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crohn's

    TPN and Feeding Tubes
    Chronic IllnessMedical DevicesPICC Line

    TPN and Feeding Tubes

    by Ariela Paulsen December 1, 2021June 21, 2022
    written by Ariela Paulsen

    We often think of eating as an integral part of human existence.  But for many people with GI challenges, eating and drinking may not be the best way to get nutrition.  If you find yourself facing alternative nutritional support, it can feel overwhelming!  There are many resources available, however, and many other people going through the same challenges.  Here are some tips to get you started:

    What is parenteral nutrition?

    Total Parenteral Nutrition (TPN) is when nutrients are given directly into the bloodstream through a long-term intravenous catheter like a PICC (Peripherally Inserted Central Catheter), chest port, Hickman line, etc.  It completely bypasses the digestive system, so it can be a good option when the GI tract needs a rest or isn’t functioning well enough for a feeding tube.  Dieticians and pharmacists work together to determine how much of each nutrient your body needs administered, based on blood tests.  

    More information on PICC lines here.

    Similarly, Peripheral Parenteral Nutrition (PPN) is when nutrients are administered into the bloodstream through an IV, rather than a more permanent PICC line.  This is used when nutrition is only needed for a week or less.

    Parenteral nutrition typically requires a hospital stay.  There, they will give non-stop infusions and monitor fluid balance, electrolytes, liver and kidney function.  Once they are sure things are working properly, TPN can be done at home, usually 10-14 hours each day.  The doctors and nurses will give you clear instructions on how to administer infusions and care for your PICC line, but always feel free to ask questions as they come up. 

    What is enteral nutrition?

    Enteral nutrition is inserting a feeding tube into the GI tract, either at the stomach or small intestine.  Enteral nutrition is less likely to cause infection but is only possible if the GI organs are able to function properly.  It can provide nutrition and also a way to take oral medications if needed.

    What are the different types of feeding tubes?

    Naso tubes are inserted through the nostril. Nasogastric tubes (NG-tubes) go into the stomach and nasoenteric go into the intestines.  There are two types of nasoenteric tubes — nasoduodenal into the first part of the small intestine, and nasojejunal (NJ-tubes) into the second part of the small intestine.  

    Oro tubes are inserted through the mouth.  Orogastric tubes (OGT) go through the mouth into the stomach, and oroenteric into the intestine.

    Oro and naso tubes do not require surgery to place and are typically only used for 4-6 weeks.

    Percutaneous endoscopic gastrostomy (PEG or G-tubes) are inserted through the skin directly into the stomach.  Percutaneous endoscopic jejunostomies (PEJ or J-tubes) go through the skin directly into the small intestine. Tubes that enter through the skin and go through both the stomach and intestine are called percutaneous endoscopic gastro-jejunostomies (PEG-J or G-J tubes). These all require abdominal surgery for placement and are typically used if needed for longer than 4-6 weeks.

    More on types of tubes here.

    https://www.instagram.com/zebratissues/

    How do feeding tubes work?

    Formula is pumped through the tube into the GI tract where it is then digested.  There are many types and brands of formula available, so if you find you are not tolerating what is given to you, ask to try other options.  There are different types of feeding schedules:

    Intermittent feeding is when you get short feedings periodically throughout the day, often at regular meal times.  This is usually used with tubes into the stomach and can also be called bolus feeding. 

    Continuous feeding is given at a steady rate throughout the 24 hour day.  

    Cyclical feeding is done in one continuous session at the same time each day, but at a faster rate so that it takes a shorter amount of time.  When done at night, this may be called nocturnal feeding.  This type of schedule is typically done with intestinal tubes.

    Caring for your tube is important to avoid infection or other complications.  This involves properly administering feeds, pumping the tube with water afterwards, and cleaning the skin around the tube.  A nurse will walk you through the process, but be sure to ask any questions you have if they come up along the way.

    What are some reasons someone might need alternative feeding?

    In order to function properly and heal from illness, injury, or surgery, our bodies need nutrients.  If we are unable to get all of the nutrients we need through food, alternative nutrition can provide those nutrients.  There are many reasons why someone may be unable to gain enough nutrients from eating, including:

    • Cancer 
    • Stroke 
    • Dysphagia (difficulty swallowing)
    • Neurological disorders
    • Injuries to the mouth, throat, etc.
    • Bowel diseases such as Crohn’s disease or short bowel syndrome
    • Stomach disorders such as gastroparesis or MALS
    • Severe eating disorders

    Can I still eat food with TPN or feeding tubes?

    You may still be able to eat or drink small amounts.  This is specific to each case, however, so be sure to talk about it with your medical providers.

    Where can I find support?

    Requiring medical devices can feel isolating! It may help tremendously to simply meet others going through the same thing.  You can search for support groups in your area or on social media.  Mighty Well’s Friends in the Fight facebook group is for anyone living with — or caring for someone with — chronic illness, and does include people using alternative nutrition.  There are TPN/tube-specific groups out there as well.  You may also find that following others on social media who proudly share their experiences with TPN and feeding tubes will bolster your own experience.  There are also wonderful organizations such as the Oley Foundation striving to help people like you through education, advocacy, and networking. 

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We really love this message from @lizandmollie. In We really love this message from @lizandmollie. In fact, we couldn't have said it better ourselves 🤗 Chronic illness is filled with ups and downs and everyday will look a little different. Know that you're doing your best even on the days that you are flaring, in pain or fatigued. Remember that we are here to support you on the good days, the bad days and all the ones in between 💚 
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Going into a medical procedure is always a little Going into a medical procedure is always a little scary. The best way to minimize fear and anxiety is to go in as prepared as you can! If you are feeling nervous for an upcoming PICC line placement procedure, head to our latest blog (link in bio) for some confidence boosting tips so you can feel ready to go! 

📷 Friend in the Fight @zebrajemma loves her PICCPerfect PICC Line Cover. It keeps her PICC line in place without adhesives and is so comfortable 🤗
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We've got your back! Our Mighty Pack is the first We've got your back! Our Mighty Pack is the first medical backpack designed by patients, for patients. Our backpack is perfect for wheelchair users, as it has multiple strap locations to allow for flexibility. Nobody needs to know that you are carrying or wearing your essential medical devices and supplies. As patients ourselves, this is a product that we wish we’d had! 💪💚 Best of all this can be purchased with most FSAs (Flexible Spending Accounts) and HSAs (Health Savings Accounts) Click on the photo to take a look inside the Mighty Pack. 

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One positive that came out of the pandemic was tha One positive that came out of the pandemic was that many of us were able to have flexible working arrangements. As more states lift restrictions, heading back to work after months of working from home can be a huge adjustment for so many of us. Allowing time in our schedules for commuting, brushing up on our social skills, and making sure to have access to our medical supplies are just a few things we need to prepare for.

📸 Mighty Well ambassador @ameliablackwater headed back to the classroom last week and is working on finding a happy balance of working, socializing, and finding time for herself. 

If you've returned to work, what was the hardest part about making the transition back? 
.
.

#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #Autism #WFH #RemoteWork #Telecommute #MightyWellMask #Pandemic
Before you move forward always be sure to check th Before you move forward always be sure to check the price tag 💵
.
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#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #MentalHealth #MentalHealthAwareness #Anxiety #Depression #PTSD
Life is full of uncertainties. But there will alwa Life is full of uncertainties. But there will always be a sunrise after every sunset 🌅

"The only certainty in life is uncertainty. I challenge you to embrace it. Even if it's just for a bit" ~@kali_rarerootedwarrior ☺️

Featuring: The Mighty Pack & Undefeated Hat
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #Gastroparesis #EDS #MastCellDisease
We really love this message from @lizandmollie. In We really love this message from @lizandmollie. In fact, we couldn't have said it better ourselves 🤗 Chronic illness is filled with ups and downs and everyday will look a little different. Know that you're doing your best even on the days that you are flaring, in pain or fatigued. Remember that we are here to support you on the good days, the bad days and all the ones in between 💚 
. 
.
#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #ChronicFatigue #MultipleSclerosis #Lupus #SickleCellAnemia #Endometriosis #POTS
Going into a medical procedure is always a little Going into a medical procedure is always a little scary. The best way to minimize fear and anxiety is to go in as prepared as you can! If you are feeling nervous for an upcoming PICC line placement procedure, head to our latest blog (link in bio) for some confidence boosting tips so you can feel ready to go! 

📷 Friend in the Fight @zebrajemma loves her PICCPerfect PICC Line Cover. It keeps her PICC line in place without adhesives and is so comfortable 🤗
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #IVIG
You can hardly wait to tell everyone what happened You can hardly wait to tell everyone what happened and  suddenly start talking and realize you don't know where the story is going...has this happened to anyone else lately 🙋‍♂️We've been there! Brain fog, perhaps the most universal aspect of illness, is exhausting. Cognitive disorders can be frustrating but take solace in knowing that you are not alone. We've all experienced that foggy feeling 🌫 and although it's not permanent, it can arrive quickly and definitely overstay its welcome. 

Looking for a little help getting the fog to lift? Our Brain Fog Fix Planner is more than just a reminder system. It includes space to track daily symptoms, hydration, thoughts and moments of gratitude amidst the daily challenges and is brought to you with input from our Friends in the Fight® Click the link in our bio to find out more. 
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #BrainFog #ChronicFatigue #CognitiveDisorder
We've got your back! Our Mighty Pack is the first We've got your back! Our Mighty Pack is the first medical backpack designed by patients, for patients. Our backpack is perfect for wheelchair users, as it has multiple strap locations to allow for flexibility. Nobody needs to know that you are carrying or wearing your essential medical devices and supplies. As patients ourselves, this is a product that we wish we’d had! 💪💚 Best of all this can be purchased with most FSAs (Flexible Spending Accounts) and HSAs (Health Savings Accounts) Click on the photo to take a look inside the Mighty Pack. 

📹 We are all smiles over this video of Mighty Well ambassador @rebellious_story & her dog Sherlock 😍
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #Community #Health #Wellness #ButYouDontLookSick #InvisibleIllness #ChronicPain #ChronicIllness #ChronicIllnessWarrior #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #LivingwithChronicIllness #Crohns #InfusionPump #MedicalBackpack #DiabeticLife #Gastroparesis #EnteralNutrition #Wheelchair #Tubefeeding #MedicalSupplies #TubeFed
The school year is quickly coming to a close and w The school year is quickly coming to a close and we wanted to send a Mighty shout out to all the students who worked so hard this year despite the challenges of COVID 🙌 We know that it was a challenging year with limited in-person learning, social distancing, and the requirement of face masks. We are so proud of all of you and you should be too! 💚

📸 Featuring The Mighty Well Mask
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #Pandemic #HomeSchool #Graduation #SocialDistancing
I’m proud to be trans and I’m proud to be disa I’m proud to be trans and I’m proud to be disabled — because you can’t put a boundary on being yourself ~@thedisabledhippie
 
Happy Pride Month to all of our Friends in the Fight in the LBGTQIA+ community 🏳️‍🌈
.
.
#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #Pride #LBGTQ #Transgender #LoveisLove #NonBinary #BiSexual #GayPride #Instalove
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