Hi William! THANK YOU for your kind words! This April will be FIVE years since my takedown surgery and I've REALLY gotten LAX at checking/responding to commends on my channel/email. I've said this before, but alas I've become "one of those people" who went through everything and then "moved on" and living life AFTER UC and surgery. I just told someone else, I SHOULD make at least ONE more video with an update so HOPEFULLY that will be happening SOON! I hope YOU are doing well! :)
Hey Jaysen! Colectomy AND jpouch at the same time! YOU are more brave than I was...LOL!! But I hope all went well for you? Sorry for responding so late...I don't check this email/site much anymore!
@@joesmith5124 Thanks for responding! It actually didn't go well. I didn't have enough length of my small intestine to create the j-pouch. So now I have to try to get my insurance to pay for surgery at the Cleveland Clinic in Ohio. If they won't pay for out of state surgery, then I will have to get a permanent stoma, which I DO NOT want! Sure do hope I can get them to pay.
Great to hear that you are doing so well! :) Thank you for your videos, you have a great and realistic outlook on life! I have Crohn's disease and PSC. Especially your story about PSC helped me because I didn't understand enough about it and just like you my PSC has been stable since I've known about it (also through a blood test). Anyway, thank you for opening yourself up and helping people along the way! I hope you and your PSC is still doing well! Good luck and the best for the future!
Hey mafkaast! Just wanted to say thank you for reaching out and for the good wishes! I hope YOUR PSC and Crohn's are also staying stable! :) Just had my annual liver MRI in December and all is good on the PSC front thus far! :)
UCandPSC Thank you for your reply! I'm very happy to hear that your PSC is still stable; let's hope it will stay like this for a very long time! :) And hope you don't have too much trouble with your pouch! Have a good weekend :)
Thank YOU for your well wishes! And I hope YOUR Crohn's and PSC also stay stable/in remission! These diseases are SUCH A PAIN to deal with MENTALLY as much as physically!
Hey Jason! I'm doing VERY well! :) I'm VERY sorry about not responding sooner. I don't check my email associated with my channel as often as I probably should. I just mentioned to someone else that I guess I REALLY need to make an UPDATE video to catch everyone up! :) And THANK YOU AND YOUR WIFE for you thoughts and concern...:)!!
Jay, Glad to hear all is going well, but it would still be great if you could do a short update sometime in 2016. I'm in pretty much the same boat you were in four years ago [long term UC, newly Dx'd with PSC], and I can't thank you enough for this amazing video diary resource you created. I just finished watching all 48 episodes, and would love to hear your frank assessment on how things are going now, 3+ years after the final takedown surgery. If you do get a chance to do another video, pls lift your shirt and show us how all the scars ended up looking after they totally healed. Kevin
Hey Jason! I'm planning on making an updated video in the next few weeks! I just had another scope of my pouch and am waiting for the biopsy results before I make the video so I'll have the most up to date information to relay! :)
+UCandPSC my boyfriend just passed away of psc, and he loved your channel. glad you're doing well, unfortunately he was diagnosed in a somewhat advanced stage(but not even close to end stage) when he was 17, but he was completely asymptomatic and he remained like that for little over a year. to everyone's surprise(doctors included) he needed a liver transplant by the time he was 19 as it advanced faster than everyone tought. fortunately/unfortunately he got his transplant from a donor friend of his family who committed suicide, and everything was better he had more energy his jaundice cleared up and everything was fine for a while, but his body rejected the transplant, and he was fatigued and listless again. his uncle donated part of his liver to him but he never really bounced back from the surgery and passed away last week at 24 years old. i hope you continue doing well.
Hey Nicole! Good to hear from you! Things are going GREAT! I'm still on a chronic daily dose of antibiotics d/t chronic pouchitis but it IS and HAS BEEN under control with this "method" so I'm good with that! Besides, don't have much choice...LOL! How are YOU doing?
Thanks for the shout-out! Your videos have done so much for me during my transition to an ostomy, that paying it forward was so easy for me to do. Glad to hear that you're doing well!
have you had any trouble with weight gain since you have had the jpouch ? I've been struggling with it since I got my jpouch and I've had it for a little over a year.
Hey Kris, I wasn't sure if you meant trouble GAINING weight or trouble FROM gaining weight...LOL! I've had NO problems at all with weight gain...LOL!! Actually getting harder to get RID of some the extra pounds the older I get...LOL!
+UCandPSC I've been having problems keeping it off. ever since I've had the jpouch. went from 170 to 190 to 200 since my surgery. didn't know if not having my colon caused me to gain weight
AHHH, got it! Can't say for sure...so I would DEFINITELY check with your docs and maybe see a nutrionist? If you changed your diet to adjust to life without a colon (i.e. eating higher density foods to help with liquid absorption, etc) that could be a factor? I've maybe picked up 5-10 lbs or so over 3 yrs but I find that I'm needing to eat less and work-out more. I THINK it's more related to my increasing age and probable changing metabolism.
+UCandPSC oh ok, thank you. ya when I knew I was getting surgery I checked online to see what I should expect and saw your videos, really did help me prepare for it.
Could you make one last video to let those of us contemplating this procedure? Thank You
Can you please do a video update to let us know how your doing now?
Any updates bro? Frequency etc
I have recently found your videos and I am impressed with your work.
Hi William! THANK YOU for your kind words! This April will be FIVE years since my takedown surgery and I've REALLY gotten LAX at checking/responding to commends on my channel/email. I've said this before, but alas I've become "one of those people" who went through everything and then "moved on" and living life AFTER UC and surgery. I just told someone else, I SHOULD make at least ONE more video with an update so HOPEFULLY that will be happening SOON! I hope YOU are doing well! :)
one last video would be awesome :) . I'm getting 2nd surgery done in december and takedown hopefully in march next year
How many times go to the bathroom now ?
Jay, good to know you are feeling better. Prayers and good wishes for all of us going through this.
Having a colectomy and j-pouch surgery all at once on November 1st. Your videos have been very helpful. Thinking I may do the same. Thanks so much!
Hey Jaysen! Colectomy AND jpouch at the same time! YOU are more brave than I was...LOL!! But I hope all went well for you? Sorry for responding so late...I don't check this email/site much anymore!
@@joesmith5124 Thanks for responding! It actually didn't go well. I didn't have enough length of my small intestine to create the j-pouch. So now I have to try to get my insurance to pay for surgery at the Cleveland Clinic in Ohio. If they won't pay for out of state surgery, then I will have to get a permanent stoma, which I DO NOT want! Sure do hope I can get them to pay.
I wonder how this guy is holding up hope all is great and much improved
I was wondering the same thing.
Thank you for sharing. Your videos have been incredibly helpful
Great to hear that you are doing so well! :) Thank you for your videos, you have a great and realistic outlook on life! I have Crohn's disease and PSC. Especially your story about PSC helped me because I didn't understand enough about it and just like you my PSC has been stable since I've known about it (also through a blood test).
Anyway, thank you for opening yourself up and helping people along the way! I hope you and your PSC is still doing well! Good luck and the best for the future!
Hey mafkaast!
Just wanted to say thank you for reaching out and for the good wishes!
I hope YOUR PSC and Crohn's are also staying stable! :)
Just had my annual liver MRI in December and all is good on the PSC front thus far! :)
UCandPSC Thank you for your reply! I'm very happy to hear that your PSC is still stable; let's hope it will stay like this for a very long time! :) And hope you don't have too much trouble with your pouch! Have a good weekend :)
Thank YOU for your well wishes! And I hope YOUR Crohn's and PSC also stay stable/in remission! These diseases are SUCH A PAIN to deal with MENTALLY as much as physically!
hello, How are you? my wife misses your videos she is worried about you because you haven't had an update. God Bless you.
Hey Jason! I'm doing VERY well! :) I'm VERY sorry about not responding sooner. I don't check my email associated with my channel as often as I probably should. I just mentioned to someone else that I guess I REALLY need to make an UPDATE video to catch everyone up! :) And THANK YOU AND YOUR WIFE for you thoughts and concern...:)!!
Jay,
Glad to hear all is going well, but it would still be great if you could do a short update sometime in 2016.
I'm in pretty much the same boat you were in four years ago [long term UC, newly Dx'd with PSC], and I can't thank you enough for this amazing video diary resource you created.
I just finished watching all 48 episodes, and would love to hear your frank assessment on how things are going now, 3+ years after the final takedown surgery.
If you do get a chance to do another video, pls lift your shirt and show us how all the scars ended up looking after they totally healed.
Kevin
Hey Jason! I'm planning on making an updated video in the next few weeks! I just had another scope of my pouch and am waiting for the biopsy results before I make the video so I'll have the most up to date information to relay! :)
Thanks for the update!
+UCandPSC my boyfriend just passed away of psc, and he loved your channel. glad you're doing well, unfortunately he was diagnosed in a somewhat advanced stage(but not even close to end stage) when he was 17, but he was completely asymptomatic and he remained like that for little over a year. to everyone's surprise(doctors included) he needed a liver transplant by the time he was 19 as it advanced faster than everyone tought. fortunately/unfortunately he got his transplant from a donor friend of his family who committed suicide, and everything was better he had more energy his jaundice cleared up and everything was fine for a while, but his body rejected the transplant, and he was fatigued and listless again. his uncle donated part of his liver to him but he never really bounced back from the surgery and passed away last week at 24 years old. i hope you continue doing well.
Can you post a lockdown update?
Hey buddy! How are you?! Haven't had an update from you in awhile and wanted to check in on ya :) hope all is well
💗Nicole (Beauty and The Bag)
Hey Nicole! Good to hear from you! Things are going GREAT! I'm still on a chronic daily dose of antibiotics d/t chronic pouchitis but it IS and HAS BEEN under control with this "method" so I'm good with that! Besides, don't have much choice...LOL!
How are YOU doing?
Thanks for the shout-out! Your videos have done so much for me during my transition to an ostomy, that paying it forward was so easy for me to do.
Glad to hear that you're doing well!
wonder what happend to him now...
Me too. I'm worried about him
Living life probably
have you had any trouble with weight gain since you have had the jpouch ? I've been struggling with it since I got my jpouch and I've had it for a little over a year.
Hey Kris, I wasn't sure if you meant trouble GAINING weight or trouble FROM gaining weight...LOL! I've had NO problems at all with weight gain...LOL!! Actually getting harder to get RID of some the extra pounds the older I get...LOL!
+UCandPSC I've been having problems keeping it off. ever since I've had the jpouch. went from 170 to 190 to 200 since my surgery. didn't know if not having my colon caused me to gain weight
AHHH, got it! Can't say for sure...so I would DEFINITELY check with your docs and maybe see a nutrionist? If you changed your diet to adjust to life without a colon (i.e. eating higher density foods to help with liquid absorption, etc) that could be a factor? I've maybe picked up 5-10 lbs or so over 3 yrs but I find that I'm needing to eat less and work-out more. I THINK it's more related to my increasing age and probable changing metabolism.
+UCandPSC oh ok, thank you. ya when I knew I was getting surgery I checked online to see what I should expect and saw your videos, really did help me prepare for it.
GLAD to hear! It's not like EVERYONE has their colon removed everyday...LOL!!