Those of you that have read my previous blogs are aware that I try to keep a positive outlook. While sharing my honest experiences and thoughts, usually I can add a spin to find the "silver linings." Today is not that case. Today I dare you to take an inside look at Gastroparesis and the pain it creates in ones' life.
Gastroparesis is an individualized destructive disease. Everyone is different, yet the pain is still there. My journey with Gastroparesis began in mid-Feb 2013 and will continue until someone is able to come up with a cure or at least better treatment options. Instead of writing about my entire journey, I am going to break it down to the different kids of pain that I have to endure on a daily basis. Please note, words can not draw the most accurate image. Everyone's pain is different, some better managed than others. Some similar to mine. And yes, some much more severe than mine. The passage will hopefully give you an idea of how disabling Gastroparesis pain can be. Upper Abdominal Pain For me, this pain is an unbearable hard to breathe nuisance. It occurs whenever I try to become brave and eat or drink "real" food. Something as simple as a couple crackers, cup of delicious hot chocolate, a slice of grilled toast, or a bite of scrumptious cheesecake can send me into almost immediate pain. This isn't a "normal" little stomachache that last a few minutes, or even an hour, and then goes away. A flare can last continuously for days, sometimes even weeks, without a break. The pain is horrendous, keeping me unable to function. Trying to hold tears back while also attempting coping strategies. And as if the pain isn't horrible enough, bloating and nausea usually accompanies it hand in hand. Eating something as simple as ONE banana can make me spend days feeling like I have majorly overeaten at a buffet and contracted food poisoning. Only the pain and nausea doesn't pass anywhere as quickly and was only over a small amount of food or liquid. Some of my friends also have distention, luckily I don't. They can eat a few bites of food and their stomach will literally expand. One minute they are thin, the next they literally look and feel like they are 9 months pregnant. Lower Abdominal Pain The pain in this region is also continuous and accompanied by bloating and intense nausea. I have no control over pain in this region. It doesn't matter if I choose to eat or drink a little something or not. I seem to constantly have consistent pain here. It can be a nagging dull pain at times to intense fetal position pain at others. If I had to rate it on a number scale, I would say that I am always at least a level 4 on the pain scale, with varying degrees higher as the day goes on. I am unable to receive adequate nutrition orally due to my upper abdominal pain issues. As a result, I am dependent on a GJ feeding tube. (I will describe my feeding tube in the next section.) Through-out the day, I am required to run formula. Running the formula, creates more lower abdominal and intestinal discomfort and pain. Usually, I can handle the pain of this region first thing in the morning. However, as the day progresses so does my pain. Unfortunately, I don't have a successful remedy. The nausea medication and intestinal cramping medication that I use throughout the day, (Both are at their highest dosage avail and can only be taken every 6 hours) only last for about 3 to 4 hours. While they do offer some short-term help, they create new issues and later pain in the form of severe constipation. My doctors and I are still working together to figure out the best medicine regimen, weeding out those whose benefits don't outweigh the benefits. Sometimes, I am lucky and suffer the pain in the lower abdominal region solely on it's own, but other times I have to suffer the pain of both the upper and lower region together, with relentless nausea regardless. Feeding Tube Pain I don't know how many of you are aware of feeding tubes. I have a GJ feeding tube. The G portion enters my stomach. If my nausea and/or bloating is really bad, sometimes I can get lucky and "vent" my stomach. This means I can allow the contents of my stomach to run out of the tube into a cup or the sink. I have been instructed to be very careful with this, as it can cause electrolyte problems. I resort to venting only when my nausea has me at the point of vomiting and/or heaving. The J portion of my tube, enters my small intestines. This is where the formula that is pumped in my body goes. Currently, I am running my formula at 30-35 ml/hour for about 9-10 hours a day. This is my sole nutrition. I am unable to run it any faster or longer, as the pain becomes to awful and unbearable. Besides the intestinal pain and cramping. I also have sporadic pain around my tube. The stoma (the hole under my breastbone for the feeding tube) sometimes becomes extremely sensitive and irritated. I have to be careful to ensure that it doesn't become infected. (I have heard horror stories about the pain and life-threatening nature of infections around and/or in the tube site.) The stoma pain is rough, but thankfully I can usually find measures to improve the cause of pain and shorten the duration of time. Every 3 months, unless sooner due to unexpected issue, I have to have my feeding tube replaced by Intervention Radiology. The procedure itself isn't too bad, I have conscious sedation, though I am usually sore for a day or two. All Over Pain As a result of receiving inadequate nutrition and fluids, even with a feeding tube, I stay dehydrated and occasionally have vitamin deficiencies. Therefore, I must deal with all over muscle pain, cramps, and fatigue. Even though I have a regular sleep pattern, I do not always wake up refreshed. I toss and turn during the night on most nights, due to the unwanted nausea and abdominal pain. The dehydration also puts a wear on my body. It makes me feel very weak, tired, and creates restless arms and legs. It causes additional intestinal issues, as well, such as constipation and possible colonic inertia. Both of which add to even more crampiness and razor blade pain with defecation. Additionally, the dehydration causes concentration issues, lightheaded/dizzy spells, and heart palpitations. Emotional Pain I can't even begin to make you understand the emotional pain that I endure as a mother, patient, and friend thanks to Gastroparesis. It's truly too difficulty to explain, but I will try my best. As a mother, I always felt like I had to be strong for my children. I still do, though my vision of what strong means has been altered. I used to believe that being strong meant showing my kids that everything was under control. However, having gastroparesis has proven to me that being a strong mother means showing your kids that things are not always under control. Sometimes we have to be strong enough to ask for help. We have to be strong enough to accept help from others. I have realized, and hope my kids have as well, that strong mothers have unconditional love for their children and will always fight the battles worth fighting, by never ever giving up. Being a mother isn't easy. I worry about my children, it's only natural. It pains me to see them hurt. Unfortunately or not, when I see them hurt, I hurt too. I hurt when I see their disappointment and the tears in their eyes, because they feel helpless from being unable to help me with my physical pain and struggles with gastroparesis. It is so painful to see them create a special magic hug or piece of art to try and help me feel better only to see no change. It's heart-wrenching to see them tell me they understand if I can't make it to a ball game or special event, when I know how important it is to them and how badly I want to be there. I feel emotional pain, sadness, guilt knowing that they themselves are missing out on exciting vacations because I can't handle physically handle them. Painful tears slide down my face as I hurt for the energy and strength to actually play outside with them and create fun life-long memories before their childhood years disappear. It's painful as a mother to realize that before long my kids will be on their own, and be left with memories of me as a gastroparesis patient in pain instead of a mom that actively enjoyed life with them. Not only do some of my friends and I suffer from physical and emotional pain brought on as a result of gastroparesis, but we also have to deal with numerouse medical providers. I will not deny, my personal GI and PCP doctors have been and still are phenomenal. (Though a little afraid about who my next PCP will be after mine moves out of state in the next couple of months.) I have been very blessed with having some open, respectful, and knowledgeable physicians. Unfortunately, that is NOT the case for all. I hear complaints every day about the experiences that they have with their doctors. Some many physicians, including some of my ER/Immediate care doctors, just don't "get it." Either they are unfamiliar with what Gastroparesis is, unfamiliar with how to treat it, or unfamiliar with it's debilitating nature. It is not uncommon from someone living with Gastroparesis to be told from their doctor that it's all in their head, that there's nothing wrong, that the pain is not real, that they don't know what else to do, that they have run out of options, or that they simply can't help them. I hear about it EVERY DAY in my support groups online. In my groups I have witnessed the confusion, loneliness, and heartache of not having supportive doctors. I have witnessed and experienced the darkest hours of this disease, the feeling of being alone, being a burden, or being helpless. Luckily, I was rescued from those deep waters. God, family, and new online friends rescued me. I know that there is hope. I am in this fight and I will NOT give up! Unfortunately, others are still struggling, still drowning. I do my best to help and I share their pain. I can't describe how difficult and painful it is to hear others talk about struggling to survive, but still can't find a helpful and compassionate doctor. The pain and anguish is an even higher magnitude when kids and babies are the ones struggling with Gastroparesis, yet unable to receive appropriate treatments. My heart also aches each and every time I hear of someone that has lost their life to Gastroparesis complications; Many have died from (but not limited to) malnutrition, infections leading to sepsis, organ failure, and even suicide. Why is this? Why is Gastroparesis not talked about more? Why are prescriptions that so many need to survive their day to day life, becoming harder and harder to fill? Why are government agencies unable and unwilling to see the patients for who they are behind the prescriptions? Shouldn't doctors and patients (if needed the patient's family) work together to make the best possible medical decisions? These important and life altering decisions should not be made by government agencies or insurance companies that aren't aware of the patient or medical needs. I am in this fight not only for myself, but also for all adults, children, and babies that have this awful debilitating and painful disease, Gastroparesis. We will fight to exist! We will fight to live! We will fight to be recognized! We will fight for better treatments! We will fight for a cure! Will YOU help us fight?
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Trisha BundyA proud mother, educator, Gastroparesis & GI Motility Disorder Advocate, Like my content? Want to thank me with a small token of appreciation? https://www.amazon.com/hz/wishlist/ls/1LH7R639ORBML?ref_=wl_share
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