August is Gastroparesis Awareness Month. The following projects will be ongoing leading up to and through the month. We will need the support of the Gastroparesis community all through the month to spread awareness and participate in these campaigns so that we can garner support and bring change that is desperately needed. Please click on the below campaigns to see how you can help!
Gastroparesis Awareness Month is recognized nationally during the month of August and is quickly being recognized at a state level. During this month, we will be hosting different events which will be posted. See what we have going on.
#RealGP is the hashtag we will be using this year for Gastroparesis Awareness Month. See what our members are saying!
We will be hosting a Virtual Advocacy Day. We hope you will participate. See the details.
Legislation is key to making change. To see the bills that we are supporting and any actions needing to be taken, visit our Legislation Page.
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!
Hello, My name is Flora, I’m 55 years old & was diagnosed almost three years ago with GP. I was an LPN & it was never taught in nursing school.
When I was diagnosed, I thought they were wrong & was in denial for over a year. But finally doing some research & joining the FB page for Gastroparesis, I had to face it that this is my life now. I dropped down to 100 lbs, & threw up constantly with bloating, pain, & constipation. No matter what I ate, drank or crushed up, it wouldn’t go away. I believe that I had gotten GP from several abdominal surgeries. After
having a total hysterectomy at the age of 21. I thought that was it, no more problems. But soon afterwards I started getting sick like morning sickness or the flu.
Then in 1994 I had a bi lateral mastectomy with reconstruction. Then I had my gallbladder taken out because it elongated because there was no
female organs to keep it in place. All the while, I just thought I caught the flu more than the average person. After a while my family said something is wrong, you can’t get the flu every 3 weeks.
I finally found a PCP who said I think you have GP. He sent me for the GES test, & I flunked it. I now know how to watch what I eat, I can’t eat over 4 0z. at a time & usually eat every other day. Once I put my full attention to this disease. I found a Gastro Dr. who treats people with GP. She suggested I try Domperidone 10 mg, 3 x a day. Since I have taken it my weight has gone up to 140lbs, I my flares are shorter & I’m not in the ED.
I also had gotten SIBO. that is when food sits too long in the intestinal track & you get an infection. 2 rounds of different anti’s & it was gone. Not forever, because I went 7 months without it & I think I over did it with the false sense of I’m healed & ate things I shouldn’t have had. So back on the anti’s. This is like round robin. I’m not sure how long I can stay on the Domperidone, but I know without it, I wouldn’t be here today. FDA needs to approve this drug in the States. I will fight for this until my last breath!
I’m fighting everyday to keep living. For me, there is no other option. This is my goal & to spread the word that this a digestive disease, not in my head. I don’t need a psychiatrist, I need for the healthcare profession to admit that this is a disease & they need to find a cure! Treating my symptoms will work for now, but how long will it work? We need a cure!
I’m a fighter & will continue to fight this battle. It may not be everyday, but I will not give up! I am a human being, not just a diagnosis. I want to be treated as a human. If your reading this, I will take it that you too have been diagnosed with GP or you are a Dr. who want’s to help me & my family of GP. Thank God I am a positive person or else I don’t know where I would be. I know one thing for sure, If you are told It’s in your head, or there is nothing they can do for you, then FIGHT! We all must be proactive in our own healthcare now. I know it’s like a full time job doing that, but it’s where I am right now. Thank you for taking the time to read my story, God bless, & let’s find a cure ASAP!
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.