GARRETT'S STORY - Chronic Intestinal Pseudo Obstruction

[@christinecameron5702]

Oh my goodness this video was beautifully made! While I don't wish CIPO on my worst enemy, it's kinda a breath of fresh air when I find other individuals around my age with the same diagnosis/struggles as myself. This condition is so incredibly rare, let alone being a child and eventually a young adult so seriously ill, depending on medical equipment, lengthy hospitalizations, etc in order to survive. Unlike you, I, from what we know, was not born with the disease, however since birth, I did show subtle symptoms that now looking back on, could have been early "hints" something was very wrong with my health. Elementary school is really when my symptoms began to show, however we always put it on the back burner thinking *maybe* I was in very early stages of puberty and just developing a bit earlier than my peers. We were very wrong. The only difference with me is that instead of significant GI issues popping up as my first "warning signs", I began to show worrisome neuro symptoms that eventually warranted investigation, diagnosis of Trigeminal Neuralgia, brain surgery, possible MS and A-contractile Bladder (zero motility in my bladder, leading to the dependency of intermittent self catheterization. (Which in the near future would help put the pieces together to diagnose CIPO). I was already being tube fed (via NG) and was in the works to have a Gtube placed once transitioned to "adult world". The year leading up to my transition I began developing more and more severe neuro issues not caused by TN that have still not been completely figured out even as of today. Those symptoms basically caused "episodes" of loss of consciousness, dizzy, trembling, slurred speech, etc. One week I was having multiple episodes and it had gotten to the point/strained/weakened my body and even while not actively having the episodes, I found myself unable to keep any part of my body (especially hands) from shaking continuously. I went to the ER and of course confused everyone so after fluids and meds, I discharged myself. I ended up back there 2 days later after continuously vomiting, unable to tolerate any rate of feeds, meds, or even simple hydration of pediasure to keep me hydrated while I got rid of the "flu". Or so we thought. I ended up admitted to hospital as my carbamazepine levels (antiseizure drug) were low which can cause seizures and other serious symptoms since I had been on it for years and at a very high dose. I spent 5wks inpatient which was actually a relatively decent length of being inpatient (most admissions for me are months) and finally got discharged with an NJ tube this time only tolerating a max feed rate of 40-45ml/hr tops and weekly IV hydration infusions in the ER until home care was set up. Internal medicine basically gave up on me and thought I was faking and on discharge they told me GI did not feel the need to follow me anymore since everything has come back completely normal (all they had done was a bloody endoscopy, barium swallow, and ultrasound). Internal med actually lied and my new GI was LIVID. So fast forward to a yr after that first discharge. By that point I had lost over 50lbs and had a handful of admissions for dehydration, starvation ketoacidosis, severe recurrent bouts of hypoglycemia. My GI refused to stop testing until we found the cause and never once doubted me thinking I was faking. That's when he decided the next step was to start motility testing. As I'm sure you can guess how those turned out with everything I've typed to this point, I was DX'd with CIPO. Upon the first 6mo post-DX, I slowly stopped tolerating J feeds. I am now 100% TPN dependent and on continuous gastric drainage via Gtube and according to my team, will be for the rest of my life. I apologize for such a lengthy comment, I'm just excited to have found another one of us "rare patients" who also has a sense of humour, references the movie Miracles from heaven and uses dance as an "escape" I grew up dancing competitively with my fav style being tap) haha. I hope this comment finds you well and that you've been feeling even "half normal" to dance! Christine

[@GarrettTaira]

christine cameron oh my god Christine! Thank you so much for sharing all of that! I actually just got out of an admission myself and your comment gave me comfort! Please feel free to friend me on Facebook!

[@Black_Magic_Woman]

My little 2 year old girl has been having these symptoms for about 4 months and the drs keep saying she has something else ! Its really hard, she barely eats . Shes been having the worst stomach problems , i truly feel this is what she has

[@GarrettTaira]

Amber Jayde aww jeez that must be really hard- i can imagine :( it being taxing on your heart. I know my condition is diagnosed by process of elimination at the time. Hopefully it’s not but please keep me updated!

[@Black_Magic_Woman]

@@GarrettTaira thankyou so much, and thankyou for posting this. It helps those who feel alone in this journey . My little babygirl is seeing a specialist soon so I will let you know how she gets on

[@GarrettTaira]

Hey not a problem- this is an outlet for myself as well so THANK YOU FOR finding value in it and enjoying it. I really appreciate that. And she will be in my thoughts. We’ll be in touch. I’m going to start putting out more detailed medical stuff just Incase it might help others as well

[@kh-yy8lr]

I wish you a healthy life as possible! My sister was born with this diagnose and she turned 26 today. But year, after year.. she got worse. My little sunflower only have days left😔

[@GarrettTaira]

Oh no I’m very sorry to hear that :( where are you guys from? Sending my love

[@kh-yy8lr]

@@GarrettTaira we're from Sweden, gothenburg. Thank you my friend 🙏

[@GarrettTaira]

@@kh-yy8lr thank you guys for reaching out again sending all my love you guys from the US

[@alessandror9385]

Im studying biomedical sciences and this is why, to help amazing people like you!

[@GarrettTaira]

Alessandro R thank you so much! And I’m sure with that type of attitude you will make a difference!!!

[@matthewdeery]

Powerful story - my second son has Hirschprung's Disease and we dealt with an ostomy for a period before he had a second surgery to reconnect his large intestine. He's doing much better, though we still have many hurdles. You are right, life is a gift my friend. Found your channel from Danny Gervitz/Noah Guy collab - subscribed to your channel. Keep it up.

[@GarrettTaira]

Matthew Deery oh hey thanks Matthew! And oh my god that’s deff tough. I’m glad you guys are doing better! And no way! Were you one of the guys who helped film it?

[@TressaZimmerman]

Dang dude. You have been through so much and I can truly appreciate your strength and courage. I am so glad you didn't stop dancing.

[@GarrettTaira]

Tressa Zimmerman gah thank you so much! That touches my heart! I’m so glad it resonates with you! Glad you joined the team!

[@sarah-hq6wy]

You really inspired me with you positivity you are amazing boy !!! Hope you will never forget that

[@GarrettTaira]

Thanks so much!!!! I'm so happy you watched this!

[@omarpancoast2266]

"The purpose of life, as far as I can tell… is to find a mode of being that’s so meaningful that the fact that life is suffering is no longer relevant." ― Jordan B. Peterson, Maps of Meaning: The Architecture of Belief

[@GarrettTaira]

Thanks Mr Pancoast! that means a lot

[@ilectrapaulaolteanu4861]

Unstoppable. that's what came in my mind when I saw this video. I truly admire you And thank you , cause you showed me that nothing can stop you from doing what you love the most and from achieving things in life. ❤

[@GarrettTaira]

Thank you so much! oh man thank you for taking the time to write this- it really touches my heart. MUCH LOVE

[@1MrZackdaddy]

You are the true HERO!!

[@GarrettTaira]

1MrZackdaddy no way you’re my hero!

[@GeoffreyBoggs]

Garrett... This had my eyes watering... What a lovely and inspiring story, fantastic video composition, and wonderful storytelling. Thank you for sharing it my friend.

[@GarrettTaira]

Geoffrey Boggs gah thank you my friend!!!! That means so much!!!!

[@erikalangbein4586]

I just got diagnosed with cipo al well as a few other things and this gave me hope. Thank you 🙏

[@GarrettTaira]

Dude I’m glad- sorry I’m so late to the party- how are things going?

[@wendylynnkane4149]

Thank you so much! My 4 year old granddaughter has CIPO and short gut ... I am looking for inspiration ... WOW! You surly are an inspiration and a bright light!

[@GarrettTaira]

Aww really thank you! Feel free to ask questions anytime and I’m in the process of creating a medical series hopefully you all will enjoy :)

[@illiagirl7526]

This is so beautifully told, thank you for sharing! and I can definitely relate to that love story

[@GarrettTaira]

Julie LeJulia oh dude I’m so glad! I’m so glad it was received so well :)

[@BarbaraAnnXD]

Your so inspiring, I cried just alil bit. ❤

[@urmomjosie645]

Woah. You are a true blessing. Best wishes!!!! You are truly inspiring!

[@GarrettTaira]

Thank you so much!!! that means a lot!!! MUCH LOVE!

[@TheREELRundownWithJB]

Garrett! bro! you are SUPER brave, talented, and your story is VERY inspiring! continue to push onward dude can't wait to see more amazing things that you'll do! :D

[@GarrettTaira]

I just saw this! Thanks Jay that really means a lot!

[@missavaro]

You are an inspiration. Thank you for sharing your story. Also, nice moves!

[@GarrettTaira]

Ava Ro oh my gosh thank you so much!!! Much love Ava! ❤️

[@AliceZhu]

You are so strong Garrett! Love your positive energy

[@GarrettTaira]

Thanks Alice! Remember to subscribe!

[@AliceZhu]

@@GarrettTaira I have been!

[@GarrettTaira]

@@AliceZhu you’re a real one

[@DeepankarDetrox]

I feel ya bro, I too faced medical issues during my dance, just never give up and everything will be alright 💪😁

[@GarrettTaira]

Oh man thank you! and yes i'm right there with you my friend!!

[@JakeVoorhees]

1000 subs yayyee! Was great meeting you and hearing your story and your funny talk. Congrats! Keep in touch brother

[@GarrettTaira]

WOOO HOOO!!!! THANK YOU JAKE!!! and yes you too!!!

[@Simmychann]

Amazing story amazing editing amazing everything

[@GarrettTaira]

Thank you my friend!!!

[@johnrobertsguitar]

You and your story are so inspiring! I am amazed and moved. You are my new hero.

[@GarrettTaira]

John Roberts Thank you so much John that means a lot you and your whole family are so talented!

[@paulkunze1298]

Dude you are so inspiring. It’s people like you that give me inspiration during tough times. Let’s catch up soon.

[@GarrettTaira]

Dude i appreciate it- that means a lot. Hope to be more of one in the future lol

[@PrettyKittyCuddles]

you are awesome!

[@GarrettTaira]

Medena Vita thank you so much!! Welcome to my page! Welcome to the team!

[@chandakumar956]

This is awesome Garrett! Very inspiring!

[@GarrettTaira]

Thanks Chanda!!! I really appreciate it!!

[@Jtaeto]

great job

[@GarrettTaira]

thanks Jenny love you girl

[@F.Soerensen]

Amazing story man!

[@edmarieaustria499]

Very inspiring!🙏🏼😊

[@GarrettTaira]

Thank you Edmarie!!

[@JoyceChow]

You're such an inspiration, Garrett! Would love to collab with you if you're open to it!

[@GarrettTaira]

Joyce Lynn Chow thank so much Joyce!! Where are you from?!

[@JoyceChow]

@@GarrettTairaTaira, of course! I'm from Virginia!

[@GarrettTaira]

Joyce Lynn Chow yeah let’s do it! Get me on Facebook!

[@bedigasreeram2887]

amazing bro👌👌👌👌👌

[@GarrettTaira]

Sreeram Bediga thank you fam!! I love you dude!

[@bedigasreeram2887]

@@GarrettTaira 😊❤❤❤❤💖💖💖