FEEDING TUBE & CHRONIC ILLNESS NIGHT ROUTINE
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- Опубликовано: 2 авг 2024
- Hi friends! In today's video i show you what my night looks like as someone with chronic illnesses (gastroparesis, postural orthostatic tachycardia syndrome and ehlers danlos syndrome) and a g/j feeding tube.
I hope you enjoyed the video and don't forget to give this video 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):
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✩Fanny pack: amzn.to/3WptesT
✩Face wash: amzn.to/3WoVdbR
✩My website: threadsofkindnessco.com
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Music
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#chronicillness #gastroparesis
Yes! I thought I was the only one. I have struggled with it ever since I could remember, and thought I was overreacting. Every time I go above ground, it makes my POTS moody. I get lightheaded, dizzy, blurry vision, lost of balance, nauseous, and brain fog. I have fallen at college. Hotel rooms, two store homes, clinics, malls, and hospitals are super hard places. Flying on an airplane is like torture for my heart. Salt, water, and electrolytes do not help unfortunately, but a wheelchair has helped. It makes it easier to go above ground level without the “side effects” being so bad. After my feeding tube placement last month, my parents purchased a shower chair for me. It has helped with the blood pooling, tiredness, weakness, dizziness, and lightheadedness from taking showers. Thank you for your videos. They are super helpful and reliable
Those Christmas lights are amazing!!
They really were!
POTS and the stairs! Ugh! My favorite place to pass out!
Raising your arms activates your pots because your heart has to work hard to pump the blood to them bc they are further away.
Soaking your piercing in a cup of salt for 5-10 minutes 1-2 times a day helped me a lot.
Use non iodized sea salt. 1/8 cup of salt in 4 oz of water or 1/4 cup in an 8 oz cup.
My mom is a dental hygienist and my uncles are both dentists, and I have TMJ and trigeminal neuralgia because of my EDS. They say hot compresses alternating with cold packs help with the soreness and pain, and if you can I would recommend getting fitted for a night guard!
I love videos like this! They remind me (as someone with executive dysfunction) to actually keep a night routine.
Aw yay I’m happy to hear that!
Hi Kenna! I have POTS, and yes going up stairs or any incline is a major trigger for POTS! I live in a two-story home, and whenever I go up the stairs my heart rate goes high and I get shaky and dizzy for a bit. And I feel you on the showering, too, although for me that’s gotten way better since I started intaking a huge amount of sodium eat day, per doctor’s orders.
Thanks for sharing your routine!
That is so interesting! I may have to talk to my doctor to see if I should I take my sodium a bit!
I got my gj tube today, got diagnosed with gastroparesis last week. I really enjoy watching your videos your actually my favorite to watch on TikTok and yt!
I hope you heal quickly!!
@@KennaKrueger thank you sm! it means a lot
Super helpful, tube feeds are in sight. I picked up the wedge pillow..my daughter is currently sleeping on a homemade wedge..TY ♥️🙏🏽
The wedge is a lifesaver!
Love this!!!! :)
🤍🤍
I just wanted to say you inspired me to add “read 20 books” to my 2023 resolutions. I would love a book review/recommendation video of all the books you read this year😊 and yess omg showering with POTS is a struggle!! My legs will even turn purple sometimes. I feel like the stairs thing is more about the physical exertion than the elevation, bc once I am upstairs it subsides
aww yay!! And showering or really doing anything with pots can be an adventure😅
Those lights were amazing! I never dry my hair for the same reason. Your cats are so cute.
They were so amazing!
I LOVE PHO SO MUCH!! im so glad you’re able to eat it! and omg yes going upstairs makes me sooo lightheaded. what also sucks is getting lightheaded makes me even more nauseous which sucks on a really bad stomach day. and im also glad im not the only person who turns very red after a shower. showers suck the life out of me cuz of my pots and i walk out of them looking like a lobster lmao. thank you for showing us your night routine, i always enjoy watching them :) ❤
It’s so good! Def wish I could have some of the vegetables and meat with it but glad I can still enjoy the noodles and broth! And yes the lightheadedness can make me so queasy and the showers are definitely exhausting!
😂Joesph when you said about not seeing the shower. I just love him. He makes me lol every video. About the blow drying your hair. I been married 15 years now and my hubby started doing mine. He loves doing it and I love being spoiled. I got to where I wouldn’t wash my hair because it never dries and blowing it dry was too much. About the salt packets, I turn red after shower or most tiring activities. Never did the salt packet thing. Interesting! See…you teach us what to ask our docs and show us we are not alone. It might be normal for some of us. Yay!
Aww that’s so sweet and Joseph loves blow drying my hair for me too!
What a great video to help others know what it’s like to have all these things. About the POTS thing. I still can not climb up and even happens when driving sometimes. I always yell at others to get away from the edge. LOL it’s only me feeling it. I lived in Colorado and was always hyperventilating and had such horrible virtigo. So we moved out of state. That Christmas house omg! Where was that?
Okay yes it seems like it is a common thing for people with pots I just never really heard anyone talk about it! I was just talking to Joseph about what it would be like for me in a state like Colorado or Utah since my body seems to react negatively to elevation! I guess I’ll have to test that one day😅 and the house was in the winter park area!
Those lights are amazing. I could spend hours looking at them.
Your tree looks really pretty.
Thank you for showing us how a feeding tube works. I found it really useful.
After you had your tube were you shown a video on how to set it up etc or did the nurses show you? For me, I would need something like this.
Also, how do you cope with a feeding tube if you suffer from insomnia?
I hate having Gastroparesis, it’s awful. I have a bad migraine at the moment because I managed some gravy yesterday & then ate a couple of pieces of fudge a few hours later & also had a few Haribos. I definitely can’t do little & often.
I’ve bought some pigs in blankets for Christmas Day & I’m hoping I’ll be ok afterwards.
i could too! And the very first time i had a feeding tube yes they did show me how to set it up! I personally don't really struggle with insomnia so i don't have any tips for that unfortunately! Gastroparesis is definitely rough I am sorry you have been having a hard time recently!
❤️❤️❤️❤️
Yes walking anywhere does that and it definitely get worse when I go up stairs.
Interesting!
Hi! I have POTS and yes, for me going up a floor in a lift like if I am at a shopping centre makes me feel really light headed and faint-y… 😅
that is so interesting! I feel like i don't hear about that symptom that much!
Hey Kenna, that house was awesome. Thank you for sharing! Yes, I have noticed that when there’s elevation changes, I get lightheaded and dizzy. Once at a concert I thought the floor was moving (best way I can describe it) and the whole thing was going to collapse. Turns out I was the only one who felt that, lol. Thank you for sharing the products you use. I’m going to get them and give them a try. I had a piercing that wouldn’t heal and I ended up doing a warm sea salt soak 1x a day for 10-15 minutes (however long I could tolerate the head tilt), along with the saline spray cleans 2x a day…never turned the earring. It helped it so much and my piercing finally healed. It may work for you. Good luck!
The floor moving is exactly how I felt! It felt like it was swaying!! I totally thought everyone else felt it too lol. I may have to try the sea salt soak as I do the saline 2x a day and don’t turn it at all and it’s still having a difficult time healing! Thank you for letting me know!
@@KennaKrueger I’m so happy to hear I’m not the only one that gets that feeling. I hope the sea salt soak works for you. What I did was add water and organic sea salt to a coffee mug (approx 2 tsps of salt), then heat it up in the microwave to make it warm enough to tolerate, sit with my head tilted & ear piercing in it for 10-15 minutes and when I was done, immediately rinse it off (the salt will dry your skin if not rinsed off), gently pat dry. I also did the saline cleanse one time in the morning, sea salt soak mid day and then saline cleanse at night. You’ll have to keep me posted on how it’s doing. Good luck!
Question for you: I am having a little bit of pain at my tube site and when I did my cleaning I saw that there was a little bit of bleeding and what appears to be like a new cut, has this happened to you? I’m curious to see if this is normal? I am scheduled to see my dr Thursday and am hoping I don’t need to try to get in sooner. Thx.
thank you so much for sharing! I haven't really seen anything that looks like a new cut no! The only bleeding i have had in the past was related to my abscess. Hopefully it doesn't get worse but definitely be sure to bring it up to your doctor when you go see them!
@@KennaKrueger thank you so much for replying. I will definitely bring it up to the doctor. Merry Christmas, Happy New Year, Happy Holidays!!! 🎄🎅🤶
Merry Christmas and happy new year to you as well!
Thank you!! I gave my friends and family your stickers in their holiday cards this year!!! Big hit!! Do you ever do any formal exercise or it;s too challenging? Also I am wondering if you'd ever do or know any content about eating disorders in the tube feeding community. Happy holidays,
aw that makes me so happy! And at this time i don't do any formal exercise as i find it extremely tiring on my body. i definitely feel like i should slowly work up to more formal exercise though! As for your last question I don't think I would be the best person for that to be honest. I am somehow fortunate enough to have not struggled with eating disorders. I want to leave that content to the people who have been through it because their experiences are more raw and real as they have been through it and I think they would offer great advice and education on going through that experience. I definitely do think it needs more awareness though as I know that even if you didn't have an eating disorder prior to gi issues, gi issues themselves can also cause eating disorders.
@@KennaKrueger thanks for your reply. I completely get it about physical exercise! I will see what content out there I can find in the ED realm, and I wish you very happy holidays!
Hi Kenna 🤗, I to have POTS and I've been noticing lately as the weather here in Perth heats uo ( between 30 and 40 degrees Celsius) my POTS has a field day, as my husband Laurence and daughter Jennifer Kember refers to it). WOW !!!!!! 😲😁😂 look at all those amazing orders you got, and in so little time. You are doing amazingly beautiful AWESOME and wonderful things in peoples lives. I love love LOVE watching your vlogs, they cheer me up no end, especially on the really hard days. I also think it is SUPER CUTE (as Joseph) would say that he pops in and out of your vlogs. He has now turned it into a game for me, instead of Where's Wally we have Where's Joseph. Does any body else play that game? Or think it's super sweet that he just pops in?. And or course all the lovely things he does for you, you really are a match made in heaven. Just like Laurence and I, who met when we 14yrs old and married at 20yrs old and recently had our 27th wedding anniversary seriously where does all the time go. I'm so sorry this is a longer comment, but I really do think of you as a friend. Not just someone behind the camera. Oh oh ! Laurences jaw used to pop out all the time when we were younger and he used to visit the Chiropractor. Not saying you have to do tat, your body is yours. Anywho I'd better go now and get some housework done or I'll be here all day. Sending both Joseph and yourself LOTS OF LOVE Hugs and prayers. And Merry Christmas to you both. Love from Karalyn Laurette from Perth Western Australia 🌲🌲🌻🥀🌾🌷🐈🐱🐨🐝🐞🦋🌹🎁🎁🎁🎁🎄🎁🎁🎁🎁🎊🎉🎍 P.S Do you and Joseph have a P.O Box number? Asmy daughter who has special needs and myself would dearly love to send you both something.
thank you so so much you are seriously too kind! you and your husband sound like such a cute couple! sending you so much love and merry christmas to you as well! And we do have a po box!
The address for it is
Makenna Krueger
3564 Avalon Park East Blvd
Ste 1 #164
Orlando, Fl 32828
Yeah, showers are a workout but I have kind of system now. So I have a shower chair in the tub, but you can also get shower stools as well. And I always make sure to have a drink with salt or electrolytes in before I go in the shower. I also have a grab bar on the side of my tub as well for safety. Oh and sometimes after I shower I either break out into a hot or cold sweat, so I always make sure there’s a glass of ice water or an ice pack on my bedside table and a heating pad/electric blanket. Oh and if my legs get really red like yours do, I wear compression socks to bed. Haven’t found a brand if compression socks I like yet, anyone have suggestions? But yeah, POTS suck and I totally understand your thing with the stairs too.
that sounds like such a great system! I don't have a brand of compression socks i recommend as i need to get better about wearing them😭
@@KennaKrueger Yeah, I also got lucky and was able to find my shower chair and grab bar secondhand. I was super hesitant to use them at first, but they’ve prevented a lot of falls and accidents. I also wish compression socks came in fun colours. All I have found in my area are black, white and grey, probably have to go online, lol.
i havre somthing simialer to pots if i run or climb up the stairs to fast i feel like im going to faint as well as i get super dizzy
I currently have an abcess around one of my tubes so I'm going to try out your tube care and see if it help. I use the barrier wipe for my picc line but never thought about putting it around my stomas.
hopefully it helps but if you have an abscess you should also talk to your doctor because you may need further treatment!
@@KennaKrueger My doctor does now about it already. It's draining on it's own so for now she's not worried about it.
i'm glad! Definitely keep a close eye on it though to make sure it doesn't get infected!
@@KennaKrueger Ive been putting antibiotic cream on it every night and Im definitetely watching it close. After being septic from my central line I don't play around with infections!
okay yay good!!
Hi Im Nicholas and I have the same gi issue its so bad same problems with my doctors same test no result i cant do this anymore my wife and 4 little children see me suffer everyday i dont have it in me to continue this please what surgery did you get done to help you please let me know thanks
Can you go swimming or will water get in the stoma around your tube?
Wait none of my piercings heal either 😂😂 gotta love hEDS
the worst😒
Holy crap, I literally have had 4 nose piercings reject and I had to get my ears pierced 6 times before they took. Guess this is just one more thing that I didn't know was caused by my EDS
Salam, I am from Morocco, I am married, I have a child, I have intestinal paralysis, I visited more than one doctor and I did not find it. I have lost a lot of weight. My psyche has always been destroyed. I always feel full and heavy and vomit.