Feeding Tube

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Feeding Tube
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Community Voices

18 months later as a tubie

I know it has been a while since I last updated y'all on my progress with living with a GJ tube. It has been an experience! I've had to 9 tube replacements due to my tube moving, twisting and countless clogs. After so many issues, my gastrointestinal surgeon felt that I needed better assistance from the Internal Radiation team or IR for short. With the IR team, instead of the GJ tube being replaced through endoscopy and replace while I am awake but giving something for pain. The first time I had it done, I was very nervous because of knowing I would be awake for it. I was able to watch the team set up the room with the monitors and the x-ray machine over me so they can see where to go. I have a completely different tube than I had from 11 months ago post. The photo above is me now. I can say I have had only 2 clogs with this new tube and it was so easy to unclog with a can of Coke. I'm still adjusting to live with having this GJ tube forever but I'm being patient with myself during the process.
#EhlersDanlosSyndrome #Gastroparesis #GJtube #FeedingTube #LifeasanEDSerwomanofcolor #MastCellActivationDisorder #posturalothostatictachycardiasyndrome

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Genny @genny

Making the Decision for Your Child to Have a Feeding Tube Placed

The Feeding Tube Awareness Foundation estimates that approximately 40% of feeding tube users are children, and there are more than 350 conditions that can require children to need nutritional support via tube feeding. I am thankful for this medical intervention that has helped many children to live, grow, and thrive. For us, the decision to get a feeding tube for June was complicated, and she did not have her feeding tube placed until she was two-and-a-half years old. Looking back, I wish the option of a feeding tube had been presented to us differently. Doctors were worried about June’s lack of weight gain and told us a feeding tube would help. I struggled with the choice to get a feeding tube because it was another thing to “fix,” and I knew it wasn’t the direction we wanted to go, but I never saw it as a first sign that June was dying. It was not until after June had her feeding tube placed that our family was connected with a palliative care physician. It was then that I learned loss of appetite could be the first sign of the body shutting down. I don’t know if that knowledge would have changed anything about our decision to place the feeding tube, but in hindsight, I wish the doctors had been more direct about what a feeding tube meant for June and how appetite and death work together. Parents and caregivers need to be fully informed by their doctors about why an intervention is necessary and any potential unintended side effects. Healthcare professionals shouldn’t assume that we realize the complete picture. After all, we don’t usually have the same medical background and level of knowledge that they do — especially about death and dying in children. In the end, getting June a feeding tube allowed her a little more time to meet her little brother, George. I was newly pregnant when she had the feeding tube placement surgery, and I often wonder if she would have lived long enough to meet him and spend time with him if we hadn’t chosen a feeding tube. No matter where a family is on their feeding tube journey, there are many great resources to help navigate the complexities of feeding tubes. While I love embracing the positive stories surrounding this little medical device, I think it’s equally important to discuss the more complex experiences so that all families have a better idea of what’s at stake.  The Feeding Tube Awareness Foundation has a parent guide on tube feeding written by parents for parents. The Courageous Parents Network has several videos where parents discuss the complexities around feeding tubes in children with life-limiting conditions. Complex Child Magazine has many articles on the subject too. I know the decision to put your child on a feeding tube can be hard. Still, I’m personally thankful we decided to place a feeding tube for our daughter.

Community Voices
Community Voices
Community Voices

I’ve fought 8 long years for health. In that time I’ve been dismissed, let down, told nothing was wrong and left to my own defenses. I’ve suffered from depression and anxiety since I was 32, now 56 I’ve had a total abdominal colectomy with IRA in 2017, failed… only to get an ileostomy with hope for regaining health and weight in 2021. Now at 87 pounds, I’ve lost hope, doctors fail me, no offer of tube feeding or supplemental feeding, I can’t eat without pain, now on pain medication. Still I suffer. I’m at a loss, I’m trying to make each day count, I’m grateful for the life I’ve lived, but I’m not ready to go yet. I’m scared, yet I don’t have the energy to even attempt to go to doctors appointments with any hope, as they continue to fail me. I don’t understand why others are given help and the doctors I see won’t do a thing! I feel like I’ve just been left to wither away and die.

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JenLave @jenlave

Using a Central Line and Feeding Tubes to Treat Gastroparesis

Here I am, lying in a hospital bed in a small room with the smell of stale chicken and vegetable broth circulating through the air. I hear the sounds of rolling computer carts, other patients yelling in pain, and nurses and doctors talking amongst themselves about each patient’s care. I feel like I am trapped with no other options, and all I want to do is go outside and smell the fresh air. The gastrointestinal (GI) team visits my room every day telling me that as of right now, it would be best for me to move forward with total parenteral nutrition (TPN) . They say that my body is losing muscle mass, and I cannot move forward with the gastrojejunal (GJ) placement until I have a good source of nutrition. Today is the day I’m admitting to the fact that I’ve exhausted all other options and I am left with one more to keep myself alive. The GI team walks into my room and starts discussing how my nasojejunal (NJ) tube didn’t work. I want to get the conversation over and done with before the dam holding back my tears opens back up. Up until this point, I have refused TPN due to the high risks of infections in people with central lines. Central lines, though, have less risk of infection in TPN, but since I’ve already had sepsis, I am even more prone to developing sepsis again. I jump into the conversation before the doctor continues, and I reply that I know I have tried everything at this point. I say I’ve tried so hard to avoid TPN, but at this point, it’s best that I move forward with it. The relief that came over my doctor’s face as I agreed to TPN is a look I will never forget. Just yesterday, she became emotional as I refused TPN yet again, and she told me I’m “just letting myself waste away.” I heard the lump in the back of her throat and saw the sadness come across her face for a moment while she collected herself, put on her “professional face,” and continued on with the conversation. The two GI doctors then walked out my room to place orders for a powerline tunnel placement. I would begin TPN later that same day. As I told my doctors to move forward with TPN, I felt absolute defeat because I have come to this point. No matter how hard I’ve tried to avoid TPN, I now have to use it. Life is ironic — I was terrified of moving forward with a feeding tube , but now I’m on TPN, which feels even harder. In the weeks after I agreed to TPN, I hooked myself up to 24 hours of continuous TPN every night. I fought the defective tubing every night to make sure there were no streaks of air within the line. I washed my hands and disinfected my cart surface to ensure there was no chance any type of bacteria could possibly transfer to my central line. I pulled out the 3000-milliliter bag of TPN and the vitamins from the fridge so they could sit out for an hour before I hooked myself up. I gathered all the necessary supplies: alcohol wipes, syringes, needles, saline, batteries, and new tubing. I wiped down every access point to my central line with an alcohol swab for well over 20 seconds to protect myself from any chance of getting sepsis. Every night, when I successfully hooked myself up and was finally able to lie down in bed, it was a relief. My gastroparesis was ever-present with one exception: the pain. My pain seemed to have dissipated during those weeks on TPN since I was completely bypassing my entire digestive tract. It was a great relief to not have any pain in my abdomen for once. I eagerly waited for my G-tube to be switched to a GJ tube in the coming weeks. To my surprise, my motility specialist put in an urgent referral for my GJ tube placement. My amazing surgeon was able to fit me in to place my feeding tube as soon as possible. Within three weeks of trying different formulas, I was finally tolerating a peptide through my GJ tube. I was ultimately able to wean off of TPN and have my central line removed from my chest. The interventional radiologist had me breathe in, and when I breathed out, he pulled out my central line. I became overwhelmingly joyful as the line effortlessly left my jugular vein. I lay flat for an hour after having my line removed, elated that I no longer had to worry about a blood infection from my powerline tunnel. TPN is never off the table because of my gastroparesis, and I know it’s more likely than not that I will end up on TPN again, but as of right now I am incredibly grateful for my GJ tube. Even though I had spent years avoiding a feeding tube, I am so happy to have one. I do not see my life moving forward without my feeding tube, as it has already brought me great relief to receive proper nutrition no longer administered through a central line.

Kat L.

Questions Not to Ask Someone With a Gastroparesis Feeding Tube

I’ve been a “tubie” (as the cool kids call it) for about five months now. It’s been an interesting adjustment, and just like any other chronic medical situation, it takes some getting used to. I’ve had to learn to find ways of distracting myself so I don’t crave food. While everyone else is on their third slice of pepperoni lovers pizza, I’m trying to breathe through my mouth so the delicious smell of pizza doesn’t make me cry (since I can’t eat it). While most are sitting down at the table to enjoy dinner or are spending time cooking a meal with their family, I’m filling up my pump bag and starting my afternoon/evening feed. I used to be able to eat a little of whatever my family was eating, but I was recently told to stop that as well because my system isn’t handling solid food very well anymore. There is one question I get asked fairly often that I can honestly say gives me a twinge of anger: “So how much longer do you need to have that tube?” Or, some ask the same question worded another way: “So how much longer until you can eat again?” The answer to this question is both simple and complicated. While I cannot predict what the future holds for my health, I can say that as it currently stands, I’ll likely never be free of the feeding tube. If I am, it will probably be because I’ve transitioned to TPN instead. I’ll likely be limited in what and how much I eat for the rest of my life. This might seem like a perfectly innocuous question, but there are a few reasons why it rubs me the wrong way. For starters, I don’t really know the exact answer to that question, so it’s difficult to answer. It would be like asking a recovering accident victim when they’ll be able to walk again, or asking how long they’ll need their wheelchair. There is no concrete answer for this, and it brings me to my next point; it’s insensitive. Being asked this question is just another reminder that my body feels broken. I would love to be able to eat like a “normal” person, but I can’t. Being asked when I’ll be free of my tube is just pointing out to me that I’ll probably never be able to eat normally again. When I spend most of my day trying to avoid thinking about food and eating, this is definitely not a topic I want to be brought up. The next reason this question is inappropriate is that it insinuates that my quality of life or my worth is somehow diminished by my tube. The fact is, my life is made possible because of my tube. If I didn’t have my tube feeds, I would be quite literally starving to death. My tube feeds enable me to be healthy and have the energy to work and have fun with my children. I’m still at the doctor’s office more than the average person, and I still experience frequent hospital admissions, but I would be wasting away to nothing without my tube, and on my way to an early grave. Maybe people ask me this question because they couldn’t imagine having to deal with this situation if they were in my shoes. I get that; I get that this looks really hard. Fact is, it is. But, I’ve learned (and am still learning) how to make adjustments in order to accommodate the changes I’ve had to make. I’ve had to learn to be strong, even when I feel like I’m about to break. While this might never be a situation that you personally need to deal with, it’s a situation that I’ve learned to live with. You might be asking yourself, “Well, what should I say?” This will vary from person to person, but in my specific case, I would prefer people say nothing. But, if you really want to ask something, I do genuinely appreciate a “Do you need anything?” check-in from time to time. I’ll probably say no 99% of the time when people ask, but I do appreciate the gesture, and every once in a while if I’m in a bad flare-up, I might take someone up on that offer. I just want to be treated like any other average person. I don’t need or want pity. Thanks to the medical interventions that I’ve been blessed with, I’m empowered to live a normal life, and at the end of the day, that’s all that should matter.

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