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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Nursing school is hard enough as a healthy person

Brittany Kendall

I am 22 years old. I started nursing school in June of 2018. Nursing school is hard enough as a healthy person.

I got a kidney infection in the end of November of 2018 for which I was hospitalized for. That began a severe struggle with my health. I stopped being able to hold down any food (even water). After multiple hospitalizations, one of them lasting a month.

I was officially diagnosed with severe gastroparesis in April of 2019 after I had lost 60 pounds and my gall bladder removed. They couldn’t control my nausea and vomiting with any diet or medication, so I ended up with a surgically placed J tube. I have since been hospitalized 3 more times, not including the ER visits from passing out at clinicals in which I was not admitted.

I currently have not kept down anything I have ingested for about a year now, despite the gastric pacemaker I had placed in June. Despite the 4 surgeries I have had this year, the accumulated 2 months of the last year I have spent in a hospital bed because of this disease along with kidney stones and an ovarian cyst that burst, and the malnourishment that keeps me exhausted most of every day, I graduate nursing school in 38 days with a 3.9 GPA.

I also accepted a position on my dream unit (an ICU) for after I graduate. I am still learning to live with my feeding tube and still struggle to remain positive. I have my days where I cry and want nothing more than to be able to enjoy a glass of ice cold water and gain some weight. I still have hope that, one day, I will be able to get rid of my feeding tube and keep down something. I am so excited that I am going to graduate with my BSN despite my bad luck with my health. This has been easily the hardest thing I have ever done in my life. Thank you for letting me share.

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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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Life is hard enough

I suffer from gastrointestinal problems and have recently been diagnosed with gastroparesis but after only trying medications that did not work the idea was changed. Based on what sounded like very little knowledge. I am home and struggling because there isn’t enough research out there to help diagnose these things let alone treat and maybe cure. I have suffered since I was a child with the same problems, now age makes it difficult to handle. I have a daughter who just turned 12 years old. I have a life to return to. I’d rather be worrying about my daughter than fighting and getting frustrated and depressed because I am afraid I may pass before she turns 18. I cannot afford a life change life is hard enough without the uncertainty of life.. please raise more awareness, look more into it. Spread all these stories. I’m broken from having to watch my daughter shed tears every time I return from the hospital as if she’s expecting me not to return one day. She’s scared and she’s young. Please.

Submitted by:  Zujeily Sanchez

 

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