new feeding tube backpack, tubie pads & tubie clips + a fun day out | gastroparesis week in my life

Hi friends! Back with a week in my life living with my chronic illness gastroparesis and a g/j feeding tube.
I have to admit this vlog isn't my best vlog because I was struggling a lot with symptoms this week. I still wanted to put this out here though to remind you that we all have our bad weeks so it is important to rest, enjoy the little things and to do things that you love when you can.
This week I do a lot of sewing! Sewing new tubie pads and tubie clips for my Etsy shop, as well as some pants and a bag. I also got the cutest new feeding tube backpack since it looks like I will be on continuous tube feedings for awhile. And also in this vlog I have a fun day out where I go thrifting, get some fro yo, french fries and do a little grocery shopping. It was so much fun and I am so glad I got to go out!
I hope you enjoyed the video and don't forget to give it a like and a comment and to subscribe for new videos every Saturday. And as always, don't forget to spread kindness and joy.
Products in this video (affiliate links):
✩My feeding tube backpack: bit.ly/3ghPpxs
✩The green backpack I tried on: bit.ly/3gcNTgi
✩Target 3 tier utility cart: bit.ly/3z69C1P
✩Tube turner: amzn.to/3pwen0j
✩My sewing machine: amzn.to/2TMYVRR
✩My serger: amzn.to/2TBeb3Z
✩Sewing clips: amzn.to/2T5Mhgs
✩Cutting mat and rotary cutter: amzn.to/3iiJ9Z7
✩Bed wedge: amzn.to/3fVEhrj
✩Apple watch band: amzn.to/2RuBWdu
✩My instagram: kenna.krueger
✩For business inquires: [e-mail]
✩My Etsy: www.etsy.com/s...
✩My Etsy instagram: / threadsofkindnessco
Music
✩Music by Fiji Blue - Outside - thmatc.co/?l=C...
✩Music by Fiji Blue - Reasons You Should Care - thmatc.co/?l=6...
✩Music by Fiji Blue - It Takes Two - thmatc.co/?l=C...
#gastroparesis #chronicillness

[@KennaKrueger]

Hi friends! This week was a really rough symptoms week so this video is not my best I am sorry! I still wanted to post it because it shows the reality of chronic illnesses and how some days and weeks are just much harder than others. Thankfully this week was a better week than last but I hope you somewhat enjoy the video anyways! I am wishing you all a beautiful weekend!💚

[@Dulcimerist]

Hoping you feel better soon. Thanks for sharing the update on what you're doing and how you're doing! Hugs!

[@KennaKrueger]

@@Dulcimerist thank you so much!!

[@Suttonkidscorner]

Wow, so two days ago my GI specialist very nonchalantly tells me I have GP and yesterday I found your channel and I watched your whole GP playlist and caught up to your current videos and I’m in awe! Thank you for sharing your journey! My symptoms are different I don’t get the nausea but I get extreme burning in my upper stomach area and bloating and full quickly. It’s been like this on and off for three years and I go next week for an endoscopy and thanks to you I will be asking for that digestion screening thing. But within the last 6months I experience symptoms more frequently now like once a week so I’m anxious to see what my journey will be like. Thank you for your positivity throughout your experience!

[@KennaKrueger]

Welcome to the Gastroparesis family! Not necessarily one you want to be a part of but you are definitely not alone in the journey. Some people with Gastroparesis don’t have nausea and have similar symptoms as you, which are still very not so fun symptoms to deal with consistently. I hope now that you have a diagnosis and that you are getting more tests you will be able to get a good treatment plan that will help manage your symptoms. I am wishing you all the best💚💚

[@Dulcimerist]

I can relate to that. My digestive dysmotility never really caused nausea, but the burning (acid reflux) and bloating were my main symptoms. Since nausea wasn't an issue, the anti-nausea medications they often use to treat gastroparesis never really did much to help. That's why my doctor chose Mestinon (Pyridostigmine), which is an old medication and a new treatment option to treat gastroparesis, chronic constipation, or other digestive motility issues. That medication has helped a lot at greatly reducing my symptoms, as it helps the vagus nerve and the muscles in charge of moving things through the digestive tract. Hoping that your doctors can find something that helps you as well.

[@simpleness123]

You have inspired me! I’ve had gastroparesis for the past two years. Unfortunately mines is very painful and causes me to have fainting spells. Although I’ve managed to keep up proper nutrition without having to get a feeding tube, my whole life has completely changed. I can no longer work or go out much with friends. But since finding your channel, I’ve come to realize how full my life could still be with a chronic illness. I’ve now decided to learn how to sew (my first class is this upcoming week!) and to get into baking just like you! Thank you so much Kenna! I hope you realize how much you touch your followers 💛

[@KennaKrueger]

Oh my goodness😭😭 I can’t put into words how much this comment means to me. I am so sorry to hear that you deal with a lot of pain and fainting and I know how difficult the complete change in life can be to adjust too. I am so happy to hear though that you are starting to realize how full your life can still be! It took me almost 2 years of Gastroparesis to realize that as well. In the past I found myself upset and unable to fully accept things no matter how hard I tried but finding these new hobbies and working on developing a new mindset helped so much. I am so excited for you to learn how to sew!! It is so much fun and you can create so so many things. And baking too is one of my top favorite things so I am so excited for you to get into that! You are so welcome and you are so sweet for saying that but I also hope you realize how much you all inspire me!

[@Dulcimerist]

Sorry you're experiencing that. I have similar digestive motility issues, as well as fainting. The two can sometimes pop up together under the umbrella of dysautonomia - especially if the vagus nerve has issues. Thankfully there are medications available like Mestinon (Pyridostigmine) which can treat both issues in certain people, since it helps the vagus nerve and parasympathetic nervous system. Have your fainting spells been officially diagnosed as postural orthostatic tachycardia syndrome (POTS), neurally mediated hypotension, or orthostatic hypotension/intolerance?

[@simpleness123]

@@Dulcimerist thank you for the reply! I’m so sorry to hear that. Being sick is no fun but it’s good knowing that there’s a community out there where we can all support and encourage each other! Unfortunately all of the doctors I’ve seen (and there’s been plenty), have concluded that it’s from malnutrition. I have an upcoming appointment with a new gastroenterologist-I’ll be sure to bring up those points you made and see what he thinks about those!

[@artemisaeris2454]

I know what medication your trying again cause my doctor made me try the same haha yeah it's icky, ended up stopping mine too cause i couldn't stay awake. I know a lot of us go through the same motions of trying to eat and be normal again and it going the exact opposite of what we want. I'm very guilty of it. Not being able to eat by mouth is hard, but keep going. You're inspiring so many of us to keep going! Thanks for the wonderful video! Looking forward to the next one!

[@KennaKrueger]

It made me feel so weird I hated it! And I definitely push my stomach too hard sometimes but honestly I never know how it’s going to react so sometimes it could be completely fine😂 thank you so much for your kind words and for supporting me. It keeps me going!

[@artemisaeris2454]

@@KennaKrueger Yeah, that medication has too many terrible side effects. And anytime! We're all in this together!

[@KennaKrueger]

I’ve heard of some other pretty scary side effects it can cause too and yes we are all in this together!

[@Dulcimerist]

Was it a dopamine antagonist? Those can be nasty. I've had adverse reactions to those types of medications. Have they tried you on Mestinon (Pyridostigmine) to treat your digestive motility issues yet? It's an older medication that researchers at Mayo Clinic and other research centers have repurposed to treat gastroparesis and chronic constipation. It's the only medication that has helped my digestive dysmotility. I'm curious to hear how others have done on it.

[@makenziekersten9593]

I watch your videos everyday while I clean my tube site as a distraction so I don’t faint lmfao 💗

[@goombakisses7398]

Feel better. Take care of yourself. Thanks for being such an inspiration.

[@KennaKrueger]

Thank you so much you are too kind!

[@Dulcimerist]

Are you able to create tubie pads that look like cute snails? They're the symbol/mascot for gastroparesis and related digestive motility issues. Since tubie pads are already round, they're already in the shape of a snail shell. Even just a snail shell design would be a cute tubie pad. :)

[@natreallyintoit]

Was the medication Reglan? I only tried it once and after that I said never again 😩. I love how your bag turned out it’s giving me very fall vibes with the plaid fabric. Also, very random but that shiny lilac fabric you got reminded me of the dress from the Lizzie McGuire movie 😂.

[@kirsxc]

I've been so put off Reglan after doctors saying it can worsen/cause tachycardia - I already have POTS haha

[@artemisaeris2454]

Reglan also is not meant to be taken for more than 6 weeks cause it causes irreversible neurological conditions, but there's only 2 other replacement meds and 1 you have to get from Canada

[@KennaKrueger]

No it wasn’t! It was actually Mirtazapine. It is supposed to help relax the stomach and increase your appetite and for some it does but for me it gave me really bad side effects, but I also seem to be sensitive to medication side effects! And thank you so much I am excited to use the bag in the fall!

[@natreallyintoit]

@@KennaKrueger Oh I’ve taken that one too and it also gave me side effects. I think I might also be sensitive to medication side effects.

[@natreallyintoit]

@@artemisaeris2454 I only took it for 2 days thankfully but yes I heard afterwards that it can cause serious permanent effects. It kinda makes you wonder why a medication that causes so many bad effects is approved here in the US but other medications with less serious side effects that are approved in other countries haven’t been approved or submitted for approval to the FDA.

[@goombakisses7398]

Love how excited you got over making that bag. Too cute. Gonna have you sew all my clothes instead of buying them. Hah! Good job girl !

[@KennaKrueger]

Aww thank you!!

[@zarakellahan5356]

obsesed with your chanel

[@KennaKrueger]

Thank you so so much!!

[@estelanavalenzuela311]

You got a new subscriber

[@austindude1333]

I have had a life of strife dealing with constant chronic joint pain. and last year I was diagnosed with Gp after months of trial and error and living like this.. It's unbearable I feel like life is pointless. I can't live like a person. I have serious thoughts of suicide in my worst moments. The pain is impossible to deal with. the vomiting is constant. the anti-emetics do nothing. Nothing helps and I feel like my time is running out. The vomit has eroded my teeth enamel and stained them. I don't know how to cope my whole life I tried being the best man I could be but I can't do anything. I'd rather die than live like this. I would give anything to live normally but I've never had the luxury. I hope anyone who has this condition can find something to latch on to because if I didn't have my goddaughter I would have nothing to fight for. This will take everything out of you. It's taken everything from me.

[@loislaine2762]

The new backpack is cute! You guys had lots of great finds this week. I understand wanting to eat again. I am not on a feeding tube, but the things I can manage are all liquid nutrition drinks that taste awful. I just want real food again too.

[@KennaKrueger]

Thank you and yes we did! Prior to my feeding tube I had a lot of those liquid nutrition drinks that were awful as well. It is definitely frustrating not being able to eat real food!

[@NayUpliftingOthers]

Hey Kenna! My boyfriend and I have been watching you for a few months now. He was recently diagnosed with gastroparesis and your videos truly help us. You’re just a ray of sunshine. 🥰❤️ Thank you.

[@KennaKrueger]

Aww thank you so so much. It is so awesome of you to be so involved in your boyfriends condition that probably means so much to him! I hope he is doing okay!💚

[@StarvingFoodie]

Hi, I just got diagnosed with Gastropearesis, sma syndrome, and pots! I am just so jumbled in my head about everything! Any thing I need to know starting out?! I am so scared!

[@KennaKrueger]

Oh my goodness that is a lot all at once it is totally okay to be scared and overwhelmed! I can only personally speak on Gastroparesis because I don’t have experience with the others. Gastroparesis is very unpredictable so that is usually a huge adjustment. Do your best to figure out what foods your body tolerates best. I would suggest starting with the “standard” Gastroparesis diet to get ideas on what your body might like better but ultimately just eat the foods that will fuel your body with out doing too much harm to you! Be open to medications but also don’t feel obligated to take certain ones. Do some research on what other remedies may help ease your daily symptoms as well and make sure you are with a doctor who fully understands these conditions and the variety of treatment options that are available for them. I hope this helps a bit!

[@Dulcimerist]

Sorry you have those. I have POTS and gastroparesis and several other issues, which are caused by hypermobile type Ehlers Danlos syndrome (hEDS). It's a group of 13 connective tissue disorders under the EDS grouping that affects collagen; and is related to other collagen disorders like Marfan syndrome, Loeys-Dietz syndrome, and Stickler syndrome. Have they referred you to a rheumatologist to get screened for those? Unsure if it would help you, but my doctor put me on Mestinon (Pyridostigmine) to treat my gastroparesis and POTS, since this medication has emerged as an effective treatment for both conditions in certain people. In any case, there are quite a few treatment options available, and finding a team of good doctors who stay up to date on the latest treatment options and communicate well with one another to provide you the best possible care will be a huge help for you. Just know that you're not alone!

[@mariablair8955]

Hi Kenna! I'm sorry you had a bad week, but even then, you always stay positive. I admire that. Praying for healing as always and for science to look into this illness and find ways to cure it and give better treatments while we wait for that day. Sendind love ❤🙏🌻

[@KennaKrueger]

Hi! Thank you so much for your kind words! I appreciate your prayers and I am hoping for all of that too! Sending love to you too!💚

[@mymax43]

I am a Tubie too. So, I watched your videos to get more information about being a Tubie. Question: how long have you had your tube?

[@KennaKrueger]

I've had mine since February of this year!

[@kristiericson1365]

If I need to have the tube feedings, can I request a pattern for Tubi pads? I absolutely love roses!

[@KennaKrueger]

Ooo yes I am sure I will be able to find a lovey rose pattern. If you get one just let me know!

[@ingrid4237]

What did you use on the backside of the tubie pads?

[@kristiericson1365]

I need those clips you use for sewing! Where did you get them?

[@KennaKrueger]

Amazon! I would definitely recommend them they are so much easier than pins!

[@kristiericson1365]

Question…. Do you get nauseous every time you eat orally? Is that why you have your feeding tube? I’m always nauseous, bloated, and hurting. So far, my gi dr wants me to try working on my diet. I don’t know what more I can do to switch up my diet. It scares me to have tube feedings. Does it completely calm the symptoms?

[@KennaKrueger]

Yes I do! And that symptom plus all of the other symptoms is essentially the reason I got it. Those symptoms ended up being so severe even after diet changes, multiple medication trials and surgery that I couldn’t maintain my weight, nutrition or hydration so I needed a feeding tube. I am lucky enough to still be able to eat some by mouth, not enough to sustain, but I like working on eating by mouth every day despite the symptoms because I eventually want to get off of my feeding tube and be able to eat a wider variety of food. Your stomach is a muscle so if you don’t use it you lose it so I like try to keep as much function as possible. If diet changes aren’t enough, ask your doctor about certain medications! Promotility medication can be so helpful. Tube feedings are definitely scary and not really that fun but it helps me maintain my nutrition. And for me personally no it doesn’t completely calm the symptoms. I am also told I have slow intestinal motility, so I often get bloating, fullness and discomfort from my feeds as well but not to the severity of my symptoms I get after eating by mouth. But if you don’t have dysmotility of your intestines you may have a different outcome!

[@billdoty6438]

It was a fine video.You make it fine with your bubbly personality. You don’t have to film on your bad days, but thanks for always keeping it real, because we can probably all relate because our lives aren’t perfect either. Your doing something right because your subscribers keep going up up up👏 Pretty soon you’ll have to make 200 pancakes 🥞

[@KennaKrueger]

Thank you so much I really appreciate it!

[@annamarschall6910]

Keep it up girl you got this

[@KennaKrueger]

Thank you so much!

[@HomePotato22]

We totally have the same dining table and chairs!! I’ve also been looking for the same round mirror. 😂 We have such similar decor style! Where did you get the rug under the dining table?

[@KennaKrueger]

Omg no way! And the round mirror we got from home goods and the rug I believe from rugs usa!

[@meghanpettit4913]

The bloat after a single popsicle is relatable 🥴🥴

[@KennaKrueger]

It’s so crazy to me that sometimes our bodies can’t even handle a popsicle haha

[@alyssawssinging4039]

Hey cute backpack

[@KennaKrueger]

Thank you!

[@alyssawssinging4039]

@@KennaKrueger you’re welcome 💙

[@DevilDove69]

You’re gonna love that book and then do like a movie night and watch the movie fantastic I love them I can already tell you’re gonna love him he’s right he’s totally right

[@KennaKrueger]

Aww I cant wait to read it!

[@larissabowen33]

Could you try taking just a dose? Your body just might be more sensitive than most people to it.

[@KennaKrueger]

I even tried taking half the dose as suggested by my doctor to ease into it but it was still too much. It made me feel really really bad like it did last time so I personally don’t think this medication is for me!

[@larissabowen33]

@@KennaKrueger Don't give up.Theres lots of other meds and therapies. Im lucky to be in a "remission" and it happened out of the blue. The best advice my doctor gave me was to eat at least one little thing a day to keep my stomach moving so I don't loss it all together. Im belessed to be able to eat but I still struggle most day and I cold flare at any time. Just keep fighting we can do this. Im jealous of your outlook on life and how much you still do.

[@KennaKrueger]

@@larissabowen33 I am definitely not giving up! I know there will be a remission in my future I just have to wait and fight for it! And yes I totally agree, I try to eat at least 2 things a day as well for the exact same reason. I am sorry to hear you are still struggling but you are right we are in this together! It took me awhile to develop this outlook on life and realize how much I could do but once I did those things I’ve been the happiest I’ve ever been which has truly changed me!