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
Hello All, My name is Moshe King, I am 38 yrs old and I live in Hendon – north of London with my wife and 4 kids. I finally got diagnosed with GP after meeting with Gastroparesis 5yrs ago. This is the first time I have shared my story in public as requested, so here it goes – I am no writer but I hope through the pain you might find a smile along the journey too, I didn’t realise how much I wrote until I pasted it across just now – sorry in advance.
Like many sufferers, my history dates back many years is rather complex rhetoric. In a nut shell and as far as we can ascertain my story really starts when I was five and a stomach infection / bacteria left me with Idiopathic Gastroparesis, except it was never diagnosed nor at that the time was it even thought of from main stream medicine.
So you can image the pain, concern and confusion of my parents, Doctors and teachers whom never knew what to make of me or my condition. From this young age I was sick every morning of my life upon waking, I would find it hard to eat my meals, and was always being labelled as a fussy eater. I felt sick after eating and drinking most things and most times after eating I would end up vomiting, whether it was in the car on the way to school after breakfast or after “every food break” during school or after dinner… Forcing myself to eat knowing that I would feel sick or be sick the other side.
With a stiff British upper lip and limited diagnostics available those around me decided, that the show just had to go on, and I had to just “pull myself together”!
The saga continued, being dragged from GP, to specialist and back again, to only be continuously told the familiar story that it was all in my head, so I had to de-stress, stop worrying and take some more pills. I grew to ignore my own cry’s and tried my best to hide my pains and discomfort as most the world grow tired of my broken record, my head hurts, my tummy aches, I feel sick, I don’t feel well. Even now the world around us seems to just stop listening and simply moves on day by day, never to be held back or miss a beat, whilst leaving me sinking in quicksand.
Longer story short – by the time I was in secondary school my being sick was rather discreet, I had it down to a fine art, I found chocolate, cake, crisps, and fish fingers got me through the days.
In Rugby throughout my career managing to play till I was 26, when I stop playing for religious reasons, I was sick at most line-outs, rucks and scrums, getting the affectionate nickname for myself as the “sicking hooker of St Albans.”
By now my relatively random existence was to me rather normal, and I was used to being sick between 3-5 times a day.
Life moves at a vicious pace, and I found myself excepted to University and was on course to go into the Officer Training Core with my heart set on going into the British Army as an Officer in the RLC after training all the way through school within the CCF. During the early mornings of army training, I would rise early to be sick and sneak back to bed ready for the PT offices to come wake us, every now and then I would just vomit during the exercise itself, which would lead me to have to work even harder to prove it wasn’t a lack of fitness. If ever I was challenged I blamed it on a heavy night or paining injury like bruised ribs.
Life then really changed in my 4th and final yr of University, I was competing for Leeds University (their club was joined with Leeds Metropolitan as was their OTC) in the National Student Judo Championship and in my second fight I vomited blood. I was stopped from my fight and immediately shipped straight to hospital. I tried to explain to the Leeds Doctors that this was normal for me, and although I appeared on the outside to be robustly fit, surviving on porridge and Tuna Rice they would not hear anything of it at all, they told me that this was no way for a person to live – I was in shock as the message resonated deep inside that maybe it wasn’t in my head after all.
The next thing I know and a number of months later, I was “under the knife” being diagnosed with excessive reflux; the solution was key hole surgery, trans-abdominal Anti-reflux surgery. Little did we realize that this was a major misdiagnosis and the Surgeon had missed the reverse peristalsis of the esophagus, which might have looked like reflux but was actually my body trying to bring food back out its shortest and easiest route.
So a month before my Army intake to Sandhurst, there I was – stuck in bed, with 5 holes in my abdominals, having to look for a new career path, my dreams shattering in front of me, the rug pulled from beneath me. No rugby, no judo and no army, for now I was devastated and the worst thing of all is that, I wasn’t even cured.
Masked for another ten years, still dragging myself to specialists on a wursts to find what seemed like the holly grail, but all I wanted was to know what was wrong with me. I went to Israel for a few years where I was looked with no joy, and then back here in the UK, Where I was still told it was in my mind or possible the catch all favourite of IBS. Due to the operation everything seemed more intense, more painful, more difficult to be sick, sharper cramps which just got worse and worse. The pain was debilitating yet I still ignored my bodies cries and suffering, I just “carried on” went to work the best I could, not eating was by default position to make it through my day. Just a late night meal and a painful morning sickness seem to be my daily routine to just get by.
It wasn’t till I got married that my wife again pushed me not to settle for this “way of life – if it could be defined as that” with irregular bowel movements catching me unawares and cramps so intense I could get out of bed for hours / days. I just felt that after 30 years to go back to the Doctors again it would be futile.
Most Unlike me I actually listened to my wife and went back to the Doctors regardless. By pure luck I was guided to a different specialist, superior to the one I was supposed to see, just days after my second Son was born, (named after the Angel of healing Rafael to try and help my search for healing).
Within about 5 minutes of explaining the above pathology, with the aid of new found medical knowledge and technological advancement Prof Epstein was the first Doctor, not just to listen to my whole story without judging me, all the way from the beginning but he truly understood my symptoms and believed he could demonstrate what I actually had, it was as if he had truly seen other people with my condition!
Within a month I had a full diagnosis, and it was no longer in my mind alone, a crazy fantasy, although there are most likely pains and scares in my mind now too for sure. It was liberating to know I was “normal” of sorts and that although my stomach didn’t really want to work with one mild judder ever 5 minutes, now at least I was aware of it, and I could start to try an “help” be kind to myself. For example I could Stop punishing myself, for not being able to achieve everything I felt I was obligated to by the people around me, to stop eating more than I could to prevent causing myself crippling pain, to allow myself to crawl into bed for an afternoon in my day off to recover and gain my strength to fight the pain the next meal.
I slowly started to self manage my life, and started learning about my body, every aspect. Intermittently, liquidising and avoiding foods that I now understood why they hurt so much such as raw vegetables & Red meat.
It’s Still not easy and there are ups and downs like everything – one of the hardest things I find is looking healthy but internally feeling so rubbish, and knowing that’s it’s OK not to be OK but still feeling guilty for not being OK and having a lack of energy to be there for my Family and Friends. I have really investigated my diet, using a mix of GP friendly foods & IF (intermittent fasting) to make it through my days.
Other positives is that after 13yrs I bravely went back to Judo as I needed my energy back and to feel I was taking back control of my life. With the clubs help I am now grading 4yrs later for my Black Belt hopefully in March 24th 2019. I coach and train twice a week, come rain or shine, I even compete as a veteran, regardless of my fatigue levels or nausea (Judo days I can only drink to avoid being sick unnecessarily although sometimes it’s simply unavoidable).
Only now have I felt strong enough to try and help those around me that may also be struggling with GP or even talk about it openly rather than just hide it, as the awareness might help others struggling to be diagnosed. I have managed to get to a place or relative stability (medicine free – for the first time in 33 years) although it’s phenomenal tough and challenging, a relentless rollercoaster, a warrior is warrior not just when he wins a battle but when he stands to fight in every battle.