I like to thank you for this video, scheduled to get my suprapubic catheter next week. I'm really having issues with my current urethral catheter so I'm looking forward to the change. Thanks again!
I have just subscribed thank you I have had my SPC for 2 years next month the UTIs are the worse for me because it triggers my epilepsy which I have sadly the bladder spasms for me are getting worse but I have known the district nurses for years so I trust them With my changes
I temporary got a urethral catheter but getting a SPC tomorrow. Was it painful for the first month or ? While the area healed? Do you have any pain.. you mentioned urine leaking around the tube. Has this been resolved with time? Or was that only with intermittent catheter? I hope i don't get leaking when my bladder spasms.
I feel your pain man. I have supera pubic catheter due to penile cancer. I had my penis removed so I had catheter installed. I use 20 French. Probably need a 24 French due to sediment. I also have terrible spasms. It feels like somebody is cutting my rectum out. I’m glad I ran across your channel. We have a lot in common!! Take care and hope to talk soon!! George
Me too I’ve had bladder issues all my life but now I’ve had a SP for a couple of years after a brain haemorrhage and unable to walk so was given a SP. You mention bowel spasms, it was something I’ve never had before and don’t know how to handle them it’s good to know I’m not the only one.
That's good dude but I think to each his own because I don't think I could do a foley catheter and I'm much happy the SP over a foley. I tried condum catheters my first year but I couldn't find one that would stay in all day so I always ended up covered in pee. We all just have to find what works best for ourselves 👍👊
i've been with a suprapubic catheter for 24 years. its been difficult especially with the recurring uti's. My urine is always sent to the lab for mcs. Cranberry tablets help manage the uti's.
Yeah cranberry is good and D-monose is really good as well. I will only take antibiotics once or twice a year because I don't want to have tolerances for the antibiotics but if it gets bad enough I'll take them..
Hey brother Erick I need some help please just saying when we use to clean out her catheter is with I can only find them in syringes and nobody around here will give you bottles of Celine I’m in nowhere could you help me out with that where do you get your bottles from
Who does the catheter change for you? I get my bottles of sterile water and acidic solution from the home health agency that comes to change the catheter. I think you might need a doctor's RX for it, which is dumb but I think that is what you need.
I'm about to get a suprapubic catheter and I'm absolutely terrified. I can feel everything below the waist and on my pubic area and I was curious if you had sensation down there? And if so what does it feel like when they change it? does it hurt? I'm so afraid of it hurting when they change it.
I don't have full sensation below my injury but I get a lot of nerve pain and nerve sensation. The changes are not greatest to deal with. I get high AD levels for about 24 hours when I get it changed so I don't know what it would be like with full sensation. I just don't know what your sensation is like so I can't really say for sure. What's you level of injury? Does intermittent cathing hurt when you do it?
Hi how are you doing in your situation. I'm about to have a Suprapubic catheter fitted in March. I have no feeling in my blader but I have no choice because the hospital are really concerned about uti's. I have tried self catheterization but it totally failed big style. Does the hospital train for flushing the blader. Hope you're doing ok you take care.
No it didn't burst the balloon. The balloon was in too far and when it got filled it ripped me open inside my bladder because of where it was positioned.
Hey dude sorry about the late reply but I think it's a good option if you're having issues with cathing. Do you cath every 2 hours to stay on schedule or is that the maximum time belt your bladder fills? Can you tell when your bladder is filling up?
When I was first injured I couldn't figure out how to self cath and needed help to do it and I really wanted to have Independence. Plus I couldn't hold my bladder at all, I would just pee all the time between trying to cath. Now with Botox injections I could hold my bladder but I'm fine with the SP for the most part.
It's not a bad option but definitely talk to your doctor/urologist about it. And I know you commented that you have full sensation so I'm not sure what it would feel like for you
Hi this is my first time on your channel I’m going to be having a suprapubic catheter fitted i’ve got a catheter still in the penis at the moment and I’m constantly getting UTIs , does having a suprapubic catheter stop you from getting UTIs all the time and as it improve your life
Yeah it will definitely help UTIs and quality of life. You should not have a Foley catheter for very long. They are used in emergency use and for short periods but not a long term solution. You still have to keep the suprapubic catheter clean and will get some UTIs but not like with a Foley catheter.
I'm really sorry to hear you were in the ER and I hope you're not in a hospital anymore. I'm not really sure what that is with the SP tube fracturing? I tried looking it up but couldn't find anything. What exactly is that?
Live To Roll I could not tell you. 😂 that’s how the Dr. explained it. The balloon was broken and it was split on the outside of the tube as well. I hit a branch while hand cycling
Wow yeah that doesn't sound great but I am really sorry you're having to go through all that. I mean we have enough to deal with without hitting tree branches and breaking catheters 😂
That is actually true.. It's a same day procedure. They usually still put you out with anesthesia but it's a quick surgery so they let you go later that day.
Hello. Great video. I am incomplete paraplegic from navel down. I'm also in suprapubic catheter for 3 weeks now. I'm wondering if it's normal my pee coming out or squirting from my penis? Have a great day!
If you're leaking pee like that it could be because it's me still and you're having bladder spasms but if it continues then it's possibly an infection or something else irritating your bladder. Are you taking any rx's to reduce bladder spasms?
They have to go in the bladder with a small scope that has a retractable needle for the injections. I have to be put under to get them because of AD but I have friends that do it right in the Dr office
michael nogaro so its not like repairing the uretra as they used botox in cosmetic treatment? Coz from what i know botox for facial they used to tighten the skin to avoid any wrinkle. Correct me if i were wrong 😅
@@BlackbaronsZzz .. Botox paralyzes the muscle as to not frown as far your forehead goes..the bladder gets paralyzed also to not contract often due too over activity. They use botox for lower back muscles that get over stimulated and cramp causing pinched nerves.
There are many things that can go wrong regardless of if you or a nurse does it but if you have the hand function and know what you're doing then I would say there is less risk then having an inexperienced nurse do it.
I like to thank you for this video, scheduled to get my suprapubic catheter next week. I'm really having issues with my current urethral catheter so I'm looking forward to the change. Thanks again!
I just subscribed... I will review your story and follow you... I think it s great that you are reaching out to others...
Just found your channel I have cerebral palsy it’s nice to find People Similar issues
I have just subscribed thank you I have had my SPC for 2 years next month the UTIs are the worse for me because it triggers my epilepsy which I have sadly the bladder spasms for me are getting worse but I have known the district nurses for years so I trust them With my changes
Thank you Sean,
I just got my spc surgery 2 weeks ago. This was super helpful, and your gentle and positive demeanor was relaxing.
Thank you and I hope the video helped. If you have any questions or need advice on it feel free to contact me.
How are you getting on with it? I’m due to have one fitted soon & I’m rather worried about it
I temporary got a urethral catheter but getting a SPC tomorrow. Was it painful for the first month or ? While the area healed? Do you have any pain.. you mentioned urine leaking around the tube. Has this been resolved with time? Or was that only with intermittent catheter? I hope i don't get leaking when my bladder spasms.
I appreciated your vid on flushing.
I feel your pain man. I have supera pubic catheter due to penile cancer. I had my penis removed so I had catheter installed. I use 20 French. Probably need a 24 French due to sediment. I also have terrible spasms. It feels like somebody is cutting my rectum out. I’m glad I ran across your channel. We have a lot in common!! Take care and hope to talk soon!! George
Me too I’ve had bladder issues all my life but now I’ve had a SP for a couple of years after a brain haemorrhage and unable to walk so was given a SP.
You mention bowel spasms, it was something I’ve never had before and don’t know how to handle them it’s good to know I’m not the only one.
I just went from 39 years of condom style catheters to using a Foley catheter. So far have been able to avoid the suprapubic.
That's good dude but I think to each his own because I don't think I could do a foley catheter and I'm much happy the SP over a foley. I tried condum catheters my first year but I couldn't find one that would stay in all day so I always ended up covered in pee. We all just have to find what works best for ourselves 👍👊
Have you ever tried men’s liberty external catheter before your present catheter?
No I have not. I have tried a few condom catheters but not in a long time.
i've been with a suprapubic catheter for 24 years. its been difficult especially with the recurring uti's. My urine is always sent to the lab for mcs. Cranberry tablets help manage the uti's.
Yeah cranberry is good and D-monose is really good as well. I will only take antibiotics once or twice a year because I don't want to have tolerances for the antibiotics but if it gets bad enough I'll take them..
Do the cranberry tablets really help with uti. I eat bacrtrum like tick tacks. Good luck man. Thanks
Hey brother Erick I need some help please just saying when we use to clean out her catheter is with I can only find them in syringes and nobody around here will give you bottles of Celine I’m in nowhere could you help me out with that where do you get your bottles from
Who does the catheter change for you? I get my bottles of sterile water and acidic solution from the home health agency that comes to change the catheter. I think you might need a doctor's RX for it, which is dumb but I think that is what you need.
Take care and stay safe!
I just set the bell so I won't missed again your new video
I'm about to get a suprapubic catheter and I'm absolutely terrified. I can feel everything below the waist and on my pubic area and I was curious if you had sensation down there? And if so what does it feel like when they change it? does it hurt? I'm so afraid of it hurting when they change it.
I don't have full sensation below my injury but I get a lot of nerve pain and nerve sensation. The changes are not greatest to deal with. I get high AD levels for about 24 hours when I get it changed so I don't know what it would be like with full sensation. I just don't know what your sensation is like so I can't really say for sure. What's you level of injury? Does intermittent cathing hurt when you do it?
Hi how are you doing in your situation. I'm about to have a Suprapubic catheter fitted in March. I have no feeling in my blader but I have no choice because the hospital are really concerned about uti's. I have tried self catheterization but it totally failed big style. Does the hospital train for flushing the blader. Hope you're doing ok you take care.
just wondering how you manage leaks? Especially at night? Any products you can recommend?
Do you have a cat bag? If not get a T valve. It works best. I discovered it as i was knocking the plug off. Hit me back if any questions.
For sediment,take organic apple cider vinagre two spoons with one lime and warms water every morning and night,it will help reduce sediments 👍🏼
Do you have an open end catheter?
It's connected to a leg bag during the day then a bedside drainage bag at night so it's not just open at the end.
I definitely am going to probably continue though with the Botox injections along with the SPC
I'm getting a suprapubic tomorrow
How many cc do they put in ur balloon. I don't understand why I t would bust.
No it didn't burst the balloon. The balloon was in too far and when it got filled it ripped me open inside my bladder because of where it was positioned.
I did the botox which worked very well for about 6 weeks then stopped suddenly
I wasn't educated and am scheduled for a procedure'Im 78 and feel like im nursing home bound....not too happy
Its not a big deal... Im 61 and was having possible kidney failure from bladder backing up. Youll be fine..hit me back if advice needed
Hi guys, How's your experience woth suprapubic now? My friend might have Sp in 2 wks. Any opinion? He is paraplegic and 70y.o
Very good👍
Thanks in advance God bless
I have pretty much decided to get my first suprapubic because straight cathing Is way too much every two hours and it’s too difficult
Hey dude sorry about the late reply but I think it's a good option if you're having issues with cathing. Do you cath every 2 hours to stay on schedule or is that the maximum time belt your bladder fills? Can you tell when your bladder is filling up?
What is the difference between a superpubic catheter and a Foley catheter
foley catheter goes through your genital area and the suprapubic catheter goes through your lower abdomen
Thank you for answering this.. I'm not sure why I missed it but I apologize 🙌
@@LiveToRoll thank you because I've learned a lot just from your videos my doctor's didn't tell me much, and I had my sp tube done almost a month ago
Why you dont use single-use cathethers? Here in finland almost every disabled ppl use them
When I was first injured I couldn't figure out how to self cath and needed help to do it and I really wanted to have Independence. Plus I couldn't hold my bladder at all, I would just pee all the time between trying to cath. Now with Botox injections I could hold my bladder but I'm fine with the SP for the most part.
I been 25 year rolling my wheelchair , take magnesium citrate for spasms it works FG!!!
How often and what dose do you take ?
Just had Botox It helps I do not leak anymore! But I cath why to much I am thinking about SPC
It's not a bad option but definitely talk to your doctor/urologist about it. And I know you commented that you have full sensation so I'm not sure what it would feel like for you
Hi this is my first time on your channel I’m going to be having a suprapubic catheter fitted i’ve got a catheter still in the penis at the moment and I’m constantly getting UTIs , does having a suprapubic catheter stop you from getting UTIs all the time and as it improve your life
Yeah it will definitely help UTIs and quality of life. You should not have a Foley catheter for very long. They are used in emergency use and for short periods but not a long term solution. You still have to keep the suprapubic catheter clean and will get some UTIs but not like with a Foley catheter.
I use waterproof electric tape to hold on a condom catheter.
Thank you
I’m in the ER because of my SP tube fracturing.
I'm really sorry to hear you were in the ER and I hope you're not in a hospital anymore. I'm not really sure what that is with the SP tube fracturing? I tried looking it up but couldn't find anything. What exactly is that?
Live To Roll I could not tell you. 😂 that’s how the Dr. explained it. The balloon was broken and it was split on the outside of the tube as well. I hit a branch while hand cycling
Wow yeah that doesn't sound great but I am really sorry you're having to go through all that. I mean we have enough to deal with without hitting tree branches and breaking catheters 😂
iwas told the placement is a same day procedure.............not true correct??
That is actually true.. It's a same day procedure. They usually still put you out with anesthesia but it's a quick surgery so they let you go later that day.
how far below belly button did they insert?
It's a good 6 inches below my belly button
Hello. Great video. I am incomplete paraplegic from navel down. I'm also in suprapubic catheter for 3 weeks now. I'm wondering if it's normal my pee coming out or squirting from my penis? Have a great day!
If you're leaking pee like that it could be because it's me still and you're having bladder spasms but if it continues then it's possibly an infection or something else irritating your bladder. Are you taking any rx's to reduce bladder spasms?
So when you will upload a new video then?
I'm editing video from waterskiing last week and will hopefully have it ready by tomorrow to upload 👍
Live To Roll cool will look forward to your new video
How is botox injection do the work?
They have to go in the bladder with a small scope that has a retractable needle for the injections. I have to be put under to get them because of AD but I have friends that do it right in the Dr office
Live To Roll I see but I curious and want to know for what reason botox being used to inject in the bladder ? And what is AD?
@@BlackbaronsZzz it controls an overactive bladder by weakening muscle
michael nogaro so its not like repairing the uretra as they used botox in cosmetic treatment? Coz from what i know botox for facial they used to tighten the skin to avoid any wrinkle. Correct me if i were wrong 😅
@@BlackbaronsZzz .. Botox paralyzes the muscle as to not frown as far your forehead goes..the bladder gets paralyzed also to not contract often due too over activity. They use botox for lower back muscles that get over stimulated and cramp causing pinched nerves.
the botox was fairly painful
hope to see you aug 28th
I'm going to try doing a live stream again but I have a doctor's appointment so I'll have to do it earlier in the day or maybe in the evening 😊
What can go wrong changing the suprapubic catheter on your own
There are many things that can go wrong regardless of if you or a nurse does it but if you have the hand function and know what you're doing then I would say there is less risk then having an inexperienced nurse do it.