12 Things they don't tell you before you have a suprapubic catheter placed
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- čas přidán 25. 08. 2024
- Hi guys, Lets Talk About 12 Things They DON'T Tell You Before You Have A Suprapubic Catheter Placed!
So chances are that you are new here, so let me start by saying hi im Vickie, and this is my 'just_trickyy' life. Come join me on a tricky journey battling chronic illness with humour and a fair bit of sarcasm.
To get more regular updates of my life make sure you're following my instagram- just_trickyy (this is linked below)
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Codes:
Night bags 2000ml: 21578
Bard optiflo 50ml: CSS50
Linc medical OPEN TIP catheter size 16F: 08451610G
Here is a link to get a FREE sample from Linc medical- you can take this to your tube change to try them out.
www.linc-medica...
Catheter syringe- SYRINGE
Uro-tainer 50ml: FB99849
RUSCH Belly Bag; includes belt, 2 PACK: B1000
Clinifix tube holder: 40-410
My episode with Linc Medical-
• "How a Suprapubic Cath...
I’m 80 yrs old and about to commit to a Supra pubic catheter after living with an in dwelling one for four months. Glad I watched your video
This is great information. I have had a SPC for four years now (full sensation) and wish someone had shared this with me a long time ago. As you correctly said, the SPC is nothing to be afraid of. For me, life is pretty much normal now with the exception of tube changes, etc. No pain, and I do my own changes at home. One plus for anyone who normally gets up to go to the toilet at night is with the SPC you can sleep through the night as your bladder is always draining! Nice job with this video.
Hi James what are changes like? Do you take anything for pain when having the tube change
@@mattm1686 Hi Matt. No, nothing for pain at all as I don't experience any. I do the change standing in front of a bathroom mirror and it only takes a minute or two. It feels "funny" when the old tube comes out, but it definitely doesn't hurt.
@@jamesmoninger1982 I'd use the word uncomfortable over funny. But that's my experience.
My doctor didn't want to leave the SPC in for long. He says if it's in there too long it can cause bladder cancer. You might want to look into that. I hope he's wrong for your sake. Wish you well.
@@beatweezl Yes, I was told the same thing about bladder cancer, and it worries me more as each year passes. My options are pretty limited, though. How long did you have the SPC?
@@jamesmoninger1982 My first one was 11 months, second one was around 4 months.
My doctor told me there is a procedure where they put a hole in your side and you stick a intermittent catheter in there to empty. Maybe that?
So young yet so wise.
Thank you for your kindness, sympathy and understanding for all us who are going through a very worrisome journey.
You have allayed so many our fears, and helped give us courage to face the trials and tribulations of upcoming events.
I am 78, and like many gentlemen of my vintage, I will soon have a TURP operation, to restore free flow.
At present I have an indwelling catheter, and after only a couple of weeks, my kidney function is bouncing back. This augurs well for the operation.
Post op I will have a SPC for some time, and this video has bucked me up immensely.
THANK YOU.
Thanks for this and really appreciate the positivity
I just got my catheter placed 2 weeks ago thank you for the awesome advice
I guess I'm very fortunate in this case. I have not had any blockage problems or even heard of some of the procedures you mentioned and I've had one SPC for 11 months and have another one now for 7 weeks. And I even have chronic infections to a point where my urine is so cloudy it's almost opaque. I'd imagine that would be perfect situation for blockage but thankfully, never. They just reduced the size of the cath to 14fr so now I'm worried it might get blocked. The doctor changes it out every 6 weeks.
One thing I notice everyone talk about is the collection bag. Not sure if I'm a different case since my bladder doesn't spasm anymore but I only use a bag at night when I sleep. During the day, I just plug up the end and after a few hours, I kind of feel full, I just pull the plug and empty. Much more convenient and less conspicuous than having a bag attached and filling up. Can you use a plug? I highly recommend it.
That's exactly what I do (no bag during the day). Works well.
During the day you have headache or anything? During the day i just plug up the end,but after half hour my heart is beating fast and headache. Please help please reply
@@jishk8470 No headache or heart beating. It might be a psychological thing with you.
Thank you SO MUCH, Vickie. I just learned last week that I'm going to need an SPC, and I've been researching frantically. All of the information you're providing is SO helpful! Keep up the good work!
You are very welcome JC, im glad you enjoyed the video
jcjana54 how are you doing?
@@MyAccount0225 Hi, Vickie. My surgery is next Tuesday, April 4, and I'm pretty nervous. I'm more worried about the changes than I am about the surgery itself. Thanks again so much for your videos. You're an excellent communicator! That said, I don't get much out of your rushed videos. I want to try a belly bag, and I couldn't really get any help from your belly bag video because it was so rushed and had some camera angles that made it hard to view. I really HATE to give you any less than positive feedback, but you have so much to offer if I can just understand it. I really like the videos in which you talk and show things. It would be nice to have labels on the products so we can write things down. Thanks so much for asking about me. You're so kind!
I’m scared about get my spc this was very helpful
Thankyou for this video!!
I have to make the decision in 4 to have this procedure done. I am so scared. Your video has given me hope!
Thanks for the video Vickie, It's made me feel a lot better about my upcoming procedure. Fingers crossed it goes well. xxx
Thank you so much for this video, I didn't even know it was a thing till a few days ago, I see a few lads in my ward with them and it seems to be a hassle healing process. I broke my back 8 weeks ago. Love from Scotland
Thank you made me so much more relaxed changing from urethra catheter to a super pubic catheter sounds funny but I’m a bit more excited about it looks so much more comfortable like you say just relax ask questions and it’ll all be okay❤
Thank you. Very helpful. I call mine a USP stick..😀
The ladies dig my SPC! 😜😂
Thank you so much, fantastic info, my first urology appointment today towards SPC
Thank you for you honest reviews I have had a SPC for 1 year I also get my supplies from Bullen health care and my changes are done by the district nurses I have had My SPC stick to the side of my bladder the pain when the nurses took it out It took me 2 weeks to recover from that and the UTI went to my kidneys My SPC is called Spirit
OMG I"m sorry to hear this.
Very informative I am having mine a week on Tuesday. Great information
Thank you for the video, my Urologist suggeted a suprapubic catheter, after Interstim and botox combinded, along with a pessary did not work. I am now even more convinced that I do not want to have one. My bladder was fried by radiation which added to my grief.
I'm meeting with my uro doc today because I need to switch to an spc after spending 8 hrs in the ER the other day (my third trip) when my urethral foley got totally clogged. I really want to get back to some kind of normal life. Hoping the change will help. Wish there were more people and groups to tap into for info though. Your vid was helpful...
I am about to get one and you have eased my fears. Thank you
I’m having a SPC on Monday, after having major issue with indwelling catheter. I have had at least eight times the catheter has been expelled with balloon still inflated. I’ve the catheter for 21 months. In that time I have never got to 12 weeks, the longest was 9 weeks. I also like the open tip catheters. I use a flip flo valve. I’m planning to carry on using them with the belly bag. I swim at least six times a week. How long after the op can you go back to normal.
how should i position it cause it sticks out of my belly so like its uncomfortable having pants on. should i like tape it so its flat against my body?
Thank you so much… this has been a great help..
Hi I had a SPC fitted this March size 18ch
have you ever suffered with the valves flip flow falling out. I had my catheter down sized to a 16ch after advice but the prossy valves fall out and know the leg bag connections are starting to fall out. I was just wondering what you can advise.
Thanks for your advice about twisting my spc catheter I twist my catheter every day and especially when I have a shower.
Thanks ever so much for sharing your videos I really appreciate your help. 👍
Im having my SPC surgery tomorrow morning in a few hours…Thank you for this information. How long for the recovery?
How did things work out?
How was your spc
I’m having mine in 3 hrs!! Bricking it but 6 years of hell and it’s finally happening I’ve never been so relieved😭🙌🏻
i was born with spina bifida, can't do that walking thing, i have to have my second op for a urethral stricture in August, ive been using intermittent catheters for nearly 30 years now, it wasnt great at first but now its just one of those things i just do, having indwelling or SPC's has been mentioned but im not a fan of the idea, im good with the way i do mine, put it in, do my business, take it out, and throw it away, single use, not much chance of infection etc. so at least for now i'm sticking with it.
I've had a super pubic since 2018. Prior to placement my life was horrible. I need a urethra replacement surgery which I don't want to have. My only thing is like right now after pulling it out by accident I am leaking for a week straight and my skin is raw. It will eventually heal but bed rest is needed.
Do want to say that sex with a super pubic wasn't too embarrassing. Do recommend securing it with tape or Stat-loc.
Honest and great info. Thanks
What a great informative and down to earth vid…. Im a Man ,,, I’ve had a Catheter stuck up my Co*k for 8 months with no end in site as to what’s happening. I can’t sexually relieve myself and intercourse is not poss… It’s painful to walk, sit or get up… I was never told about a Supra, but it seems like I could have some kind of sex life again…hopefully find a Partner too as the loneliness of being alone is Excruciatingly lonely and extremely frustrating… BRILLIANT INFO thanx
I have had my spc and was told nothing it’s been so scary I’m always sick and got told I’m a square peg in a round hole which was very upsetting. I’m also in a wheelchair so I find it doesn’t drain cos I’m always on my tummy. I’m 60 years old live in Australia and have no one to talk to about my situation
Is it normal to feel hardness around the catheter site? Not surface hardness, like a bump. More like underneath the surface?
Oh my God I got a super feed of catheter years ago. It was horrible. The pain was so bad after they did it . I also had a complication where your body creates like crystals in the track and they would stick to the catheter and when they would pull it out, it would rip it away. It was excruciatingly painful. I had a problem, and I went to the hospital for a test, and they radiologist exploded the balloon in my abdomen, and I was crying and in a fetal position and it absolute at me and they sent me home and I got to my driveway and the catheter fell out because they exploded it, I called the doctor and they’re like 45 minutes To get to this hospital that was across town because the track will close. For whatever reason the never heard of this would not take me seriously by the time I got there they were waiting outside. They wrote me into the ER. They told me it’s too late to go to the operating room, I had like people jump on top of me they pushed it through by abdomen with some type of instrument that was extremely painful. They literally read it with me away, kind of and I can remember the nurse saying just wait a second. Let me go get her before you do it and they didn’t..
I also was at work and I had trouble with the leg bags. They kept falling down and it was embarrassing as hell I did up for the plugs though if anybody is doing this, I suggest you do the plugs with a clamp and I eventually did learn how to sell and I am so glad I did, compact Klass compact catheters they look like I just shove them in my pocket. They’re perfect. They’re not too soft. Not too hard. They have special lubricant on them already. Definitely definitely try. Them
I use teleflex am indwelling at the moment waiting hopefully to have supapubic
How soon after surgery did you start twisting your catheter? Do you just twist it between your fingers? Does it twist around totally or does it twist and return back to how it was?
Hello, so i started gently twisting it about a month before my first tube change, you must let the tract heal. you will feel resistance if you twist it too far, listen to your body
Very useful except for the language dialect challenge. Quite beautiful. But amazingly helpful! Thank you 💞
Hello i'm glad you found it helpful, i'm so sorry there was a language barrier :( x
What kind of clothes can you wear with a suprapubic catheter? I’m getting one on the 14th
I've had my catheter for 25 years and what they don't tell you is that accidents can still happen! Rare but it still happens
Do you get bladder spasms? I tried a SPC and my doctor said my spasms were the worst she has seen in her entire career. I did the urodynamic study twice now and the spasms literally went off the charts. I also had pelvic pain especially while sitting. I ended up getting it removed and going back to the regular Foley catheter. For the spasms, I take oxybutynin and I get Botox injections directly into my bladder. Even with all that, I still have the spasms. Ugh, it’s frustrating. Does anyone in this comment section have advise on the best type of clothing to wear with a leg bag on? Sorry for all the questions but, I don’t know anyone with a catheter. Btw, I have a neurogenic bladder due to small fiber neuropathy and autonomic dysfunction. Thank you for anyone that can help me. 💜💐
I have had my SPC for about six months, I had two strokes 20 years ago and my bladder continued to get weaker and weaker. I also have a neurogenic bladder due to the strokes. My bladder spasms are ridiculous and so very painful, and I can’t seem to get my doctor to understand how devastating this is. No oral medication has helped and now I am pursuing Botox but my urologist is three hours away by car and that kind of bothers me… I pee my pants continually every day. Luckily at night while I’m asleep this doesn’t happen.
@@tashaallen9609 Tasha I completely understand how bad bladder spasms can get and I normally pee because of the spasms too. I get Botox injections every 3 months and it’s normally around 20-25 injections directly into you bladder. Don’t let them do it in the office. Get them to do it under general anesthesia. For me, I have an increase in spasms after the Botox, but it’s just your bladder healing itself from the trauma of the injections. I was switched from Oxybutynin to Myrbetriq (not sure of spelling.) If your urologist doesn’t understand how painful bladder spasms are, you may need to find another doctor closer to home and affiliated with a hospital. My urologist described bladder spasms pain as it feels like you are giving birth. I was not able to have kids, but I just know it hurts so incredibly bad. Most times I will not have bladder spasms at night however last night was bad for me. They kept going and going. I didn’t get to bed until 3am. I hope you are able to get Botox and a change of medicine might help. Wishing you the best! -Tina
Have you tried pelvic floor therapy? It may help. I don't have this issue but the physical Therapist/physio Therapist who are trained in it help with strengthening your bladder.
@@user-tc3iv2fe1d No, I haven’t tried pelvic floor therapy. I have a neurogenic bladder. Do you think it would help with a condition such as mine? My neurogenic bladder is caused by a disease called small fiber neuropathy.
I cannot thank you enough! I’ve had mine about 7 weeks now but tonight it is clogged. I’m scared. Can you or have you done a video on this subject?
It all began when a urologist told me she can help my incontinence issue with a procedure called “Bulkamid” I was not real sold on the idea but trusted the Dr. Long story short? It caused my urine to back up into my kidneys. I ended up in the hospital fighting 4 different infections and almost died. IF I am ever uncomfortable with something a Dr suggests again, not only will I do my research but I will refuse the procedure. That one lil procedure almost cost me my life and now I am ruined for life! Having said this, you do give me hope! I’m so thankful you did this video.
Thank you so much you did a wonderful job explaining this. Mine was placed on emergency basis and it was a nightmare. I was wide awake and full of scar tissue due to radiation treatments. (I survived cancer 💪🏼) When they tried to place it and literally had to pound it in! It took one and a half hours to get it in. Thank God it finally got placed.
Thanks again for this important information. ❤
You are so helpful thanks. Jeannie x 🎉
I get mine this coming Tuesday and I’m terrified and scared bc I’m going in a twilight
I’ve had twilight for other procedures lovely, and you honestly won’t feel it, keep calm, you’ve got this x
Thanks for this helpful video. I change my SPC with no pain relief other than the local anaesthetic in the lubricant. I'm thinking of asking if I can try entinox and am ewondering if you had to argue a case for this? Do you have the Entinox at home?
Thanks for the great information 🙂
You are welcome, glad i could help
Hi how do you secure your spc? I had mine placed on Wednesday and it’s below my pant line so am struggling with how to secure it. I’m currently using two leg straps like I did with my indwelling catheter but I get catching the bit before the first leg strap if that makes sense? Xx
I used kind of medical duct tape. Really hard to pull off the skin so I felt secure. Problem with that was it made my skin underneath so itchy I wanted to scratch it with a cheese grater. Insanely itchy for me. Maybe I had sensitivity to it.
What is a high assist and what is the thing you say to ask for before a tube change please? Loved one just got one.
it's called hyacyst... and ask for gas and air, best of luck
What is high assist or hyacinth?
Thank.u
Hi this was very helpful. Im asking for a mate of mine whos having a suprapubic catheter placed due to having a urethral stricture. Hes a bodybuilder and wants to know whether he could continue lifting heavy weights because he was told he may have the catheter for quite a long time and because hes trained for a long time he is able to lift quite heavy and light weights dont affect his muscle growth.
I don’t personally lift weights, however I do work out! I cannot see why he wouldnt be able to- but I recommend confirming with a medical professional, as well as letting his body heal first! My spc doesn’t affect my day to day life
Tell him not to work out for a while if he's doing a surgery like urethraplasty or urethrotomy..he should take rest for 6 weeks or as advised by his doctor
@@berro2025I'm not sure whether he's going for a urethroplasty however he was told that they may perform a dilation procedure on him first but that's probably in a few months time. He can still workout after 2 weeks no? He did have the catheter before and noticed that he was able to return back to his normal workout routine in just 2 weeks as 6 weeks will result in severe muscle mass loss.
Do you have issues with your catheter clogging up or have you had that problem with your catheter no pee in drain bag bag 15:22
I want to know that if you fear from other form of Catheter can we get suprapubic catheter?? Just because of fear.
Hello, I’ll be honest I was worried to begin with, however it’s been life changing for me x
I’m scared get my spc
Do you find a lot of pain with your super pubic? I’m considering this but I have full sensation because I have cerebral palsy so I’m a little concerned about pain at the insertion site. Any insight? Thanks for your time and your video.
Hello, honestly I forget Flo is there most of the time. The site itself does not hurt, if you get a site infection then it can feel irritated, but i've only had 3 in the last two years- two of which was because of tubie pads and gauze- i now do not wear them at all!
Only 'pain' i associate with my SPC are spasms, but a good antispasmotic and hyacyst sorts that. I have full sensation of my bladder- infact mine has even more sensation as its an overactive bladder, and honestly its not bad at all. Also my brother has CP!
Feel free to ask any questions
@@justtricky6352 wow thank you for your reply. It been a hard discussion to make I think I am going to for . It sounds a lot easier to deal with on a day to day basis then interment straight cath. ( for me up to 8 times a day) . I hard to find non SCI user’s on line with a full sensation.
Hopping it give me my quality of life back!
People seen to like to not share good medical procedures out comes just the bad online.
Can I ask what products you use?
And howoften do you get the tube changed?
Is there a lot pain with that?
I get Botox in my blater every 6 months for spasms it helps a lot.
Thanks again
@@justtricky6352 One more question I know there’s 1 million sorry for the long post can you swim with it if you close the valve? Hot tub? Bathtub?
@@mattm1686 I fully agree! I promised myself that i would show the good the bad and the ugly, so you will ALWAYS receive the truth from me.
As i said i have full sensation, if not more sensation- being autistic as well as having an overactive bladder- the game changer for me was hyacyst, its an alternative to botox, and much more manageable.
i will do a video about my operation soon.
I get Flo changed every 4-5 weeks, this literally changes person to person, you'll soon learn what time frame is better for you!
As for pain i will do a whole video on it, but it is no where near as bad as the horror stories out there, so try not to worry!
I have done a video on basic SPC supplies- all of which i use 24/7 and swear by.
Never say sorry for asking questions Matt! i am here to offer you guys as much information as possible. If it would help i'll do a Q&A with everyones questions, that way i can go into detail.
You can go swimming with a SPC- you can use a flipflo valve, a leg bag or a belly bag- its totally up to you, and what you feel comfortable with.
Hot tub I have heard mixed opinions about... so i personally avoid it, but if im honest i cannot see it being a major issue. Bathtub is a 1000% a yes! start off with luke warm water, and no products in the bath- so no bathbombs etc as this can irritate your site.
i will do a Q&A ASAP so i can go into detail, thank you for inspiring that video Matt
I keep hearing about the catheter coming out, how is that prevented?
Hello i've had my spc for nearly three years and it has never came out, they have a balloon to stop that from happening
How long was ur recovery getting my placed on Wednesday xx
Took me roughly 6 weeks how r u doing?
Hey I have a question are you available?
Do you have any more info. I am new to this.
You can get UTI very often, but still will not change for nothing my SPC. It gave me independence.
Hello. I was wondering if I can keep in touch with you as I really need support ❤️ as I am getting a superpubic catheter and I don’t want too be on my own? Xxx
Hello Catherine, of course you can! Best place to reach me is on instagram dm's, instagram tag is- just_trickyy xxx
@@justtricky6352 I just followed you and msg you on Instagram xxx
@@catherinegrant4441 I've replied beautiful xx
Hi Catherine I’m thinking of getting one Also getting really tired of the whole intermittent catheterization thing It’s really hard to find people with this procedure online so I’m thrilled i found a couple of people anyway I hope it helps me because at this point it’s all really affecting my quality of life I don’t know if you read my long post up a little bit on this page it talks about why I’m considering it. I haveCerebral palsy .It’s hard to find other adults with CP on the Internet it focuses a lot on kids and there aren’t a lot of people with CP I guess with a super pubic. Or maybe they don’t just talk about it much I’m hoping to get mine done in the next few months. When I do I will definitely update have a great day!
Catherine.....support is always great I can tell you
Blessings in an abundance of the faith. I salute you. 😘🙏Grace and peace be unto you and to this place. Thank you. God bless you. 😊Will you believe and receive Jesus Christ as your LORD and personal saviour??? I do. 😊
They don’t tell you anything