What Is TPN: Living on Intravenous Nutrition
Did I catch your attention? How do you survive if you don’t eat?
My inability to sustain life by eating is caused by a rare disease that I live with called, Chronic Intestinal Pseudo-Obstruction (CIPO). Having CIPO has resulted in intestinal failure for me because it causes severe dysmotility in the digestive tract which impairs the ability of food, fluid, and air to move through it in the affected length of the digestive system, which in my case is the entire thing.
I am unable to eat enough to survive – my body doesn’t even tolerate tube feeding at a very slow rate because contents in my digestive system just sit there pooling and backing up instead of moving through it like they should. Often this leads to vomiting and I very rarely have days where I am not nauseous, distended, or in pain.
What it comes down to for me personally is that I can eat (It’s not like i’ll explode as soon as I put food in my mouth) but if I do eat I’m severely disabled. Over the past 10 years or so I have had small spans of time where I’ve done a little better and was able to come off TPN for awhile and/or eat more but I’ve never been able to eat enough and sometimes I am unable to take in any calories at all. There are even more days than not where drinking causes symptoms disabling enough that I cannot drink very much at all which is one of the main reasons dehydration is such a big issue for me. This has been an ongoing thing for me since my very first hospitalizations in the first 5 years of my life.
On days that I have been able to consume the amount of calories my body requires it led to a very poor quality of life. Out of the past 10 years I’ve been on TPN for 7 of them for varying lengths of time.
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Table of Contents
I “eat” without using my digestive tract. It sounds as amazing as it is and I am extremely thankful for modern medicine because without it I would be 6 feet under or ashes blowing in the wind… well, you get the point. All joking aside it IS amazing, but it also comes with some very serious risks that include liver failure, bone death, loss of vascular access sites, sepsis, blood clots, and death. TPN is normally only used when there is no other option for nutritional intake because of it’s risks. To be honest it can be quite scary and I wish that this didn’t have to be part of my life; however, there is no point in dwelling on that because TPN has to be a part of my life. I think fear leads to so many negative outcomes which is why I fight my fear with education. Education about TPN has helped me in many ways and I hope to do the same for others by providing it in my advocacy.
TPN is short for Total Parenteral (pah-REN-tur-uhl) Nutrition
T
Total
P
Parenteral
N
Nutrition
Total
The word total is used because it refers to a person receiving all (total) of the calories and nutrients a person requires
Parenteral
The word enteral means within the gut or within the gastrointestinal tract. Enteral Nutrition refers to any method of feeding that uses the gastrointestinal tract. This would be how most people feed themselves (oral intake) or even receiving nutrition from a feeding tube since the feeding tube delivers nutrition directly into the digestive tract. Parenteral (Par + Enteral) means receiving nutrition without using the digestive tract
Nutrition
Nourishment (energy) that is required for the repair, growth, and maintenance of the body
TOTAL + PARENTERAL + NUTRITION =
A method of getting all or most of the calories and nutrients you need into the body administered through a vein.
You may hear intravenous nutrition being referred to in other ways: TPN may also be called PN, PPN, HPN, AN (Artificial Nutrition), and Hyperalimentation. According to the Oley Foundation some clinicians no longer like to refer to it as TPN (I do because it’s habit and most commonly known this way) but rather just PN because although life sustaining the solution does not contain all (total) of the nutrients present in our diets. Another reason some people no longer refer to parenteral nutrition as “total” PN is because for many people it is not their sole way of taking in nutrition as some may be able to take some food by mouth or may also be tube fed in addition to parenteral nutrition.
PN: Just drop the T off of TPN and you’ve got PN: Parenteral Nutrition! PN means receiving nutrition not by eating but through another means. PN can be used to describe anyone who is on intravenous nutrition – totally, partially, at home or in the hospital.
PPN: PPN stands for Partial Parenteral Nutrition. PPN is used to describe people who only receive part of their nutrition intravenously but are also able to take some food by mouth or through a feeding tube.
HPN: HPN stands for Home Parenteral Nutrition. This describes people who use parenteral nutrition at home, like myself. There are people who are put on PN temporarily during a hospitalization but for those who need intravenous nutrition long-term they have to go home on it. The Oley Foundation says, We want to acknowledge that the situations so many face when they have PN at home, vs. in the hospital, can be very different. We also hope to convey the very important message that people are living their lives at home on PN, and that if PN is a necessary part of your present and future, there are resources available to help you.
The bag to the left is one of mine that contains lipids. The lipids in the solution are what give it the white color and makes it look like a bag of milk. Fun fact: I use SMOF lipids instead of intralipid and was the first TPN patient at University of Chicago to do so.
Above is one of my TPN bags that does not have lipids in it. The bag gets it’s yellow color from some of the vitamins that I have to inject into it before starting my infusion. I do 5 days a week with bags that contain lipids and 2 days a week with bags without lipids.
Update 2/14/18: My script just changed to 3 days with lipids and 4 days without now that I am up to a healthy weight again.
The contents of TPN will vary depending on a persons age, weight, the reason they are on TPN, laboratory results, and other factors. Typically a bag will contain about 2-3L of fluid. TPN solutions generally contain water, dextrose, amino acids, lipids, electrolytes, and trace elements.
A home nurse visits me monthly to draw my blood and based on the results my TPN ingredients change if needed. At first my nurse came once a week, then every other week, and now that my labs have been pretty stable she only visits once a month to draw blood.
Update 10/18/18: I no longer have a home nurse. I now go to a local hospital once a month to have my blood drawn.
My infusions are 12 hours long. This means that I use one bag each day and it infuses over a period of 12 hours so that I have 12 hours on it and 12 hours off in each day. Some people have longer infusions (some people are hooked up all the time with each bag infusing for 24 hours) and some are hooked up for less than 12 hours each day.
The key things needed for an infusion are a central line, the TPN mixture, and a pump.
Ordinarilly (and obviously) people receive nourishment by putting food in their mouths, chewing, swallowing, and from there the food travels through the digestive tract where it gets absorbed through the gut into the bloodstream.
Instead of putting food in my pie hole you’ll see me connected to an IV bag and pump which infuses a solution of carbohydrates, fats, protein, water, vitamins and trace elements into my bloodstream through a port in my chest.
TPN needs to be be administered through a central venous catheter that gets threaded into a large vein that rests directly above the heart. Types of central lines used to receive TPN can be a PICC line, an implanted port, or a tunneled catheter like a Hickman line. I currently have an implanted duel lumen power port but in the past I have been on TPN several times with a PICC line. My port is located on the right side of my chest under my skin.
TPN bags are stored in the refrigerator until a couple hours prior to use so it has time to become room temperature because cold liquid going into the veins makes a person cold! Once ready the TPN IV bag gets injected with vitamins and minerals and then is connected to tubing and a pump that infuses the solution at a controlled rate through my port and into my blood stream.
This is the needle used to access my port. The needle gets poked through my skin in the chest area and enters the port where it rests under my skin. Each week the needle and the dressing that covers it gets changed. A central line requires careful skill to remain sterile in order to avoid life threatening infections. The needle looks worse than it is, it doesn’t really hurt and after awhile the area loses most of it’s feeling from being poked so many times in the same place.
Have you ever tried navigating through your home with an IV pole? Not easy! Especially if your house has multiple floors or carpet. Nope nope nope! The good news is that it’s pretty easy for people on TPN to be mobile if they have a backpack.
I put the IV bag and pump into a backpack so that I can carry it around with me all day and not have to be tied down to an IV pole.
I prefer to do my infusions during the day but most people prefer to infuse during the night when they are sleeping.
This is all a matter of personal preference. I prefer day time because I feel like I am able to use up the energy provided from the calories while I need to be more active rather than letting them all infuse when I sleep. I also infuse during the day because TPN makes you pee A LOT and I don’t like waking up so many times during the night to use the bathroom.
Update 10/18/18: I now have switched back to preferring night time infusions. Both have their pros and cons and I have switched back and forth a few times with what I prefer so that my infusion times work best for me and my life at the current time.
Being on HPN can often feel overwhelming, scary, exhausting, maddening, and sad; especially at first. Each person on parenteral nutrition has their own unique experience with it and some adjust fast and easily and for others that adjustment still hasn’t come. It’s a huge life change not being able to eat anymore but for many patients it can be a welcome relief from the pain and suffering they were experiencing leading up to being put on TPN. A lot of patients struggle for a long time with malnutrition, weight loss, pain, nausea, vomiting, distention, and failed trials of tube feeding leading up to TPN.
It is a huge loss not being able to eat but it’s also a huge relief to let TPN provide you with the nourishment you need while not suffering as much as you were. There are also some children who
were born with illnesses or injuries that affect their digestive tracts and start TPN right away. For them TPN is all they’ve ever known!
For me acceptance hasn’t been linear. I’ve been on TPN sooooo many times throughout my life (twice because of Crohn’s disease and all the rest because of CIPO) with this most recent time looking like it’ll end up being very long term. I do hope that one day I can transition to tube feeding, or partial tube feeding, or even better to eating but that’ll most likely take a miracle as my rare disease has only progressed with time. Truthfully there are many days where I hate TPN. It’s scary, it’s a nuisance, and it takes away the freedom to be spontaneous. Sometimes being connected to the bag and pump ruins with my self-esteem and negative internal dialogue kicks in. There are also many days where I’m thankful for TPN, happy to have it, and feel like a GD superhero for living my life this way. Overall I try not to let it hold me back from most things and I am passionate about showing others tips and tricks to make life on TPN easier. Can you imagine life without food? Yeah… not cool. It’s really difficult! But it is what it is and it helps me have the best quality of life as possible.
Doing HPN requires a lot of responsibility, compliance, and planning. It can be quite a challenge because you can’t just travel on a whim or go somewhere without a plan in place for how you’re going to get, store, and infuse your nutrition. TPN only has a “shelf life” or period of time where it maintains stability so if you plan to take a long vacation you must call your infusion pharmacy to work out a plan on how you’ll get your TPN. One of the downsides of TPN is that it takes away a lot of spontaneity. The good news is that the more you live your life on intravenous nutrition it just becomes normal and not something you dwell on too often.
There are several reasons people may be put on TPN. Some of them include short bowel syndrome, IBD, paralytic ileus, high output fistulas, bowel obstructions, certain motility disorders, chronic diarrhea, injury or trauma to the intestines, or disorders that require complete bowel rest. As a general rule TPN should not be used for patients with intact digestive tracts because compared with enteral nutrition TPN has more complications and does not preserve digestive tract structure or function well.
Some people can and others cannot. Personally eating anything at all, and even drinking, causes me a lot of issues so I feel best if I avoid food and drink. However I do try to take in at least 100-200 calories a day with food because it can help preserve the minimal function left in my digestive tract and also may help prevent bacterial translocation.
That also depends on the person and the reason they are on TPN. Most people on TPN will only be on it temporarily while they recover from injury or illness. Others end up on TPN permanently.
Alright, that’s it for now. I hope that this page helped you to understand Total Parenteral Nutrition better. Let me know if you have any questions in the comments.
Sara
