I was diagnosed with Gastroparesis in 2007/2008. I was prescribed multiple medications throughout the years, and none have helped. Have had more than 10 endoscopic procedures done, 2 with botox injection. The 1st time with botox was in 2008, it did help, I was able to eat without pain, and still able to eat whole foods.
Unfortunately nothing about Gastroparesis is explained by the Gastroenterologist, they pass it on to a nutritionist or a dietician. The insurance does not cover that profession, and it cost way too much for my budget. So I am left on my own to do research and trial and error with foods/drinks. That can be a setback at times, because once I get sick from something I ate, drank or medications, it takes days and sometimes more than a week to get my stomach to be calm again. I have been to 10+ specialist and to no avail, I am getting worse in my health, these doctors know it and they see it. I weigh 82lbs, am malnourished, malabsorption, my food intake is very small and limited. The last GI office I went to in May, they didn’t have my records, never seen me before, and the nurse practitioner prescribed Creon. She never asked if I was allergic to pork, (the enzymes are made from pig) and I had severe reactions to the meds. Another setback. She offered feeding tubes, and I opted out of that as I can still chew and swallow and keep food down. That seems to be the go to for these GI’s, but there are many complications with feeding tubes. I have suffered enough with pain all throughout my body, and I don’t want to deal with more than I can handle right now.
Ever since I’ve been diagnosed with Gastroparesis, the doctors have diagnosed me with more symptoms: gastritis, gerd, fibromyalgia, heart disease, hernias, low blood pressure, low heart rate, dermatitis in scalp, underweight, malnourished, malabsorption, asthma, mild hypertension, anxiety and depression, brain fog, the list goes on year after year. What I don’t understand, if we don’t digest food correctly, how can the medications digest correctly? I don’t think they do, and that’s why no medications help with the symptoms. We should not be prescribed PILLS of any forum. My family and I have watched my life decrease slowly in the last 5yrs, I have no quality of life as I am not able to work, go to family functions, take care of my plants, I have no friends anymore, most times don’t even have the family. Everyone gets tired of hearing how sick I am or how much pain I’m in . I’ve seriously tried to take the positive road, and I wind up feeling defeated every time. When I speak of being in pain, it’s something that is not easy to explain. I suffer extremely with left chest pains, this has lead me to multiple ER visits and no explanation. Some days, the pain is in my chest, my arms, my legs, my head, my back, I used to be able to take Tylenol or ibuprofen for the pain, until 2018 I acquired 3 bleeding ulcers and was rushed into surgery to stop the bleeding. At the time in the ER, the head doctor accused me of being an alcoholic and even told his students “this is what alcoholic syndrome looks like” . I haven’t had a stitch of alcohol since 2015 and that was only a glass of wine. That doctor was wrong and that should of never been said! The ulcers came from taking ibuprofen everyday for pain on an empty stomach.
I have been seriously mistreated by the GI’s. I was yelled at and told I wasn’t allowed to cry, another GI yelled at me and said if I get cancer it will be my fault for going to the ER too much. I have absolutely NO TRUST in the Gastroenterologist profession. They are the most uncaring, heartless, and not very professional. I’ve had GI’s tell me there’s nothing more they can do, I’ve also had a GI say Gastroparesis wasn’t real, it was all in my head and to go see a psychiatrist. This disease is hell! I don’t expect sympathy but empathy would be fitting! This disease leaves us feeling alone and that no one cares. I’ve read so many comments from GP’ers they want to give up, I feel the same. When you wake up everyday, and don’t know how you will feel, can’t make any plans to do anything because most likely I would have to cancel at the last minute.
I’ve done a 360 with my life, my eating habits, what I drink and trying to exercise, watching videos of nutrition and vitamins and supplements the body needs, I have spiral notebooks that are full of all this knowledge I’ve acquired, and although I’ve found some things that do help me to survive for the day, it’s not enough to keep me alive much longer. I’m tired of crying and begging God to help me. Why won’t these specialist help? Why won’t they get better educated, not just about the disease but about the patient. We are not just a number in a book, we are human beings with a heart and soul and feelings, we deserve to live too! Some days I have so much hope, because I did something right with food or the vitamins intake and I’m feeling a little better, and then the bad days come and they outweigh the good days. The nausea, bloating, vomiting was the beginning stages of GP, I’m near the end stages and I only have the nausea now. Too damn scared to vomit, the last time it gave me a myocardial infarction. I often wonder if FEAR had alot to do with not getting better. This life with Gastroparesis is a lonely road that should be less traveled! I’m ready to Fight to Live!!!!