Food: How I Miss You, How I Wish I Could Have You Every Day. Struggles of a Broken Stomach: Gastroparesis.
Posted by juliebernal | Filed under Acute & Chronic Pancreatitis, Chronic Illness/Rare Disease, Digestion & Nutrition, Feeding Tubes & Total Parenteral Nutrition (TPN), Gastroparesis (Delayed Gastric Emptying), Hospitalisations/ER Visits, Infection/Fever, Malabsorption/Dehydration, Periodic Paralysis, Recovery & Coping, Total Pancreatectomy & Auto-Islet Cell Transplant (TP/AIT)
Aug. 1, 2014
August is the national awareness month for Gastroparesis.
Gastroparesis from a patient’s point-of-view: I struggle with a condition called gastroparesis which causes the stomach to have an inability to empty properly, which can make eating and even drinking fluids limited most days and even impossible on bad days. I believe this condition is much more devastating, life-altering and potentially life-threatening than most people can wrap their heads’ around. Most people can’t fully understand the severity of gastroparesis. Even most doctors don’t know how to manage gastroparesis because there is no know cure, and there is only limited treatment, which can have risky side effects or may not work for some. For me, I have tried all I can.
Here is an example of a bad day for me, this day was yesterday: I spent the day in the emergency room with one of my most severe attacks yet. I went to the ER because I was unable to eat or drink much over the last four days, I was in so much pain, having nausea, a fever, was not able to move my arms or legs very well and and my blood sugars getting low from not being able to get food to stay down.
When I was checked in, the first nurse said I was burning up and said I looked like I had a fever. The ER ran labs and said my white blood cell count was up, and potassium very low. I have a condition that can cause low potassium and full body paralysis and it can be very dangerous if not treated right away. They gave me IV medication for pain and nausea but no IV fluids. After seeing my low potassium, they gave me potassium to drink but I threw it all up just minutes after drinking it. I was given a prescription for antibiotic pills to take at home for the unknown infection. The nurse came in to discharge me. I was a bit upset because I was still worried about my low potassium and my fever. She said, “What fever?” I told her I have no spleen and I have a fever. Not having a spleen, and having an infection and fever should be treated right away. I asked, “How can you guys send me home to take oral medication if I am throwing them up?” So she then took my temperature and it was 101.5. I said to her, “Can you please tell the doctor about my fever and tell her about how I threw up all my potassium just now. Ask how I am supposed to take my potassium and antibiotics by mouth at home if I can’t keep them down?” I also said I was worried if I was sent home like that, I could potentially die in my sleep. She kind of rolled her eyes and said, “You aren’t going to die. There is nothing wrong with you to show reason to be admitted.” And I said, “Clearly you have no understanding of how severe my conditions can be, and fact is this can be life-threatening if not properly treated.” Actually, normally when I am vomiting and have a fever, I am admitted right away and receive IV antibiotics and fluids until I am stable enough to keep liquids down. This time it just did not matter to them, I guess. The nurse came back and said I was still discharged, and to “deal with it at home.” I was sent home without them rechecking my low potassium, dehydrated, vomiting and with a fever of 101.5. I cried some, and my husband tried to calm me down and just told me that we should not be surprised by this because they just don’t get it, and we have more knowledge of how to take care of this anyways. In truth, he is right, he has kept me alive this long. But I knew it would be a long night and I knew I was in bad shape. By the time I got home my fever spiked to 102.5 and as the night went on, I threw up a total of 6-7 times. I even threw up all my oral medication from the entire day and everything that was sitting in my stomach…contents as old as 24-48 hours. I was very pale. I even called my GP office and the on call doctor told me I should go back to the ER. I knew I should have gone back, but every time I moved, I would throw up. Every sip I took, I would throw up. And I did not want to waste more time just to be sent home again. Since we have IV fluids at home (which I do 3 time a week) and I was so dehydrated, we ran an IV bag and that helped some. I took a fever reducer and put cold washcloths on my head and neck. After I was done throwing up, my fever slowing went down. I believe maybe all the old food sitting in my stomach for so long caused an infection and maybe getting it all out was good. But still, I am left with hardly any calories in me. My calorie intake over the last four days has been dangerously low (around 100-500 calories a day and should be around 2,000-3,000 a day), and I am sure my nutritional state is very unstable at the moment. And since I am not able to have a feeding tube or gastric pacer/stimulator, and my doctors are not willing to do TPN again at the moment (because I had one bad experience with it before and they worry about the risk of organ failure), I can run the risk of starvation. And I think we can say, we have all heard the saying, “Starving to Death.” There does come a risk when a person cannot get proper nutrition into their bodies. And it does not help that I have diabetes and mostly deal with low blood sugars and also have a metabolic/muscle condition (periodic paralysis) which causes low potassium and full body paralysis – gastroparesis only makes these conditions worse and harder to manage.
I am not sure if I ended up with this condition as a compilation from pancreatitis or from the surgery when I had my entire pancreas and part of my stomach removed and the vagus nerve was cut (the nerve that tells the stomach to work). Pancreatitis and stomach surgeries are known for the possibility of developing gastroparesis. As a result, eating solid foods and drinking liquids at times can become very challenging, or even impossible on certain days. For me, eating is not something I can do naturally like healthy people can. This natural body function has been taken from me and it is a very serious condition, and often misunderstood. I have already tried ways to try to improve my situation; but I do not tolerate the few medications available. Luckily I still have some good days, but the bad days become a fight to survive. Healthy people are able to eat and their stomach will empty and the contents will move on. But a person with gastroparesis, the contents can sit in the stomach and can take hours or days to move on (empty) depending on the severity of the condition. When that happens, there is no longer any room left in the stomach, so there is no longer any room left for more food or fluid in the stomach. As a result, the patient may try to eat or drink something, all the content has no place to go, so then it often ends up coming right back up as vomit and undigested. But many times the patient can tell when the stomach is already full and not emptying. It can become full after only a few bites of food. The symptoms can be nausea, vomiting, a feeling of fullness, pain and bloating (and often a feeling of hunger is still there because the patient is literally starving). When patients often get to that point, they may just stop eating completely. And it can be very dangerous to force someone to eat when they have severe gastroparesis and their stomach is already full. With a severe case of gastroparesis, the patient can not eat or keep fluids down because the stomach is paralyzed or broken and no longer able to function as it should. People and doctors need to understand, this condition is very different from anorexic or bulimic, because with gastroparesis it is caused by a medical problem with the stomach itself and food or liquid has an inability to physically move out of the stomach. Gastroparesis patients want to be able to eat, only their bodies do not allow it. I have heard others with gastroparesis say that their families (sometime doctors) don’t understand and try to force them to eat. But, caretakers really need to listen to what their loved ones are saying and feeling. You cannot force feed someone with gastroparesis. Force feeding can be dangerous. Luckily, my family has seen first hand what I go through and they handle it very well and have been very supportive.
Just a thought to keep in mind: please be kind to those struggling with gastroparesis. It is not an easy life. I have been a member of some support groups and just in the last year…there has been so many that have been in and out of the hospital, had multiple surgeries, and I have lost count of how many lives have been lost because of gastroparesis and the secondary complications it can cause. It is a scary reality. I believe there needs to be more awareness. Yes, some can manage a life with gastroparesis, but those with a severe case, it can cause so many secondary problems like malnutrition, can be extremely debilitating and can result in death. I try not to think about all the negatives. But on the bad days it is a reality and there is no way around it. I can feel starvation sinking in and my desperation and will to survive kicks in. Many people wonder why I just CANNOT eat what they think I should be able to eat, or what they believe to be “healthy” for me. And since everyone is different, what may be healthy for them, can actually be very risky for me; like fresh vegetables, high fiber, whole grain, meats and the list goes on. The truth is, just about everything makes me sick. Picture the way your stomach might feel when having the flu or the day after the flu. Picture how worn out and tire you feel, how much nausea you have. Now, picture that feeling every day of your life. Trying to force a few sips of soup, or wishing you could eat a full size meal 3 times a day. Forcing yourself to get things done around the house, only to end up back in bed. Yes, some days I can eat, but the days are limited and so are the amounts. So, this is my life. A very limited diet on the days I can eat when my stomach is slightly working, and then only a few sips of liquids on the bad days (which can last for days to a week at a time). So, hopefully my stomach will start working a bit better, and hopefully it will be soon! But remember, some chronic illness are invisable. You may not know what someone is suffering from, or trying to survive. Be willing to listen. Never judge what you don’t understand. And be kind to others.