I was talking about mucus and explained that where I've got an augmented bladder (bowel to bladder) this produces more mucus. So bladder wash outs have to be done.
But if you are going to leave catheters in for any reason it's best to use non-lubricated, as this is what we are recommended by University College London Hospital.
@MitrofanoffSupport Ok I see... as my dauther is not closed and also have this but her entrence is on her right hand side of her belly. But she leak... which imo is a bit of a pain.. I guess GOSH didnt want to close her, as some might get that feeling where she migth be able to pee normal as well.. although my gut says other wise.
It really makes me cry, not meaning that in a bad way... just my DD who is 5 (have this) but when I see you I feel such hope about the future... well done you and I will look for more vids.
Thank you for demonstrating on how it looks and works. I'm having a Mitrofanoff done in January due to neurogenic bladder caused by spina bifida. I'm very anxious to have this done and cannot wait to be able to cath so easily. Thank you again!!!
It is a very daunting time especially as when your living a certain way for so many years although you know that life should improve it's still a very scary time.
You can join the group on the website and give me a call if you want to chat.
I was born with 5 kidneys, abnormal bladder and a blockage from my urethra to bladder. I had Bladder Augmentation Surgery and Urethral re-implantation done April 27th, i been Cathing like this for about a year and a half. but not from my belly button tho.
I was born with spina bifida and had to get a mitrofanoff as my bladder shriveled up i had it since i was 6 or 7 and i'm now 21 so i'm pretty used to it but unfortunately it didn't work fully and i suffered leaking so i had to go in for corrective surgery which still didnt work so i guess i'm just going to get used to living with a stoma bag.
@MitrofanoffSupport I haven't had anymore surgery since they tried the corrective surgery a few years ago and i don't think i'm going to try again so i'm just going to live usng a bag for any leaking
I might be getting this procedure in near future. I just want to know if it hurts to insert the tube. Also, does it hurt when you sit normallyor something rub against your stomach?
I'm thnking of getting this done. I'm in a wheelchair and find transferring and pulling my trousers up and down really difficult. That's a really helpful video! Thanks!
I was born with a very wide and short urethra along with an extremely small bladder. My ureters had multiple coIlection systems, and I also have two uterus with two sets of cervixs, and was born with a double vagina which has been removed. I have done my own case study on the website on the "About Me" page if you want to read more.
what did you say at 2:56 "that where i get bowl something bladder"? just curious
princessshortie29 2 weeks ago
@princessshortie29
I was talking about mucus and explained that where I've got an augmented bladder (bowel to bladder) this produces more mucus. So bladder wash outs have to be done.
MitrofanoffSupport 1 week ago
hi
baltr100 1 month ago
@baltr100
Hey :)
MitrofanoffSupport 1 week ago
Also i notice that you do not have Instacaths you use the one that you have to lub yoruself, is there any reason for this or just a prefference?
Dante2871 1 month ago
@Dante2871
It's just personal preference.
But if you are going to leave catheters in for any reason it's best to use non-lubricated, as this is what we are recommended by University College London Hospital.
MitrofanoffSupport 1 week ago
thank you for posting this:) I also have a mitroffonoff and keep getting questions about it :)
Dante2871 1 month ago
@Dante2871
Only talk about it if you want to. It's you body and you can choose to tell people you want to know or not.
Join to website as you can talk to others with a mitrof on there just google Mitrofanoff Support!
MitrofanoffSupport 1 week ago
Sorry lol... are you closed down there? Sorry very personal question... if you dont want to answer that its ok...
Bonussful 2 months ago in playlist Fler videoklipp från MitrofanoffSupport
@Bonussful
Don't be sorry!!
I'll always answer all questions :)
Yes I have been closed of otherwise the surgery would not have worked for me.
MitrofanoffSupport 2 months ago
@MitrofanoffSupport Ok I see... as my dauther is not closed and also have this but her entrence is on her right hand side of her belly. But she leak... which imo is a bit of a pain.. I guess GOSH didnt want to close her, as some might get that feeling where she migth be able to pee normal as well.. although my gut says other wise.
Bonussful 2 months ago
@Bonussful
I'll answer anything, I'm not shy lol.
Yes I am closed off completely.
MitrofanoffSupport 1 week ago
BTW... do you have a blogg? You should start one.... I got one but its in Swe. MY dd have it on the side... not where you got yours. = )
Bonussful 2 months ago in playlist Fler videoklipp från MitrofanoffSupport
It really makes me cry, not meaning that in a bad way... just my DD who is 5 (have this) but when I see you I feel such hope about the future... well done you and I will look for more vids.
Bonussful 2 months ago in playlist Fler videoklipp från MitrofanoffSupport
Thank you for demonstrating on how it looks and works. I'm having a Mitrofanoff done in January due to neurogenic bladder caused by spina bifida. I'm very anxious to have this done and cannot wait to be able to cath so easily. Thank you again!!!
sbgirl4371 3 months ago
@sbgirl4371
You are very welcome.
It is a very daunting time especially as when your living a certain way for so many years although you know that life should improve it's still a very scary time.
You can join the group on the website and give me a call if you want to chat.
Kyla :)
MitrofanoffSupport 3 months ago
Do you have any issues with urine leakage from your Mitrofanoff?
ogrish84 4 months ago
@ogrish84
I personally do not but I speak to lots of people who do.
If you log in to the website you can chat to lots of other people, just google Mitrofanoff Support
MitrofanoffSupport 3 months ago
I was born with 5 kidneys, abnormal bladder and a blockage from my urethra to bladder. I had Bladder Augmentation Surgery and Urethral re-implantation done April 27th, i been Cathing like this for about a year and a half. but not from my belly button tho.
rkfg 5 months ago
@rkfg
5 kidneys WOW, that's one I've not heard of before :)
So do you have a Mitrofanoff on the side of your abdomen?
MitrofanoffSupport 3 months ago
@MitrofanoffSupport Yes i do. I cath there just about everyday. Had it for about a year and a halk. Its a major life changer.
rkfg 3 months ago
I was born with Bladder extrophy -epispadias....but fortunatly I don't use the mitrofanoff but I know many friends as me that use the mitrofanoff...
allievo1 6 months ago
@allievo1
Sorry I've not replied to you sooner :(
Well tell any of your friends to get in touch, it would be great to hear from them :)
Hope your ok!!
MitrofanoffSupport 3 months ago
I was born with spina bifida and had to get a mitrofanoff as my bladder shriveled up i had it since i was 6 or 7 and i'm now 21 so i'm pretty used to it but unfortunately it didn't work fully and i suffered leaking so i had to go in for corrective surgery which still didnt work so i guess i'm just going to get used to living with a stoma bag.
jorgc 7 months ago
@jorgc
I'm so sorry I haven't replied soon :(
How are you doing? Are you / have you had the Urostomy done?
MitrofanoffSupport 3 months ago
@MitrofanoffSupport I haven't had anymore surgery since they tried the corrective surgery a few years ago and i don't think i'm going to try again so i'm just going to live usng a bag for any leaking
jorgc 3 months ago
@jorgc
It's good to hear from you :)
What a pain :( Is it through your choice of not having anymore surgery or the Urologist?
MitrofanoffSupport 3 months ago
@MitrofanoffSupport yeah through my choice of not having anymore surgery since i've gone through alot for the mitrofanoff and other operations.
jorgc 1 month ago
ska543
I hope all goes well for your friend. Tell him / her to get if touch with me if they like :)
MitrofanoffSupport 9 months ago
@MitrofanoffSupport He subbed you recently and is extremely grateful for your support :) Thanks!
ska543 9 months ago
A friend of mine is planning on having this done soon and I strongly pray it goes smoothly!
Thanks for the vid, take care :)
ska543 9 months ago
No it doesn't hurt once you get used to it. Sometimes clothes rub but not all the time :-)
Hope this help x
MitrofanoffSupport 11 months ago
I might be getting this procedure in near future. I just want to know if it hurts to insert the tube. Also, does it hurt when you sit normallyor something rub against your stomach?
IndiaDelhite 11 months ago
I am glad you found it helpful, no problem.
MitrofanoffSupport 1 year ago
Hey Ali,
No problem, I'm glad you found it helpful. Chat soon on facebook again soon x x
MitrofanoffSupport 1 year ago
I'm thnking of getting this done. I'm in a wheelchair and find transferring and pulling my trousers up and down really difficult. That's a really helpful video! Thanks!
sparklyAli 1 year ago
why did you have to get a mitrofanoff?
wheelchairdiaperboy 1 year ago
@wheelchairdiaperboy
I was born with a very wide and short urethra along with an extremely small bladder. My ureters had multiple coIlection systems, and I also have two uterus with two sets of cervixs, and was born with a double vagina which has been removed. I have done my own case study on the website on the "About Me" page if you want to read more.
MitrofanoffSupport 1 year ago