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
Hii all,
I am sandy,I met with an accident 10 months ago and got PFUDD (PELVIS FRACTURE URETHERAL DISTRACTION DISPLACEMENT), since then I was on SPC.
I got end to end urethroplasty on 05.08.2015(arnd 10 days before).everything is going fine .I have one SPC now and one PUC (catheter thru penis).
Yesternight I had nightfall kind of feeling and some drops of liquid (dont know whether urine or sperm) came out thru penis (though I have a catheter in it) and when I woke up in morning I saw blood in my urine(in the catheter which is in my penis). This happened to me second time.
Is there any issue of worry or I shud go to my doctor for this??
My urologist is planning to take the catheters out on 31.08.2015.
Please help.
Amanda Whittington.
Hi there, l am in UK – l had my SPC done about 25yrs ago. Lost all control of bladder [and bowels] caused by MS. [which l now have had for 33yrs] l was left to get on with my SPC – with know advice from the hospital that did it. ln fact l have never been back to see the urologist. Do you have a good district nurse attending to you – they will know how to look after the catheter site – and check on it. l found it best after a week or two to not cover it – bathe it in a salt-water solution and try to let the air get to it. Drink plenty of water of course to keep it all running smoothly. lf you keep putting dressings on it – the warm damp conditions you create is an ideal breeding ground for bacteria and fungal infections. This website is brilliant – and if you look at some of my older posts you will see how l wear/manage my catheter to suit my lifestyle.
Hi Sandy,
Im no doctor but i know that sometimes you can pull the catheter at night or any time and you could get bleeding. I have an SPC due to Meningitis complications and have being told by my specialist that a little blood from time to time is normal as long as it stops. also a bit or leaking through the penis or SPC can be normal. I have never had a problems with leaking unless i am having a change but i heard it can happen to people and be quite bad. bad enough for them to wear large pads over there SPC or in there pants.
I wouldnt be concerned unless the bleeding continues or you are in constant pain
hope this helps
Emily.
I would agree with Dennis that you definitely need a urologist who understands strictures do deal with the cause of your problems. But if he says that an SPc would be a solution to your particular issues, they are much better than the constant pain and uncertainty of dealing with strictures. Whether temporary or long range.
My mom has a SP tube. She is continuously having UTI’s and has now started having the urge to urinate frequently. She is getting up several times. during the night and will leak on herself and will urinate in the toilet. Urine will also be in her bag. She received Botox treatments to her bladder shortly after getting the Supra Tube. She is taking 15 mg of oxybutynin ER. daily. This has been very frustrating for her and my father. She is 78 years old. No real solutions from her doctor. Any suggestions?
have read this article on SPC and have found it very informative
thank you
This web site was a life saver for me. I now have had a SPC for two years and I am having very few problems after a few adjustments that my doctor and I worked together to attain. My SPC is now replaced every 6-8 weeks in the doctor’s office. I take a muscle relaxer, a pain pill just for the bladder and I take a little cannabis, so now my SPC is replaced painless and in the office.
I also have not experienced serious UTI as I irrigate my SPC daily with a formulated solution of gentamicin in normal saline 80mg/22ml. The first year each replacement was very painful and uncomfortable–I felt like I had to pee, painful spasms etc. Dr. Lorna Plaskon reduced the fluid in my SPC to 3CC and wow I felt normal. I wear a belly bag, do have Botox injections twice a year and now have a normal life. I feel very lucky and am cancer free!
The support and information from this web site gave me hope and the support to talk with my doctor about solving the problems I was encountering. Also I found out that I was not alone, my experiences were real and solvable. Thank you and thank you Dr. Plaskon
Thanks for the replay Dennis T,
I have been to a urologist who looked with a systoscope into the urethra,
They have done twice a surgery to wide the passage as they claimed that they have no idea what causes this narrowness. when the surgery failed once they asked me to come back to have another surgery.
So I had one more surgery which then failed again. They finally decided that I must be under stress that’s all, that is why I finally got those catheters in case I have an emergency like that again.
Of course everyone is a bit stressed, but that is definitely not why it is completely blocked, it is more then just stress. I got tired of dealing with doctors and I thought that maybe now I can live the rest of my life occasionally having to use the catheter, but now even that is not more a solution for me, so I must depend on something else, I don’t care anymore how, I just want to live a life that I no longer have to worry over basic things in every days life. I have just moved a country and started all over again with new doctors, hopefully they will have a solution for this, but since I lost my trust in doctors I am doing my own research as well.
So that is how I got into this website..
Emily,
What country are you in? Stress is a factor I am dealing with those issues as well. my urologist is having me see a physical therapist that specializes in pelvic floor muscle rehab. Which is uncommon for men but more common for issues women have. My physical therapist seems so knowledgeable about how the pelvic floor muscle contributes to elimination processes and has already helped me.
Hey Dennis,
I am living in Barcelona now.
Thanks Trampergirl, I have left mine uncovered as of yet I don’t have a district nurse that will do anything, they say they are not allowed to touch it until after the 1st change, which I am not due to have until October. I did spend a morning reading through the comments which I found very informative and they have helped me lots.
emily, perhaps your doc can prescribe 1 oxybutynin tablet to be taken an hour before your cath change; it relaxes the bladder and lower abdomen. alternatively, a small dose of valium 30 minutes before the cath change might also help.
I would love to hear some comments from anyone who has had botox injections in the bladder.
I have a spc cath. and my urologist is suggesting we also try this. Any input would be great
Thanks!
After removal of my 2 episodes of needing an sp tube for a month each time, I noticed constipation and difficulty defecating! Do sp tubes cause adhesions around the rectum years after their removal?
I feel like things are stuck and consistent with bowel or rectal adhesions.
Thank you for any help via email.
Sincerely,
Miles
Charlene from Poiesis very kindly sent samples of Duette, and I had no pain for the first month, the district nurses had difficulty and wrecked a few of the Duette catheters, but my Urologist found out why this was; he is very interested in the whole idea and how they work, and has arranged to teach my personal carer and the head district nurse how to manage inserting the Duette.
With the duette I have no bladder pain, no spasms, and no infections!! The nurses at the spinal hospital were very interested too, but they are not yet available in this part of the world. We keep hoping.
Any suggestions for dressing with a Foley. Unable to use leg back.
Ruth, I to was sent samples of the Duette and had the same amazing results. No spasms, no infections, off pain medication, I am comfortable all the time. My home buses also had problems inserting the Duette I think because the tips are much softer and bend easier, we overcome thieves by placing the catheter in the freezer an hour before inserting it, I found this really helped. I am also unable to get the here but where there is a will there was a way…I now happily use Duette catheters all the time and thank the company that makes them from t be bottom of my heart, because the Duette has changed my life for the better. Xx
Ruth, I to was sent samples of the Duette and had the same amazing results. No spasms, no infections, off pain medication, I am comfortable all the time. My home nurse also had problems inserting the Duette I think because the tips are much softer and bend easier, we overcome thieves by placing the catheter in the freezer an hour before inserting it, I found this really helped. I am also unable to get the here but where there is a will there was a way…I now happily use Duette catheters all the time and thank the company that makes them from t be bottom of my heart, because the Duette has changed my life for the better. Xx
Thank you for the advice on diet, I’m going to apply it to decrease my bladder infection.
Got rid of my suprapubic catheter I am now the proud owner of a stoma called Squirt. Had my op the 26th august they removed the bladder and did an urostomy. Still in post op pain and still recovering. They say 6 months for a full recovery. I am very pleased that I went ahead with the op. No more bladder pain, so no more wearing adult big nappies, and no more tubes. Still having post op issues. Fluid in the tummy going to be drained off next week. If they offer any of you this op consider it. It is freedom. I am looking to starting my new life and being a new me when I recover fully.
Im female and my sphincter goes into spasm and the hospital can only insert a catheter with the aid of entonox, so now after many catherters and just as many infections, they are talking about a supra pubic catheter, I’m terrified!!! Has anyone got the same problem? Is there anything else they can try before the spc is fitted??? Help pls!! And I’m looking into medicinal cannabis to try a herbal remedy first, anyone tried this method, advice pls!
Jojo,
Do not be terrified. The SPC has helped a lot of people (including me) lead a vastly more normal life than before it.
Here are some things to keep in mind:
1. The SPC is totally reversible. If for whatever reason, you decide it isn’t working for you, it can be removed and the bladder closes up. If you have had it in for a long period of time, some stitches might help the healing process.
2. It works really well for a number of people. I am not trying to minimize the trauma that changes are to some, but there are a lot of us out here living something way closer to normal than we were before. I do my own changes with a little help from my wife handing me things. And in between, I almost forget that I have it.
I have no knowledge of the current problem that you are having, but I have had an SPC since 2011 and I thank God for it every day, because I remember the trauma that I had before that.
BIll thankyou for replying to my message, your comments made alot of sense, I’m glad the spc is working for you, most of the other comments say its improved their quality of life, I don’t think I could change it myself, makes me cringe just the thought of it….lol I’m squimish!! But maybe after having it a while i mite ask to learn how to do it. Do u get a lot of infections? Coz everyone I have an in dwelling catheter I always got infections? Thanks again Bill and I wish u well. :)
Jojo,
I have had no infections since I got the SPC. I had a lot of them before that. I had mine changed at my urologist’s office for most of the first year. When I had the balloon lose its water the second time and the catheter fell out, I thought it was time to learn to do it myself. Don’t worry about that now. That may come after you get comfortable with it.
From time to time I get blood clots in my urine bag. If I’m careful my SPC gets blood in urine. Although my caregive is careful during transfers. Does anyone else get this. Could it be another infection?
Robert, could be infection, seeing blood is never good, best you get it checked out? And thanks again Bill, I have an indwelling catheter ATM…and guess what, yep another infection… Meh its all too much!
can someone give me a heads up on spasms and leaking through the urethra with an spc, does this usually mean infection or can there be other causes? thanks in advance.
Bonnie, The little eyelets on the catheter tip can easily get blocked – or ‘sucked’ into the wall of the bladder. This can cause a temporary blockage which causes you to ‘leak’ through the urethra. lt can also cause a spasm.
lt is always a good plan -to turn the catheter round several times every day – after a shower is a good time. And gently ease the cath in and out a little way. Just to make sure it is free. Also, giving the tubing a really good squeeze – this will cause a bit of a vacuum and help clear the eyelets.
We get quite a bit of debris in the bladder – which goes unnoticed – unless you have a SPC – and then you can see it build up in the tubing. Twisting the tubing will help clear it – or use a bladder wash-out – easily done in minutes.
lf you are in US – look up Duette catheters – made by Poiesis. You can see how they work on youtube – and also see the damage the old foley type can do. l have been using the Duette for about 10 months – and have none of the problems l had before.
Bonnie,
Hi to you. I’ll share my experience with you in the hope it can help you, remembering though that we are all different.
Also, if you are feeling unwell & have a fever & pain, or offensive urine, I suggest you go to the Clinic & have a urine check as you may have an infection. It is safer to be sure.
After years of incontinence, I had a SPC inserted in May 2014 for nerve damage as a result of a lower back injury in 1995. A Cauda Equina, Neurogenic Bladder, although I don’t have paralysis, I do have “saddle anaesthesia” & no control of my “functions”. I suffered excruciating spasms & bypassing via the urethra ever since.
I could tell when my catheter adhered to the bladder wall because the leg bag tubing would vibrate until the bladder started filling again & released the suction, & thence the outlet of the tube. It’s quite a startling experience & until my Nurse & Doctor saw it for themselves, my description of the sensation was actually doubted. Sometimes tiny bloody pieces of bladder wall can be seen in the drainage bag. (You can see this on the Poeisis video when the Cystoscopy is performed.)
I was not on any antispasmodic medication for the first few months, but was eventually started on Probanthine, at it’s highest level, because the bladder spasms were so debilitating. These settled the spasms to a reasonable level, but I still bypassed & often flooded as well. I had a great deal of sedimentation build up in the tubing which blocked the catheter & again, caused severe bypassing.
As a result, I had catheter changes every 2 weeks at least. So frequent changes is traumatising to the bladder & I was frustrated for a very long time & considered having the SPC removed & going back to wearing pads. The sediment is actually a lot of bacteria, which forms on the inside of the catheter. The body also reacts to the catheter as it’s a foreign body & irritant. I’ve only had one infection at the start. I am scrupulously clean & keep a sterile field when dealing with the catheter & tubing, & have worked with my Nurses to maintain this sterile barrier.
My Urologist referred me to his colleague who is a senior member of our city’s Bladder Clinic & an expert in difficult urinary cases. He suggested having a catheter washout twice weekly. This has worked to reduce sediment & extended catheterisation to 3 weeks.
I will add here that my Nurse is splendid at changing my SPC. He was taught by a Neurologist not to pull on the catheter to remove it & to leave 1/2 ml. of fluid in the balloon. This allows the balloon to relax & reshape itself thus reducing the trauma to the tissues, & spasms. You need to be patient & let it come out on its own. Takes 2 minutes or so.
The body actually expels the catheter itself & my Nurse simply rests it between two fingers to support it while it comes out. I have no further painfull spasms since this technique was started. An absolute blessing as I dreaded the change & the bleeding & the ubiquitous spasms.
I have been instructed to move my catheter in & out at the entry point an inch or so daily in the shower & not to twist it as this tears the bladder wall. The wall is very thin & easily damaged. Again, I refer you to the Poiesis video.
Probanthine was off the market for several weeks & after unsuccessfully trialling a different drug my Doctor put me on Colofac, which works on relaxing smooth muscle.
This has been a God send as my spasms have almost disappeared, only troubling me when sediment builds up before the catheter needs changing. I highly recommend it for it’s effectiveness, & I have decided not to remove the catheter. Again, everyone is affected differently so check with your Doctor.
I can also add another reason for spasm – pulling the catheter. This happens in my case if I move too fast when walking. The catheter chafes at the entry point & can cause bleeding too. But this settles.
Mylanta, which we use for indigestion, when applied around the SPC entry point with a surgically clean cotton swab, dries & stops the bleeding.
I hope this assists you Bonnie & anyone else out there.
Have you spoken to your urologist? I have Botox injections into my bladder in an effort to deal with bladder spasms. Could this be part of the problem Bonnie?
Leaking through a urethra could be a serious problem than just an infection, please Bonnie visit your urologist. I’ve had Spc now for 18yrs and I haven’t experienced leaking of that kind. Is there any pus in the leakage?
@Bonnie: I’ve had that problem w/ and w/out an infection. Usually minor and an infrequent occurrence. I agree w/ Trampergirl re blocked eyelet.
Hi everyone I turn 28 on Sunday and just had a spc put in place on October 20th I really don’t know much about the spc but I know that I’m still very sore and it hurts where they placed it at and I have had green puss around the site is this normal I chose to have the spc because I had a Foley cath for almost two years prior but constantly had infections. Also I’m I’m wondering if anyone had complications after get the spc because after my surgery my bp and oxygen were extremely then 3 days later I got hospitalized because I became spetik. I’m very worried about having the spc due to not being able to keep the sight as clean as it needs to be and not being able to keep it dry I am overweight so where my spc is skin covers it and oner more question can I actually sit down and take a bath every once in a while instead of having to shower all the time.
Thankyou all for your informed comments, very much appreciated, have spoken to the doc, no infection, I have taken your comments on board and things are on the improve.
I had a SPC put in after a cystoscopy revealed scar tissue in my urethra. Before the cystoscopy I went to the ER for intense bladder spasms and urine retention, and neither the ER docs or myself knew about the scar tissue yet. They tried to insert a normal catheter and it was the most pain I’ve ever felt in my life. I bled a huge amount from my penis and almost passed out. Following that awful ER visit, I saw a urologist who discovered the scar tissue and put in a SPC. The catheter definitely relieved my previous symptoms (retention and spasms) but brings on a whole new challenge of its own. The insertion site constantly pusses and tries to heal, which then forms hard scabs that poke and irritate my opening. I find blood clots in my urine bag, which is scary. My sleeping positions are limited because the bag needs to stay below you. I’m scheduled for a urethroplasty to remove the scar tissue, which means an additional catheter in my penis during recovery. This is a daily struggle but I look forward to recovery. I hope you all are doing well.
@ Joyce Barasch,
Hi, my urologist has suggested trying botox for my bladder spasms, could you please share your thoughts and results. I’m a bit nervous.
Thank you
Hi Bonnie, just some other reasons for passing through urethra instead of via spc…kinks in the tube aswell as positioning of the leg bag or night bag can result in stopping the flow ivia spc and, as it has to go somewhere it will route via spc. These types of leakages I have had many many times, especially the positioning..many times not obvious at all why it would not drain in that position, but as soon as it is moved it then drains so clearly that was the problem. Personally I also find that if I sit in my wheelchair but put my legs on a footstool, or lie down on sofa or bed with leg big still on jy leg, straight away I will pass via urethra. Confounded as to why it wont flow into spc in those scenarios..it neans I have to lob my leg bag out to dangle down..not good in company obviously, and a pain if just want to lie in the garden or rest on the bed to alleviate pain temporarily. Ref spasms, if you have constipation, any pain and many other reasons will result in spasms. I hope you get some answers as to what causes yours. All the best.
I had a SPC placed Nov 2. Here about week-and-a-half later I think I have it figured out from a “lifestyle” point of view. I am a male – 47, and have a physical job and love to hunt/fish/ATV with my daughter and wife..
I have severe urethal strictures due to radiation damage after prostate cancer treatment HDBrachy and EBRT (3/15). Painful urination and ejaculation. Urinary retention. Lots of ancillary issues.
No joke – I was very sore in the abdomen area for four days. Difficulty pooping due to oxy and antibiotics for couple of days – expect that!! Now barely a discomfort.
Take some time to figure out how you are going to live with this system if you are going to be active. I had to buy and experiment with things from Amazon to come up with a solution where walking and sleeping are not painful and all of the plumbing is comfortable to wear under my work clothes. One size does not fit all and figuring out your individual needs of how and where to secure the plumbing and bag is critical.
I might have this for a lifetime, maybe 6 months. Unknown. But I am healed enough now to where I can do my job (communications installation tech)and even went quail hunting this week.
Not real sure about changing it myself. Doctor’s don’t climb radio towers so maybe I will not change it myself. I will do what I do and they can do what they do!
After a horrible week of a penile catheter I knew I would not every do that again if other options were available. This was a solution for me in order to let the uretha heal from radiation damage and strictures..
Game changer for me was going to a local med supply store and going through the options of how to secure the tubing and make it comfortable to wear with the leg bag. What I did not find at the store I ordered from Amazon and after finding what works I ordered bulk from Amazon. It costs me about $4/day now to buy the tubing holder patches and stuff to make things secure and as comfortable as they can be.
I cannot emphasize how important it is to make the plumbing and parts fit your needs and take a couple of very lazy days to let your abdomen heal. After surgery it was very similar to appendectomy recovery, for me.
Hi Jessica
I had my SPC fitted in July this year and had green puss for just over 2 weeks as long as it does not smell it is ok and normal. Once the site has healed mine was about a month my urologist said I could go swimming and have a bath. I also have an overhang and am in a wheelchair but I just give a wipe along the crease everyday with a wet wipe and dab dry with tissue. I do sometimes get red around the site but just put a bit of canestan cream on and it settles. Not sure what country you are in i’m in england and have a very good nurse. She has ordered me flip flows and statlocks with no alcohol, both of which have been a god send. Good luck x
Hi Chas
Reference changing spc, here in England it is not recommended to change it yourself! I have a local district nurse that comes to the house to change it every 6 weeks. I think generally here they recommend changing the catheter every 12 weeks and spinal injury patients every 6 weeks.
Just another point which might not have been mentioned….I have been instructed to tape the spc tube above the entry site before going down to the leg bag. This aids flow and also is important to prevent damage as it is positioned in a downward manner inside. At least that is what I was told. I believe that is standard but might be worth checking your own.
This applies to anyone with soc.
I have been reading back on a few comments, they all make a whole lot of sense to me now, thank you all!, my next question is, Why are duette catheters not available in Australia? This does not make sense to me, it sounds like they would be so much better for most people,
Chas,
I also came to an SPC through Brachytherapy complications. I got my SPC in 2011 and it is definitely an improvement over the urethral stricture or opening of the passage and leaking routine.
I am also pretty active and have found the Rusch belly bag to give me a lot more flexibility for movement than the leg bag. I use a cloth between the belly bag and my skin for comfort. East Tennessee seems to be an efficient and reasonably priced supplier.
I wish you well as you adjust to your “new normal”.
Bill/Emmb:
I will rely on a Doc/nurse to change my SPC but will closely watch so heaven forbid an oopsie occurs when out in the woods I have the rudimentary skills to install one if necessary so I can get back to a professional which might be hours away.
Going on three weeks now and lots of new things learned. Tried the Uro underwear (wow – expensive!) with a pocket on the thigh for a legbag with mixed results. Great concept and very comfy but the reality is it needs some buttons near the top to keep the bag upright so it does not collapse within the pocket and try pulling on the SPC or with any weight it tries to sneak through the drain opening pulling further on the SPC.
I am working with a local seamstress to improve the concept. I am also including a large “buttonhole” about 1″ across on the underwear so the tubing can run vertically into the top of a bag instead of at a right angle as the Uro underwear tend to force.
I guess the take-home is to realize that 95% of the products out there are for folks who do not move around very much – either by choice or physical limitations. If you are active you have to develop your own solutions and rely on forums like this to get “the real story”.
When you have to cinch straps so tight they cut off circulation – something is wrong. Everything on a leg is tapered downward which causes everything to migrate the wrong way over the course of a day.
I will try a belly bag. Have not seen that option. I guess that is the really frustrating thing for me. You are sent from the Doc with the basic leg/bed gear and are left to research and discover on your own all of the tricks and tips and options. When you are new at this you truly do not know what the options are!
Luckily I am a communications installer and pretty handy so I have figured out how to make things work for me but after surviving all of my recent medical issues I refuse to let the SPC change my life. I hunt/fish/ATV year-round with my family so keeping active in these pursuits is critical to my MENTAL health – as sketchy as that may be.
Thanks to all who contribute here. Good info for all who might be dealing with this issue now or in the future. I will update in 8 weeks when we determine of this will be temporary or a permanent thing. I can truly say that I will not volunteer for any reconstruction at this point as the SPC is livable and will not impact my life significantly.
Valoa Smiles,
Strangely enough, I hadn’t seen your reply a month ago. The tip re the freezer sounds terrific! My nurses had overcome the problem by altering how they hold the Duette. Previously flipped the whole catheter onto sterile area, then picked it up and tried to insert it, with bad luck. The uro specialist showed them to hold it right at the tip, so it remains more rigid, instead of going like a floppy snake. This has been great.
I just dread to think what happens when my 18 mths supply of Duettes runs out – I guess we’ll make a trip to the States to obtain some more “samples” or perhaps they will be exporting by that time.
Charlene at Poisis is wonderful!
Chas, l bet all the animals you plan to hunt and kill are going ‘Whoopsy Doo’ – as they are so pleased that you are now more comfortable with your SPC. Heaven forbid that YOU should be in any pain.
As someone who has had a SPC for 22yrs – you will never hear me whinge about it.
By the way – l am watching a large Buzzard – silent and still – waiting to pounce on a rat- in next doors garden. He is doing a good job keeping them away from my hens. And it is illegal in UK to kill or trap Buzzards.
I’ve been changing my catheters by myself since I left hospital 18yrs now. My biggest problem is the poor quality catheters and urinary bags sold in our pharmacies in Uganda. The urinary bags aren’t sealed at the bottom and top end which makes them to leak immediately after installing them on the catheter. I just use super glue to seal them myself. This has exposed me to frequent infections.
Mutumba,
In the USA we are celebrating Thanksgiving, a day we set aside to be thankful for our blessings. When I read about your difficulty in obtaining the basic supplies that I take for granted, I realize that I should be much more thankful than I am.
Is it possible to send you some products from the USA?
Doris
Does anyone have suggestions for stopping the leaks around the tubing on my belly? I was a very active person before my bladder stopped working entirely, and I want to get back to leading a normal life.
My SPC leaks around the insertion point on my belly. In fact, it pours out like a faucet! My Urologist does not seem interested in doing anything about it, saying there is nothing he can do. He suggested bypassing the bladder and using a piece of my intestine to hook up to the kidneys and then to a Stoma on my belly and a bag.
I can not have major surgery because of complications. After a hysterectomy I had a blood clot in my leg (DVT) and while hospitalized with that, I had a second blood clot go to my lungs. There were other complications, and I spent several weeks in the hospital and took months to heal.
Thanks for suggestions on stopping the leaks.
I just had my SPC done about 2 weeks ago. I am having many bladder spasms that cause me to leak out the urethra. No fun. At night, though, I don’t seem to have this problem (maybe once or twice). Also, the site had been oozing some blood and today I noticed the site is red and sore. I question my decision to switch from a regular indwelling foley to this with all the leakage I have. I have to wear protection and am always worried about leaking. I am a 59 yr old female with a SCI 40 years.
I have my tube changed ( since 2011) monthly ar uroligist. It becomes a hassle when I go to Florida for the winter when I see another doctor.
I have always thought of changing it myself. (I was an engineer before retirement, so I should be able to do this change myself. I am a very young 67. Still bowl, golf and do more than most people, despite being told by doctors I am pushing the limits. But I will live my life and refuse to be a couch potato.
Where do I find a starting kit for all the stuff needed? I know a few nurses who should be able to show me how to do the procedure.
Thanks. Tom
Hi Tom
I live in England and my nurse has said she can show me. I don’t need to do it myself at the moment. But she has talked me through changing my spc just incase it ever comes out by accident and given me a spare. If you know a nurse who knows how to do it, I would get them to talk you through it as you change it yourself and they would just be on standby incase anything should go wrong, which it should’nt. Good luck
Tom, lf you read the info on this site. Very comprehensive instructions are there to assist you in changing your catheter yourself. l have had a SPC for 23yrs. And have it changed every 5 weeks – left any longer it becomes more difficult to remove. l am lucky enough to have the Duette catheters from Poiesis. They are so much better then the old foley type. Poiesis are at 1095 Jupiter Park Drive, Unit 10 Jupiter Florida 33458. l am in the UK – and just happened to have a friend staying at Jupiter – who kindly got a supply for me. They have two balloons. One on the tip – so it acts as a buffer preventing the drainage eyelets from getting sucked into the bladder wall. This is the main cause of blocking the flow. Look it up on youtube. You can see the damage the foley caths cause to the sensitive bladder wall. As an engineer you will understand it well.
All the best to you
From time to time I have LEAKAGE mainly at night,500-800 ml. My urologist h has said that it may a “positional” problem. He wants to do a “procedure”. I’m not sure that entails, but I would love to get good results. I had surgery for prostate prior to the SPC,so the insertion was a little tough,scar tissue,. I irrigate every night,sometimes twice a day. MY tube is usually changed by a home health nurse monthly,unless it is glogged.
Bill,
Thank you for caring, it is possible to send me some products through this address; To MUTUMBA EMMA, C/O NASSIMBWA JOSEPHINE, P.O BOX 5889 KAMPALA, UGANDA . I really appreciate your support, Thanks.
Trampergirl, How could I get some Belly Bags? I notice on Amazon how expensive they are – 30 pounds each plus postage. I have had no luck – Teleflex don’t supply N.Zealand, neither do the UK. I think you said you can get them on prescription?
The legbags we use here (only ones available) only hold 600 ml. and I always seem to be emptying mine. Presumably the belly bag fits ok with the Duette catheter, even with the longer tubing?
I’d be very grateful for any suggestions.
hi all
any advice would be helpful it would be great to hear your differentsolution on this matter right here goes I have spina bifida and have had a supra pubic catheter for 6 years now really great until my last change there were some resistance from the catheter it would not go in took 4 attempts any clues as to why it started resiisting
Can anyone help whether one measure most day of spirits such as brandy (great for general pain and muscle spasm which I suffer from) can make those of us with spcs more prone to infection. I have heard this from people who do NOT have an spc, but don’t know if it’s true or not.
If wine and beer are ok, would spirits (small amounts) be any different?
Thanks for any help on this subject.
Hi Ruth
I have not heard that spirits make us more prone to infection. If its any help I drink Vodka and diet coke and normally more than one shot in a night (not every night lol) and have not had an infection yet. Unless it is to do with to much sugar in the drinks, which I don’t have as am diabetic.
Hi everyone
I’ve had MS for 33 years and an SPC for 3 years and I’m struggling with all the usual problems – pain, spasms, bleeding, blockages etc – so imagine my joy at firstly, discovering this website and realizing I’m not alone and, secondly, that there’s an alternative catheter called a Duette that sounds like it might just be the answer to my prayers! I’m sorry to say, however, that my joy was short-lived upon discovering that they’re not available in the UK where I live and, worst of all, my medical team don’t seem to care! The fact that there is no UK licence gives them the perfect excuse to not pursue the matter further, even going so far as to say that they think the double balloon would increase my spasms. How do they know this? The answer is they don’t but they’re in no rush to find out :(
I see though that some of you who are also in the UK have managed to obtain the Duette and my question is ….. how?? I emailed Charlene who is very sweet and understood my problem, but said that the globalization of Duette catheters is a way off yet.
So, would anyone like to join me in trying to get some kind of trial set up in the UK? Or does anyone have any idea as to how we can get the medical community to at least look into using the Duette? I know the videos and information on the Poiesis website showing the damage that the Foley catheter does ought to galvanize someone in authority into action, but I fear this will not happen unless SPC users in the UK shout up. Anyone fancy shouting with me? TramperGirl, maybe?
Oh and Ruth and Amanda, regarding alcohol, I find the only thing that knocks the top off my spasms and pain is a large G&T and I don’t believe it’s increased my tendency to have UTI’s at all. I tell this to my GP, my Uro consultant, my Neuro consultant and the army of nurses who deal with me and they all just laugh. They all think it’s funny.
It’s not really though, is it?
I take Vesicare and I’ve had two rounds of Botox, the second of which made no difference at all. I think a catheter whose tip doesn’t keep spiking me would make a world of difference and increase my quality of life no end.
All I need is to get it ……..
Hello Lesley B.
I had negative replies from Charlene also, because they cannot send them globally, but finally I got a friend of ours in America to order them (Charlene knew this) and she sent samples, which the friend posted to Australasia, and no trouble with customs. The uro nurses couldn’t get them in, but my kind Uro specialist (Chinese & more broadminded!) did it and gave them a lesson. Freezing for a while was also a good tip for the nurses.
I have obtained Belly Bags – the cheapest by far for me were Fishpond Aus. (similar to Amazon but theirs were expensive). I am looking forward to receiving them.
I do still get the odd infection, but was prone to them before the spc.
Thanks for replies about alcohol – I’ll keep having my nip of brandy most nights. We have to have some perks don’t we?!
Do you know anyone in the States who could help you out?
I also had trouble getting hold of the Duette. I was sent a bunch of samples from Greg over a year ago and could not and would not be able to use anything else now. I spent my entire life saving trying to use the My US Address to them them sent to me in Australia. That all went pear shaped. In the end i asked an acquaintance in the US if she would possibly be able to receive and send them on for me. She was awesome, sadly i did lose 2 in the process i think with customs opening them but i got 18 through. I also did some research about NON TGA products and found that you can legally get small amounts of most product thought customs with no issues.
I now have my continence nurse at the hospital do my changes with my SPC as i have lost all confidence in my home community nurse.
I wait with baited breath for Poise to rush getting there product approved for international sale. I dont think its right that there is an amazing product out there that give better quality of life and its not available to all that could benefit.
Hi Valora & our SPC Community,
I too live in Australia. When I first found Greg’s website I excitedly told all my nurses, Dr, & Urologist.
I told them about the Poiesis site, explaining the Duette catheter was a necessity for us & how it reduces trauma. I asked them all to view the video but no one did. How very very sad & unhelpful.
If I was still nursing I’d do it for my patient to ensure my absolute understanding & knowledge of what is available for my patient, that could give them comfort.
So, I understand years of following the Foley catheter rhetoric is going to take a miracle to break. But it won’t happen if we can’t get the Duette from the States. Unless we can show our medicos what it is & how it works & how it improves our quality of life & life expectancy, we won’t get help.
Also, unless you have a SPC in situ, you don’t know the heart of our problems & issues. It’s that simple.
Yes, I believe we have to think outside the square & be pro active.
If you have friends in the States, as I do, order the Duette through them.
That’s what I’m about to do ‘cos I can’t stand this Foley & it’s quirks another minute, nor the stress of worrying about the damage it’s doing to my bladder wall & urethral opening.
I wonder, for those of you who have sensation in that area, do you sometimes feel like the catheter tip has passed into the urethra?
Doesn’t it feel uncomfortable. Like you’re sitting on a barbed-wire fence. Not that I have!
For those of you, & it’s pretty much all of us, who suffer spasms, try COLESE. It’s worked a treat for me. My spasms were almost non-stop day & night for 18 months till the anti-spasmodic I was taking went off the market for several weeks. My Dr, in desperation for my plight, trialled COLESE. Bingo! Spasms have all but disappeared.
If I don’t drink enough fluids (I take in 3 litres/day with good effect), my spasms return with a vengience.
Also, if my catheter is pulling, I get spasm.
So. ask your MD for a trial script, & good luck. It’ll change your daily life enormously. Spasms drained my psyche & strength. Not any more.
Be happy people & be kind to yourselves.
Till next time……
Hello Folks – I am excited! I bought a box of 10 belly bags on Fishpond.au and they arrived in less than 3 weeks even over christmas period. They are brilliant! No more washing out bags, hanging them up to dry, with other seeing them in the bathroom. No more swapping night and day bags which took me 1/2 hour at times if I had a spill.
So much more comfortable too, I can’t believe the difference. I had to wear the leg bags on top of leg braces, and it was very uncomfortable, especially in summer.
I am really thrilled to get onto this product too now – thank you Trampergirl!
I don’t really mind how much I pay, but I found Fishpond Au. the cheapest for us downunder.
I had a UTI over the w/end and passing much bigger blood clots than usual. I couldn’t get antibiotics over the w/end as we have no Drs. available. Then a large blood clot blocked the catheter, and I suffered agony like never before, worse than difficult childbirth. Ambulance to hospital with gas-and-air, I never want to go through that again. And of course wasted one of my precious Duette catheters, and my first new belly bag!!
I still cannot fathom out why I get continual symptomatic infections…
For anyone who has not read ‘old posts’ of mine – l would just like to repeat the story. l have had a SPC for over 20yrs. Been through all the initial problems. And had know one to advise me – so l had to find out for myself the best way to manage the SPC. NO WAY – was l going to strap a bag of urine to my leg! So that was the first problem to work out. Thankfully, Manfred Sauer – the company who design and make incontinence equipment for disabled people [ many of the employees are wheelchair users so know all the problems] – l use their 600ml drainage bags – with a cotton-feel backing for comfort against the skin. They are direct drainage – no tubing – just connect to a short length cath. 7102204S is the order number. l use a stretchy lace to tie it around my waist. The bag sits neatly inside my jeans and is undetectable. So easy to empty as the tap end is by my hip – just undo top button of jeans. l also stay like this at night – no changing to a night bag and stand. The less you fiddle with it – the less chance of uti’s. l change the bag every week.
Catheters. l heard about the Duette – via Greg – on this site. Looked at the youtube vids of the old foley – and the damage it does. Contacted the lovely Charlene -and a stroke of luck. A close friend of mine just happened to be staying with her son in Jupiter Florida – so she managed to get me some ‘samples’ to bring back for me. And the samples – were enough for 3yrs!!! so l am hoping that the Duette will be available via the nhs in UK by then. My local district nurses would not be ‘allowed’ to fit the Duette – so l use a excellent nurse who works for one of the incontinence agencies. She is thrilled with the Duette – and she has over 30yrs experience in catheters – so knows all the problems with the foley and is only too pleased to be able to use the Duette.
Southampton University are investigating catheters – and are trying to design a better-safer catheter then foley. l have emailed them – telling them that their is already an alternative.
We have no problems removing the Duette – but sometimes it is difficult to insert as it is a bit soft/wobbly. So l put mine into the freezer for a while which stiffens it. l have no problems with it causing spasms and pain as l experienced for many years with the foley.
Hopefully, and it would not be difficult – somebody in the Jupiter area could act as a go-between and collect the Duettes and post to anyone in UK and Australia – it is not ‘rocket science’- customs did not take any notice of the ones my friend brought in for me.
l use to take D-Mannose – to help keep my bladder wall healthy – now l do not need it. But l do still take apple cider vinegar, as a drink, to keep the ‘ph’ neutral which helps calm it down.
And l use colloidal silver spray on the cath site to keep it free from any bacteria etc.
Hope this helps some of you – who are ‘new to the game’.
Hi everyone,
Thanks so much for all the information re the Duette. Ruth, I have a friend in the US who looked into obtaining some for me, but she seems to think she’d need to get a prescription first?? I’m so pleased that you’ve all been able to get them, I’ll ask my friend again. The trouble will then be getting it fitted though, as my district/continence nurses have said they couldn’t risk using anything unlicensed, which of course I understand, but it’s so frustrating! I shall look into what you say, Trampergirl and see if I can get an agency nurse on board. Also, Ruth I’m sorry to hear you have to buy your belly bags, I am able to get them on prescription but they caused a bit of a stir with my district nurses when I first got them. This is what amazes me, that the people who are working in this area all the time appear to be so clueless about what else is out there. Wouldn’t you think they’d all be bang up to date on the latest developments?
Maria, I’m sitting on that barbed wire fence as I write this! When I read your post I thought ‘at last!’, someone knows EXACTLY how I’m feeling! When I tell my consultant that I often feel like I’m sitting on a spike he just looks at me blankly. I don’t know, but I suspect, having watched the videos on the Poiesis website, that when the catheter digs into the bladder wall maybe it presses on a nerve. Another reason to use a catheter with a balloon at the tip!
Once again, thanks for sharing your information and experience, everyone, it really helps.
Lesley, ‘Sitting on a spike’ is a good description of the foley catheter.
My friend – who was on holiday in Florida – went and got the ‘samples’ from Poiesis – no prescription – as she got them straight from the company. This was after l had emailed Charlene at Poiesis and explained all about my problems. l was only expecting to get about 3 – and it was 3 boxes but they had crammed enough in to last me 3yrs. All in sterile covers. And no problem with getting them through customs.
Poiesis 1095 Jupiter Park Drive – Unit 10, Jupiter Florida 33458. Get your friend in US to phone or email Charlene – and hopefully they could collect them. The more of us ‘globally’ using them with success must be very useful to Poiesis.
Lesley, l live on the borders of Worcs/Warwickshire if that is anywhere near you. Not sure how we can get in touch privately – but there must be a way. Just thinking l could send you some of mine – for now. But you have to get a district nurse on your side. Mine has years of experience and knows only too well the problems and pain the foley causes.
Hi Trampergirl,
Thanks so much for the information. I can’t believe Poiesis were so generous, but I’m sure you’re right, the more people out there using them successfully, the better it is for them in their efforts towards globalization.
I am thrilled to hear that you live on the borders of Worcestershire/Warwickshire because I live in Sutton Coldfield (hope I’m allowed to say that here?) and spend most weekends out and about in the Cotswolds. Maybe we could meet up at a pub car park? I know that makes it sound like something from a film, but I don’t think catheters are viewed as anything class A ;)
Thanks so much for your help. I’m seeing someone from the Birmingham continence care team to try and help and I shall try to get her on side, but I think taking matters into my own hands is the only way forward.
hi I was using the belly bag’s for around 2yrs, at first they were great. freedom at last. then for some reason I started to get back flow, I could not understand why I was getting urine leakage from my uretha ? this went on to the point I was having to wear pad’s as it was becoming embarrassing. I went to the urologist and they said the urine has to flow down, but with a belly bag it flow’s up as you wear the bag round your waist. I contacted Teleflex who make the bags, and they said they could not understand, was it a faulty batch ? I said no as id re ordered new one’s. I will admit I do miss the belly bag.its a great idea. but for me. over time it just caused me a lot of infections due to the urine not flowing down. it may work for some but for me it was not to be. I live in the uk. you can get them on prescription nhs. thank you for reading cassey
hi has anyone ever had any problem’s with pain from the balloon rubbing inside ? at times it can be so painful and other time’s it’s ok.
Haven’t posted in a while. I’ve been using the Duette since May due to damage to bladder wall from the old style SPC. Everything was ok for a while, but in December the urologist couldn’t get the Duette inserted because it was so soft. He finally had to insert 2 old style catheters, one at a time, and with increasing size, to get the opening to allow the softer Duette. I contacted Charlene from Poeisis. She suggested the catheter in the freezer trick. It worked very well for my cath change last week. Now if I can just keep the bacteria level down. I seem to continue with a UTI.
This is a trial as I have not been able to access to put in a comment (no spam)
Ah! I’ve got in this time. I have a query for Trampergirl and anyone else who uses Duettes, plus Belly Bags. These are so good, I am thrilled!
The only problem I have is that the Duette tends to kink under my undies, and this blocks the flow, causing a lot of discomfort and pain. It isn’t always convenient to keep checking under my clothes!! I wondered if taping the Duette to the belly bag might help, but not keen to go down the track of tapes again. I’d be grateful if anyone has any ideas please?
I have to purchase Belly Bags (via Aus), at $38 each, and there is only one option on that site for me. Otherwise, I find it great.
Helo everyone, I would please ask you people for some of your expertise and experience.
I have my SPC 3 weeks ago, and I have the CYSTOFIX 10FR catheter ( fixed with stiches).
Can anyone recomemnd me what was the best and most confortable cath to use?
With baloon or not.?
My doctor wants me to use one similar ( because bbraun does not sell the replacement cath only the whole kit) one, but not the same thats its ok. But I wonder if the urethral cath will be ok, because the tip could hurt o approach the uretHRA.
On the other hand I saw on many sites specially designed Foley for SP does anyone tried this? do you know where to buy SPC? Did anyone tried the pigytail wiht or without baloon.
Thank you very much for your time a help. Kind regards
PS: Exclude from the info the duette Cant use 14fr yet and thats the smallest size
I can´t find sites where the sell online with delivery option, specific sp cath.
I hope this pictures help to meke me understand because as you notice I am not shakespiere writing in english.
Kind regards to all.
The Foley has the bit sticking out of the end of the balloon and into your bladder. If the SPC can be retained with a suture then it won’t piston and can be curved to fit inside your bladder. Also, has more holes and with SPC there is another exit for the gravel.
Poiesis Duette has two balloons so there is a balloon rather than a pointy bit against the bladder.
You do need drugs to relax bladder with any catheter. I bent the end over of my Foley.
Incomplete and voiding now (with difficulty) so glad to be rid of catheters. They won’t give me drugs to settle my daemon bladder as not using catheters and have a “safe” (below 40 cm H2O) bladder.
It’s really interesting that the incision is made about three inches below your belly button because I always wondered how that worked. My grandpa has a catheter and I never knew how it was inserted or how it works when he needs to shower or anything like that. Thank you for writing this article so that I can understand it better! https://www.cathetercaddy.com/wheelchair-bag.html