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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I am IV dependent on TPN for daily nutrition

David Lawson

I was first diagnosed with gastroparesis in 2016, but had be subjected to over twenty-five surgeries pre-diagnosis. Since my diagnosis I have lost my ability to be tube fed and I am IV dependent on TPN for daily nutrition. As of today we have no real cures and barely any symptom control. Please, support H. R. 3396 to help those of us with gastroparesis live a full life. I am a fulltime nursing student and hope to use the remainder of my life on Earth to assist others who are struggling with this life altering disease. Thank you for your time and God Bless you and your efforts to help us find the cure that could potentially save thousands of lives.

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Gastroparesis, a debilitating and destructive chronic condition

Natasha Jones

I suffer with Gastroparesis. A debilitating and destructive chronic condition that has ripped me apart. I have lost my sense of self, my ability to have a job, my brain function is slower, my body is in pain every minute of every day, I can’t be spontaneous, I take bouts of medications all day every day, I feed through a tube in my nose into my bowel, I will soon have surgery.

The treatment options are abysmal. The motility medications rarely work and often make us worse. The only pain medication available is both addictive and slows down motility but we have no other option. The anti-sickness medications rarely work unless administered through IV but a lot of us do not have access to that.

I’m only 25 and therefore my specialist refuses TPN. TPN itself causes a huge amount of issues. There’s no one looking for a cause, and there’s no cure. We are tubed, stuffed with medication and left to rot at home. We see specialists twice a year due to overwhelming lack of funding. There’s no mental health support and none of the therapy treatments apply to our condition. We are shoved aside, blamed for our condition, accused of lying, accused of drug seeking, accused of starving ourselves. All this is soul crushing. We get treated so poorly, despite the fact that we have an organ that doesn’t work properly.

Imagine if it was your heart, kidney, lungs, you’re treated properly. You’re treated with respect. But when it’s your stomach? You’re left to deal with it yourself, like being thrown to the gutter. It’s absolutely appalling. We are dying, slowly, we are getting more sick, slowly, we are in pain, all the time, we deserve better! Across the whole world we deserve better. We deserve recognition, better treatments, less ridicule and we deserve respect. Could you imagine living everyday with food poisoning, every day, for the rest of your life? Just imagine it. Imagine how that would feel. Would you be able to work? Would you expect to be treated better, properly? This is our lives. All day, everyday! We deserve better.

Gastroparesis has taken so much from me but I will refuse to let it take all of me. I am a warrior and a fighter. I fight everyday, we fight everyday. More than a lot of people could comprehend. I try and raise awareness because we are treated like an afterthought! It’s only our Gastroparesis groups and warriors that are fighting for awareness! We are the ones powering through for better treatment, better mental health support, better understanding, less ridicule all whilst suffering tremendously. This condition can be all consuming, soul crushing, mind altering, painful in every aspect and so unbelievably destructive. But through it we find strength we never thought we could ever have, we gain a family across the world that are there for you and understand you 24/7, we find new comforts and hobbies that we would never have considered before, we establish who is truly there for you, we push boundaries that we never thought were possible and we find a new respect for just how much the body can persevere. We are warriors. I am a Gastroparesis Warrior.

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Sensitive Stomach

Manny Zuckerman (Before getting so sick)
Manny Zuckerman (Now)

I have suffered from what my mom would call a “sensitive stomach” since I was born. Certain foods through childhood would just throw my body into a funk and I would feel absolutely so sick. I had horrible abdominal pain.

In 2015 I had my gallbladder removed and it seemed ever since then everything went down hill. First it was acid reflux, and IBS, and Dumping Syndrome. Which in time wreaked havoc on me and until 2017 I was able to manage a pretty normal life style, and then BAM….. It’s like my entire body was shutting down. I couldn’t eat anything, everything hurt, I couldn’t drink, I lost close to 110 lbs in a little under 8 months and became half the person I once knew.

First it was emergency hydration and electrolytes in the ER, which then became admissions, due to needing so much nutritional support, to the point they decided to put in a J-Tube. The first one 5/2018 put me in the hospital for 32 days , caused unbearable pain, a staph infection ended the tubes life before I ever even began to be able to use it. Subsequently the laparotomy caused adhesions, and a bowel obstruction leading to a second surgery in 10/2018 to repair bowel and lysis adhesions, and an attempt of a 2nd tube on the opposite side of my abdomen. Tube number two felt like a god send, I though it was finally gonna work. And it did . For 2 month until I developed a Pseudomonas infection which caused a massive obstruction leaving me in Mayo Clinic for 9 days on NG suction. At this point it was determined I needed TPN nutrition. I had been inpatient admitted 30 times at this point spent nearly 100 days in the hospital and my life felt completely over. TPN kept me sustained and hospital free for 5 months until May 2019 , when I was admitted for emergency ventral hernia surgery and for the next two following months I was in agony in and out of the hospital and unable to tolerate any activity.

Finally 7/2019 I went in for severe abdominal pain and was unable to take it any longer. My surgeon determined I had adhesions causing pain and needed to have surgery once again and she would resection my scarred bowel and lysis my adhesions. Post surgery I woke up to be told I had a condition called Intussusception which the bowel telescopes inside itself. It’s only found in 5% of humans and mostly infants. This was a massive breaking discovery to my diagnosis as we felt we have found the source of why I have been so ill for so long, My biggest challenge now will be the life long irreversible damage all of these abdominal surgeries have caused,

I am still TPN dependent and can eat some by mouth but Gastroparesis is still my # 1 challenge everyday and It’s just something I will learn to live with and adapt to whatever changes are needed to sustain a happy healthy life.

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The Long Gory Story: My Health Journey

 This is very long and may contain information/pictures that may make some people uncomfortable

Shanna Harjo

My name is Shanna. I am thirtysomething and I live in Staten Island, NY. Imagine you were told you had an incurable and almost untreatable disease that nobody has ever heard of and can be fatal. It’s not where I thought I would be at this age. I have always had health issues from day one. Nothing MAJOR but issues nonetheless. There is an underlying issue but no doctor seems to know what or seems too interested in finding out what it is. We know some pieces to the puzzle but not everything and it will probably take an autopsy to figure out what the heck is wrong with this broken body as not too many doctors are willing to take on complex patients.

Growing up nothing seemed connected and eventually I was told it was “just anxiety” or in my head and written off. I went to so many doctors asking for help. I was in a cardiologists office at 14 for tachycardia, a GIs office by 16 for stomach pain, nausea and bloating, I was constantly getting upper respiratory infections and pneumonia, my joints (specifically my hands and knees) always hurt and made weird noises, I was always spraining something or in some type of discomfort. The doctors all looked at me and shrugged and told me it was in my head. I trusted the doctors and just figured my “anxiety” was getting the best of me and I pushed on. I didn’t have much of a choice. I began having self-esteem issues at a young age. I always felt not good enough. I wasn’t smart enough, tall enough, pretty enough, etc. Those thoughts grew and evolved. I felt so out of control. Combine those feelings with being told I’m already “crazy” for years and cue anorexia to the mix. It started off as thoughts and little behaviors. I was able to hide it for a long time. I was never heavy. If anything I was always thin and borderline underweight and had trouble gaining weight. It didn’t become physically noticeable until my early 20’s and others began to show concern and ask questions. I admitted I had a problem and in 2007 I went to treatment. There I gained the tools I needed to recover. Recovery is not an overnight process nor is it linear. It took me almost 7 years to fully recover. There were moments of progress and moments of relapse, all which are part of the recovery process. 2014 was the year I took my life back from unhealthy thinking and could be classified as “recovered” but unfortunately not soon after my health got worse and worse. My mind was finally healing and my body was doing the opposite. I was on a bunch of new medications for migraines, I had begun to (try) and eat a balanced healthy diet, and I quit smoking cigarettes. I’m not sure exactly what triggered my already broken body to go into kill mode but I have a feeling it was a combination of the medication I was taking and years of not taking care of myself. Kind of like my body saying “now you want to be healthy and want me to work? Go f@!% yourself!”

I’ve struggled with migraines for years but in 2015 I started getting them more often and more intensely with some pretty scary symptoms. I was diagnosed with chronic migraine disease and multiple types of migraines. I was put on a combination of medications that included a steroid and hello weight gain! It was welcomed and it was amazing! I looked fantastic and I felt confident. The meds didn’t work and I was taken off of them. I started to lose the weight I put on and my stomach issues (pain, nausea, vomiting, fullness, etc) got worse. I blamed the migraines until it became apparent it was more than the migraines.

I was hoping the GI hell was temporary but in December of 2015 I began to just get worse. I was in and out of the hospital for dehydration and electrolyte abnormalities and after ringing in the New Year in critical care I made an appointment with a GI. My electrolytes were so thrown off from dehydration (constant vomiting of anything including water) and malnutrition that my body was shutting down. My potassium level was so low it started to affect my heart. Having AED pads slapped on my chest was a bit of a wakeup. I waited what seemed like forever for an appt with a GI. Over the course of almost a year it was him sending me for a bunch of tests and then basically shrugging me off and saying he wasn’t sure what was wrong with me. I asked him if it could be gastroparesis and would he be able to order a gastric emptying test since I’ve had every other test done. He told me I’m not diabetic so there is absolutely no way I could have gastroparesis and wrote me a script for a test of my gallbladder. In those few months my weight kept dropping and I was in and out of the ER more and more but nobody was doing anything! I remember asking one doctor for advice and help since I was getting desperate and I was told that they would see what they could do and then decided to throw in their opinion stating that I had done this to myself. I did not hear from that doctor again. By May of 2016 my health was deteriorating fast and I was looking for a new GI. If I didn’t find a second opinion I wouldn’t be here. I heard things no patient should ever have to hear. Little did I know this was only the beginning of a long repetitive and set of phrases that I am STILL hearing from medical professionals to this very day; “It can’t be as bad as you say”, “This test is normal, maybe seek therapy”, “I don’t know what to tell you, maybe try a larger hospital.”, “You’re too complex, we can’t help you”, “You have exhausted all treatment options.”, “We can just make you comfortable and treat the symptoms.”

I also began seeing a rheumatologist where I was diagnosed with undifferentiated connective tissue disease and started medication. She said there is something autoimmune going on in my body but no tests showed anything concrete. At my first appointment with my new GI he listened to my symptoms and said he believed it was gastroparesis and sent me for a gastric emptying scan. I had trouble with the first attempt of the GES so it wasn’t until July that I was able to successfully get an appointment and complete the test and was diagnosed with moderate/severe gastroparesis. That GI and my primary care doctor both recommended a nutritionist and a motility specialist. My BMI had hit 15 at this point. It hurt to walk, it hurt to breathe, it hurt to exist but I pushed on. I started working with the nutritionist while I waited for an appointment with a motility specialist.

I saw the motility “specialist” in September and it did not go well at all. He was not the doctor for me and he was quite far away. For a motility “specialist” he was an arrogant and demeaning person. He shrugged off my test results and wanted me to start from square one. I didn’t have time to start over. I was dying and he was telling me I just needed willpower to drink blenderized food. By October things were getting worse and started to get serious and scary. Scary as in my husband would check on me in the middle of the night scary. I had a small intervention type conversation at work because they thought I was going to literally just fall over. A PICC line was placed and TPN (total parenteral nutrition) was started while I waited for an opening with a surgeon for a feeding tube placement. TPN is IV nutrition that infuses through a central line. It bypasses the entire digestive tract. After a j tube was placed (it bypasses the stomach and pumps nutrients into the small intestine) I was slowly weaned off of TPN but the PICC was left in for fluids and medication.

Things were going well for over a year and the tube needed to be changed. It was never the same after and caused a lot of pain and leakage. There was a four to five-month period between tube changes that almost killed me twice. I aspirated during one of the tube changes. I was sent home and only hours later I was rushed to the hospital with the beginning stages of sepsis and pneumonia in both lungs. My weight also got very low again since the tube was unusable. When they went to replace that tube, I aspirated again during the procedure and woke up to my husband telling me I was admitted and to just stay calm. Thankfully that tube worked well enough where I was out of the danger zone.

I started seeing a motility specialist in Manhattan in January of 2018 and had more testing done such as the smart pill which confirmed severe gastroparesis and a severe delay in my large intestine. In May of 2018 my other condition began to “flare” and the rheumatologist put me back on prednisone and repeated lab work. By July I was starting Sulfasalazine and diagnosed with Rheumatoid Arthritis. Between the immunosuppressants and the fact that my tube had been in 2 years and was not the proper tube for my body or lifestyle, the pain and leakage got worse and I wasn’t able to use the tube or take in adequate oral nutrition. I eventually developed cellulitis and in the beginning of December 2018 the tube was removed, I stopped the Sulfasalazine, began Methotrexate, and restarted TPN.

The GI surgeon who had placed my feeding tube and was the only person on Staten Island qualified to place a J Tube told me he would not be placing another tube. He told me the GPOEM procedure will “cure me” and the only thing he would offer is to trial the Botox while he was taking the broken tube out. While I was already out for the procedure the doctor injected Botox into my pyloric sphincter to relax it. It is supposed to be a type of trial to permanent procedure called the GPOEM procedure where the pyloric sphincter is cut open permanently to help food pass from the stomach to intestine easier. After a month I still felt no relief from the Botox and my motility specialist suggested we try it again and this time dilate the pyloric sphincter with a balloon and Botox to really stretch it. Again, no help, if anything some symptoms were worse. At my follow up he said the GPOEM may not be an option and he wanted another J Tube placed in hopes that I can come off the TPN and keep my small intestines from slowing down anymore. While my new surgeon was placing my new J tube, he noted an ulcer in the pre pyloric region. This means that when the balloon dilated to open it caused acid and bile to reflux back up into my stomach causing ulcers which could lead to GI bleeds. This means the GPOEM procedure would probably do the same or worse.

The combination of TPN and methotrexate was starting to affect my liver and my doctor, and I decided to stop the Methotrexate. I cannot move forward with any treatment for rheumatoid arthritis while I have the PICC line as the risk of sepsis is too high. I’m gambling with my life every day that this PICC line is in but removing it would be just as much a risk. As of today, I am still on TPN 3 days a week and totally reliant on the feeding tube. I can eat approximately one or two small meals every few days and even that comes with consequences. My husband and I lives consist of endless and often hopeless doctor appointments, surgeries, procedures, and hospital stays. We try to take everything one day at a time and we try to stay as positive as possible. We have laughed through some situations that would leave some traumatized. He is really sticking to those vows and I couldn’t be more thankful for him. He is my everything and my best friend. We try to live as “normally” as possible despite the abnormal situation.

Unfortunately, throughout all of this mess I had to reduce my hours at work and am currently just working part time. I was told my options for treatment beyond what we are already doing is few and far between. I am trying to come off the TPN as it is usually used as a last resort measure. I am fighting multiple battles every day; I battle my body and multiple chronic and incurable illnesses , I battle doctors and insurance companies, I battle a society that has not heard of the disease that is killing me and affecting millions of others, I battle politicians and big pharmaceutical companies who have the power to help us but aren’t, and I battle people who are ignorant and abandon when shit hits the fan. I have begged my husband on multiple occasions to just leave now, go find someone healthy that can do the things in life people our age should be doing like starting families. There have been times where I felt like giving up because the lack of help. I even went as far to draw up legal documents. When I first started to get sick I lost a lot of people I thought I was close to. I figured if these people reacted this way, what are internet friends and long-distance family going to think? I deleted Facebook and kept most of this to myself until now.

It’s time for me to speak up. It’s time I joined the fight to spread awareness and advocacy for this disease and other chronic illnesses. Although I have lost a lot of people I have gained some truly amazing friends and family who support me and fight beside me. It’s unfortunate that it is a disease that bonds us but I’m not the one to judge the reasoning behind life. My story is long, but it is not over yet. I need to be heard for myself, for the people fighting, and for the people who have lost their battles. I will be heard. We will be heard. We need a cure <3

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