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.
Hi, my name is Christy, I am 43 years old and was diagnosed with GP 2 years ago. I am a mother of four beautiful girls. I also suffer from Fibromyalgia, Diastolic Dysfunction and Chronic IBS.
Because of my illness I battle depression on a daily basis. I have recently gone on long term disability through my employer because it has gotten too difficult to perform normal daily tasks. I never seem to have enough energy to even do simple things like go to the store. I’m constantly nauseated and if I get out into the summertime heat it worsens.
August is Gastroparesis Awareness Month. To help spread the word, I’m going to tell you my story. When I was 19 (1999) I started having stomach issues. I had an endoscopy/colonoscopy done. I was told I have IBS. Over the years, I have learned to deal with that. It caused a few problems but was otherwise manageable.
On Mothers Day in 2012 I had severe pain in my abdomen. When I finally got to the doctor, she said it was an ulcer. No exam. No tests. So I dealt with it. I managed. A year later, after seeing a new doctor, I was able to get another endoscopy/colonoscopy done. I had not one but seven ulcers all at the top of my stomach. I watched what I ate and managed. The doctor put me on prescription antacids to help. I continued to have severe pains when I ate and for hours afterwards. The doctors never did much.
Finally the pain got so bad that in 2018 the doctor sent me to a GI specialist to get me some help and yet another endoscopy/colonoscopy followed by a gastric emptying study (GES) and blood work. This time I got several diagnosis. IBS, ulcers, an elongated colon, GERD, and Gastroparesis. I had never heard of that one, so I did some research. Or tried to. There really isn’t much information out there. They gave me some papers with a diet. Over half the foods cause me severe pain. No vegetables unless it’s baby food. No fried foods. Mostly poultry, potatoes, rice, and pasta. Even then, sometimes I’ll be in bed for days with stomach cramps, vomiting, constipation, diarrhea, headaches from losing liquids, and generally feeling like I’ve been beat to a pulp.
I look fine. People think I AM fine. Nobody wants to hear about it. Nobody helps. Nobody cares. 4% of the population has this illness. Only 4%. So many people have died from it. There is no cure. There isn’t much research. Doctors don’t know what it is and don’t want to learn how to treat you. You’re considered a hypochondriac. In reality you’re exhausted, alone, depressed, and hungry. The fear of eating is so real. It’s not an eating disorder.
Gastroparesis means your stomach is paralyzed. It CAN’T digest food. You may have good days where you can eat normal foods, but they don’t last long. Sometimes you can eat a certain food but other times that same food will cause excruciating pain. You never know how you will feel. The only medications that are FDA approved have too many side effects or quit working within a few months. Insurance doesn’t pay for treatment. And even though you spend most of your time in bed hurting and unable to eat, disability is almost impossible to get.
Another common misconception is that if you’re not losing weight then you’re not sick. This is such a lie. You’re body can go into starvation mode and instead of using the nutrients that you do get, it stores them. So you actually gain weight instead of losing. Those of us with GP have had to form groups on Facebook and websites to do our own research and support each other because nobody else will. I’ve been diagnosed with GP for a year. Even family and friends don’t support me. I’m expected to live my life like everybody else when in reality I’m in pain and probably throwing up when they’re not looking. I may complain to those closest to me (my kids and my husband) but I don’t tell them everything. I work. I clean house. I cook when I can. I pay bills. I try to do things with them when I can. But inside I’m hurting, screaming, crying, and praying that some doctor somewhere will find a way to help me live through this.
So for all of us who have this, please help raise awareness. Please spread the word. Someone you love may have this and be afraid to tell you for fear you won’t understand. That friend or family member that you never see may be trying to explain this and don’t know how. Or they may be misdiagnosed and not know what’s really wrong. Be there for them. Be there for us! Love us even though we can’t do what you do. Love us even though we aren’t who we want to be…. a healthy person. Gastroparesis is real! Help us spread the word!
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.
I’m Beth, I live in Shelby NC 28150. I’m 58; been on disability due to fibromyalgia since 2007(I’m an RN). Since 2008, have had episodes lasting months/years of nausea, vomiting, pain, bloating; during one of those I lost 80lbs.
I was diagnosed with gastroparesis in January of 2018. Due to flares this year, my quality of life has been severely affected. At times, sips of Sprite and IV fluids is my total intake. It’s exhausting and depressing. I get scared, because doctors and specialists admit, they don’t know much and cannot do much to help.
This is my GP Flare Face; I was in the hospital. Much better right now. I’m thankful for every hour of non-flare!
Also below, my baby Matilda, 2 years old. She keeps me going. I have little family support, but I have her!
Matilda
I also have fibromyalgia, diabetes, high blood pressure, migraines, IBS, and angina. I’m a disabled nurse.
