Відео

"You will do what you will do, and whatever that looks like that'll be okay" - beautiful

Thank you for this video! ♥️ Needed to hear from other spoonies about their lives. We're not alone ♥️

Ok I’m seeing a gi doctor next week cause I can’t keep anything down I have been having problems eating for 2 months with pain and I’m getting sick from every thing

Glad to see you making videos again! We talked before on fb and i hope to meet you one day.

I love this 💜

Thanks for your video! I have chronic illness and will be getting a feeding tube soon and just started a vlog too!

I don't want to say you are lucky you had a choice in getting tube, but to an extent you are. I got my first NJ tube in January after being admitted for dehydration, symptom management and malnutrition I had that first tube for 5 months and we tried a pyloroplasty it didn't worked, triggered my GI system further, and I was sent home being able to keep literally nothing now. I was discharged 5 days post op and was admitted again two days later for what turned into a 17 day stay because I again dehydrated, malnourished ( I went 10 days with no food and survived the first 5 days on IV fluids, sent home r . two days and then back on IV fluids), and symptomatic. I could no longer tolerate NJ feeds fully so I had to be put on TPN. I have been on TPN ifor just under 12 weeks now. I was told inpatient in June you need to start pursuing a GJ tube or J tube and G tube. My parents at the time were not satisfied with that idea, they had been resistant since it was mentioned the first time in February. When I went into the hospital again in July for a line infection is was stated yet again. I could also no longer keep the NJ tube down due to the antifungals and the severe irriation from having a tube in my nose for 7 months so we left it out and now I am just doing TPN. My parents were so unsatisfied with this idea that they flew me to Tampa to see a motility specialist and also because the fact I had been told by a colorectal surgeon and Ileostomy is the only option for your colon. The motility specialist literally told them that a GJ tube or J tube and G tube as soon as possible is my only option in hopes of getting me off TPN (she had no desired to do another NJ on me) and hopefully the venting aspect will relive the dysmotility symptoms and the fact we had also discovered I have pancreatic insuffiencey and I would tolerate feeds better, and to start with getting the tube then do the ileostomy. My parent's finally heard what they needed and now they are at least more open these options. So this Friday I see the doctor who does adult TPN management (I am transitioning from children's to adult care since I am 18 ) and feeding tube placements. It is pretty much certain I am doing the tube the matter is how fast it can be done and what type of tube(s)

Thank u SOOO much for putting our daily struggle with chronic pain in words. 🤗I can't even get out of bed in the morning before the pain starts. 😣It is the frustrating how no one "really" understands unless it you yourself😑. Not even those who are trying their hardest to support and help u on this journey- it really does make u feel like a liability .😔 This is definitely NOT living.

you made me cry because I know how everyone of you feel. thank you

Hi, Brilliant video.:) Any chance of doing some more please?

I had mine endoscoply and it was supposed to be outpatient but I ended up in the hospital for three weeks because of pain and my gi tract shut down because of it all.

I always say "I'm not living, I'm just existing."

Something I've noticed is that women get hit with more acute symptoms of various immune deficencies, and other chronic diseases. It would be interesting to see if there is a statistical skew between female and male population groups. Personally, I have Celiac Disease, but my symptoms were more classic in nature compared to what I've seen with female Celiacs. Of course I'm waiting for the next autoimmune shoe to drop, but hopefully it won't be too serious.

Cool video girls

Yes to everything here! I'd love to be involved in a video if I could be. I was born with a heart/lung defect TAPVR type 3. 1 working lung. asthma. RA. TMJ. autoimmune issues and a low immune system.

That was fantastically!!!

Thanks for the video, just discovered your blog, hope you keep writing

Great video for awareness. Thank you for making this! :)

love your blogs!! I have GP too.

love your blogs!! I have GP too.

love your blogs!! I have GP too.

love your blogs!! I have GP too.

your awesome

I love your vlogs

I love your vlogs

Great video! your awesome my GP sister..thanks for sharing your story with us all...<3