Thursday, March 21, 2013
Gastroparesis the Inside story with LaShelle and Melony's story
Gastroparesis is not all that rare, But odds are you have never heard of it. That is because most people are misdiagnosed sometimes even told it is just in their heads. Living life with gastroparesis is very hard, there is no cure and not very good treatments. We need awareness so that more research can be done and we can filly have our lives back. affects everyone differently making treatment much harder. The main symptoms of gastroparesis are weight loss, weight gain, malnutrition, extreme nausea and vomiting, bloating (to the point we will look nine month pregnant), heart burn, extreme pain, poor blood sugar control, feeling very full after only taking a few bites, GERD, poor appetite and when we are hungry we are still physically unable to eat, and many more. It feels like we have a bad case of the flu and food poisoning everyday all day. If more research could be done we could find a way to cure this life altering disease that is affecting 5 million people. Gastroparesis translates to stomach paralysis. Our stomachs can not empty food in a normal fashion due to damage of the vagus nerve. The vagus nerve is the nerve that regulates the digestive system. When the vagus nerve is damaged it prevents the muscles in the stomach and intestine from functioning, which in turn prevents food from traveling threw the digestive system properly. Most times the cause of gastroparesis is unknown, I am one of those people. They call it idiopathic, idiopathic is when the cause or source is unknown. However there are also known causes some of them are uncontrolled diabetes, surgery where the vagus nerve got damaged, Medications like narcotics and some anti depressants, parkinson's disease, multiple sclerosis, and other diseases, stomach viruses can also cause it. While highly uncomfortable for us it is also highly dangerous, when food stays in the stomach too long it can actually ferment, which leads to the growth of bacteria. Food in the stomach can also harden into a solid mass called a bezoar. Bezoars can cause obstructions in the stomach that keep food from passing into the small intestine, they are highly painful and can be life threatening. People who have both diabetes and gastroparesis may have more difficulty because when the food doesn't process threw the system at the normal rate blood sugar levels become unpredictable. Gastroparesis is misdiagnosed a lot but when it is diagnosed they use a few test. a barium x-ray, Gastric emptying scans, scopings, the smart pill, ultrasound. To me the worst test is the gastric emptying scan. We are asked to eat eggs with a radioactive tracer within 10 minutes with two pieces of toast and a glass of milk. We also have to keep it all down, if 20% or more of the meal is thrown up you have to restart it. Last month i did this test again and vomited so i had to repeat it the next day, it is very hard for us to eat and eating sets of nausea, vomiting, and pain very bad for us. There are drugs like Reglan to speed up digestive tract however it is black boxed (marked unsafe) by the FDA because it causes tremors, sudden death syndrome, and more. There are no "good" options for us. Nausea meds do not work very often for most of us. Some of it like phenergan can be dangerous also. Zofran is a common nausea medicine given to gastroparesis patients, it is originally intended to be a nausea meds for chemo patients. With my body (and many others i have talked to) the medicine quits working after a short period of time and we are forced to try another one. Every new medication increases risk of drug interactions, adverse side affects, and other problems. The diet for everyone is different depending on what we can tolerate and that tends to change often. Fiber and fat are the two things we can not eat. Sadly that means that fruit and veggies are out of our diet. Fish and potatoes is what i survive on, others are not as lucky and have to rely on feeding tubes and TPN to get the nutrition they need to live. With any tubes there also comes a lot of risk. Infection is common and also can be deadly sadly. Also often with tubes after a few years you have organ failure and require transplants. With the low amount of research that has been done we are loosing people that are way to young to die. There is no need for us to continue to suffer in silence and slowly starve to death, please help us raise awareness and get our lives back! There are a few facebook pages that me and many others rely on for advice, someone to listen. To be honest we have all became a big family, I personally could not fight gastroparesis without them. A point comes in your life where everything changes, for some the change is a new job or something great, for others like myself the change is an illness or something bad. I was a perfectly normal, healthy young adult. It was as simple as I woke up one day and felt like i had the flu, i would eat and throw up like i had food poisoning, i was pregnant at the time so every doctor would tell me it was just extreme morning sickness and that it would go away, it never did. After I had my son i was still very sick every day so i went in to a different doctor and was told it was all in my head (sadly this is a common response we get from doctors due to the lack of research. Roughly 9 out of 10 people with Gastroparesis have been told it is all in their head. This is very common before diagnosis and sadly even after we are diagnosed. We are told everything from we choose to be sick, we just have a eating disorder, we are druggies looking for pain medication, if it is a rude vulgar thing to say to someone suffering from a incurable disease odds are we have heard it. Not only do doctors do this tho, wives, husbands, friends, parents, many people are not understanding of this disease. I believe this is because it is so scary it is much easier to pretend it isn't happening, and other times i believe it is because we do not LOOK sick.). I continued seeing different doctors until finally one that was just out of med school remembered studying it for an exam and sent me over to the hospital for my first of many gastric emptying scans. It showed up severely delayed and i was finally diagnosed with gastroparesis. The diagnosis was bitter sweet news for me, while nice to know what was wrong with me I was also informed that there was no cure and very limited treatments. They tried injecting botox into my stomach twice with no success, the gastric pacemaker tends to only work in diabetic patients so it is not an option for me, the pills have side affects, feeding tubes run high risk. I wish we could go to the black market and buy a new stomach, sadly we can't do that so we are forced to live each day in pain, miserable, and malnourished. We suffer in silence and need awareness, we need research, we need a cure or better safer treatments, we need our lives back. A good friend of mine and fellow fighter of gastroparesis LaShelle Shuman created the GreensNotEasy Gastroparesis page, their website is Www.gnewithgp.org. She is the definition of a survivor, she has overcome so much and not only holds her head high, she lifts us up when we are down. She has helped so many people, below is her story of her fight with Gastroparesis and PKD (please go to http://www.pkdcure.org/ to learn more about PKD). This story is from her blog that can be found at http://greensnoteasy.blogspot.com/ And here is her story! I can remember almost every detail about the day that I first got sick. My husband was stationed at Camp Humphreys in South Korea on a two-year tour and we were there together. I remember that it was a Saturday night because every Saturday night since my husband and I got married, we make it a point to have date night. As was our usual date-night custom… we wandered through the Ville (Korean market place) looking over the local restaurants. As usual, we picked up a pizza at the only decent Korean pizza restaurant we could find in town and we headed over to the tiny hole-in-the-wall movie shop to pick up a movie to buy and take home. When we were done window-shopping, we made our way home to our 3-bedroom apartment off base. We didn’t have to look too carefully to see the mushy, wet rice paddy fields behind our apartment as we made our way up chilly marble steps and through our front door. Slipping off our shoes in the tiny foyer, my husband and I quickly cut to the chase by popping the movie we choose into our DVD player. We propped our feet up on the coffee table with the pizza box in our laps and the lid dangling over the edge of our uncomfortably small Korean sofa. I felt really hungry so I ate most of my pizza rather quickly and rested with my arm wrapped around my husband’s neck as the movie played on and the opening credits rolled. I remember feeling blissfully happy. I was 19 years old (I got married at 18) and I (unlikemany other Army wives whose husbands were deployed) got to be with my husband and didn’t have to worry over his safety. I also got to travel and live in another country with the man I loved when all of my friends we’re still stuck stateside. As the movie was nearing the end and I sat there with my arm around my hubby while nibbling on half a slice of uneaten pizza that’s when it hit me. Something was wrong. Something was very, VERY wrong with my stomach and just like that… my life changed forever. I spent the rest of that night vomiting everything I ate in the bathroom toilet. ‘It’s just the flu, It’s just the flu,’ is what I kept telling myself as I hung my head over the cold porcelain edges, but I had no idea how wrong I was. I hardly remember the last year that we spent in Korea. I was only there for 6 months before I got sick. From the first night that I got sick to many, many months later, I vomited up everything I ate and drank (including water) without ceasing. I slept more than 48 hours straight without so much as waking up to use the bathroom. I slept more than I was able to be awake. The little stray kitten (known as “Boo” short for “Boo-boo kitty”) that my husband had caught and given me, would lie on my chest and every so often he would pat my face with his paw until I could open my eyes. He would stare up at me with big sympathetic green eyes, and mew at me as if he was checking to see if I was still alive. Boo would then let me go back to sleep and repeat the process every several hours. Having Boo lay with me is a comfort that I will never forget. I was so sick and malnourished that I could hardly walk to the bathroom to throw up. I dropped weight so fast that I often had to crawl my way to the bathroom or risk passing out from trying to stand up. I threw up until my hands and my body began to tremble and I started having what I like to call “Swiss cheese” memory. People would stop by to see me or call and have conversations with me and Icouldn’t remember any of it, not one word. New friends of my husband’s would stop-by to visit and their faces have since been lost in my memory like the holes in Swiss cheese. As if you knew at one point that your memory was intact but bits and pieces we’re just eaten away by pain and malnourishment. Most of the time however, I felt like I was either dreaming or half dead. Since my husband was in the Army, he worked a lot. He tried to help take me to the hospital a few times but between the Army doctors and his NCO’s (Non-Commissioned Officers -his bosses), things we’re not going in my favor. His NCO’s wouldn’t allow him to take the time off work to help me and the military doctors told him that I had the flu, that I was starving myself, making myself puke, that I was making it up, and that I needed to see a therapist. It was at this time that my husband started to drink a lot more. He was 19 or 20 years old at the time and he didn't know what to do, who to believe, how to help me, or how to fix it. No one had given us any kind of “how-to-help-your-wife-when-she-is-dying” books or any kind of guidelines. We were young, newlyweds, and he was too lost to help me. As I fell further into malnutrition and starvation, my wonderful husband fell further and further into a disease of his own, alcoholism. I was too sick and too far-gone with my own illness that I never even noticed. I couldn't speak but a few words in Korean, so I couldn't call a taxi to pick me up to take me to the hospital on post (the TMC) and since we lived off post, I had to walk. To say it was a very, very long walk for a small 5'2 woman who now weighed 64 lbs. would be an understatement. I cried the whole way there. I had to keep making stops along the way. I had to stop to rest and sit on a curb, stop to vomit, stop to hold my stomach while another wave of abdominal pain swept through my body leaving me a quivering mess, and stop to avoid passing out in the middle of the street. I didn’t really “walk” to the T.M.C; No, I crawled my way up the road just to get there. I went to the hospital as many times as I could because they refused to admit me. My clothes no longer fit and hung limply off my body, so I made the hospital weigh me every time I went to see them. I re-explained my symptoms with every visit and I waited as they brought in other patients first and saved me for last. I had nowhere else to go. My life was in shambles, and I was half way around the world from any of my family members or friends. I thought for sure that I was going to die there. It took almost 6 months of fighting with the Army doctors to get them to admit me. In order to be admitted they had to put me in an ambulance and take me to Osan Air Force base, which was over an hour away. Just getting the IV into my arm to get me to Osan was scary for me. I was SO afraid of needles that I curled up into the fetal position and cried as they put the IV into my arm before transporting me to Osan. I have hated hospitals, doctors, and needles all my life. Before I got sick, I had a strong phobia for any and all things medical. If anyone so much as mentioned having to get a shot, my palms would go damp and my heart-rate would sky-rocket. At one point when I was young I felt as if I would rather have died than have to get a needle put in my arm or have surgery. As afraid as I was, I felt too sick and close to death not to allow them to shove that needle through my flesh. I wanted the pain to end so much more than I cared about my phobia so I forced myself to overcome my fear to get some desperately needed help. I didn’t want to have to suffer any more and after months of pain and nausea, I honestly thought at one point that if this was the way my life was going to be from now on… death was far more merciful. Once at Osan, I had several tests done but in the end, the only thing that they could find wrong with me was that they said I needed to see a neurologist for a kidney disease called Polycystic Kidney disease (all the CT scans for my stomach came back normal). I was scared to death because they said they were quite certain that I had it. Note: a year later when I got back to the states a doctor who claimed to be a specialist told me Ididn’t have PKD. I wanted to believe him so Ididn’t get a second opinion. It wasn’t until years later while under the care of a GI doctor at Mayo Clinic that I was sent to a better neurologist, who confirmed my PKD diagnosis by doing an MRI (Currently I have 14 cysts on my left kidney, too many to count on my right, and one is the size of a baseball. Eventually I may need a kidney transplant). When I heard the news that I had PKD for the first time at Osan hospital, I didn’t know what PKD even was and my doctor didn’t really explain it. The first thing I thought was that PKD meant that I was going to die. I curled up in the fetal position wearing my hospital gown, in my small hospital bed as nurses walked briskly past my door and machines beeped and buzzed away. I pulled the sheets up over my head, wrapped my arms around my legs, and I cried so hard that I was gasping for air. That's the way my husband found me when he came to visit me in the hospital, sobbing in the fetal position under the hospital sheets. He wrapped his arms around me after I told him what the doctor told me in-between sobbing heaves and then we cried together. Nearing the end of my husband’s 2-year deployment to South Korea, I was still vomiting quite often, but the IV’s from the hospital did help kick start me up again. I thought that getting a diagnosis would be the end of my hospital visits or at least give me comfort... boy was I wrong! I had no idea just how sick I was and I am so glad that no one ever told me just how hard my life was going to be. I think that if they had, I would have been so afraid of what was to come that I wouldn’t have been able to go on. I remember thinking, "it's all over now," as I sealed up some of our boxes in our Korean apartment that were being shipped back to our new home in the United States. To this day, that’s the only thing I really remember about packing to come home to the states. Six years, two surgeries, many hospital visits, and 6 months spent at Mayo Clinic later, I was finally diagnosed with Gastroparesis. I may not have known the name or the ugly face of GP then, but I sure know what its ugly face looks like now!