feeding tubes

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    I messed up badly

    <p>I messed up badly</p>
    Community Voices
    Community Voices

    Any advice?

    It looks like I'm going home with an NJ tube. My GI plans on giving me the stomach tube in a few weeks. Any advice on feeding at home, or with loving pets?

    I am gonna have someone to cover the basics, but I'm just wondering if I could get advice from someone who actually has/had a feeding tube at home.
    #Gastroparesis #IrritableBowelSyndromeIBS #FeedingTubes

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    Community Voices

    #AskMe your questions about living with a feeding tube.

    <p><a class="tm-topic-link mighty-topic" title="#AskMe" href="/topic/askme/" data-id="5bc4f46d95775e00ad460618" data-name="#AskMe" aria-label="hashtag #AskMe">#AskMe</a>  your questions about living with a feeding tube.</p>
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    Community Voices

    Why I Need a Feeding Tube in Anorexia Recovery

    I currently have a feeding tube in place, so I thought it would be a great time to help spread some awareness. Feeding tubes aren’t just for premature babies, cancer patients or those with eating disorders. They are necessary equipment for many different types of conditions, for people of many different ages. There is a lot of stigma surrounding the use of feeding tubes, and in particular within eating disorders. This is my story. I have anorexia nervosa, and I have needed enteral feeding with an NG tube. Anorexia nervosa is a condition that has both mental and physical aspects. It is true that NG tubes are also used to overcome the mental side of eating disorders, but for me, it is more centered around medical stability. Malnutrition and low body weight are both aspects of anorexia that can lead to medical complications. For me, the main medical complications I have experienced from are postural tachycardia and hypoglycemic episodes, and my NG tube and enteral feeds have been vital for my recovery. When I have been medically unstable, continuous feeds via a pump over a 24-hour period has been the safest way to provide my body with nutrition. Eating disorders place strain on the heart, which in my case presents as increased heart rate after moving — postural tachycardia. Continuous feeds are necessary to reduce strain on the heart and guard against refeeding syndrome, which can affect electrolyte levels and have resulting effects on the heart. Continuous feeds are also the safest way to maintain blood glucose levels. Hypoglycemic episodes can be fatal and commonly occur in the early hours of the morning. Continuous feeds ensure my body is consistently being provided with slow-acting carbohydrates. During my recovery journey, I have also required bolus feeds. These are when a large amount of liquid is provided over a short amount of time. In my case, this is between 200 to 400 milliliters of high-calorie liquid formula over 10 to 15 minutes. This is used when I am at a higher level of medical stability but unable to consume the necessary calories for weight restoration due to gastrointestinal problems such as nausea, bloating, constipation and diarrhea. I have also required bolus feeds in later stages of my recovery to supplement oral nutrition to ensure I am receiving the calories needed to compensate for an increase in metabolism. This is my story, but the uses of feeding tubes are vast and different for each individual, so please be mindful of this.

    Katie Campbell

    Don't Be Sorry About My Son's Feeding Tube

    My son, Brayden, has had a feeding tube for the last two years due to failure to thrive and sensory issues related to autism spectrum disorder. My son can physically eat by mouth, but he refuses to do so. His sensory issues are severe, and he cannot even smell food without a reaction. We’ve been in multiple different feeding therapies, and several therapists have dismissed him stating there was nothing they could do for him, that he would need intensive therapy. Our doctor discussed with us placing a feeding tube multiple times since his autism diagnosis and the weight loss and feeding issues began at 18 months old. The doctor would ultimately decided against placing the feeding tube since he would drink the formula by mouth. However, at 4 years old, he began refusing the formula, and he began losing weight again despite every effort by the physicians, therapist, and us as parents. After multiple tests to ensure there wasn’t anything medically affecting his eating and all tests coming back fine, we had no choice but to place the feeding tube. He wasn’t getting the proper nutrition without it. I couldn’t sit by and do nothing when a solution was presented, so with the help of the doctor, we decided it was the best option for us. Much of the time when the feeding tube comes up in conversation, the response is almost always the same. I usually hear “I’m sorry” followed with a sympathetic look. My response to them is almost always the same as well. Don’t be sorry. I’m not sorry. Of course, a feeding tube wasn’t in our plan. Of course, we’d love nothing more than for our child to sit down and have a meal with ease, however, he’s growing and thriving. I was watching my son lose weight and seem to waste away before my very eyes. I was seeing him tire easily when playing, and I could feel his bones when I hugged him. My son was pale and was constantly getting sick. We’d tried feeding therapy after feeding therapy with no progress at all. I felt like I was losing my little boy. No, a feeding tube is not what I wanted for him, but it’s what he needed. It’s what we needed. It gives him the nutrition he needs when he cannot otherwise obtain it. It gave him back his life. It gave him back energy, strength, and it of course helped him put weight back on. It’s been a blessing in our lives. The feeding tube gave us our son back, and for that, I’ll never be sorry. So please, don’t be sorry for us either. Generally, the responses change once I explain what his feeding tube has done for our family. They see that even though it may not be an “ideal” method for feeding our little boy, it’s our method for feeding him, and fed is always best! Image via Thinkstock. We want to hear your story. Become a Mighty contributor here .

    Parenting a Terminally Ill Child With a Chronic Illness

    Samantha and Millie. I’ve experienced many challenges as a person with mitochondrial disease and chronic illness in my lifetime. In the later part of high school, I struggled with attendance, since most days I felt so awful I didn’t know how I would get out of bed in the morning. During my college years, I struggled with the progression of an unknown disease which included two hospitalizations and many ER visits. Following college, I struggled to work as a charge nurse in a long-term care facility. Eventually, I was unable to continue due to my health. After my husband, Justin, came into my life, things were better in many ways. My illness didn’t disappear, but I had finally defeated my own assumption that because of my illness I would never find someone to share my life with. We were overjoyed to find out we were going to be parents in August of 2015. Though I struggled with several complications during my 39 weeks of pregnancy, I couldn’t wait to be a mom. My sweet girl Amelia was born in April and I couldn’t believe how blessed I was to have such a perfect baby. But, throughout my pregnancy and after she was born I couldn’t shake the feeling that something was wrong with her health. In the following month, we finally were able to get answers about our daughter’s condition. Unfortunately, the top culprit suspected was spinal muscular atrophy, which we confirmed through genetic testing. Because of the early onset, it was very likely our daughter would be terminally ill, and without major intervention, she would not survive past 2 years old. I was not new to the community of disabled individuals, and I’ve encountered many parents of children with disabilities, and even terminal illnesses. Adjusting to life with my daughter’s feeding tube, oxygen, suction machine, and physical limitations really wasn’t difficult. What was difficult was knowing my daughter was going to die soon, sooner than I ever dreamed. Millie didn’t know life without SMA, and she never saw herself as different and knew nothing but love. Caring for myself and my daughter was a constant balancing act. I could be no good to her if I wasn’t as healthy as possible. Her care was very time-consuming, as she needed constant supervision, routine medications and a strict schedule. But there was always time for snuggling and dancing. My girl loved it when people danced with her. I never found myself wondering how my daughter would die. That was fairly straightforward. She taught me that being anxious about how the end would come wouldn’t allow me to enjoy the beautiful and delightful little angel that was right in front of me. Amelia Marie died on July 15, 2016 at the age of 3 months and 10 days. I miss her every day, but I have taken so much from my time with her. I focus on my quality of life, comfort, and happiness. Those are the things I chose to focus on for her as well. For the rest of my life, I will grieve the loss of Millie. She gave me a confidence I didn’t have before, a confidence in my own voice, the ability to advocate for myself and my children, and the beauty of cherishing the moment. It may sound cliché, but it has made all the difference. Follow this journey on Confessions of a Girl With Mito We want to hear your story. Become a Mighty contributor here .