Super Supra Pubic Catheters
I hear people say Super but it is Supra Pubic Catheter. I have had an SPC for 16 years now and it has mostly been super. There is not much first hand info on the net so I will share my personal experience. Supra pubic catheters are a method of bladder management. It is a fairly simple procedure usually performed under a general anesthetic.
An incision was made about three inches below the belly button and a small hole is poked in the bladder. At this point, a catheter is inserted. It is held inside the bladder by plugging a syringe onto the catheter port and inflating a 5 to 40cc balloon with sterile water. The syringe is unplugged and a drainage bag is connected to the catheter flange. Usually the site (incision point) is low enough to hide below your pants belt line. It took three weeks for my supra pubic catheters site to settle and stop bleeding. I no longer keep it covered with any type of dressing.
With supra pubic catheters you must always keep a catheter in place. Your bladder can heal very quickly. In as little as ten minutes without a catheter in, you may not be able to get one in. Your body treats a suprapubic catheter as a foreign object. Forming a tube from stomach wall to bladder. Always trying to expel the foreign object, the catheter site never totally heals. It will always require a little cleaning. We use an alcohol wipe each morning and night. I’d much rather my carer clean around the super pubic catheters site than the pointy end of business (I’ll call him Sarge). Especially when your primary carer is a family member.
Changing Supra Pubic Catheters
Silicone Foley supra pubic catheters like these above are good for three months. I change mine every two months. Even then it often requires a little tug to remove. Some rotate their supra pubic catheters frequently to keep them free from sticking. This can cause leakage so I don’t do it.
Sterilize all equipment and around the catheter site. Deflate the old catheter balloon by firmly plugging an empty 10 cc syringe onto the supra pubic catheters port and drawing back. Remove the catheter taking note of how far it was inserted. So then you will know how far to push the new one in. Lubricate and insert the new catheter, then inflate the balloon. It should slip back a little to rest against the bladder wall. Holding the syringe plunger depressed, remove it and plug a new clean drainage device onto catheter flange.
You might like to check our 10 step guide on changing supra pubic catheters.
We once pushed my catheter in to far, right through the bladder and half way out my urethra. When we inflated the balloon it ruptured my urethra. Sarge was wounded by friendly fire! I bled from the penis for three days. The same can happen if it’s not in far enough. A little bleeding is common after a change or trauma (yanking on the catheter) but any bleeding should stop quickly.
Plug a leg bag or whatever drainage receptacle you prefer. I use a 16fr gauge Silicone Foley catheter with a 4-Sure 2000 cc overnight drain bag in a cover slip hung up under my power wheelchair. The 4-Sure is emptied morning and night, changed weekly. The boys get jealous when we have a session at the pub. They run back and forth to the bathroom while I don’t need to go at all. Check and top up the amount of sterile water in the supra pubic catheters balloon monthly. Some osmosis can occur in time and you don’t want the catheter falling out when asleep.
Lifestyles Diet Flying Sex and Swimming
Drinking is essential with Supra Pubic Catheters. It’s recommended you drink at least 3 liters daily to keep sediment levels down and the catheter eyelets clear. A lower urinary pH can be of benefit in reducing sediment and bacteria causing UTI’s. Bacteria don’t like acidic urine. Some pH lowering drinks and those of general benefit to supra pubic catheters are; cranberry juice, coffee, naturally brewed beer, buttermilk, wine, green tea, colloidal silver, distilled and filtered water.
Diet is unrestricted. You can eat anything you like. Some foods that lower urinary pH and help to reduce urinary tract infection are; beef, berry juices, corn, corn silk, eggs, fermented milk products (yogurt), fish, fowl, goldenseal, grape seed extract, gravy, horsetail, marshmallow root, probiotics, sour cream and whole grains. Avoid processed foods and artificial sweeteners. Please keep in mind it is all about balance. A healthy pH range is between 6.5 and 8.0.
Flying is no problem though be aware silicone slightly expands at 20 000 ft. Some tell me they like to use a smaller gauge catheter on international flights. I have never tried this. I fear I would be soaked in pee before I even got on-board the plane. I have flown many times without making any changes to my daily use of SPC. I’ve been in gliders, stunt planes, across the country and on international flights. I’ve never had a problem. I do suggest reducing fluid intake. If you can’t, or the free booze is too tempting, ask the staff if you can pee in a bottle rather than trying to get to the bathroom.
Sex is the main reason I went for Super Pubic Catheters. How can I put this… Sarge is always battle ready, free to stand to attention at anytime. No having to fold an indwelling catheter back and cover with condom. No having to do a quick self catheter drain to prevent leaking pee during sex. I’m good to go anytime. Now I just need to find someone to have sex with! Haha. A friend tapes her supra pubic catheters down to her side during sex. It’s a good tip if you like it rough, your partner is worried about hurting you, or you or your partner are turned off by the sight of a suprapubic catheter. You can tape it down.
Swimming is not a problem. Disconnect your drainage device and press a stent (sterile cone shaped stopper, can use anything really) into the catheter and splash on in. Avoid drinking to much before and during swimming. If for some reason the urine cannot be drained via the suprapubic catheter you will usually bypass. The sphincter muscle which controls urination can only hold so much pressure before it will leak and you go the old fashioned way. That is a good thing! While it is inconvenient at times it acts as a safety valve. When urine can’t escape it backs up into your kidneys and will nearly always cause kidney infections (renal sepsis can be life threatening).
Sleeping puts your bladder into a dormant state, yes it sleeps too. Sleep on your back, side or front as long as it doesn’t kink the suprapubic catheter or tubing. Having a large drink just prior to sleeping will help your urine remain clear overnight. Keep your tubing and drainage device lower than your bladder. I clip the tubing full of urine onto my bottom sheet so it can’t pull on my catheter. A quick look around this web site will show you, quadriplegia and supra pubic catheters don’t prevent me from living a happy full and active life.
Sediment and Urinary Tract Infection Prevention
You will never completely stop Urinary Tract Infections (UTI). Anytime you have broken skin you’re vulnerable to bad bacteria, especially when you have a suprapubic catheter pointing the way in. Good hygiene is very important. I suffer less than one UTI/yr. The only indicators are that my urine has a stronger odor and is darker in color. Other quadriplegics shake, shiver, sweat, suffer headaches, blotchy skin or possibly display autonomic dysreflexia symptoms. Females seem to be more prone to adverse reactions to UTI.
The latest research suggests drinking large amounts of water to flush the infection through works as fast as antibiotics. UTI can grow from sediment so keeping sediment levels down is paramount. Cranberry products, corn silk, naturally brewed beer, and wine are also good UTI preventatives (see Diet above for more). I have a few beers near everyday and haven’t needed anti-sediment medicines for a number of years now.
Infections at one time were so frequent we had to change my Super Pubic Catheter every two weeks. Bacteria grows on sediment and can build up blocking the catheter’s draining eyelet’s. We would perform a bladder washout daily. Taking a large 50cc syringe and sterile bottled water (or cooled boiled water) we would push the fluid in and out to “flush” the catheter. I don’t recommend frequent bladder wash-outs. It’s much better to cure the sediment and UTI problem.
The catheter insertion point (site) itself is also at risk of infection. If the super pubic catheters site becomes red, warm to touch, crusty, tingles, smells bad and/or is pusy you probably have a site infection. A doctor can take a swab to confirm. Keep hair trimmed back away from the site as it promotes bacteria. Exposure to the sun, saltwater baths, cleaning with an alcohol wipe morning and night, keeping it dry and with good air flow, will all help avoid site infections.
Silver is a highly effective antibacterial substance which can be applied to various types of catheters. Multiple studies have suggested that silicone urethral catheters coated with hydrogel and silver salts reduce the risk of developing bacteriuria. Specifically, silver alloy catheters (coated on both internal and external surfaces) were shown to provide a greater than 3x reduction in the development of catheter-associated bacteriuria over silver oxide (coated on the external surface only), silicone Foley, and standard laytex catheters respectively. Silver alloy catheters cost around $5 more than standard laytex catheters but if you find you are prone to urinary tract infections they are worth trialing.
UTI Medications and Drugs of Benefit
Hiprex tablets (Mandelamine) Urex or Ural the anti-infection drink can help. Hiprex is a pro-drug absorbed from the gut passing into the urine where it’s hydrolysed to formaldehyde. Formaldehyde causes the breakdown of proteins/sediment essential to bacteria. However this only occurs if urinary pH is less than 5.5 acidic which is considered an unhealthy level. It’s a big pill to swallow and tastes like horse piss but they work. They recommended twice daily but one every three days was enough for me.
You may like to try D-Mannose or Ethical Nutrients Urinary Tract Support (in Aus) and Probiotic supplements (see Diet above for more). Everybody produces sediment it’s just that “regular” people don’t notice it. Tell them to pee into a jar and wait 6 hours, they’ll see sediment.
With supra pubic catheters the bladder is constantly drained. Over time the bladder may contract or shrink (like any muscle does) frequently spasming. The condition is called an overactive bladder. Ditropan, Vesicare, Enablex and Detrol LA are bladder specific muscle relaxants. These are prescribed to help reduce spasm and shrinking. You can imagine how hard it would be to get a replacement catheter located correctly when your bladder is the size of a grape. Of course, please consult your doctor before taking any new medications.
Ceasing Use of Supra Pubic Catheters
No need to worry if supra pubic catheters are going to be the right type of bladder management for you. If for any reason you are unhappy with your SPC it is fully reversible. Just leave it out and resume your old method. Of course you must consult your doctor first. The last thing you want is a raging infection left trapped inside your body.
Basically you restrict fluid intake, remove the catheter, and cover the old site with a dressing. It is that simple. For best results we suggest you cease all activity for a few days to allow the site to heal. Keep the dressing clean. Also avoid showering and over-distending the bladder. Generally your bladder will seal itself off within 10-60 minutes. The suprapubic catheter site takes a few days to weeks to fully heal and will leave a small scar. Like I said however, please consult your doctor before you go leaving it out.
Kind Regards
Graham Streets
MSC Founder
Further Resources
- Care Guide: How To Care For Your Supra Pubic Catheters
- Queensland Health: What is a Suprapubic Catheter? PDF
- Spinal Injury Center: Managing your bladder with a suprapubic catheter
- Wikipedia: Suprapubic cystostomy
- Library of Congress Cataloging-in-Publication Data. Spinal cord injury / editor, Thomas N. Bryce; associate editors, Naomi Betesh. Rehabilitation medicine quick reference.
- I. Spinal Cord Wounds and injuries handbooks, manuals, etc. Bryce, Thomas N.
- II. Series: Rehabilitation medicine quick reference. [DNLM]
- III. Spinal Cord Injuries, rehabilitation handbooks: [WL 39 S757 2010] RD594.3.S6683 2010.
- Maki DG, Tambyah PA. Engineering out the risk of infection with urinary catheters. Emerging Infectious Diseases. 2001; 7:342-347.
- Karchmer TB, Giannetta ET, Muto CA, Strain BA, Farr BM. A randomized crossover study of silver-coated urinary catheters in hospitalized patients. Archives of Internal Medicine. 2000;160:3294-3298.
- Saint S, Veenstra DL, Sullivan SD, Chenoweth C, Fendrick AM. The potential clinical and economic benefits of silver alloy urinary catheters in preventing urinary tract infection. Archives of Internal Medicine. 2000; 160:2670-2675.
- Riley DK, Classen DC, Stevens LE, Burke JP. A large randomized clinical trial of a silver-impregnated urinary catheter: lack of efficacy and staphylococcal superinfection. The American Journal of Medicine. 1995;98:349-356.
- Newton T, Still JM, Law E. A comparison of the effect of early insertion of standard latex and silver-impregnated latex Foley catheters on urinary tract infections in burn patients. Infection Control and Hospital Epidemiology. 2002;23:217-218.
- Thomas L, Valainis G, Johnson J. A multi-site, cohort-matched trial of an anti infective urinary catheter. presented at Society for Healthcare Epidemiology of America (SHEA), April 7-9, 2002.
- Leape LL, Berwick DM, Bates DW. What practices will most improve patient safety? Evidence-based medicine meets patient safety. JAMA. 2002;288:501-507.
- Ahearn DG, Grace DT, Jennings MJ, Borazjani RN, Boles KJ, Rose LJ, Simmons RB, Ahanotu EN. Effects of Hydrogel/Silver Coatings on In Vitro Adhesion to Catheters of Bacteria Associated with Urinary Tract Infections. Current Microbiology. 2000;41:120-125.
- Liedberg H. Catheter induced urethral inflammatory reaction and urinary tract infection. An experimental and clinical study. Scandinavian Journal of Urology and Nephrology. 1989;Suppl. 124. BARDEX System with Anti-Infective Foley Catheter ®I.C.® 49629_0304-25.qxd 12/28/06 2:13 PM Page 1
Thank you much for your response Graham, it sounded common from what others were posting. We are seeking a 2nd opinion.
Thanx Grahm…
But my new doctor who is very renowned told me to change catheter in 3 months..earlier I used to get it changed every month..nd its 3rd time that the doctor asked me to get RGU MCU done in 3 months..is it ok ??
Also the docs said that I will go under urethoplasty …but after 6 months of accident..can they do it after 3 months of accident..
At my catheter insertion site some red flesh is there around the catherer and the pain is very severe sometime in that flesh ….
Also after accident I get rare partial erection and its very painful on left side of penis..nd adter 1 minute of erection ..penis gets soft ..nd in nightdalls ..semen goes directly in SPC instead of coming out from penis..
Wat may be te consequences? ?
I recently fell backwards out of my full size van in my power chair. I was wearing my seatbelt which pressed up against my spc during the fall. It didn’t bother me at the time. This was a week ago. Since then I have noticed what I perceived to be scar tissue increasing around the spc entry site. After rolling on my side last night during my bath, I noticed a fluid-filled sack has formed in the skin around the site. How concerned should I be about this? ER concerned, or schedule a dr appt concerned? And have any of you dealt with something like this before?
I recently had a urinalysis. My SPC has been in 3 weeks. The urinalysis cultured out to find Yeast. I was put on an anti fungal, Diflucan. Anyone have experience with a yeast infection in the bladder or heard of it? Is it common?
Thanks
Dennis
Hello,
Anyone has tried double balloon catheter and observed any difference from normal catheter. Does it reduce the formation of sediments and UTI. Anyone has used touchless intermittent catheter of Bard. Many thanks.
YA. l was fortunate in being able to get some Duette double balloon caths via a friend who was visiting her son in Florida. Near the company who make them. l contacted them and asked if l could have some samples. My friend collected them. Yesterday, my agency nurse came and fitted one for me. She had seen the youtube videos about the damage the old type foley caths cause to the bladder – so she was really excited to see the Duette. She said it is so obviously going to be a better safer option. So far, it feels very comfortable. No pain from spasms etc.
lt is time for a change in design of catheters.
Will let you know how l get on – usually l have my cath changed every 5 weeks. Any longer and the tip gets so crystallised that it becomes difficult to remove. Now with a balloon on the tip – l think this will not be a problem anymore.
Do hope they get the CE mark soon – so that they can be exported. They do have FDA approval. My nurse has specialised in incontinence care for 30yrs. And she trains many of the district nurses in a large area.
She has patients who experience many problems with their SPC’s and feels that the Duette could be the key to improve their lives.
I had my spc in Dec 2014. Overall other than uti, I did have an incident where I went into complete renal failure.
My wife changed my cath 2 days ago an now my penis burns and leaks urine I don’t know if she pushed in to far or what. Did this ever happen to anyone else,? Any suggestions?
Thanks!
Bob
When using any indwelling catheter for prolonged periods of time it is important to remember balloon osmosis does occur. It has been notices that after 3 weeks plus with Duette balloons can demonstrate a drop off of 1-3 CC so to add a few cc during the long install period is ok. Also no indwelling catheter is cleared for utilization longer than 30 days.
Regarding the Duette catheter no claims can be made respectful to other claims. But the intuitive nature of the product does support better outcomes. Experienced in the market to date is better outcomes across the board but nothing is 100%. It is a major step forward. Regarding the touchless product from Bard there are many similar product these also do not have any claims as to one being better than the other.
Hello tamper girl and Hello Greg,
Many thanks for your reply. I really appreciate the support and advice I get from you all. Please can you let me know if the duette catheter is only for females or can it be used by men too. I would like to use it but I have not been able to get one as yet.
Best regards,
YA
Hi YA,
The Duette is for replacement of the common Foley, so male or female may utilize the product. We are working on many different initiatives at Poiesis including more sizes and shapes. The CE Mark has been pushed back somewhat due to the high level of interest in the US currently.
Being a small company it is very difficult to attempt to be all things… The Foley has been around for so long that dogmas die very slow.
Appreciate the interest and this website. As I have been around to several different sites and always end up back here cause it is the most open and discussions and fact based materials.
I am still attempting to understand the “Australian pictures on the beach” and so is my wife!!! Have a great day.
Greg
Hi YA, What part of the world are you? l can’t believe my luck at being able to source some Duette Caths – via a friend visiting her son in Florida.
But the bad news is – he has sold his business and house and returned to UK.
Much to his mums delight – l have enough Duette’s to lsst me about 3yrs – so just hope the CE Mark is in place by then.
My nurse friend – works for an agency who have just been taken over by a US company – so she hopes this will make a difference as her and her present boss are very keen to get supplies of the Duette.
Hello Greg, hello tamper girl,
Many thanks for your reply. I live in Pakistan. I think they were asking for a doctor prescription and asked my doctor to contact them.
Do you recommend to take antibiotics after or before every catheter change? My nurse and doctor advises me take it every time I get my catheter changed. They are afraid of any complications that might be caused if I don’t take one.
If you can guide me how I can order the catheter please let me know. I have asked my friends in US to try and send it to me but they need a doctor’s prescription.
Many thanks,
YA
YA
The antibiotics question is very difficult and also very individual. This is perhaps best directed by your care providers. I will say that and there is much discussion respectful. This quote from the World Health Organization supports a more directed/specific reason for thier use:
The primary cause of the antimicrobial resistance has been largely attributed to the misuse of antibiotics, which are inappropriately prescribed and used too frequently and for too long. In order to overcome this potential crisis, the WHO has pleaded for medical innovation and has appealed to governments across the world to support research of antimicrobial resistance.
In your case this could also be identified. Meaning that perhaps antibiotics are being prescribed (broad spectrum)just in case you require. Additionally meaning for no particular type of bacteria, thus tossing a blanket over the entire issue. It would stand to reason that a resistance could present in time and at a time when you really do need their assistance. Something to think about for sure, but keeping in mind nobody but your care providers know your case. For example are you prone to infections do you have a weakened immune system etc etc.
I would ask my doctor and ensure I am confident and comfortable with the answer given.
Greg
Hello Greg,
Many thanks for your reply. Yes you are right and I agree with you. I am worried as I know I will make myself resistant to it. I will ask my doctor as it is definitely not good in the long run.
Please can you advise me how I can order the catheter or got any sample?
In my opinion it could me an advantage to have two balloons in a catheter as previously in a Foley catheter the catheter slips out if something happens to the balloon. Do you agree? ?
Best regards,
YA
YA,
Actually the availability of the Duette is only for US at this time. You may have seen some of my others posts. Sorry but it is definitely not because Poiesis would not like to see the Duette expressed across the World. But rules and procedures are just that.
About the two balloons and falling out. In this example Duette would not be any better than a Foley. Although not completely falling out as opposed to not draining. If the retention balloon does deflate the drainage eyes will now be located in the urethra, which could present a non-drainage event
So maybe not as bad because if it falls out altogether one has to totally re-insert etc.
Bob, sounds like the catheter is in too far. Just give it a slight pull. I once went to the ER with a blocked spc and kidney pain. While waiting to see the doctor I pulled on the catheter. It came out about 1/2″ inch. Within 60 seconds the bag was full, the pain was gone, and I was ready to leave. I have one ureter valve destroyed so if I have a blockage urine backs up into the kidney causing an infection and pain.
To those with granulated tissue or “proud flesh” at the stoma opening there is a prescription for a wound creme that will make the tissue go away and heal normally. It is called Clobetasol Propionate Cream USP, 0.05% (Emollient). Prescribed by my urologist. My wife applies it whenever she sees new granulation – maybe once or twice every 2 months or when needed.
Hii all
Its been 4.5 months that I am with superapubic catheter..
Here I read that we can fly to abroad also.so I went to bangkok for a mind fresh and really it was awesome (though I could not even do anything there, lol)
Thanx everyone for making this page so awesome.
I juss wanna know that why I have a pain in my anus whenever my urologist changes catheter…really I get unbearable pain in anus and that remains to 6 or 7 days..I use 16Fr 100% sillicon catheter.
Hii all
Its been 4.5 months that I am with superapubic catheter..
Here I read that we can fly to abroad also.so I went to bangkok for a mind fresh and it was awesome (though I could not even do anything there, lol)
Thanx everyone for making this page so awesome.
I juss wanna know that why I have a pain in my anus whenever my urologist changes catheter…really I get unbearable pain in anus and that remains to 6 or 7 days..I use 16Fr 100% sillicon catheter.
Absolutely place a catheter plug in and jump in the pool????????
An SPT is no reason to stop enjoying this wonderful planet!!!!
Greg
Hello Group
I’m an incomplete quad (I couldn’t even do that right!)and have been known o use a plug in social occasions. It comes in handy for providing urine specimens as well.
On another point. I live in Canada. I have contacted the US maker of the Poiesis Duette – not distributed in Canada. We’re not as lucky as you guys! If you check out their website they have a great video showing how theirs works vs. Foley. Very informative. I now have it being used as a training tool for the nurses who deal with it around here…All thanks to the contributors on this site!
Greg. Thx for the advice, it works, now all I have to contend with is a bit of blood at the site every day.
Just remember…Smile, you’ll confuse everyone.
Bob
Hi all
I have had a spc for 7+ weeks as part of a urological surgery. The spc is scheduled to be removed in a couple of days. Does anyone know how long it takes to heal?
Thanks
Dennis T
PS Thanks for your blog, it has been very helpful and very comforting!
Dennis, my husband just had his spc removed after 2 years and it took about a month to heal because there was a granuloma obstructing the closing. It’s an inflammation that is common in the hole where the catheter goes.
The doctor had said that the hole was supposed to heal in just a few days! I guess it would have if there had not been the granuloma. He had to go have it layered off. Then he was able to heal. I hope that helps.
Eugenia,
Thanks for the helpful information!
DennisT
Ny spc was removed 8 days ago. I thought the healing was going well until I saw the urologist yesterday. There was a inch long worm of skin on the top that he said was keeping it from healing. He put some silver on it to burn it off. Today when we changed the bandage there was a lot more redish brown seepage on the pad. Does this sound right? I thought these only took a couple days to heal.
Thanks for any feedback!
Dennis, please refer to my March 9 note about the wound healing creme: Clobetasol Propionate Cream USP, 0.05% (Emollient). It requires a prescription, but works wonders.
Bill G,
Thanks for the information!
Dennis
Can anyone tell me if the new Duette catheters come in female length, and is the sizing the same, ie. French 20. Are they carried by most US pharmacies, and is it just a matter of ordering them. Also, can anyone tell me the price.
To Trampergirl, thank you for sharing info about the belly bags. I have given up ordering them from the UK b/c of our very high postal rates, however, I have turned my leg bag sideways, and using a similar system as you describe, have been very successful in a sort of belly bag. I don’t notice the weight of the filling bag. but there is an obvious bulge in my stomach area. I’m looking forward to hot weather, I bought shorts for the first time in years.
MissPies,
The Duette caths l have are a bit longer then the usual female ones – l think they do all sizes so l should hope they would be able to supply you. With the bags – l use a 600ml bag which is quite large – but does not show as much as a smaller one which quickly looks bulging. l do empty often.
Never let it fill. But this size does allow me to stay the same at night -l do not link up to a night bag. Hated that. l keep an empty plastic bottle near me – just in case l do want to empty it at night without getting out of bed. Duette are based in Jupiter/Florida and might send you samples if you ask them.
Dennis,
l always keep spray bottles of Colloidal Silver [by it online] lt kills all known germs/infections better than anything. But is so natural that you can even spray it in your eyes!! Useful, for spraying all work surfaces too. Kills all the nasty hospital bugs as well. And l find it best not to put a cover over the site – let the air get to it. lnfections thrive in a warm damp condition.
I’m from birmingham, United kingdom.
I’m married to a lovely man who is parapelgic.
And it’s the best thing I ever did.
Re Duette availability and sizes. The Duette comes in 14,16,and 18Fr the overall length is the same as standard catheters. At one time we did have a Duette that was an inch shorter than regular catheters. All Duettes have a 10CC retention balloon and 5cc (true 5cc) bladder protection balloon.
If anyone is US based or secures their supplies through a US contact samples are available. I hope it is appreciated Poiesis Medical is attempting to put the Foley out of business so some of the larger catheter companies are playing hardball with us. If anyone would like to address the Duette please contact me through this forum or by email. We have learned that companies like Bard and Liberator Medical have made statements that are not true. For example Poiesis is back ordered in supplies, not the case at all.
Appreciate this forum and all the wonderful helpful information that is supplied. As stated before this forum more than any other has the most useful data that I have experienced.
Sincerely and if you are in the US please tell your acute care hospital that to do no harm should really mean something.
Greg
Hi Sara,
l am also from UK – and just south from you – near Alcester.
Greg, my SPC is 24Fr. Any chance that Poiesis will make larger ones? Sunny South Florida here.
Hi Bill,
A 24F is a large catheter I am thinking the large size may be reflective of sediment issues? We have moved individuals down from large catheters before but it does come with risk. If for any reason you want/need to go back up some dilation of the stoma may be required.
As for when a 24F would be brought on line first we are seeking temp sensing and Coude additions to the line and then larger sizes. Around first quarter of 2016 would be my best guess at this time.
I will keep you updated by this forum. Appreciate the interest getting hot early in FLA!!!
Greg
Can u shower like normal with the super a pubic catheter
Greg – l am finding the Duette catheter so much better than the foley type. Gone are the painful spasms – which caused me such discomfort. Now l realise the spasms were caused by the trauma of the catheter tip. Now l can almost forget all about having a SPC – what a difference.
l do wish – though that they were the shorter female length – as l do find l have to ‘arrange’ the extra length. l use a direct connect drainage bag so l do not have any tubing. This way – l can tie the bag with a lace around my waist – and tuck it all inside my underwear. lt is so easy and comfortable this way. No chance of the tubing getting kinked and blocking. And its virtually undetectable. Especially, with jeans/shorts/leggings. Still it is a small price to pay for having a better designed catheter – that actually works so well.
Dianna, Yes of course you can shower/bath/swim with a SPC. The information on Supra pubic catheters – at the top of this page – is very useful to new and old users of a SPC.
Trampergirl
Thank you for the kind words. What would be the desired length? Can you demonstrate what you stated above? How would the bag be placed and where to ensure drainage below bladder etc. I think I understand the direct connect and no extra tubing. An appropriately positioned photo would be welcome…
Sincerely,
Greg
Hii all
Its been almost 6 months with SPC(16Fr).
But whenever I masturbate , I get bladder spasm very badly after 30 minutes…and on the next 2 to 3 days while passing stool I get again spasm..why is it so?? (I have recovered from pelvis fracture)
Greg, l will try to explain my method – which l have used for over 20yrs with no problem. Now l always wear my bag on the left side – tap end near my hip. So it is easy to get to. The short catheter l just gently curve it towards the right and then to the left so it sits just below the stoma – then it connects directly into the bag. The bag is 600ml – so a good size – any smaller it will soon fill and become ‘obvious’. Having a 600ml bag allows me to spread it out and it does not show. l even stay the same at night. Never link up to a night bag. l found all that very demoralising – lf l do need to empty when in bed – l can easily use a plastic bottle. Same in a car on a long journey. The bags l use are Manfred Sauers 710.2204S if anyone is interested. They have a cotton-feel backing that sits comfy on the skin. My stretchy underwear – boxer style – do keep it all controlled with a elastic ribbon threaded through the eyelet holes on the top of the bag and tied around my waist.
Greg – l would say the female length cath is about 6 inches shorter than the Duettes that l have. l just have to make a bigger ‘curve’ to take up the length – BUT – it still works well.
Thank you for this…I’m 38 and having aSPC put in, and you helped relieve some of the concerns I had..keep it up, take care of business
Is there any females here that have a supra pubic catheter and they still leak from there private area I had my surgery on the 15th and still leak from private area really bad
Dianna,
There is – l think – two types of incontinence. URGE – is when you have loss of control – as so many people suffering with MS get. The other is STRESS – this is usually people who find – laughing/sneezing /coughing and running or jumping makes them wet their selves. Often women who have had children. Now – l have no control because of MS [33yrs of it] but l have found when l have had a bad cold/cough – l can still ‘wet’ when sneezing and coughing even with a SPC.
Another cause of wetting with a SPC – is when the little drainage eyelets of the catheter get blocked or sucked into the bladder wall. So do remember to give your cath a couple of turns daily – to re-site it. The foley type catheters often do this blocking because of the design. Especially when on permanent drain. lf you can use a flipflow valve it is not a problem as you can keep a certain amount of urine in the bladder – keeping the bladder inflated so the sides to not collapse onto the catheter tip. On permanent drain – the bladder resembles a deflated wrinkly balloon. This is where problems arise. lf you live in US – then fortunately you can get a Duette catheter with two balloons. One on the tip to avoid any damage to your bladder and avoid blocking. Look them up on youtube. You then can see what l am trying to tell you. l have been lucky and l have got a supply of Duette. And l cannot express enough how much better they are. l am so thrilled – can actually forget all about my SPC. Nurse came yesterday to change mine. Because she had been on holiday l had gone a week over. Usually, l have it changed every 5 weeks because of the build up of crystals on the end which make it difficult to remove. With the Duette – no gunk – no crystals – nothing on the tip – which proves that the bladder is already healthier.
Hope this helps.
Hi All
Can anyone advise whether they have a solution to bladder pain experienced with/from supra-pubic catheter?
My spinal cord injury at level c5/c6 resulted in the need for one. Its been 15 years and my bladder has reduced in size due to passive drainage.
There has to be a breakthrough.
Any feedback on above would be so appreciated.
Thanks,
Anthony
Anthony – read the above post re Duette catheters –
Regarding the pain issue, if there are persons out there who cannot obtain duette catheters (I come from the opposite side of the world and it isn’t easy), I had continual pain until I obtained a medication (available over the counter at pharmacies) called Hexamine Hippurate 1g, and I take it twice a day. A few days after commencing it, every bit of pain in my bladder, spasms and everything else, disappeared. I feel great now.
I looked it up and it didn’t seem to have any scary or otherwise side effects.
It might help anyone who can’t get their supply of catheters changed.
My urology providers ‘downunder’ aren’t one bit interested in using anything different.
Not sure if she deleted it, but I just got a notice with a person named “Elva” inquiring about Project Walk or other therapy centers……Elva, please respond to this if you’d like further input.
Haven’t been on here for a minute, but since I am, here’s a quick “hello” from me to all!! Greetings from the Caribbean!!
ADMIN EDIT: You mean this Rudolf?
Very sad to hear that individuals in the medical community urologists would not be interested in seeking out better products for their patients that may help with pain but would rather just give them medication which is not sustainable over the course of an entire life. Everything cannot be solved by simply giving somebody a pill.
Greg – l agree with you. lt is sad that urologists would rather mask the problem with a pill rather than change to a better designed product. All the time a foley catheter is used it is causing trauma and pain and this leads to uti’s and then more anti-biotics. Many people now find that the anti-biotics do not work as they have been using them too often. A severe UTI can lead to hospitalisation. And in some cases death. This happened to a dear friend of mine. She died 2 yrs ago. l often wish that l had known about the Duette then. Even though we are in UK – l think we could have found a way round it as l eventually did. My ‘contact’ a friends son in Jupiter Florida, has now sold up his business and house, and has moved back to UK.
My nurse is doing her best to spread the word about Duette – and l have given her the info and some samples for her to show her bosses. The firm she works for has been taken over by a US company – Hollister – l think she said.
l wish there was more we could do.
OK Greg and Trampergirl – I’m going to do something about this in this country! I know some people in USA (Montana) who may be able to help me get into Duettes and then I could show the urologists personally.
I was worried about taking medications too, but it is a relief to be free of pain. Whilst not actually an antibiotic in the full sense of the word, it is an antiseptic which probably results similarly in time.
Thanks for your input.
That is brilliant Ruth – we need to be proactive. l think too many of us do not stand up for ourselves.
Ruth, did you look a the youtube videos of foley catheter and Duette.
l think anyone seeing them can see the need for change.
Thanks Trampergirl – your comments on here always helpful. I use a Releen but am still going to search out how to get onto the Duette. I think the Foley and the Releen are much of a muchness.
I am 48 years, resides in the USA, I was injured when I was 22 years… I have now decided… People that are disable have to own some Businesses or be at the Top of their game to may be, have a woman to be them… As one man said, “NO MONEY, NO HONEY.”
Malachi
Hi, just wondering what if anyone can give me a bit of advice. I had my SPC changed four days ago and ever since I’ve got pain really bad across my stomach and down below. It’s like a burning pain and I can not relieve it at all. Thank you
Greg,my urologist typically used a large 24 or 26Fr catheter whenever he put in an SPC. I do have sedimentation, but since mine is changed every 2 weeks by my wife, it is not as much of a problem. I’m now experiencing blood in urine almost daily, so going to see the urologist next week. How can I get a couple of 18Ft Duette samples to show him? Thanks.
Bill,
If you are located in the US samples are available by contacting Poiesis through
the website. Outside the US has been delayed.
Regarding cath sizes it has been learned that large caths are typically place
when a new SP is placed. After smaller cath size may be utilized, sediment
would be the exception.
Bloody urine should be immediately check by a Urologist. All cath users should
be scoped each year, as a standard health protocol.
Sincerely,
Greg
Thanks, Greg. I am in contact with Charlene about a sample. I was scoped late last summer, but everything was good then. That is why I am going next week, before my next regularly scheduled visit.
Hello, so those of us at the underside of the world will just miss out on the duette catheters meanwhile? My friends in USA haven’t got anywhere trying to obtain some samples so far. Any further ideas would be welcome.
My husband is doing a business trip to America in 2 weeks, but Florida is thousands of miles from where he needs to go!
Best regards.
Ruth,
Why not contact Charlene at Poiesis – re Duette. And see if she could arrange for some samples to be sent to the address your husband will be staying at.
They are very helpful – l had a friend staying in Jupiter – last XMas – and she picked up some samples for me – and brought them back to UK.
Having had a SPC for 20 yrs. l now firmly believe that the Duette could well be the answer to so many of our problems caused by the foley catheters.
lf you google their website – you will see the contact email address to get in touch with Charlene.
Hi.
I have had my SPC placed for nearly 2 years. I have it permanently after contracting viral and bacterial meningitis 5 years ago after being bitten by a pet rat. I had a lot of trouble for the first year with chronic pain, discomfort and bladder spasms.
I was up to 3 ditrapn tablets for the spasms and on endone daily for pain from the constant rubbing of the catheter tip. i had constant infections as well. I was on long term antibiotics also.
I went on the search for a catheter that would suit me and reduce my pain and discomfort. after trying everything on the market and spending a fortune in doing so. 2 years later i came across one type of catheter that has no tip.
There are two companys that make these catheters but unfortunately i cant get access to one as they are not approved here in Australia yet i was lucky enough to get some free samples though to try.
After a few months i am happy to report that the new design duel balloon catheters not only works but is not any more expensive than the rest.
I am totally off pain relief have reduced spasm medication and dont take the antibiotics all the time anymore. I thought i would have issues with discomfort having two balloons in my small bladder but it made not difference. I have had amazing results and would recommend if you experience any of my sort of symptoms to give these a go. I am only young and feel free to get back out and enjoy my life again.
sorry i didnt read all the comments before posting.
Re the Duette that is the one i am using for the last few months. i contacted Greg at Poiesis and after some time he was great with sending me a few samples. I recommend them to anyone not just SPC uses having no tip to rub on the bladder wall makes so much sense. and works. Sadly i live in Australia and cant get any more. I never have blockage issues but i have no pain or bladder leakage when i have no infection and my infections are a lot less now too.
I want to get them approved here but have no idea how!?
there is also the Uromed double balloon and is easier to get.
Valora,
l do hope that the Duette gets its export licence soon – for everyones sake. l am lucky as l have enough for nearly 3yrs – although my district nurse has had a couple to try on patients who are suffering so much from the foley type. When a health professional can see the advantage of a Duette – l can see no reason why they should not become available to all.
fingers crossed.
Its been 7 months with my SPC.
But since last 2 weeks I am getting spasm regularily ..and there is one confirmed spasm while passing stool .
Daily in the evenings i feel urgency to pass stool, but ultimately that urgency results in spasm and no stool passes..
Its been 2months and 2 weeks that I had not got changed my 100% silicon catheter.
What should I do??
I am not able to sleep..
Got my first Duette catheter today. Went from a 24Fr to the 18Fr. Urologist scoped and saw where bleeding occurred due to the catheter tip. Now he wants to do a biopsy and cauterize the site to make sure it isn’t cancerous. He is 99% sure it isn’t. In a month he will decide whether to order Duette for my regular catheter. Thanks, Greg, for being on here and giving out information.
Please keep in touch!!!
My heart goes out to all the posts l read about how people are suffering pain and discomfort from their SPC. And not just from the type of catheter used – but also how the nurses/medical profession do not know how to change a catheter without causing trauma and upset. And the neglect – Catheters should be changed more often. l have mine changed every 5 weeks. But really 4/6 weeks is the norm. Even more often if there is infection.
l have had a SPC for 20yrs and it has been good – it has enabled me to live a better life as l have no control of my bladder at all. This is caused by my MS. But l have put up with lots of discomfort and pain with it – and l have put up with it – because without it my life would be so miserable.
Now l have the Duette Catheter – l realise l do not have to live like that anymore. And l firmly believe that most of the problems with SPC – we read on this site can be solved by changing the type of catheter to a dual balloon.
Sandy, i sugest you try the double balloon catheter, its proven to reduce, infection, irritation, tip rubbing and spasms.
I have being through hell and back trust me. i have tried every catheter on the market at great cost and the double balloon is the best of all. I have barely any spasms.
I use to explain the spasms as an intense orgasm.
was kind of fan in the beginning….lol
they are bad now when i get them and i now liken them to birthing contractions, they stop me in my tracks and i have to breath. can be embarrassing when your out. but the other catheter will help with this, it will not eliminate it but will certainly help.
I only have issues when i have an infection, which makes spasms more frequent and i get leaking from urethra.
Trampergirl, hit the nail on the head….100%
change to the double balloon catheter without tip. NO tip means not rubbing irritation, less infection, pain discomfort
and a happier person
Thanx a tonn valora and trampergirl, but the problem with me is that I am from India, and here duette catheters are not available….
May be I will go thru urethroplasty by next week or so….
I am very much tensed about my life after urethroplasty..I am just 25 ears of age and unmarried ..I have heard that urethroplasty decreases the sexual life ??.
And before urethroplasty these spasms are killing me ….
But I am tricking my mind by diverting it in any work….else if I sit idle my mind always thinks of spasms and I really get spasms then..
How can I get duette catheter??
Sandy have you tried looking at the uromed, its as good but only has one port, still has no tip and two balloons but the balloons are filled with the same port. i used this one before i tried the duette.
I prefer the duette but like you i cant get it here in Australia. Uromed you should be able to get.
Respectful to the uromed product and i have to be careful since Poiesis and the Duette would be viewed as a competitor. When designing the Duette we did review the possibility of a single port (since cost is always important). We sought to make the process of catheterization as similar to existing as possible. So this is why users fill the retention balloon first and then the second. This ensures if the user has performed the procedure correctly no adverse event can occur. The other reason was we wanted to ensure if individual users had different size bladders they could inflate “each” balloon to “their” individual comfort level. As most will know if a user on constant indwelling drainage is not using a valve to cycle the bladder it will shrink. So balloon adjustability is critical piece of the technology.
Additionally there is a clinical element we discovered why one balloon has to be be larger than the other. Lastly in bench top work we did not gain the confidence that each balloon would inflate as scripted. Many times one balloon would expand and the other would not, also over time fluid would migrate from one to the other depending on where the most pressure was/is located. However individual users experience may be different.
Respectful to outside US sales I truly wish the regulations were not what they are. The FDA is one of the most stringent regulatory bodies in the World you would think/believe that other Countries would view in such a manner that international sales could occur.
Greg, I have a question regarding the Duette. I am near Cincinnati, Ohio. I had a spc for 7 weeks, it was removed after my urethroplasty. It is highly possible that surgery did not take or one reason or another. Are Urologists in my area being educated about the Duette? Are duette’s representatives trying to encourage area urologists to give the Duette a try? There is a fairly large group in Cincinnati, The Urology Group, and I see one of their docs.
Thanks for your reply.
Greg,
I am 100% with you on everything about the differen ce between the buette and Uromed. Two ports r better as the ironed does loss fluid after a few weeks so topping up may be needed. if you are the same Greg that sent me samples of the Duette, I would like to again say thanks so much. As I know how desperate do.e of these patients can be to find solutions to their pain and discomfort I was offering another similar catheter that I found that works in a similar way.
Would be much better if the FTA would approve the Duette until then anything is bound to be better than nothing for some patients.
You must be just as frustrated as we are.
Dennis,
Every minute of every day we at Poesis are attempting to get the word out. It is difficult to change some of the dogmas that are out there, especially since the foley has been around for 80+ years. Further (at least in the US) just about all medical products are a contracted item that are bundled with many other products. The big companies do not all play nice and some of the care providers also lack empathy.
I experienced a conversation with a VA nurse out in CA who stated while she appreciated the advance in better care by using the Duette™ she stated if it was not on contract it would be a fight and not be worth her effort to try and bring the Duette in. Just glad our men and woman in the service do not have the same attitude!!!
You may give my contact to any Uro that would like to speak with me. Appreciate your interest and help. I did have a positive call with CR Bard the other day, so perhaps if they make the decision to partner International/all sales may occur much faster.
Greg Wiita
Cell 561-371-9052
l wonder if the urology experts ever read the posts in this and other forums.And – The MS societies forums where many sufferers have had or want to have a SPC.
Trouble is -so many of us just ‘put up’ with the pain and discomfort as we have NO CHOICE!!! —– until now. Put up and Shut up. Many of us not physically and mentally able to fight our corner. Easier to take meds for pain and spasms caused by the foley catheter.
l know l did – l excepted that this was how things were and that was that.
Now we must all shout – and shout out loud – do not suffer anymore in silence.
Would full page adverts in the health magazines – New Pathways MS-UK is a good one. lnforming people about the Duette and bringing to their attention how the foley cath damage the bladder wall – causing trauma and uti’s.
In reference to your conversation with the VA nurse, Greg, my urologist is with Univ of Miami. Part of the time he works with spinal cord vets at the Miami VA. The VA in Miami has begun using the Duette on some of their vets.If they are using it in S Florida at the VA, it can be used at other VA centers.
The driving force down in Miami Dr. Karin Zachow she has been wonderful. They order very sporadically. However since we are not “officially” on contract each purchasing person is only afford a certain spend amount on a credit card. We fought very hard at the Dallas VA and they are bringing us in for a major Pilot, so that will be great.
If you are not on the GSA entry is difficult but individual VAs can order but more work is required. This particular CA VA felt it was too much work for her to bother. I wonder if it was her or a family member that required medical care if she would try a little harder.
I had no success trying to get Duette samples to NZ. I had a nice but definite email from Charlene, No, they could not supply outside of USA. Then she rang my contact number in USA and said she would send them samples for me, with full instructions! I was just blown away at her kindness and compassion!
I see my urologist in a few days, and am taking him info from these posts. I have NO HOPE of NZ importing the Duette (we are 50 yrs behind other countries), but it would be worth making a trip to Florida to buy them, if that worked. Whether we are old or young, none of us like constant discomfort, and I have had pain since contracting polio as a young child.
You are so right, Tampergirl, most patients have no idea that they have a choice because they are not offered the information from their doctors. I am with Swan Valley Medical, a developer of a clinically proven, less invasive, safer alternative technique to placement SPC, especially for the neurogenic bladder patients. We realize that patients and urologists (in general) have no idea of the choices and benefits SPC offers, the differences in placement techniques, nor the options of catheters like Duette. We have been working with the MS Society on developing a informational white paper called, “You have a choice” for bladder management. We also work with urology nurse educators and neurologists to help inform. Dr. Miller at the University of Washington considers it a crime to place a foley in a female with MS (her patient focus), knowing that long term use will result in erosion of the urethra and injury to the bladder neck causing permanent leaking, requiring permanent closure of the urethra. Would like to work with Greg in development of educational exposure with the help of sites like this and informed patients like yourself to promote the beneficial new technologies SVM and Poesis have. I would welcome your critique on the linked informative flyer: http://www.swanvalleymedical.com/documents/Misplaced_Trust-150327.pdf
Hello to all. I live in Huntsville, AL, USA. I’m 80 years old and have Diabetes Type II. In April 2001 had a radical supra pubic prostatectomy. Everything came out alright (pun unavoidable) for two years. I had no need for pads. Then there was a slight but perceptible increase in consecutive PSA results. This led to a course of radiation around the bladder — pretty ouchy there at the end. Five years later (2008) I was declared cancer-free.
A few years later urination became extremely painful. My urologist decided to “scope”my bladder and take a look around. Usually “scoping” had lasted several minutes, but this time it was over in less than a minute. Scar tissue from the radiation had almost completely sealed off the bladder neck. The following morning he “zapped” the area around the bladder neck with a laser. He took some pictures and showed them to my wife, commenting that it was a wonder I could urinate at all.
After recovering from this, i was occasionally incontinent — just a little, but enough that I began wearing a single Depend underwear in lieu of my usual underwear — one a day.
In May-June of 2013 we spent three weeks in New Zealand (if you haven’t been there, put NZ at the top of your bucket list). I brought along enough Depends for one-per-day with a reserve of five “just in case.” We returned with the reserve intact. From here on things went downhill in a hurry.
In early August I lost the second toe on my left foot to cancer. Shortly after that I began waking up 4-5 times a night to urinate. Concurrently during the day Depends usage went to 2-3 between rising and going to bed. My urologist tried Mybetriq thinking that it would relax my bladder and calm the urge. Didn’t work.
Bottom line is that I became more and more incontinent. Depends had nominated me for their Hall of Fame. I was using 2-3 packages a week. I was becoming a zombie. Continuous sleep was virtually non-existent.
I mentioned this to my primary care physician and she said maybe a supra pubic catheter would solve my problem. She contacted my urologist, who concurred and set me up with his group’s incontinence specialist.
On 7 May, I got mine. With the loving assistance of my wonderful wife, I feel like a new man. The minor inconvenience of having to stay connected to collection bags and emptying them when they fill is liberating compared to the ordeal of the last two years.
On June 18th it’ll get replaced — and evaluated. If all goes well, in August we’ll be flying down to Australia to celebrate my 81st Birthday.
Thanks for your patience — if you got this far ;-)
Fritz
I found Fritz’s story interesting as coming from NZ although I am British and lived in the UK until I got married to my Kiwi husband.
Thank you for your praise of our country!
How to get long term supplies of Duette? I am very excited to get samples. Might fly out there to buy more? I showed my Urologist the pictures and he said he could see the benefits immediately. When I receive samples, he would like to see one, so that was positive. He is Asian and a very sweet man. I don’t think it will be easy to get them into NZ, we have ‘small country syndrome’.
Fritz,
Your attitude is inspirational! I had a urethroplasty 3 1/2 months ago and may be having some negative issues. I had a spc for 7 weeks before and after the surgery. I am probably looking at a spc if this repair fails. If you and everyone on this board can do it, then I can too. I am inspired!
Thank you all!
After a SPC has been removed and the stoma healed for several months, can a person have still have surgery to have another spc inserted?
From personal experience – yes you can have it done again. They usually place it very close to the first one. Although, l can not see why it cannot be just re-done in the original place. l suppose there might be scar-tissue that could cause a problem.
Thanks for you response Trampergirl!
Fritz,
We both came to the SPC world through the same path. Radiation of the prostate also closed my urethra and we had to find another way to drain the bladder. Mine was on May 6, 2011 and it has been working fine since then.
I also did the two years of various operations to try to open the urethra to have it close up again.
In case you haven’t looked at past posts to this site, I found the Rusch belly bag to be the better alternative to other options of urinary collection devices. I end up putting a cloth behind it to get the plastic bag and the belt off my skin.
Bill
After your urethra closed due to radiation, if I may ask, what kind of procedures were used to unsuccessfully reopen your urethra, urethraotomy, urethroplasty? I was wondering because I had an end to end urethroplasty almost 4 months ago and am questioning its viability. Thanks.
Had the seed implant done on my prostate 4 yrs. ago. Many complications. Had to have
an spc inserted July of 2014. Everything was great till March 2015. Since then I have
been in emergency 5 times from tube blockage and infection. I had an abcess on my
prostate which was found at the time of my tube being put in. They say the blockage is coming the residue from the abcess. Any help from anyone out there would be
greatly appreciated.
Thanks
Fritz,
As Bill has advised you – a belly bag will make life easier – who wants to go about with a heavy bag of pee strapped to their leg!!!!
l have had a SPC for 20yrs. And l use the short length cath and the bags l use are direct contact -no tubing. The bag fits straight onto the cath. The bags l use are made by Manfred Sauer. They are 600ml – cotton feel backing – so comfy on the skin. order no 710.2204s. l use a length of trainer lace or ribbon to slot through the eyelets and tie around my waist – easy – and so comfy. All held well inside some stretchy short style underwear. l can wear tight jeans/shorts etc with no trouble. The tap end is about on my hip – so easy to take out and empty. l even stay like this at night – Had no trouble with drainage – no blocking or kinking of tubes. And now that l am using the wonderful Duette catheters – no discomfort from spasms – and no uti’s caused by the trauma of the old type catheters.
Dennis,
Sorry I didn’t get back to you for a while. I guess I wasn’t paying enough attention to the comments. I had two different laser treatments to the urethra to try to open it up. And then I had a “cold knife” to try to do the same thing. All 3 opened me up. I leaked like an open water bottle for several months until the radiation caused growth that closed the urethra again. I discovered the Cunningham clamp that stopped the flow, but it was a little uncomfortable. I went through a lot of pads, catching what the clamp didn’t. Then as I closed up again, I had the challenge of hoping I could get something through the urethra to ease the bladder pressure. The SPC was a godsend to that scenario. I have adjusted well to the “new normal” of SPC maintenance, which is far better than the place I lived for 2 years.
Bill thanks for the response.
Hi All
Can anyone advise whether they experience Autonomic Dysreflexia whilst using the Duette supra-pubic catheter?
My spinal cord injury at level c5/c6 resulted in the need for one. Its been 15 years and my bladder has reduced in size due to passive drainage.
Any feedback on above would be so appreciated.
Thanks,
Anthony
l had to look up Autonomic Dysreflexia – and l can understand your concern after reading it. l use the Duette – mainly because it does not cause trauma to the bladder wall. So less chance of a UTI. And it does not get blocked up. So l suppose the question is – what catheters you are using now and how do you get on with them – are they silicone – as l know the latex ones do cause a reaction in most people.
lf they are both made from the same material – then l would have thought the Duette would be a good choice. But you must make sure first.
l have had a SPC on constant drain for over 20yrs. So l imagine mine is like a wrinkly deflated old balloon!!!!!!!
Hi, my husband is a T3/4 paraplegic, he has been in a wheelchair since 1979. About 10 years ago, he got a SPC and a colostomy. the colostomy was the best thing for bowel management, and he advises anyone to get it, you can manage everything on your own. Now, my problem,he got osteomyelitis, and he has had 2 hip disarticulations, no legs, no hips, and the wound does not want to heal, but I have noticed the SPC hole is getting very big, and I can see the balloon when I do wound care. What can I do, to correct this? the nurses say as long as it is not leaking, don’t mess with it, but I fear at night, when I am asleep, that it will come out. I thought about a butterfly bandage to try and “hold and push” the skin together at the opening, but I need some help. any ideas?
Just had a supra pubic put in a week ago… I find it annoying that I can’t roll over with the drainage bag and the site still hurts a lot. How long will it take for discomfort to go away???
Hi Susan, the fact you can see the balloon is rather alarming. Definately not something I would wait to see what happens. Butterfly band-aids and steri-strips may help but he, and you, need a longer term fix. The stomach wall is an inch thick in most cases and ages. To see the balloon means seek a uroligist’s help urgently. Most likely; 1: It is not draining properly building bladder pressure, pushing the balloon out. 2: A nasty infection is inhibiting healing. 3: Erosion from twisting the catheter. To be clear I am not a doctor, just an SPC user for 20 years. 4: Please seek professional medical advice.
I’ve had spc for about 2 years-due to ca of the prostate,Dr. had a rough time with the procedure–but it turned out fine.The problem is the mucus! It clogs up the opening of the bag and the slits in the catheter in my bladder resulting in a wet mess. The Dr. just recently had me to irragate by useing sterile water and vinegar solution daily, sometimes it works,sometimes not. I should increase my fluid intake!!!Any ideas?
Hi I came on this site by accident but so glad I did, great reading thanks. I had a spec fitted just less than a week ago and was discharged from the recovery room, no beds on the ward, so have had no advise on this. Can anyone please tell me how long the green discharge lasts for around the opening area please and also is it normal to wait 12 weeks for your 1st ca theta change, as have been reading above and average seems to be 5 weeks, in the UK by the way. Thanks
Hi,
I wonder if anyone could help, i am 23, I am having problems to urine for the past eight years and had to use catheters occasionally when that happens.
In the past two years my condition has gone worse and I can barely manage to urine and been using a catheter more then ever, each time it is more difficult to insert it as it just seems to narrow more each time and the pain is just unbearable.
I am thinking to have it done as well as I don’t think I have much more time to be able to urine by my own as my condition is only getting worse with time and I can’t bare it anymore.
Could anyone tell me how do I get it done, how much does it cost, how is it living this way, how is life after having it done, is it complicated on a flight, how painful is the surgery and how long does it take to recover completely, how difficult it is to cover it, is it something you have forever or It could also be temporary?
Emily, Have you seen a urologist that specializes in strictures? Strictures are more common in males. They are scar tissue that grows in the urethra that eventually restricts urine flow. Have you had an urologist look in your urethra with a cystoscope?