow me to go home. It was a lot of work each day, but very much worth it. I was called stubborn many times by the nurses and therapists at the facility as I always wanted to try to do things by myself but I just needed to remind them that I was born and raised in the Copper Country of Michigan and we call that SISU.

After being in Detroit for six weeks, I was finally given the green light to head home. I had many months of recovery that I was looking forward to in the hopes that I would eventually get the g-tube removed, come off of TPN, and be able to start slowly eating again. Once again, I had home nursing at my house a few times a week, as well as physically therapy to try to help my muscles as they had atrophied so badly. Unfortunately, I only continued to get worse over the next several months. I had a few more tests done that determined I may have more compression syndromes than just the SMAS. I ended up finding a very well known clinic in Madison, Wisconsin, that deals with some of those compressions. In September of 2019, I travelled six hours to Madison and spent a few days there undergoing different tests and procedures and it was determined that i did indeed have Nutcracker Syndrome (NCS), Loin Pain Hematuria Syndrome (LPHS), and May-Thurners Syndrome. However, by this time, I was also experiencing a lot of neurological issues, as well as had rapidly lost a lot of my vision and was now wearing bi-focal glasses. Due to my extremely complicated status, the surgeon that I saw could not perform the necessary surgeries to help with my compressions. Instead, I would be referred to several other specialists for further evaluations to determine the puzzle that I had become. I then went back to Madison in January of 2020 and saw several specialists and again stumped them all.

So, here we are almost two and and half years after this nightmare began, and I am still home bound with the exception of appointments, and I am recliner bound for about 90% of my day. I am on TPN 14 hours each day for my nutrition, IV fluids as needed to stay hydrated, an arsenal of medications and supplements, and I take in some oral liquids each day. The amount of liquids varies each day depending on how bloated and how much pain I am in. I continue to have bowel incontinence, so I am still wearing Depends everyday. My voice has never returned to normal and is still hoarse after 2 years. My g-tube drains continuously, with the exception of when I take my meds/supplements. To be honest, we have no idea just how much these medications and supplements are being absorbed as I see a lot of them come out into my drainage bag each day. I have very little quality of life as I am isolated to my apartment and I have lost contact with a lot of my friends and family members due to my illnesses. When I do go out for appointments, I wear a mask (currently two due to COVID) since I am immune compromised and I use my trusty 4 wheeled walker as I have leg tremors, balance issues, and overall weakness.

I will be headed back to the University of Wisconsin—Madison, at some point in the next few months to see some of the same specialists, again, as well as some additional ones. I pray that they will be able to help to find more answers and possible treatments. To say that Gastroparesis, as well as the compression syndromes, have robbed me of my life, would be an understatement. Without my faith in the Lord, I truly do not know where I would be today. Awareness and research is a must when it comes to Gastroparesis. We as the patients need to be heard, understood, shown empathy and taken seriously. Far too many are being misdiagnosed, mistreated, under treated, and unfortunately, passing away. This is unacceptable! I pray for medical personnel to be more educated in motility disorders and a cure for Gastroparesis in the near future. Remember…tomorrow is never guaranteed.

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On disability at 28

Stephanie Young

So a little over 2 years ago I was diagnosed with gastroparesis. Before that I kept getting told it was acid reflux or effects from having my gallbladder removed. After I got the diagnosis we tried erythromycin and diet changes. This worked for about a month until I went into a horrible flare and lost 40lbs in 6 weeks. When this happened my hometown gi decided to drop me and referred me to a digestive disorders dr. I had to wait 6 months to see him so during this time I had no help since my original gi refused to see me. I was originally going to get the gastric pacemaker from my new dr and even went through testing but Then he retired unexpectedly so I was sent to another dr in the same Practice. During this time I was throwing up almost everyday and constantly nauseous and with stomach pain. My new dr then tried me on multiple new meds lots of trial and error with no help as I react weird to a lot of meds. I ended up having to leave my job and got on disability which was really hard for me to do at 28. At this moment I feel stuck. I’m on no meds besides zofran and bentyl as needed. My safe foods change constantly and every time I go to the er I get questioned even if I just ask for fluids because I’m young and not diabetic so “I shouldn’t have it”. Which is super frustrating. Hoping one day I will have true healing and not bandaid fixes. I share my story often and try and bring awareness to gastroparesis which has actually helped 3 of my friends on Facebook get a diagnosis quicker. Just hoping for a cure and some relief and not to fear food.

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