TRISHA'S PERSONAL STORY

February 11, 2016 Gastroparesis
Country : USA Satate : North Carolina 

My Gastroparesis Story My name is Trisha and I am sharing my personal story to give you an inside look at what it's like living with this awful and misunderstood disease. I have had GI-related issues and numerous sporadic episodes of being unable to eat due to pain and nausea/vomiting for many years, but none of the episodes has been anywhere close to being as severe or long-lasting as the issue I have now. In early February of 2013, I became sick with what we thought was a common stomach bug. I was unable to eat or receive an adequate amount of fluids orally, due to severe abdominal pain, nausea, and vomiting. As I progressively got weaker and the symptoms increased, my doctor diagnosed me with possible diverticulitis. After a few trips to the ER, with little help and no real improvement, my family and I knew that this was not a stomach bug, so I decided to see a GI doctor for my issues. My GI ran a number of imaging tests, but could not find anything that would be causing my inability to intake any nutrition without pain, nausea, lack of appetite, and vomiting. After a couple of months went by and I continued to get weaker and lose weight, my GI referred me to a urologist and a gynecologist. Neither could come up with a reasonable diagnosis to explain my symptoms. They referred me to a surgeon for a diagnostic laparoscopy. I never made it to that appointment because my husband had had enough of me going from doctor to doctor with no results. I was not improving, still unable to eat months after initially getting sick, vomiting/heaving over anything that went in my mouth, and in lots of pain. So one morning, he drove me to UNC, where I was admitted for testing. I went home the following week on a liquids-only diet; however I was unable to drink an adequate amount of fluids, became dehydrated, and was facing awful side effects from Reglan, the medication the UNC doctors had put me on. I had to return to UNC as an inpatient once again. I had to receive nutrition, and it was clear that I would not be getting it orally. In May 2013, I had to resort to having a GJ feeding tube placed in my small intestine, which I still have today. I have a machine that pumps formula into my body for at least 15 hours a day. I have to wear a backpack carrying this formula all day. At first, it was hard to accept, but God helped me gain peace, and I became comfortable with wearing the bag in public. (I admit a more comfortable and stylish bag did help some as well.) I have continued to have rough days but have been able to function "normally" on most days. The past 6 months though have been extremely difficult for me physically and emotionally, though, as my body has begun having trouble with tolerating enough calories via the tube. Surviving on less than 500 calories a day doesn't give me much energy at all. I am a 5th grade Science/Social Studies teacher. I love teaching with a passion, and this year is my 15th year as an elementary teacher. However, due to illness and other hospitalizations, I have been unable to work. To begin with I was angry and upset. I honestly thought that I was fulfilling my purpose by being a teacher and loving mother, so why was my body keeping me from being in the classroom? I questioned God's reasons for making me endure the pain and suffering of this debilitating disease. Was I not following the path he desired for me? I honestly try my best to live my life with as much love, understanding, and patience as I can. With many prayers and discussions with God, I finally discovered what I believe is another purpose for my life; at least I hope that's what it is. Some doctors have me diagnosed as having “Gastroparesis” which means a “paralyzed stomach.” I have learned that the majority of the public and even medical providers/physicians are not aware of this debilitating disease. Some doctors label me as having a “Functional GI Motility Disorder.” Regardless of the label, my life has drastically changed. Since my diagnosis, I have seen multiple doctors/nurses. I have had many return visits to the ER for dehydration, uncontrollable pain and nausea, and feeding tube issues. Every 3 months I have to return to Interventional Radiology and have my feeding tube replaced, sometimes even sooner, if it clogs or falls out. I was an active parent, wife, daughter, and teacher before my illness. I was overweight, but otherwise healthy and felt great prior to this illness. Since getting sick, I have lost approximately 160 pounds, and on most days, especially recently, feel too awful to be active. My quality of life has diminished, but I will continue to fight to get it back. At first, I felt strong and brave, thinking I could live my life the same as always. I would just have a different way of receiving my nutrition. Instead of eating, I would tube feed. To begin with, I tried feeding at night so that I could feel and look "normal" during the day. But I was not "normal" anymore. I was struggling to get through my day at work, just to come home and crash with my family. I gave up trying to hide my illness, and decided to begin wearing my backpack during the day to run my feeds in hopes that my energy would improve. I wear my backpack all day, regardless of whether I am working, grocery shopping, or going to a doctor's visit. Although I love my teaching career, I am currently on medical leave because my body cannot keep up with my physical demands. I am praying to regain my strength and get my symptoms under control so I can soon return to teaching soon, as I miss it greatly. I was hospitalized this past October (2014) for almost 2 weeks because my body couldn’t even handle the formula that I was trying to send through my GJ tube. In December (2014) I had my gallbladder removed, and since then, I have been trying to increase my feeds so I can function and regain my strength. I am currently surviving on less than 700 calories (tube fed) a day. I despise how this disease makes me feel guilty over missing family events and not being able to attend some of my children’s activities. I hate not being able to easily go out to eat, to sporting events, camping, vacations, or any of the other things I enjoyed prior to my illness. I am young and should have lots of life ahead of me, but instead am struggling to find a cure or treatment that can allow me to actively live again. It's hard to fathom that there is not a cure for Gastroparesis/FGIMD and that I may have to deal with feeling like this for the remainder of my life. Gastroparesis is an "invisible disease", which means that no one knows that I am sick by just looking at me. They make comments about how great I look after losing so much weight. They don't understand when I tell them thanks for the compliment, but I lost all of my weight from not being able to eat anything and would rather be heavier than feel the way I do. I am angry at times. My insurance will not cover my formula that is required for me to survive and puts hurdles in my way before covering certain treatment options. Sometimes when I see a new doctor or nurse, I have to TEACH THEM what is wrong with me, what kind of medications I need that work, and which medications I have to stay away from. I am heartbroken when I make some exciting plans with the family, but then I have to cancel because of being sick. I want MY LIFE back! I have been blessed, though, with receiving help and support from those around me. I am fortunate to have found a wonderful GI doctor who actually listens, seems to genuinely care, and attempts to help me manage my symptoms. Additionally, I am appreciative of the support I receive from my ever-growing GP community. I am a firm believer that everything happens for a reason. God has NEVER failed me and NEVER will. Through this storm, a wonderful bond was formed with two of my fellow GP warriors. We are using social media and our advocacy group to create web pages, community pages, Twitter movements, gastroparesis-related events, letter writing campaigns to elected officials, the media, and medical providers. We are writing and distributing petitions, making awareness videos, creating fundraisers, and participating in all sorts of other activities to support the GP community. With God's help, we have formed a magnificent team. I have come to realize and accept that God has set forth this path for me. I HATE GASTROPARESIS! It has been a thorn in my side; however, with God's assistance, I am finding my way.

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