Why I Continue to Avoid TPN as a Young Gastroparesis and Generalized Dysmotility Patient

I’m about to hit my 3 year mark of being tube fed. I never would have imagined that I would be 21 and fed through a tube in my gut, but it isn’t my last choice as far as alternative nutrition options go.

I’ve been asked and offered many times to go (back) on TPN, or total parenteral nutrition, which is nutrition that goes straight into your veins. This option gives you full nutrition—protein, fats, vitamins, etc—and can be tailored to your exact needs.

Because my intestines and colon are delayed (they don’t process food or feeds at a “normal” rate), I don’t get in enough feeds to meet my calorie goals and I haven’t been able to gain back any weight. My BMI is considered extremely low and some of my doctors would really like me to go back on TPN. For those who don’t know much about TPN and for those who have never had to make the choices I have, I’m going to try to explain to you why I – as well as many of the other girls in the same situation—want to avoid TPN for as long as possible.

Although TPN is complete nutrition, and it probably sounds like a great option to many of you reading, it comes with many risks. TPN requires you to have a central line or a long term IV that goes deep into a large vein and then straight to your heart. These can get infected easily and lead to sepsis, which if not caught in time can be life threatening.

While tube feeding is much more natural and forces your GI tract to at least try to function, TPN leaves the GI tract to shut down completely. For someone with dysmotility (lack of movement), this can mean there is little to no chance of returning to tube feeding or eating if another treatment option becomes available after they start TPN.

TPN also puts you at a higher risk for glucose abnormalities and liver dysfunction. The damage to the liver can be so serious it can cause you to be unable to run TPN or even require a transplant if not caught in time. While on TPN, you are required to do weekly blood work, blood sugar monitoring, and weigh ins. TPN can also cause volume overload, metabolic bone disease, and reactions to lipids (fats) such as nausea, headache, back pain, sweating, and dizziness.

So there are many, many undesired side effects from TPN. But aside from side effects, TPN is scary because for those of us with gastroparesis and intestinal dysmotility, TPN is our last option. To go on TPN means to admit that our intestines are no longer functional enough even just for tube feeds. It means we can’t eat, we can’t tube feed, and we may not return to either.

Yes, some people go on TPN and come off of it able to tube feed or even eat again. Some people only use TPN to supplement their tube feeds or oral intake. Everyone’s case is different and TPN helps so many people live a more “normal” life because it does provide full nutrition; it can boost your energy and help you regain strength and muscle that is lost from malnutrition. TPN saves the lives of many starving patients with gastroparesis and generalized intestinal dysmotility.

That said, it doesn’t make it any less scary. Losing the ability to eat is one of the most confusing and complicated things you can imagine. Going from eating orally to being fed through a tube is one of the strangest and hardest adjustments I’ve had to make, but knowing I could lose the ability to feed even through a tube in my gut is even harder to accept.

TPN is a miracle for so many people, but it is also a nightmare for many of us. It’s what can help us live, but also what can put our lives at risk. I’ve been on TPN before, and I fight my body (and sometimes my doctors) every day not to go back to it. You can’t understand what it’s like to go through this until you’ve been the patient, but I hope that everyone—doctors, nurses, family member, friends—can try to understand how hard it is on the patient to make these decisions and all someone needs during that time is support and love.

My Little Sister

The day my little sister was born, two days after my 4th birthday, was one of the most exciting days ever – okay maybe just the most exciting I’d experienced so far in those four years, but that’s still pretty exciting. 😉 I loved dolls and dress up, so getting a baby to bring home—a real, live baby — was a dream come true!

I practically lived in Laura’s crib. I loved cuddling her and helping mom get her dressed, fed, and bathed. She was super exciting, even though she pretty much just slept, cried, ate, and pooped. (Sorry, Laura 🙂 ) I did, of course, have a little jealousy since I wasn’t the baby any more and I had to share everyone’s attention, but in general I loved the new baby.

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To the point, Laura’s all grown up now and today is her 17th birthday. I can’t believe what an incredible person she has become. If you know Laura, you know she’s full of spunk and passion. One of the things I admire most about Laura is that she is totally confident in who she is. She likes to be appreciated and recognized for what she does, but she doesn’t need approval from others to feel good about who she is. I wish everyone (including myself!) was that comfortable in their own skin. She also has such an incredible view on the world and always stands up for what she knows is right. Whether it is to a friend, a stranger, a teacher, or a parent, Laura always speaks her mind and she does so with great passion and articulation. She is brilliant with words and is strong enough to speak out—something else I, as a huge introvert, greatly admire about my younger sister.

Laura is beautiful both inside and out—she takes kick ass selfies, something I’ve always envied. 🙂 She is also full of compassion and love. Laura has grown up as the younger sister of a “sick kid,” which is an extremely difficult role to play. Since Laura was in middle school, she’s had to watch me be passed from doctor to doctor and grow sicker and sicker all while she is trying to live a normal life. The stress that puts on her is huge, but she handles it with such a great attitude.

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Because of my illness, my needs are often the priority in our family. My parents have to focus a lot of time and energy on me. They spend a lot of time taking me to appointments, helping me with medications and tube feeds, and doing other things that are required because of my health. Although my parents are incredible and juggle having both of us here at home so well, it is still really difficult on Laura. However, you hardly ever hear a negative word about this situation come from her.

Laura was supposed to be the only child left in the house when I graduated from high school 3 years ago, but instead, I got extremely sick (again) half way through my first year of college and had to come home. Since then, I’ve been at home and my illnesses have gotten progressively worse. For Laura, this means she has watched my health deteriorate over the last 4 years while she is just trying to make it through the crazy high school years.

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Laura has traveled to different states with me for doctors appointments, stayed with me countless days while I’ve been inpatient in the hospital, laid with me in bed when I was in too much pain to move, and literally picked me off the floor when I’ve fainted. She also regularly brushes and braids my hair when I’m too weak or tired to do it myself, she (and her boyfriend, Sam) pick me up or drive me places when I can’t drive, she gives me piggy-back rides to help me save my “spoons” (aka energy), and she is always looking out for me and making sure I’m as comfortable and cared for as possible. Laura is one of my biggest advocates and supporters through this crazy journey. She’s always spreading awareness and reminding people of how lucky they are to be able to eat or go to school or work when some people can’t do any of that because of illness. Laura has let this situation shape her into such a wise and mature person and I’m so proud of who she is becoming.

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Being the sister of a sick kid isn’t easy, but Laura is incredible and I’m so lucky to have her. Laura is often greeted with things like, “Hey! How is your sister?” or “Is Rachel feeling any better?” Although Laura knows why people so often ask about me, she struggles during my hard times, too. Being a loved one of someone who is so sick is extremely taxing, so I encourage everyone who knows Laura or anyone else with a sick sibling or child to ask them how they are and express interest in their lives before asking about the other person. Laura has a passion for animal rescue and regularly fosters dogs, she is a great artist and writer, and she loves her criminal justice classes and is looking forward to a career in that field. Laura is so smart and has such a great perspective on things; if you get a chance to have a real conversation with her, definitely take advantage of it.

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I’m so grateful to have Laura as my sister. Although my illness causes us all great stress and worry, it has also brought us closer as a family. Laura has become one of my care takers, my biggest support, and a best friend. Happy birthday, Laura! I love you to pieces!