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.
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.
This is very long and may contain information/pictures that may make some people uncomfortable
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
I am stepping out of my comfort zone, and going to share my personal story publicly. If I can help even one person by showing my vulnerable side, it is worth it. It’s a bit long but I want you all to know how this journey has affected me.
Gastroparesis has radically changed my life.
On the left is a picture of me when I first got sick, topping out at 297 pounds. I had no idea why I was gaining weight, as I was struggling to even eat. I had not yet been diagnosed with Gastroparesis, but was vomiting every day as soon as my feet hit the floor in the morning. This went on for about a year before suddenly I started losing at a rapid rate.
It wasn’t long before I would be struck down with Diverticulitis, something my doctor later said was a direct result of Gastroparesis, but I still hadn’t been diagnosed at this time. This caused my colon to perforate, and emergency surgery to clean my abdomen out and remove my sigmoid colon. When I woke from surgery, my abdomen had been left open fearing they missed some of the infection and I had an ileostomy bag.
Things got really scary fast! I was unable to tolerate anything at all by mouth, not even a sip of water. I was in grave danger and nothing was helping me. The doctors decided they had to place a NG tube to drain my stomach, which is a tube that goes through the nose, down the throat and into the stomach. I had formed an ileus. They were draining bile out continuously for the next 5 weeks. I had to be fed by TPN (intravenously).
I couldn’t look at my abdomen, and definitely could not look at my ileostomy. I was fighting as hard as I could just to survive or have the will to. I reached my breaking point and just couldn’t do another day of any of it. I wanted out! No more tube, no more feeds. I was done! That night I begged God for mercy. Please come and get me or help me. I just couldn’t do it any more. My small bowel would not wake up. The next morning I would be telling my doctor I was discontinuing treatment. But when he arrived, he heard movement in my bowel! It had finally woken up! My tube came out that day, but only because I didn’t need it any more. I got my first liquids in 5 weeks! I kept the TPN for a few days longer as my body readjusted to eating again, but finally I was ready to move to a nursing home for some intense physical therapy.
It was then that I had to get close and personal with my ileostomy, as the nurses there were not trained on changing them and one of my aides thought it was a great idea to rinse my bag out with water, making me instantly sick! I was determined to figure this out on my own and then I taught my nurses how to care for an ileostomy patient.
Physical therapy proved to be quite challenging because I was so fatigued, and weak. I could not make it past about 3 rooms from mine, before I had to quit walking, and had to be brought back to my room in a wheelchair. It was several days later that they discovered my potassium levels were extremely low, causing the fatigue, weakness and rapid heart rates. Finally I began the road to recovery from this nightmare! I was there for 3 weeks and I finally got to go for a home visit. Boy was it nice to see home again, something I wasn’t sure I would ever see again.
I thought wow, what a crazy turn of events, but thank God that’s behind me. Oh but no it wasn’t! I was home for 3 weeks, and my husband came home to find me non-responsive. By the time I got to the hospital, my potassium was at 1.2. 2.5 is the lowest of the safe zone. I was heading back to surgery, they were going to reverse my ileostomy. This period of time is a bit of a blur! After several IVs of potassium, I was finally starting to bounce back.
When I returned home, again I was on home health care, and the days my nurse wasn’t here, I had telehealth, where I had to weigh in and do my vitals every day. Every day I was watching the scale go down.Thankfully I had an amazing home health nurse who recognized the symptoms and knew what was wrong with me. A gastric emptying study confirmed that it was in fact Gastroparesis. Thank you Anna, my earth angel! I often wonder where I’d be if you hadn’t come into my life.
Now I had a diagnosis, now what? I quickly learned that my local doctors were not able to help me after going to several. I finally was referred to Jefferson University Hospital, to their motility clinic. Through more testing, we discovered that not only was my stomach paralyzed, but so was my colon. I would then start the rollercoaster ride of let’s try this, let’s try that. I was given every medication and non-surgical treatment available, to no avail.
I continued to lose weight, was unable to tolerate solid foods and was on liquids and soft foods only for almost 5 months, when I finally started seeing their motility specialist, head of the department. He scheduled me right away for another round of botox, which we had already tried, but this time it would be Botox type B, as type A did not work at all. They inject the botox into the Pyloric Sphincter through an endoscopic procedure to help it relax and allow your stomach to empty. It took about a week and a half, but I was able to start eating small amounts of food! I was so hopeful that this was the answer for me!
As time went on, with each meal brought more pain. I was unable to move my bowels for 3 weeks at a time. That was with the best medications on the market available in the U.S. at the time. In January 2018, they said my intrathecal pain pump had to come out to rule it out as a the culprit. That made no difference at all, so in March 2018, they removed my colon (Colectomy). Once again, my small bowel would not wake up, my botox had worn off and again, I would get a tube down my throat and TPN. This time though, I had the Gastroparesis diagnosis, so I was put back under and got a botox injection. It took 12 days for my bowel to wake up, but I made it home again!
In November 2018, botox stopped working. I was sent for a consult for G-POEM, which is an endoscopic surgery where they cut the Pyloric Sphincter leaving the stomach open so it can empty. It was then they discovered that now my small bowel and my esophagus have slow motility issues. I need revision surgery on my small bowel, where they connected it back up through ileorectal anastomosis through a side connection. The revision surgery will require losing about a foot of my small bowel and getting an end connection, which I’m being told will be a tougher surgery than getting my colon removed. The doctor who would do this procedure thinks the bowel needs to be addressed first, but the motility doctor wants to forge ahead with the G-POEM to see if the stomach is emptying if my bowel will follow through. If not, then I will go in for revision or a permanent ileostomy.
While all of this is going on, I am barely able to tolerate any solid food and pretty much live on Greek yogurt, peanut butter, bananas and liquids. I try to force myself to eat something solid every day and deal with the consequences. I am now down 134 pounds and the picture on the right shows me now, from a size 24 pants and 3X shirt to a size 10 pants and a large shirt.
I watch as my Facebook community passes green candles over and over again. We have averaged a death a week in our community from complications of this disease. It’s so scary when you have zero control over your body. When what works today stops working tomorrow. Knowing one infection is all it could take, and you’ll never recover.
I thank God for having a supportive husband and family, because so many of our community do not. I appreciate those who share about this illness, so that one day we may get a cure. We need the support of family and friends, this disease is isolating. We fear leaving the house because of no access to public bathrooms. We can’t even smell food sometimes, because the smell alone makes us so nauseous and even vomit.
Some of us are tube fed, have stomach pacemakers, colostomy or ileostomy bags and take medications with horrible side effects because we have no other options. We are going to Washington DC to ask our legislators to help us. What a site that will be to have hundreds of chronically ill patients in a sea of green shirts rallying at our capitol. We will be meeting with our legislators asking them to pass a bill which will give us much needed funding for research.
So when you see me share about Gastroparesis, hopefully now you will understand I am fighting for my life and those lives of fellow warriors. So that one day there will be a cure and our children and grandchildren might not have to suffer from this. Please help support our efforts by sharing our posts. This can strike anyone of any age at any time. By spreading awareness, you may just save someone’s life! 💚💚💚
Thank you for taking the time to learn about my life with Gastroparesis!
💚 Hi I’m Sarah and I’m 35. I live in the UK. I became ill in 2013 and was diagnosed with Gastroparesis in 2015. I have a PEGJ which is used for medication and draining only, as unfortunately I failed on the enteral feed and I am fed by tpn via my broviac line. Unfortunately I’ve been told I’m not a candidate for a pace maker, due to the Gastroparesis effecting my bowel also. As well as GP I also have a number of other chronic illnesses which also makes it hard to deal with. It has and is an emotional battle and I have my ups and downs. In and out of hospital with long admissions. But it has made me stronger and I won’t give up and let this or should I say these illnesses win! # Gastroparesis Warrior 💚💚💚