Our Government is Ableist: How the Covid-19 Vaccine Rollout Proves the Disabled Community is Expendable to America

The original rollout timeline, on December 14th 2020, put chronically ill folks in group 1b.
The current rollout timeline, as of January 23rd 2021, puts chronically ill folks in the second to last grouping: 4.

This pandemic has been hard for everyone. Our way of daily living was flipped upside down because of a deadly virus plaguing the entire world. 2020 introduced wearing masks in public, socially distancing and not seeing friends and family. But for some people, like those of us in the chronic illness community, not much changed besides a befitting anxiety of dying due to something other than our regular illnesses. We’ve been wearing masks in public every flu season for years in an attempt to lower our risk of contracting a hospital admission-inducing sickness. We’ve been socially distancing and not seeing friends and family out of necessity because most often our bodies won’t allow us to do “normal” activities like run to the grocery store, attend a family gathering, or have a night out with friends.

That’s not to say 2020 wasn’t a hard year for us. In fact, I’d selfishly argue that chronically ill people struggled more than the average person. A lot of us had urgently needed medical care postponed, trouble accessing daily medical supplies, less room available in the hospital to be treated for non-covid illnesses and a constant fear of contracting covid-19 and dying from it.

And in the midst of watching the people around us adapt to a world we were already all too familiar with, we found that suddenly things we’d been asking for accessibility wise for years now were magical appearing in the matter of a few short weeks. Disabled and chronically ill folks alike have been fighting to work from home or have telehealth visits for years. But we were told that it was “not possible” or “too difficult”. Yet suddenly, once the mass of able bodied people needed these things, they were offered without hesitation. These accommodations were seen as inconveniences to society and made the disabled community out to be a burden when all along these were simple things to implement. Society is just ableist.

Months later when the vaccine was finally about to be released to the general public, the chronic illness community finally took a breath for the first time in 10 months. We’ve been following the rules, staying home, doing our part, and being as safe as humanly possible since the virus began. In mid December, most states put out a timeline for the vaccine rollout and the community was ecstatic to see we were in the first group (second subset) set to be vaccinated. Finally! The government recognized that chronically ill folks were at high risk for exposure and high risk of death. But that excitement was short lived. Without warning, suddenly states began changing their rollout timeline and the group priorities. Older Americans got bumped up to the top of the list and began getting their vaccines in the beginning of the new year and the chronically ill community was pushed back to the second to last group. With no explanation as to why, Americans with the highest risk due to chronic illnesses became an after thought.

But why are the chronically ill expendable to the United States? Most of us are young and contribute to society. While it may not be in a traditional way like working a 9 to 5, our contributions matter…disabled lives matter. We are not disposable. Our government has made it clear that chronically ill folks are not a priority and that if we die, they have no empathy. The disabled community is the only minority group that anyone can become a part of at any time without warning. Yet we are treated like second class citizens because no one cares about disabled people until they become one of us. A lot of covid survivors are in for a shock, as “long haulers” seem to have chronic health issues and are now seen as a part of the chronic illness community. This should serve as a reminder to never take your health for granted.

While everyone deserves to get the covid vaccine, the people who are most at risk of contracting the virus and dying from it should be at the top of the list. The government seems to have neglected chronically ill Americans once again. It comes as no surprise and it’s a battle we combat every day. We are not strangers to fighting for the bare minimum. Ableism is alive and well in 2021 and unfortunately, due to complete negligence of the U.S. government, some of us won’t be around to continue to see the time when we can get the vaccine.

*please note that the terms chronically ill and disabled are used interchangeably here because the author identifies as both. But not all disabled people are chronically ill and not all chronically ill people are disabled.

A Thanksgiving Gastroparesis Feast

Holidays are hard with an illness like gastroparesis. Not being able to enjoy the yummy spread of food that’s taunting you at the table seems like a cruel joke. After 7 years of hating Thanksgiving, this year I became determined to partake in all the traditional foods I ate growing up.

Before I go any further please let me remind you that these recipes are low FODMAP friendly but that doesn’t mean they’re a guarantee “safe food” for every person with gastroparesis. They are simply foods that may be tolerated by some people. As most of us know, everything is trial and error and varies by each individual. Tailor these recipes to suit you best.

Now onto the feast!

Not Your Grandma’s Mac and Cheese

1 box gluten free rice pasta (my favorite brand is Bionaturae)

2 packets Daiya Cheddar Cheeze Sauce

1/2 cup Daiya Smoked Gouda Style Block (you can use the mozzarella for this if you prefer)

2 tsp salt

2 tsp paprika (if tolerated)

1. Cook pasta according to box instructions but undercook by 2 minutes

2. Strain pasta and stir in the cheese sauce, salt and paprika

3. Scoop the mac and cheese into an oven safe dish and top with shredded smoked gouda

4. Bake at 400° for 20 minutes

Butternut Squash Soup

A tasty premade butternut squash soup option is also available: Imagine Creamy Butternut Squash Soup

2 lbs cubed butternut squash

1 tsp salt

1/4 tsp black pepper (if tolerated)

2 tbsp cooking oil (I like extra virgin olive oil)

2 cups vegetable broth

1 can coconut milk or 13.5 oz of unsweetened almond milk

1. Preheat oven to 425°

2. Put cubed squash on a baking sheet and toss with oil, salt and pepper

3. Roast for 35-40 minutes

4. Transfer squash to soup pot and add broth bringing mixture to a simmer

5. After simmering for 5 minutes, use an immersion blender (or in a countertop blender) until smooth

6. Stir in milk

7. Add more salt if needed

Scalloped Potato Crisp

3 cups unsweetened almond milk

3 lbs russet potatoes thinly sliced with no skin

1 tsp salt

1 tsp black pepper (if tolerated)

6 tbsp Earth Balance butter

9 tbsp gluten free flour

1. Preheat oven to 375° and lightly grease a baking dish

2. Warm the milk in a small sauce pan over medium heat

3. Lay 1/3 of the potato slices over the bottom of the baking dish followed by a sprinkle of salt and pepper. Sprinkle 3 tbsp of flour over the potatoes and top with 2 tbsp of butter cut into small pieces. Repeat all layers two more times.

4. Pour the warm milk over the potatoes until it reaches the top layer and bake for 45-60 minutes or until the milk has turned into a creamy sauce

5. Let the dish sit for 10 minutes before serving

Simple Mashed Potatoes and Gravy

1 lb russet potatoes, peeled and cubed

About 1 cup of almond milk

Salt to taste

2 tbsp Earth Balance butter

1. Place cubed potatoes into a pan and cover completely with water. Bring to a boil and cook until fork tender (about 15 minutes)

2. Drain potatoes, mash and add in butter, salt and just enough milk to make it smooth

5 tbsp Earth Balance butter

5 tbsp rice flour or tapioca flour

4 cups chicken broth

Salt and pepper to taste

1. Melt butter in a medium saucepan over medium heat

2. Add in flour and whisk vigorously until a smooth paste forms. Continue to whisk until it turns into a light beige color (2-3 minutes)

3. While continuing to whisk, slowly add in broth, salt and pepper until thick

Everyone’s Favorite Pumpkin Pie

A tasty premade pie crust option is also available here: Kinnikinnick Pie Crusts (please note this does contain chickpea flour)

1 1/3 cup gluten free flour

1 tsp xanthan gum

1/2 cup Earth Balance butter

1 egg (beaten and mixed with 1 tsp of water)

1/2 cup brown sugar

1/4 cup white sugar

1 tsp cinnamon

1/2 tsp ginger

1/4 tsp nutmeg

1/2 tsp salt

2 large eggs

1 can pumpkin purée

1 tsp vanilla extract

1 cup unsweetened almond milk

1. Mix flour, xanthan gum and salt in a bowl

2. Crumble in butter

3. Add in egg/water mixture and mix dough

4. Chill dough in fridge for 20-30 minutes

5. Roll out pastry dough to .5-1cm thickness and place it in pie dish

6. Preheat oven to 400°

7. Combine brown sugar, white sugar, cinnamon, ginger, nutmeg and salt in a bowl

8. In a separate large bowl, beat your eggs together and add in your sugar mixture

9. Add in pumpkin purée, almond milk and vanilla

10. Mix until smooth and pour filling into pie dish. Bake for 15 minutes at 400° then another 50-60 minutes at 350°

11. Allow to cool completely before serving

I hope you can enjoy some of these twists on holiday favorites this Thanksgiving. Maybe your family can start a new tradition with one of dishes. If not, I hope you can still enjoy a day full of gratitude and nourishment (no matter how you get it). I look forward to sitting at the table this year with a small plate of mac and cheese with my tube feeds running. Happy Thanksgiving!

Must Haves for Tubies (revisited)

When I first became feeding tube dependent, I was totally lost. My doctor put the tube in, wrote me a script for formula and sent me on my way. With no guidance on how to care for my tube and what I might need, I turned to other tubies. Through them I’ve learned a vast amount of knowledge about different products and tips to help make having a feeding tube easier. But now that I’ve had a feeding tube for 4 years, I’ve developed my own preferences for certain brands and I’ve figured out what I use on a daily basis versus what I don’t tend to reach for anymore. Here’s a revised list of my must-haves for tubies:

•tubie pads – Soft, absorbent, cute and unique are my criteria for a great tubie pad. I’ve tried almost every brand out there. While some check a few boxes, only a couple check them all! – try my favorite tubie pads by Turkey Tot Customs and TubieContinued.

•port covers – I didn’t begin to use port connection covers until I got a button tube and realized the connector of the feed line and the extension to my feeding tube didn’t exactly stay in place all the time. After many spills and disconnections, I now swear by them! – try my favorite port connection covers (made by me!) here. Turkey Tot Customs and TubieContinued sells awesome ones as well.

•tubie clips – I pulled my feed line too many times to count. So many times, in fact, that these clips quickly became my favorite invention! I began making them for myself and fellow tubies. I love matching these practical accessories to my tubie pads and port covers – try my favorite tubie clips (made by me!) at Crafting For A Cure Co.

•split gauze – Split gauze is super useful for the days my stoma is extra leaky or when I need to use a thick barrier cream that would stain tubie pads. – split gauze should be provided by your home health supply company but you can get more here on Amazon.

•barrier cream or powder – I prefer powders over creams because they’re less messy and pair with a tubie pad but sometimes a cream is needed to help irritated skin around the stoma. – try a few of my favorites: Stomahesive, Aquaphor and Calmoseptine.

•no rinse stoma cleaning spray- This product is truly a game changer. I used to clean my stoma with bar soap and warm water twice a day in the bathroom but now I can clean it anywhere with a piece of split gauze and this spray. It cleanses and also takes away odor. – try my favorite stoma cleanser here.

•medipore tape – Tape can be so harsh on the skin. The best tape I’ve found is medipore tape. You don’t even need scissors to cut it. It’s perforated, holds well, and removes gently. – medipore tape should be available from your home health supply company but you can get more here.

•wedge pillow or incline bed – I now sleep in an adjustable bed but before that, I used a wedge pillow for years. I still use that same wedge pillow for travel. The wedge pillow is great for feeding at night. – try my favorite wedge pillow here.

•feeding backpack – I personally don’t mind the plain black backpack given to me by home health, but you could always DIY a backpack or buy a converted one online. Using a feed bag allows you to feed on the go and also be more mobile in your own home. – a feed backpack should be provided to you through your home health supply company but you can get a fun one at Taylor Hart Designs.

•extra syringes (if you take a lot of meds via tube) – If you’re like me and take dozens of pills a day, the small allotment of syringes that home health gives you isn’t enough to get you through the month. I dissolve my pills right in the syringe and put the cap back on until it’s time to take the medication. – 60mL syringes should be provided by your home health supply company but you can get more here.

•tegaderm – If your tube is extra leaky and gets your clothes wet or if you’re worried about keeping your stoma dry in stagnant water, Tegaderm is a dressing that keeps leakage in and water out. It’s a great solution for both problems. – try tegaderm waterproof dressing here.

•emergency kit (extra button if available/for straight G or J tubes, syringe, gauze, extension, tape, extra tubie pad, hand sanitizer in a medical bag) – I take an emergency bag with all the extra supplies I may need anywhere I go. You never know when you may need something regarding your tube. Being unprepared is the worst. – try my favorite bag for emergency supplies on the go here.

•granulotion – Going to the doctor to get your granulation tissue burnt off with silver nitrate is inconvenient and painful. A lot of people use a mixture of alum spice and barrier cream to get it to go away at home. Granulotion is a product made specifically for getting rid of granulation tissue in a gentle manner. It’s a great product and a little goes a long way. – try my favorite solution to granulation tissue here.

•cream or powder for yeast infections – Yeast infections can happen around the stoma site. I always keep a powder for athlete’s foot on hand to help with that. It usually clears it up in a few days and I avoid a trip to the doctor and a costly prescription. (Please consult your doctor before trying this) – try my favorite OTC powder used for athlete’s foot here.

•hand sanitizer – Before I do anything regarding my tube, I always sanitize my hands. Hand sanitizer is also helpful for on the go cleaning. – try my favorite rinse free hand cleanser here.

My Top 5 Personal Policies

1. My health comes first- even if that means inconveniencing others.

The most important thing is my health. Neglecting to take care of my body and mind in order to take care of someone else is unhealthy. I should never feel guilty about making sure my health is my top priority. If that means asking for assistance or reminding others of my limitations, I’ll do so.

2. Instead of saying “sorry” I will say “thank you”.

There is a time and place for apologies. But there is no reason to be sorry for simple things like making someone wait a few extra minutes. Instead of saying, “I’m so sorry I’m late!” I’ll say, “thank you for your patience!”

3. I owe people respect and dignity but not my time.

Everybody being should be treated with respect and dignity, but not everyone deserves my time. If someone is bringing negativity or hatred into my life, I don’t owe them an explanation or conversation. I can- and will -simply withdrawal from the situation for my own wellbeing.

4. I won’t hold myself to a strict timeline. It will get done when it gets done.

The laundry can wait an extra day if I’m too tired to get to it today. It will still be there tomorrow. There is no need to beat myself up over not completing things I think I *need* to be doing right away.

5. Saying ‘no’ is okay and I don’t owe anyone an explanation.

I don’t need to say ‘yes’ out of guilt or fear. I can say no and let that be that. Not every decision I make needs to be justified in order to make someone else feel better.

 

Personal policies are a way of setting boundaries as form of self-love. Sometimes it’s easy to feel unsure on how to say no or not engage in things when you feel guilty about doing so. Personal policies ensure that you’re putting yourself first and gives you the confidence to stand behind the things you believe strongly about. This helps eliminate unnecessary anxiety and stress that bogs us down in our day-to-day life. So stop wasting energy on things you genuinely do not care about or things that make you miserable.

Tips And Tricks For Tubies On-The-Go

Any tubie can tell you tube feeds require a Mary Poppins bag of supplies. From formula to pumps, it’s never as simple as pouring your feeds in the bag and being ready to go. It’s a production just to get tube feeds set up for home, but feeding on the go seems like it is in a league of its own! For awhile, I was afraid to leave the house while I was feeding. I was convinced there was no simple way to run my feeds in public. There are so many things that can go awry. But over the years, I’ve learned helpful tips and tricks to make feeding on the go super easy!

First, you’ll need to make sure you have the right supplies. Besides the obvious of setting up the formula in the feed bag and primed in the pump, here are some items that are essential for tubie life on the go:

The Essential Supplies

  1. Feed Backpack

    Your home health company should supply you with the standard black bag to use. It’s simple, sleek, and designed specifically to keep your bag and pump safe.

    But if you want a more personalized or fun option, you can order a customized backpack! These backpacks or purses are converted especially to hold all the necessary equipment for your tube feeds. They come in all different sizes, colors, and patterns.

    If you’re looking for a good quality converted backpack, check out Taylor Hart Designs here.
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  2. Carry-All Bag

    You’ll need something to keep your extra supplies in.

    Feeding in public can come with all sorts of issues like your tube clogging or your stoma leaking. Be prepared for these emergency situations by having a special bag handy (bonus if it fits into your feed backpack!) stocked with all the necessary supplies.

    Personally, I recommend carrying a syringe, tube extension (if needed), and an extra tubie pad or gauze packet.

    Hand sanitizer and tissues are great to throw in the bag as well.

    You can use any zipper carry bag you have already or you can pick up one that is made specifically for tubies by a tubie here.
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  3. Port Cover

    Sometimes the tube and feed line connection isn’t the strongest.

    Even when I feed at night time I wear a port connection cover to make sure I’m not “feeding the bed”. This is extra important if you’re out and about!

    The port cover wraps around the opening of your tube and the connecting portion of the feed line to make sure they stay together. This will prevent spills from ruining your clothes.

    Getting a thinner and fashionable port cover is perfect for on the go.

    If you don’t already have a favorite, check out Little Len Creations here.
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  4. Tubie Clips

    Lastly, but certainly not least you’ll want to consider tubie clips. These tiny devices are multi purposed and I’d recommend getting two.

    One clip can be placed inside your feed backpack to keep your feed line neatly tethered in your bag so no kinks or tangles become an issue. The second clip can be placed on your clothing or on the outside of the backpack to keep your feed line close to your body to avoid getting it pulled or caught on anything.

    You can check out fun and fashionable tubie clips here.

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Now that you have the right supplies, here are some useful tricks I’ve learned over the years:

3 Tubie Tricks Learned From Pain Experiences

  1. Make sure your pump is fully charged!

    If it’s not, make sure to bring along the charger. Nothing is worse than being in the middle of a feed and having your pump die.

    Ideally, before you leave the house your pump should be charged all the way so you don’t have to be tied down next to an outlet, but if that’s not possible or you’ll be out longer than the pump’s battery lasts, bring the charger!

  2. Keep a lukewarm water bottle handy in case you need to flush or unhook.

    Anywhere you go you can probably find access to water, but a clean and safe way is to insert your syringe straight into the bottle. That way you know the water temperature is okay and the container holding the water isn’t dirty. Don’t wait to flush because you don’t have water available! This is the most certain way to end up with a clogged tube and we all know how miserable that is.

  3. Wear a camisole to keep your tubing tight to your body so it doesn’t move.

    I don’t know about you, but there are few things worse than granulation tissue or an irritated stoma. I always make sure to wear a cami to help secure my tube down when I know I’ll be moving a lot.

    It also keeps your feeding tube flat so that it’s less noticeable through your clothing (not that you should be ashamed of your life saving tube! I just know some people aren’t comfortable with stares and questions from strangers so this may be helpful if you’re one of those folks).

I hope these tips and tricks for a tubie on the go are useful for you. Let me know which must-have item on the list was the most helpful for you and which tips you tried! Have your own tips and tricks to add? Leave a comment below!

Crafting For A Cure Co

As I headed home from my GJ feeding tube placement surgery this past November, I remember thinking, “wow, you’d think since I had a feeding tube a few years ago I wouldn’t feel so lost!”. But becoming a tubie is so much more than learning to adjust to the tube protruding from your abdomen. It’s figuring out how to set up feeds, learning how to clean and care for your stoma, and compiling tips and tricks from veteran tubies.

One thing I did remember was feeling better about being tube fed when I was able to make it less medical and more a part of me. My first go as a tubie was in 2014 and there wasn’t much available at the time besides tubie pads. I had a ton…one in every color and pattern. So before I even got my second surgery in 2017 to place a new stoma and tube, I ordered a set of tubie pads from an Etsy shop.

While browsing Etsy, I came across new inventions that looked super promising in helping make tubie life a lot easier. The two products that stuck out the most were port connection covers (to help prevent the tube and feed line from detaching in the middle of a feed) and tubie clips (to help prevent the feed line from getting caught and snagged, painfully pulling on the feeding tube).

I was looking for a new hobby since I’m mostly housebound and sewing always intrigued me. I figured tubie clips would be the perfect place to start! I bought myself a machine and taught myself how to sew. I initially intended on only making a few clips and port connection covers for myself, but I wanted to keep making more. I decided a perfect way for me to enjoy both my hobby and work again would be to open up a new Etsy store.

I decided to create Crafting For A Cure Co. so I could share my creations with others while also giving back. For every accessory that is a sold, a portion of the sale goes directly to the Newbie Tubies project which sends care packages to children and adults alike who are getting feeding tubes for the first time.

Right now, I currently only have tubie clips listed for sale but I can’t wait to add more including: port connection covers, tubie pads, chapstick holders, and other fun accessories designed with chronically ill warriors in mind!

Visit my store here.

 

Tubie Problems (With Solution Suggestions!)

Problem: granulation tissue

Granulation tissue is a pain…literally. You can wear a tubie pad or gauze to protect your stoma, you can load on the barrier cream and change your dressing often, but odds are you’ll end up with GT at some point in your journey as a tubie. Your doctor can treat it with silver nitrate sticks but that burns and requires a trip to the office or hospital.

Solution: alum + Calmoseptine mixture or GranuLotion

Alum is a pickling spice that you can mix with a little water to make a paste. Apply the paste directly to the granulation tissue with a Q-tip and be careful to avoid the healthy skin. Apply gauze over the area and let it do its magic. After 24 hours, it should darken (almost black), shrink, and fall off. Make sure to use Calmoseptine or another barrier cream to sooth the skin in the following days. Repeat steps as necessary.

If a pickling spice sounds a bit too DIY/home remedy for you, try a product like GranuLotion. It’s a topical treatment made specifically to take care of painful granulation tissue. The process is the exact same as the alum + Calmoseptine mixture and the box comes with 5 packets so you have access to multiple applications.

Problem: disconnecting on accident

Disconnecting your fed line from your tube is messy and frustrating, especially if you’re in public or it’s in the middle of the night and you don’t notice. I’m sure every tubie has heard the joke about “feeding the bed” instead of themselves. Tape can do the trick sometimes, but that’s a lot of tape and sometimes it loses its stickiness and slips out of place.

Solution: port covers

An easy solution to disconnecting and making a mess is a fashionable port cover. A port cover encases your tube ports and your line hook ups to keep them snuggly together. The fabric is also absorbent, just in case there somehow is a leak. If you’re super mobile in bed and run night feeds, this is the product for you! It’s also great for when you’re feeding in public and you’re worried about soaking your clothes on accident.

Problem: clogs

Four words every tubie dreads saying… “my tube is clogged!” What do you do when you can’t get anything through your tube? The panic you feel when nothing will budge and a trip to the hospital seems imminent, you will do basically anything to get things moving. No one wants to have a tube replacement due to a nasty clog.

Solution: warm water + sheer strength or Lopez valve

Sometimes a clog is a two-person job. Hold the port of your tube and ask someone to push about 20mls of warm water through your tube with force. I’m talking red-imprint-on-your-hand-from-the-syringe hard. This should “pop” the formula or medicine through the tube. It may hurt a bit but it’s over quickly and doesn’t do any damage to your tube or stomach. Follow up with as much water as you can tolerate to make sure the clog is all the way through. If that doesn’t work, you can request a device from your doctor called a Lopez valve. This valve is specially designed to give you more leverage when pushing down on the syringe. A lot of hospitals use these when you come in with a clog you can’t get out at home. Skip the ER or doctor’s office and get a Lopez valve of your own.

Problem: leaky stoma

Leaky stomas are no fun. Plus, they can lead to granulation tissue. The stoma needs to be kept as dry as possible. Usually doctors send you on your way with gauze pads and instruct you to change it every 12 or so hours. While gauze totally does the job to keep the stoma dry, it’s kind of boring. Why not make the experience a little prettier?

Solution: tubie pads

Tubie pads are not only practicable and reusable but they’re fun! A tubie pad is a small, usually circular, piece of fabric sown together with an absorbent backing that is cut down the middle for easy placement around the tube. This creates a soft barrier between your stoma and the plastic tubing. It can greatly help improve and prevent granulation tissue as well as protect the sensitive skin around the tube. Tubie pads come in all different sizes and can be used on an infant or an adult. There’s also every pattern of fabric you could ever dream of.

Problem: stained tubie pads

Stained tubie pads are frustrating because they’re so cute and you don’t want to ruin them with gross stoma leakage. Over washing tubie pads in the washing machine can be just as damaging as eventually the fabric will wear down.

Solution: double wash-once by hand

The best and most efficient way I’ve discovered to clean my tubie pads is to wash off the discharge right after taking off the pad. Then I either let it soak in water and a little dawn dish soap overnight or I hand wash it gently. After, it gets tossed in a lingerie bag which can be thrown in with your regular wash the next time you do it.

Problem: irritated skin around the stoma

Itchy and raw skin is normal with a feeding tube, especially if you have a long tube that dangles and pulls. A lot of people suggest using diaper rash cream around the stoma to help calm it down. While that works, there is a more effective product out there.

Solution: barrier cream

Calmoseptine is great for the skin. It provides a physical moisture barrier for injured skin. It also acts as a counter-irritant, and temporarily relieves discomfort and itching. On Calmoseptine’s list of uses, it mentions it is a protectant for feeding tube sites.

Problem: catching your feed line on something

Door knobs and the like are the bane of a tubie’s existence. There’s nothing quite as annoying as getting your feed line caught on a knob or handle. You could tape the line down to your body but that’s damaging to the skin. It’s also not exactly comfortable.

Solution: tube clip

Tube clips are small devices that hold your tube line up and closer to your body to prevent lines from becoming twisted, caught up, or snagged on things throughout your feed. It can also guide the line so it can run it along the chest and out the top of a shirt instead of underneath the shirt. Super handy and convenient.

Problem: bumping your tube/stoma

Have small kids? An energetic dog who likes to jump? Are you just plain clumsy (like me)? Sometimes it’s tricky to secure a tube closely to your body or protect a button tube and it’s really easy to bump it. A little padding could save you from painful moments of an irritated stoma.

Solution: tube belt

A tube belt will put your mind at ease as it adds padding around your abdomen and tube to make sure it’s safe when going about daily activities. I personally used a tube belt when I first got my long feeding tube because I wasn’t sure how my puppy would react to it. While she learned to leave my tube alone, the belt provided comfort that she couldn’t directly get at my tube. Tube belts have to be custom made to assure the waist size and pocket for the tube are the correct size.

 

*None of this advice is from a medical professional. Please consult your doctor before attempting any home remedies suggested. These are purely based from personal experience, not medical knowledge*