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
General u.t.i symptoms are a dicolouration of urine, from a slight yellow to a orange/ brown colour. It will also let off a pungent smell. My daughters consultant prescribed testing sticks which are handy the things we look out for are protein, blood and nitrates. I usually ring through with the results to the doctors which offer advice or antibiotics. Hope this has helped.
I think I have had UTI’s off and on, I quit asking the dr for antibiotics as they always say u don’t have a UTI- you have a supra-pubic catheter… which have never understood how that means I CAN’T EVER have a UTI. I did the drinking of LOTS of water which Grahm suggested. I ended up downing a 58 ounce bottle of water and half of another bottle in one day. I tell you what Grahm was right I went from smelly, burning urine and wetting myself several times a day to no symptoms and MUCH more comfortable after ALL that water….. I have also been taking AZO cranberry, since using that it has helped my bladder issues….. Does anyone else get the you have a SPC you don’t have a UTI its very annoying????
Russ,
My Urologist suggested baryatric ( boy does that look like it is spelled wrong) that has had some success. It wasn’t going to work for me because mine is caused by the radioactive seeds. But you may want to look into it.
Hi legends
My UTIs manifest somewhat a little differently to a couple of posts here. At the moment, I’m having a horrid one. I know when I have a UTI because of the pain in my bladder. It can be rather intense. And then I get these rotten spasms that are completely painful so much so, I can feel it down to me toes. When I have a UTI, I can hardly move because of the pain.
For at least 6 months I’ve been UTI free. And living life to the full.
Every now and then, you’re gonna get an arsehole of an infection that will leave you feeling a bit listless, running at half energy and generally feeling sick in the belly.
But I chose this method of SPC because really, there was no choice for me other than having 24 hour care. Which would have put me at risk of being placed by the government, into a group home – because my personal care would be ‘too expensive by the state’. Yep – Global financial crisis has a trickle down effect onto those who don’t fit the norm!
My choice was either 24 hour care just to pee, or pissing myself all the time, or have a quality of life. I chose quality of life. Thats why i take a daily dose of antibiotic which has kept me UTI free up to now.
So how do you get UTIs? Well, for me, I think my are onset by higher levels of stress. Recently, i moved house, had to relinquish my doggie as he wasn’t allowed to come with me, and adjusting to a different personal care regime. (sometimes, it takes great skill not to say the wrong thing). Graham often mentions that women are more prone to UTIs because of all our bits and pieces are close together. As well because we menstruate (you men have it SO easy).
What works well for me is fresh parsley tea, nurofen, loads of water, urinary tract support by ethical nutrients, an oxytrol patch and a bloody good dose of antibiotics – plus considerable REST. Chuck the tomotoes, lemons, anything acid-y away and eat loads of green veges, fish. It will help.
Cheers for now
Jane :)
Graham,
What is naturally brewed beer? I have inquired at several different stores, etc. I am not a home brewer. I do have a supra pubic catheter and am looking for ways to avoid UTIs? However, I have not been able to find out just what beers that can be purchased are considered “naturally brewed??
Bill
Hi Bill, it means made with %100 natural ingredients, no chemicals and nothing artificial. It also means no hangover. We have many varieties in Australia. Members and friends in America tell me it’s hard to get there. Best to ask around at your local liquor stores. I prefer naturally brewed as it’s healthier and seems to work best but you can try any beer. Doctors recommend no more than three beers/day for your liver etc health.
I had a hard time finding natural brew in the U.S. and found micro breweries my best bet for knowledgeable information and excellent product. For women I am sad to say, 1 or 2 is our recommended dose for liver health. Saving my daily dose for Saturdays didn’t fly, my math and idea of averaging equaled binging to livers. Can’t blame a gal for trying, liver math trumps, 2 a day. (tall ones)!
I am considering supra pubic because I have spinal cord injury and an overactive bladder. I can’t go anyway without an accessible bathroom being close by and sometimes I still don’t make it. My question is with the supra pubic catheter will I still have the contractions and have accidents through my urethra?
No Tina, a supra pubic catheter does not stop overactive bladder symptoms. The most common treatment is one of the medications mentioned in the article. Botox has proved beneficial. I would first start with a medication and see it reduces your leakage problems enough.
I have exhausted all the medications and I’m on a waiting list for Botox. Only thing is I have pay for it myself. The cost is $795.00, a lot of money for something that may not work. But if I don’t try it, I will never know.
Tina, I use detrol (not sure of spelling) twice a day and depends adult pull ups. I had almost complete relief with Botox injected in the back of the bladder wall. The botox lasted about 8 months, I am on the list for another injection process. I leak with contractions. Contractions are more painful for me if I over do it, let myself get dehydrated or constipated. A damp diaper is much better for me than soaked socks. When I lost independent mobility and bladder control a SPC made sense for me. It is not without challenges, read everything you can and remember it is reversible. Having an external bladder takes some getting used to. The medical community is surprisingly unaware of the care and management of a SPC after placement. Most of us using this site are learning from each other. It is not a fix it and forget it solution for bladder management. For those of us facing choices to make daily life safer and easier for ourselves and our caregivers we must become subject matter experts on all things related to our health and well-being.
I`ve had my spc for about 2 years–my dr`s never order a urine test-I`m always the one who insists on it and each time it was found I had a uti-they give me antibiotics which I guess helps-but they never order a follow up test after I`ve finished what they prescribe-why are they so relucktent on on urine testing? This is both my urologist and kidney Dr.
Josh sounds like they give you the same run-around they give me……They always tell me I don’t have an infection, never request testing my urine, what can’t one with a SPC have an infection?
Hello
Hi, quick question for Graham. Is there any reason why you choose to wear a suprapubic catheter rather than practise clean intermittant self-catheterisation? I do not have MS, but I do have bladder problems and will probably need an SPC in the not too distant future. My problem is that, due to my particular physiognomy (tight muscles, narrow urethra, false passages, etc…) self-catheterisation is a hellishly, brutally painful experience for me. I am curious if you, or anyone else here has had similar experiences with clean intermittant self-catheterisation and if there is anything that was done to remedy these difficulties so as to facilitate self-catheterisation and avoid needing an SPC. Cheers.
Graham, I see messages from others who have various questions about how to deal with problems with the SPs that I feel could benefit from some of my experience and maybe I can in turn benefit from theirs! For example, my Urologist has me on a medication with the name URIBEL. It is a urinary antiseptic, antispasmodic, and analgesic combination that has only been around for the past year or so. It is produced by a firm in Florida and requires a prescription. It replaces many other meds such as Urised, Ditropan, Pyridium, and others I cannot recall. Of course I am referring only to the USA policies,but I have had good success with URIBEL.
As recent as 2009 I was prescribed antibiotics 12 times in 11 months to treat UTIs. Since regularly using Uribel I have only required antibiotics twice in the past 6 months.
I have also found organic beer in health food stores that I am assuming is the equivalent of “Naturally brewed”. I have tried several different brands and have been satisfied with their flavors, and have not experienced any negative reactions to their use.
Sincerely,
Bill
Tanglewood,
I tried self catherization for a period of time before the ureter completley closed up again. ( 3 times after 3 procedures to open it.) My urologist suggested a bariatric treatment that has had some success in others of stabilizing the ureter, but with the radioactive seeds messing with mine, it didn’t seem likely. I did the SPC last May, and it has been a whole lot better than where I was before with pads when it was open and catheters when it wasn’t. It requires some maintenance, but nothing like the problems without it.
My doctors are pro-active about testing for UTI. I’m usually the one saying don’t bother Doc because I won’t take the antibiotics anyway.
Tanglewood, I’m a C5-6 quadriplegic. I don’t have any hand or wrist function so I cannot perform clean intermittent catheterization. You may benefit from botox. It won’t hurt to ask your doctor or urologist about it.
Thanks to everyone for helping out with answers here.
I have been diagnosed with MS for 42 years and am living in a nursing home. I am straight cathed 5 times in a 24 hour period. I have had 5 urinary tract infections in the last approximately 15 weeks. I have an overactive bladder and take meds for this. I also take four cranberry capsules daily as well as drink six glasses of water (mostly in the evening) and a glass of red wine. I am being encouraged by several professionals to have a supra pubic catheter and I am definitely leaning in that direction. However, I have some concerns. After reading some of the posts, I saw that uti’s can still occur and infection at the site can also occur. Another concern (thanks to my vanity) is will the bag show? I really need some encouragement from you who have been there. I have an appointment with my urologist to consult on this. I know she would like me to have this done. Any thoughts? Your comments were very helpful. Thanks
Joyce asks will the bag show? I wear a leg bag around my thigh under my trousers during the day. At night when in bed I use a urinary bag that can be hooked on the bottom of the bed, or laid on a towel on the floor. There may be other types of urinal collection bags I am not familiar with but I have been using the above method for 13 years.
Bill
Thanks Bill. I am checking with my urologist on tuesday about having the procedure and what I can do to hide the bag. This is actually my primary concern. It is very comforting to be able to talk to people who understand.
Joyce
Joyce,
You may also want to look at a belly bag. Works like a fanny pack, but under your clothing. Available at athomemedical.com, made by Rusch.
Good luck at your urologist appointment.
Bill
Hi Joyce- I have had MS for 16 years and am non-ambulatory. I had a SPC put in 1 year ago and had it pulled out 5 weeks later as the spasticity was unbearable. I am also concerned with vanity and there was no way to really hide the bag enough to make me feel comfortable going out in public. I was very self conscious and also tried the belly bag (but that just made my belly look bigger).
So, 2 months ago I saw another urologist in the same practice and she doesn’t feel that women with MS should have the SPC because of the neurogenic bladder issues that those of us with MS get. She was glad that I had mine pulled. Unfortunately the options that she has for me are very extreme and require complete reconstruction of my bladder. I do not get uti’s but I do have the neurogenic issues and have to urinate quite often. I need to have someone transfer me to the toilet every time because of my mobility issues. MS is a hard one!!!
any tips on cleaning the leg bags and tubing and how often to change both bag and tubing whilst using a SPC to avoid urinary tract infections?
Dear anyone (!)
Do you ever get ‘referred pain’ in one of your legs with your SPC, especially if your bladder is inflammed? I’ve been to my DR because at first i thought i may have a bloody blood clot! EEEKKK but my leg isn’t that swollen nor is it discoloured ie red. Yesterday, I had my SPC changed and it really hurt initially. During the night, I woke up with really aching bladder, but more so – excruiating pain in my leg behind my knee down and inside of my thigh. However, this morning, my bladder is not sore and my leg is fine. Have you ever experienced the same thing?
Warm regards
Jane
Hi everyone, l have had spms for 30yrs – and for the last 18yrs have had a supra-pubic catheter. lt changed my life. l live in Worcestershire UK – l have my catheter changed every 4 weeks by the local district nurses. lf l leave it any longer it can be difficult to remove and any trauma can occasionally cause uti. Over the years l have developed my own way of wearing the spc. l have a short length catheter and direct valve 600ml bag -which l get from Manfred Saur. The bags have a cotton-feel back so are very comfy. l thread a lace or ribbon through the eyelet holes and tie around my waist. Wearing tight short-style knicks keep it secure and safe. l can wear shorts/tight jeans/leggings etc without the bag looking obvious. Having no tubes makes this method so easy – no kinking. At night l stick to the same routine. Never connecting to the nightbag/stand. l hated having to do this when l first had it done. l found it rather demoralising. lts bad enough losing control of your bladder without losing self-esteem. Also,it helps me feel more sexy. l love riding my horse – and before having the SPC – l would be ‘soaked’ down to my boots. Now- l can ride knowing l will remain dry. lf out on a long hack – l might need to empty the bag. And with one hand l can undo top button and get the tap-end out and easily – and discreetly empty the bag – behind a bush!! Once whilst doing this in the woods – a hot-air balloon came overhead and spooked my horse – he shot forward a few strides and l had let go of the ‘tap’ spraying pee all over us. l nearly fell off with giggling. As l cannot walk unaided l get about on a Tramper scooter it is all-terrain [British design/built] l can go through woods and fields – muddy ruts – its wonderful. l bought a new one last year – previous one l had for 12yrs. l have two lovely rottweilers and a english bull-terrier [he often rides shotgun] and we have a great time out in all weathers.
My SPC – has so changed my life – and l think the way l wear mine has been answer. l have tried a flip-flow valve – but as l have absolutely no control it was no good for me. And not being able to get to the loo in time did not help. l do drink lots of water and red bush tea which helps keep things running nicely.
One question l would like to ask you is – l have a ms friend on the mss forum who is wheelchair bound and has to have carers in using a hoist to get her onto the loo. l have tried to pursuade her to have a SPC – but she thinks her tummy [ which she says is very fat] would prevent her from using one. But l think having to be hoisted several times a day can’t be good. She is now suffering from a very painful shoulder from the exertion.
Do you know of anyone who is rather big in the belly area who manages a SPC OK.
thanks for letting me bend your ear!!!
Trampergirl.
Crapulentcrip, It’s best to adhere to the manufactures guidelines. Catheters should be changed every 1-3 months depending on the type and never recycled. Drain bags changed when cloudy or smelly, may be reused a few times afer being cleaned and sterilized in a solution like Milton. Some use 1:10 ratio vinegar:water.
Pathmaker, yes it sounds catheter change related. Next change make sure they use liberal amounts of Lidocaine or other numbing gel. Referred pain is hard to treat, start at the source.
Tramper, thank-you for your tips. Many overweight people use a suprapubic catheter. With advanced MS the biggest possible drawback may be her level of sensation, as you know sensation is unique to each person. An SPC is reversible if to uncomfortable, to save all that transferring certainly worth trying.
Graham,
Thanks for your reply – will pass on your comments. What puts her off having a spc is – she did once have an indwelling catheter -urethral – which caused her lots of pain/bleeding and wetting. This bad experience-understandably- has un-nerved her. From my own experience l feel a spc would be advantageous – to her- and her carers.
l have mentioned this site to more people on the MS Society forum – to people with bladder incontinence – as from my own predicament – you get the best advice from people who have personal knowledge.
All the best to everyone
Tramper.
Hi I have had my spc for 6 years now I have to have mine changed every two weeks and I still keep Uti I have to bladder Instillation 3 times a day with sod Bicarb lidocaine atropine Tobramycin heparin and I have a nuerostimulater to control bladder spasms there are days I hurt so bad I can’t walk I have nurogentic bladder so I can’t pee without one but I haven’t had sex in 6 years and I can’t go swimming my urology doctor said I can’t because the water will get into my bladder through the spc site I have to take showers no bath tub and no Acidic food at all it burn the inside of my bladder and I still have to keep mine covered I drain around the catheter a lot the doctor said that it is normal that my body is just cleaning itself I don’t not have to wear a keg drainage bag no more can go at least two hours before have to drain my bladder I have a lot of pressure on my bladder from my bowls it cause a lot of discomfort so there is another pill I have to take for that. Please tell somethings u have had to handle please thank you.
I cannot thank you enough for the article, I thought I would never be able to go swimming again. What do you recommend most for a stint so I can swim? Do you have to buy anything special from the pharmacy? Also, do you have sny advice on sexual positions for my boyfriend and I? He is scared to damage the catheter. is there any way to secure the catheter with some sort of adhesive and/or cushioned bandage during sex. O usually just have cloth gauze/sponge over my insertion point. Thanks ever so much for your help.
Hi Chrissy, I covered these in the article. You can buy cone shaped plugs but really a cap off the right sized pen works fine, just sterilze it. You can also get small taps, good if you might need to go pee quickly. Tape your catheter down if worried during sex, a bandage won’t hurt if it makes you both feel more comfortable. Are you a wheelchair user? See the link at bottom of this page to read about wheelchair sex and positions.
Howdy gang, hope all is well with you lot! I’m still in chemo, not much change, feeling ok, new lot of chemo tuesday, see how that goes, ( breast cancer). The chemo however is bringing me a few UTI’s i think, and i have a mucky wound, and a slight staff infection with my SPC. I think its because i now have them changed by my Dr, and he’s not AS dilligent as the continance nurse is, I think i need to tell him to clean it more, and not leave me waiting so long while he stuffs around putting the new cath back in! Coming out last time stung a bit! Due for it in two weeks ( groan!, hate changes! wish i was normal! Catch ya!
Hi Gaye… I can’t stand bloody cath changes either! I dread them to be honest. Sounds like you are beating this bloody breast cancer – good on you! Actually, was thinking about how you were going only just the other day.
I’ve discovered pro-biotics. Since my discovery of them and another health food product Vegetarian Digestive Enzymes – i’ve put a halt to my spiralling reliance on anti-biotics and poor gut health. No more anti-biotics, no more anti spasming medication. In fact, its Graham’s ongoing voice through this site that made me pull up me socks – and that is ‘drink more water’.
I do hope you are able to get that staff infection cleared up. Will be thinking of you as a comrade ‘sister’ whilst you get that catheter changed… and remember – we’re fighting your cancer with you.
Cheers
Jane
Hi Josh, If you have any feeling, you’ll know. Generally you get a niggly bladder, need to pee more. If your on a bag, it fills a bit quicker, and the color is darker, also it may smell a bit. If your unsure, get a ‘dip-stik’ done once a fortnight. I have a bottle of dip-stiks and i test usually around once a month. This time i knew as my bladder is irritated and i go more than i should, but pee less, ( free flip flow tap, bag at night). Also my kidneys are aching, and because im on chemo, i have to be careful not to harm them. Im on strong anti’s ( eurethramycin 1600mg a day), hopefully clears it up! My next change is in two weeks. good luck Josh!
Hi Chrissy,
l posted my spc story last month. Explaining the way l wear my spc which l have had for 18yrs. l do not have any tubing – just a female/short length silicone cath – connected to a direct valve 600ml bag.
This l tie around my waist with a pretty ribbon. This allows me to wear tight jeans/shorts etc without it being seen.
You asked about comfortable sex positions. What l find best is [with a little baby-doll nightie covering the cath/bag] my partner lies on his side facing me and l lie on my back – with my legs bent over him. lt works a treat. No weight on me and it allows my partner to ‘fondle’ my other bits.
Where this a will – there is a way!!!!!!!!!!!
Tramper
What is your diagnosis? I’m bleeding moderately at the site of my supra pubic catheter, half is coagulated half is fresh. I have no pain, no headaches, no bypassing through the penis of any kind. This catheter has been in for 9 weeks, last balloon top up was 4 weeks ago. Was no blood when I got up this morning. I have not pulled on the catheter at all. My uinary output is flowing, the color red wine. What would you do?
This is nothing that I have experienced so all that I say is purely conjecture. The red wine urine has me concerned for a cause of bleeding in the bladder. I might try a lot of water to see if it clears, telling me that the problem has solved itself. Fill up the balloon to see if I was leaking some of the blood through the catheter site. Other than that, I would have to defer to a doctor to take a look at the inside of the bladder to find the source of the bleeding. Was this a test or is that where you are at the moment?
Erm Graham, my partner had this over the weekend just gone, half a nightbag of blood later he called the doctor, possible kidney infection or stones? That is pure guess work, going on experience, as for the site, my only experience of it bleeding is when it has been caught so, unless you know you definitely haven’t or it didn’t catch in your clothing or something, get that looked at too, and…Let me know what happens?
Hello everyone. Just a couple of comments re cleaning equipment. I use
straight rubbing alcohol around spc site twice a day. I clean night bag and attached tubing first dripping dish detergent down tube, then filling bag
via tube, with hot water. Drain and then rinse tubing and bag with a solution of water/vinegar 1:4 is recommended concentration here. I keep a 4 litre plastic jug filled with the vinegar solution. I keep my day leg bag
on continually to cut down on introducing an infection while changing bag.
To make this work, I remove the plastic end of the tubing on night bag. The tube is then put on the spout end of my leg bag. Works like a charm.
9weeks is far too long to leave a catheter in – l have mine changed every 5weeks. Also, is it a latex catheter as this can cause a bad reaction.
l actually had mined changed today. The nurse always uses two pairs of gloves – the first for the removal – the second to replace new cath – this avoids cross contamination. She also puts a ‘squirt’ of lnstagell into the site before putting the new cath in.
The bleeding from the site could be infection so you would need swabs taken of it as well as a urine sample checked. Drink lots of water – make it your mantra – must drink more water.
Do get your doctor to check you out – in UK a trip to A&E would be advisable. This could be a ‘man’ complaint – could be enlarged prostrate.
But certainly needs checking out.
The cath site would heal up with a dressing applied such as Acticoat Moisture Control which contains Silcryst nanocrystals. Silver is a good antiseptic wound healer. Silver tipped catheters also brilliant if you suffer with continual infections.
Do hope you soon get this ‘sorted’ out as soon as possible.
Tramper… good advice! I might look into silver tipped caths here. My continence nurse is very strategic about changes, but seeing as i usually have a 10mg valium when i have to have a change over, ( to relax me), driving 35min to another town for it is no longer an option, so i attend our little triage clinic here and my GP does it. He’s irish like me, and very good at calming me, he’s changed it twice, but the last time i had an infection, so i assume its carried over.I’m good today, bladder isnt as tickly or excited, and yes, im drnking about 2 litres a day and change the soft compress over the wound daily, and today it seems far less mucky. So the anti’s must have kicked in, now all i have to do is eat yoghurt to combat the onset of thrush, which in turn will give me diarreoh, which for that I’ll eat more spuds and rice, and then I’ll get backed up, and then…. and so on, hahahahahaha!!!! for every action, there is a re-action! And as for your sex tip, my man and i use that position too, very comfy! ;) Cheers!
As someone who has had ms [spms 30yrs] l am very interested in all the latest research into vitamin d3 deficieny. lt appears that most of us have very low levels of vitd3. This also applies to all auto-immune diseases – such as 17types of cancer/osteo-porosis/arthrits/IBS/Crohns/Coeliac/hypertension/diabetes. Our levels should be between 150/225nmols – in UK the ‘medics’ are still working on a level going back over a century. Vitd3 supplement is available very cheaply. l get mine via amazon Healthy Origins 10.000ius softgels – which actually does get posted from US.
l have a friend who has now got the all clear for his Prostate Cancer – he was treated/operated on in US as here in the UK he was told it was inoperable and terminal. The US Oncologist- on first seeing him straightaway put him on 60.000ius of vitd3. This was to give him the best hope of recovery. 8yrs later he is still taking a highdose vitd3 – and is very well. Because of the fear of skin cancer – adults/children do not get the amount of sunlight they need to boost their vitd level. 20mins [naked] in bright sun is enough for your body to absorb 20.000ius vitd.
The lack of sunshine is why Scotland has the highest amount of people with ms. Followed by Canada. ln the middle east the ms level is also high – not for lack of sun – but because they cover themselves up in robes. You only have to google vitamind3deficiency ms or cancer or back pain [yes vitamind3 does a good job of painrelief]
The darker the skin you have the more vitd3 you need. The rate of babies being born in UK with ricketts and heart problems [especially afro/asian]
has risen quite dramatically. So please spread the news – make sure all of you with auto-immune diseases- and your families take a vitd3 supplement. Babies/Toddlers 1000ius daily. Children Teenagers 5.000ius.
My level is still low so l am taking 20.000ius daily.
Vitamind3world – is a good site. Also, for all people with ms – LDN – works well to give back control of bladder function. l only found out about LDN – 3yrs ago – so too late for my bladder – but l have benefitted from ldn in so many other ways. l feel so positive and upbeat – less fatigue-clearer brain. l do so wish l had heard of it years ago. ln the three years that l have taken it l have improved not progressed – and l have secondary progressive ms – so no drugs/dmd’s for me. l take vitd3/LDN/magnesium/omega 3/and Sativex spray for muscle-spasms/spasticity. l use a spray of Sativex before catheter change to help relax the bladder. [The District Nurse-says she ought to have a spray of this as well] Sativex was licensed for ms use in June 2010.
Tramper, funny you mention vitd3 deficiency. As a kid growing up in rural NSW, ( new south wales australia for our foreign friends) I suffered alot from ecsema. The dr told my mother it was a deficiency of vit D, so i had Ultralin D cream for years! Once we moved to the city when i was 12, it went away. But now I’m 47 and going thru chemo, its returned to the backs of my knee’s. I don’t have a spleen, so I lack in vitamins in general, but i try and keep up with foods rather than pills. I also use Billy Goats cream which clears up the ecsema in a few days, and no scars., interesting…I’ll definately look into your suggestion!
There are lots of folk on the MS Society website who are Australians Gayle. For some years they have been frightened into daubing themselves with high factor sun cream and also cover up when out in the sun – even when swimming. We need a certain amount of sun – but not excessive so that are skin burns. Drawing a sensible line – is the answer. The vitd3 softgel capsules l mentioned – can be split open and the oil used directly onto eczema or psoriasis. But the important thing is to consume the vitd3 – its not just a vitamin – it works more like a hormone.
Gayle also make sure your vitb12 level is kept at over 1000 – The healthier we can keep our bodies – the better chance we have of fighting off infection. Vit C and Zinc both heal.Omega 3 – but not omega6&9 as they just cancell out omega3.
All the best for your future recovery
I am having a supapubic fitted in about two weeks time. Can someone tell me what to expect. I will have to this for the rest of life. I have a foley at the moment. which I find painfull and uncomtable.and it leaks a lot. Will the supapubic one be more easy and less painfull. Any feedback would be very greatfull
Alicia
Alicia,
lf you scroll back to April 15th – this is my first post on this site. l have had a SPC for nearly 19yrs. l wear mine very different from the way the l was first shown [by people who do not have one] – l have a short length/female/silicone not latex cath and l use direct valve 600ml bags – so no lengths of tubing. l tie the bag with a lace through the eyelets and tie around my waist. lts virtually undetectable – very comfy- and fits nicely inside my short/style knicks – and l can wear tight jeans/shorts etc – no problem. No need to strap the drainage bag to your leg – and l do not even link up to a night bag. The 600ml bag is quite sufficient. l can still ride my horse – so that shows you how well this system works. The District Nurses – who change the cath every 4/5 weeks think my method is brilliant. l put a new bag on every 5/7 days. The bags l get from Manfred Sauer – they have a cotton-feel to the backing so always feel good against your skin. Having a SPC has been a god-send -made such a difference to my life-style. You must drink plenty of water to keep your bladder happy and healthy.
Best of Luck –
Trampergirl
Alicia,
I am an elderly male who has had a supra pubic catheter for almost 14 years. This is a medical condition that none of us would hope for if there was a better alternative, but you can learn to live with it. You need a good Urologist who will need to change the catheter every 4-5 weeks, and give you adequate medicine for pain control and hopefully be able to keep your infections to a minimum. You will need a supply of urinal bags – a leg bag for day use and a different bag for nights. You will have to change these daily and disinfect them as best you can. I use a mixture of vinegar and clorox to soak them in for about 5 minutes.
I can get about two-three weeks service from the leg bag and up to a months service from the night bag, One Urologist I know told me that he has never had a patient who lived longer than 9 years after having a supra pubic tube installed, while another said that he had known a patient who lived as long as 20 years with this medical condition. I am living proof that you definitely can live longer than nine years. If you have specific questions, please do not hesitate to ask me……
Bill
what I want know is how they fit one is it painfull. How do you take care of one ect
Alicia
Hi Alicia, when your SPC is put in, you will be under a light aneasthetic. You shouldn’t experience any pain at all. For a couple of days after, it will feel a bit tender, but nothing as uncomfortable as a urethral cath!! You will earn how to care for it, and live with it very quickly. I know at first its hard to try and accept that this is for life! But compared to ongoing treatments etc, it is a better option for us with this condition. We’re all different, and everyones condition is different, I don’t know what yours is, are you in a chair? MS? other? You should be closely monitored by a district nurse and continence nurse for the intital few months, just til you get use to it. Drink at least 2-3 litres of fluids a day to flush the system, avoid things that may irritate the bladder for the first few weeks, like caffiene, alcohol, acidic ( orange juice, tomatoes etc) until the wound ste and wall of the bladder settle. The surgeon may wash the bladder through while your asleep, and you may experience a bit of blood through the line, not to panic, if your not happy, make sure you tell them!! You may be kept in overnight just to see how things go. Paracetemol every 4 hours for a couple of days will help also with any discomfort. Thats given on my experience, and I’m 15months with one now, i had cancer, and after several years of trying to make things work, I gave in to a SPC, and i wish i had of done it sooner! You will have the cath changed every 5-6 weeks, they make sure everythings sterile, that your comfortable, and gentley pull the cath out of your tummy, and insert another. You may experience a bit of discomfort if you have feeling, so I suggest a Valium, or relaxent of some kind to ease that, no more pain than a slight pin prick on the finger. Take Paracetamol an hour before the change over!! This helps! Good Luck, and I hope this helps! I know Its very scary, to begin with, but after awhile you’ll be an expert ;)
thank you for all info yes it did help. My problem is that I cant control my muscles. My bladder muscle wont contract to let anything out. I retain all urine. The cons who is looking after me says that I have no choice but to have a cath. They are putting the supapubic one in on the 8th june. I hope that the supapubic one is less painfull the foley and easier One question is err How do I put this Can hubby and me have a normal relationship (imatate) whith a supapubic cath. We cant with the foley.Wé cant for 12 weeks anyway I have a tvh on the 3rd may
Once again many thanks
Alicia
Alicia, yes you can have a normal sex life, it’s all explained in the article.
Hello,
I had bladder stones few months back and had to get it removed by surgery. Now my catheter got blocked and in the ultrasound there was a stone. Is it very common for bladder stones to form with supra pubic catheter? Are there any ways of reucing the formation of bladder stones or sediments.
Does using a catheter with a large tip help remove the sediments? I am using BARD silver coated catheter. Many Thanks.
I know it’s quite common for bladder stones to reform soon after one is removed. I don’t actually know why this is, but my partner had a golf ball sized stone removed back in December and by March of this year another had reformed, the symptoms of the original one were reduced by increasing water intake and cutting down on drinks like coffee, and tea. I am not altogether sure if the formation of stones is increased, or not by the type of catheter you have, not massively helpful I know, again the sediment is reduced by volume of water, aim for two to three litres a day, hope this is of some use.
hello Gayle I forget I might have chemo if they cant remove or treat my problem Spinal cord brain and optic nerve
To any one: I am paralyzed waist down with cathter They are suggesting due to leaking, bloody urine,spasams that would make the Pope curse and heavy calcification. My concern is I was on steroids for over a year and now I have a very large apron stomach. ? on getting SPC. Thanks Jane
I haven’t posted in awhile but to those who use a SPC, how often do most of you get a bad infection to the point opening of tube has green slime and blood? I seem to get infections every month where my SPC by passes thr urethra. I have had my SPC for over 5 years and have always done the best in my power to keep bacteria out flushing bladder etc. trying diffrent catheters, but the SPC works out for everyone since my home care Nurse changes it. I am still looking for a Uroligist who deals with spinal cord issues. but other the the inftections its been a blessing.
hello again
I have a bit of a problem I have a foly cath at the moment,but it leaking round the uretha. I am wet most of the time it use to leak but only small amounts now in quite large amounts. I do not know it has leaked untill I stand up from sitting or feel wet. I dont have any urge or any feeling like I want to go. Why is the cath doing this and what advice can anyone give me. The leaking as got that bad I have taken to using pads as well. The cath is draining.
Alicia
Hello,
Thankyou for your reply Kitten. What was the procedure of removing the stone the second time was it surgery?
Also, i read that using a larger size supra pubic catheter may help in removing large pieces of sediments. Is it true and will it be helpful. Many Thanks.
Pssst… Graham – how are you? What was the result of your blood coloured pee a couple of weeks ago? I’ve been wondering how you are.
Cheers
JWTAS
Marie,
l am not a ‘professional’ – but do have 18yrs experience of SPC.
lt sounds as if your cath is blocked if you are draining through the uretha. The cath can get embedded into the bladder wall – then the holes block. Sounds as if you have infection at the cath site. The silver-based dressings work well at drawing away all the nasty mess and healing it.
Also, silver-tipped caths help cut down on infections. Drink lots of water – especially now its hot weather. l have mine changed every 4/5 weeks – you may need yours changed more often – at least until its working better. Sometimes just pinching the tubing tight near the cath site – do it a few times – it gets the blockage moving. Or gently turn the tube round a few times to free it. With clean hands or use a glove.
You did not say what your urine is like – if it is dark coloured and a bit smelly then you will most likely have a bladder infection. But do keep drinking water – this will help things along. Try taking Pro-biotic Acidophilus capsules – as the more anti-biotics you might need can upset the balance. Then you can get ‘thrush’. Eat lots of natural greek yoghurt and honey.
Hope this helps.
Hi there YA, the second stone, is still there currently, they broke up the previous one, under general anaesthetic, and I assume that is what they will do with this one also, it is then peed out but sometimes bits stay behind, and form into another one
Hello I’m 16 years old and have had my suprapubic catheter for 8 months, I’ve had alot of problems with it and am due to have a mitroffanof next month, I have constant uti’s and have had one now for 5 months which wont go with any antibiotics, I have my catheter changed every 2 weeks as they can’t last any longer than that for some reason, when I get it changed it is very uncomfortable as it gets stuck literally inside and has to be literally ripped out with great force which obviously hurts and causes trauma and bleeding, and I was wondering why this would be, and if anyone else has this?
also when it comes it it’s always full of puss and mucus and green muck on the end, and always blood clots, is that what makes it so stuck?
thankyou
Caseyxo,
You should not be having problems like this – l can understand them changing the catheter every 2 weeks if you have a uti – but to cause you such distress when removing it is not on. The trauma this causes will make matters so much worse. lf it is a latex cath – this causes a lot of people to have a bad reaction. Ask for a silver-tipped cath – and use silver based dressing on the cath-site to draw away all the ‘gunk’.
Drink loads of water – and l do mean loads – lts the best way to keep your bladder working better – neutralises the urine. Make sure you drink a large glass of water before they change the cath – and ask them to put something like lnstallgel – around the site – this numbs it a bit. When the nurse removes the cath – make sure she takes time to wait for the balloon to empty – do not let them hurry – as sometimes waiting for the last little drop to come out can make such a difference to easing it out.Take note of how much liquid they put in so you know how much should come out – sometimes some of it can evaporate – but only a little.
Taking a muscle-relaxant can also help to stop the bladder going into spasm. l read on a previous post here that someone takes valium prior to a cath cahnge. l have ms – l use Sativex [sprayed under my tongue] it is a cannabis based med now licensed for MS use. Ask your GP – if you can try something to relax you for when you have yours changed. Bathing in water with sea-salt in might help with healing as well. A little blood in the new cath is quite normal.
lf you read back to my first post on here – l explain the way l manage my SPC – without long lengths of tubing – as l found this can drag on the cath site – and cause problems. Had mine for 18yrs – and now manage mine in my own way which has been much better then the health professionals advised. But then they do not have a SPC!!
Take plenty of pro-biotic acidophilus – and Olive Leaf – cranberry juice
– eat Greek natural yoghurt. l can’t think of anything else – lets hope someone else will.
l hate to think of you having all these problems at your age – but l do hope it will soon be resolved. Once the bacteria is balanced it will heal very quickly – and you can then appreciate the help a SPC can be.
Sending love
xx
why I am still leaking round the cath. I leak a lot when i have aB.M. I am leaking when I sit down and dont know. There is still a lot of leakage round the cath. The uraetha where it is also hurts and painfull.I keep on getting small blood clots in the leg bag. The cath is draining but slowly. Should I be worried and I call the d.n about this.
Alicia
Caseyxo, you have dual renal (kidney) pseudomonas infections. The only treatment that can help is IV antibiotics, 50ml gentamicin stat 3 times daily for 7 days. Under this treatment daily blood and urine samples may identify a more specific suited antibiotic. I don’t want to panic you Caseyxo but this can be a fatal condition.
Go to hospital and seek a second opinion. Drink 3 litres/day. Use silicone catheters not laytex. Kick and scream until you get on that treatment. If you are lucky you will get to keep both kidneys.
Thankyou I will ask my GP for a relaxant and try those things! xx
Graham, yeah that is the infection I’ve got, I had gentamicin for a week IV and a week later the infection came back, so I had alot of other antibiotics that didn’t do anything, then got told that it will be there all the time so there’s nothing they can do? I didn’t think it was right to just leave it?
Im makiing sure Im drinking 2-3 liters of water a day but my catheter keeps getting blocked and not draining well so I feel full alot.. I think I’ll go to hospital tomorrow and ask them to do something else, don’t want to loose my kidneys, they’re already scarred! thankyou :)
Alicia, as previously indicated you don’t seem to have an over-active bladder and you are two days out from a supra pubic catheter procedure. Avoid excessive rubbing (movement) of the catheter. Long term rubbing of any catheter can create a larger passage than needed allowing bypassing (leakage around cath) and post 10 years tumors. There’s also a possibilty the catheter eyelets are suctioning against the bladder wall or protruding up a ureter. It’s hard to ultrasound the bladder and kidneys in a seated position, never the less an ultrasound will be in order prior to your SPC procedure.
Good Luck Alicia for the 8thJune – the SPC procedure should help all your problems and make you more comfortable.
Read up all the info that Graham has on this site – you will soon become your own expert if you follow his advice and soon gain confidence in the control of your bladder.
Hi Trampergirl, I use a catheter and bag without tubing. Using your method of tying a ribbon ’round your waist holding the bag, confuses me. Doesn’t that mean the urine must flow uphill into the bag? What am I missing here?
TY
I have spina biida an need to decide between a superpub cath or a urostomy. The dr said I can no longer go swimming or with the supertube and can’t wear a belly bag due to gravity. Please advise the urostomy is’nt reverable but I can’t stand the thought of never swimmimg again. pLEASE GIVE INPUT SO CONFUSED!
Hello,
To prevent the sediments from remaining inside is it advisable to keep a urine bag attached during the day and clamp it when the bladder is empty. Or is it better to use a catheter vaulve during the day? I just want the sediments to be removed and not stay inside as it causes stone.
Also every time you change a catheter are you given antibiotics? I am just afraid as i have to take them.
I was reading somewhere that supra pubic catheter has side effects after long term use. Is it recommended to use intermittent self catheterization? Many Thanks.
Misspies,
My catheter flows almost directly into the bag – so no problem. l use a 600ml direct valve bag from a company called Manfred Sauer – the bags no. is 710.2204s. They have a cotton-feel side so comfy against the skin. Sits nicely across the rightside of my tum – tap end just below my hip – so easy to get to to empty.And l leave it like this at night as well. So there is no tubing to get kinked or pull at the catheter site. Also, it can be hidden well in shorts/swimsuit – being a good sized bag it spreads the contents across – a smaller bag would soon fill and look unsightly. lf l wear jeans that sit lower on the hip l just push the ribbon and knicks down.
l have used this method for 18yrs – so l do know it works.
Linda J. You can still swim with a SPC – especially if you follow the way l have described – or you can use a flip-flow valve. Just look at the info on this site -Super Supra Pubic Catheter-
YA -We all have sediment in our urine – its just more noticeable with a SPC. l find if l pinch the catheter tube tight and hold it for a few mins then keep repeating it seems to clear itself. And its the old mantra – ‘drink more water’.
I need to have two hip replacements and the orthopedist has me scared because of his concern about bacterial infections. They’ve mentioned a case where a patient lost his leg because of bacterial infection. Does anyone have a hip or knee replacement and a SPC? I drink a lot of water, take the AZO cranbery pills and also drink a lot of blueberry/promagranate juice.
I have no choice I’m having the surgery 7/5/12 and taking my chances. If anyone has any information that would be helpful I would greatly appreciate it.
ask about hipiclens skin cleanser before surgery and while inpatient. MRSA is so rampant in hospitals now as well as some other bugs. Your surgeon should be aware of the product if you are in the US. I know this also sounds silly but never let a guest put their purse on the floor etc. The floor is such a hot zone for contamination of many things as are the chairs for visitors etc. I have everyone wipe them down for their own protection. They will also most likely pre screen you for MRSA- a simple swab test. As always wash your hands, make sure the nurses are doing so as well etc. Are you having both replaced at the same time? Its amazing- you will feel better within a day or two. As far as the SPC Im sure others will address this. Hope this helps in some way..
Hi Joanne, I had a total knee replacement a few years ago, but before I had an spc,but still having urethral catheter. When someone has surgery of any length, the drs put in a catheter but remove it after surgery or a few days after. The first time, the dr insisted the cath be removed because of possible infection after a couple of days. The 2nd knee surgery, bigger hospital, big time surgeon, he let me keep my catheter in. I eventually got a spc because of the infections related to the position of the urethra catheter. So, I would think your spc is by far better for you. After my surgeries, I had to be careful for a year (I think) when having dental work because of the possibility of an infectious agent travelling to the wound site. Hope this isn’t terribly confusing. BTW, my first surgery was done in a hospital ripe with a superbug.
Hello again Trampergirl. I did not know shorter catheters existed. How long are the caths you use? Do you get them from your bag supplier as well?
thank you for your help.
Hi MissPies,
Yes, the short length cath is called a ‘female catheter’ and l get them delivered with the boxes of bags from the supplier. l usually order enough to last the year. The length of cath – from the ‘site’ to the bag connector is 8inches – just enough to make a curve C shape. So the cath curves down then round to the bag. The bag is 9inches long – so fits from the centre of my tum to my hip. l have always worn it going across to the right – but l think its recommended to alternate sides regularly. But l found this to cause more trauma to the site. l do tend to sleep on my back as this does not disturb the bag.
l sleep propped up -elevated- on four pillows – as this is supposed to be beneficial to people with MS.
hope this helps.
Hi All!
My sincere thanks to Graham for this website, his knowledge and moderation! And to everyone else for sharing your respective challenge(s), experiences and knowledge having a SPC!
It is very difficult to find support and now that I found this site I feel like a lot of my in-trepidation and anxieties can be put at ease. I can know what is real and deserves concern versus what should be put on the back burner, not given time soon to incessantly worry!
I guess I’m getting ahead of myself. I should start by saying that I am 47, male and have had a SPC for the past 3.5 years due to a neurogenic bladder purportedly resulting from an over extended use of an epidural (whichchose no legal recourse as ssfollowing a third revision AKA, resulting from when you all going on girl Manigualt are long hello hey hey Malone while all along
Somehow I hit submit before completing. I was saying that I was told the neurogenic bladder resulted from a prolonged use of an epidural, as was explained to my wife and I!
I have had problems with UTIs and blood along with tissue curls. I realized after seeing these spiral/curls of tissue a few times that I must be causing the tip of the bladder catheter to scrape along the floor of my bladder when doing some stomach exercises. I have of course stopped but I will be looking for any threads pertaining to acceptable ab exercises and exercise in general.
Again, my thanks to All for greatly enlightening me!
The balloon on my SPC burst this morning. I felt a sudden discharge of liquid from the area and saw that the catheter moved freely in and out. I pushed it in and taped it in place to keep the channel open and went to the ER. I don’t think anyone in there knew what to do. The doctor wanted to do an unltrasound to see if there was anything in the bladder. I said I didn’t want it, I really just needed a new catheter with a working balloon. I also passed on the urinalysis they wanted to do. I gave them the name of my urologist and after 2 1/2 hours they discharged me with my same tape job in place and said they made me an appointment with my urologist ( who is an hour away).
I got to the urologist and he said the ultrasound was completely unnecessary and he should just give me a new catheter. I thought I had a really short period of time before the bladder closes up, but he said I have about 24 hours. My wife stayed to watch the change and take some tips on installation should another catheter fail. We left with the equipment to do it.
I guess I did the right thing, but next time I will keep driving as I pass the local hospital.
Any thoughts about how this should have been handled differently? I am open to constructive criticism.
Bill – What a palaver – here in the UK – the district nurses attached to your GP are ‘in charge’ of catheter changes/problems. l get all my caths/bags on prescription – so l order enough for a year. lf l have any problems l just ring the nurses and they soon send someone out. lt is a good idea to keep a good stock of caths in – and if you follow the instructions on this site – you and your wife should be able to DIY.
Next time you do get it changed – get your wife to ask if she could do it under supervision. You did the right thing – taping it into place – if you had taken it out – thats when it heals over.
l have found – just when you feel everything is under control and you get confident with your SPC – something happens. l have had a whole consignment of ‘faulty’ bags that leaked. Or the bag has come adrift from the catheter – and it is always when l am dressed up out enjoying myself – never when l am at home near the loo and a change of bag and clothes.
Such is life!!!!
Quick question,
My husband has a Super Pub Cathrer for 5 years.He’s mobile to walk and run.Would he have any problems with his kidneys if he starts working out.Any chance urine backtracks to the kidney’s.??????
We read this page daily can anyone help us out with this question.Thnks….
l don’t think that is possible – lf for any reason the tubing kinked and stopped the flow the bladder would just empty through the uretha. l can not walk much – only by holding on to furniture. But l do exercise – l have an eliptical trainer and a healthrider plus a power-plate vibro-gym -which exercises all my muscles – especially, the core muscles. And l do yoga. So if it wasn’t for my MS – l would be as fit as a ‘butchers dog’.
l do ‘wear’ my catheter differently from most. Short length catheter – direct valve bags that use a lace to tie around my middle. The bag sits nice and neat across my tum/side with the tap near my hip. This means it can be worn inside shorts/jeans etc. lts comfortable and secure without the risk of tubes kinking and no weight to drag on the catheter site.
l have done this for 18yrs – so l know it works.
lts good to exercise – give you the ‘feel good factor’ which we all need.
When l am crunching away on the healthrider – l start thinking l might do 50 – then l do 10 more and before l know it l have done 110 – l actually compete against myself – and get a good buzz and a big smile when l have achieved it. Not bad for an old bird of 64!!!!!
Hi Trampergirl,
I am curious about what you said about “short Length” what is that? My Mom has to use the night bag all the time becuase the doctor says the leg bag flow back. She hates all the tubing. It pulls all the time so her stomach is so sore. We can’t use tape to holdup the tubing because she is allergic. I can’t think of anything else to help her get rid of some of the tubing. Thanks
Sue
Sue,
l know just how your poor mum feels. l could not stand the elastic/velcro straps – and how dregrading it is to have a bag of ‘pee’ strapped to your leg – even ankle – l have seen folk having to do this.
lt did take me about 6months to find my ‘perfect’ way of coping – but it works so well – even my district nurses agree it is the best way. Recently, l was approached by someone working for healthonline they were doing a survey about SPC. And as l had one for 18yrs they asked to interview me – The results are for doctors/urologists/careworkers etc. The lady who interviewed me even took a photo of my ‘set up’ as she had only seen people with all the long tubing.
The catheter l have is a female short length cath – its about 8inches. l connect it to a direct valve bag – 600ml – so holds quite a bit – they are from Manfred Sauer – 710.2204s they have a cotton-feel backing so they are nice against the skin. l thread a lace/cord through the eyelets along the top- so l can tie it around my waist. Tap end near my hip – the catheter is just long enough to curl down and around so the flow is not interrupted – and no weight pulling on the site. l wear stretchy tight short style underwear which holds it all in place comfy. l do not connect to a night bag when in bed – l just keep to the same routine. How l hated that nightbag and stand. lts bad enough being incontinent with out all that. l only have to undo the top button of my jeans to get to the tap to empty it – and if l did need to empty it at night – or on a long car journey – l can use a plastic bottle. l even have different coloured ribbons/laces for ties. Colour match my knicks. And why not!
l am also allergic to the sticky tape.
This method l use allows me to still go horse-riding –
When l first had the SPC – l had trouble with keeping the ‘flow’ with all the long lengths of tubing – you only had to turn and it would kink or pull on the site.
Hope this will help your mum
Best wishes.
Thanks Trampergirl….
My husband wears a leg bag and he wants to do push ups and situps and lunges.With that tube straight from his bladder he gets scarred.So do I.This website is very helpful to a bunch of us..Thanks..A
And if anyone else has any comments please do so..
Thanks From:JAYS Girl
Jay’s Girl,
Your husband may also want to look into a belly bag ( made by Rusch). I have been using one and find that it gives me a lot more mobility than the leg bag. No sloshing because it’s tight around the waist. Shorts work fine.
Thanks Bill where do they sell them? Do we need medical’s order to purchase?
hi there i was wondering i have a supra pubic catheter and i have had it for 2 years or so, my question is can i wear dress pants that are my fitting size or do i have to go bigger? will wearing my actual size pants cause any sort of friction?
thank you i hope to hear soon
Jay’s Girl,
Check athomemedical.com for the Rusch belly bag. They are more reasonable than anyone else and do a fine job of delivery on time.
Onkar,
I have found that pleated front pants give a little more room than flat front to minimize additional pressures on the SPC.
I cant find any underwear that dont pull or rub or trap the supapubic. I have full pants shorts and mini ones. What is the best underwear to wear withthe supapubic cath and where do I get them from.
Alicia
Hi Alicia,
I have bee wearing Silhouettes by Depends. They are amazingly like regular women’s underwear. I purchase them from a company called HDIS (Home Delivery of Incontinent Supplies.) They are a very friendly organization with experienced and helpful people answering the phone. I have MS and they give me a discount. They have discounts for certain other conditions as well. If you are in the US, their phone number is 1-800-269-4663. The product may also be in the stores but i’m not sure about this. Also, if you ask, they may send you a sample. My spc is not in the least made uncomfortable. Hope this helps.
Joyce
Many thanks Joyce Do you know if I can get them in the uk. If I cant do you know how to get them in the uk.
hugs
Alicia
Hi Alicia,
My favourite ‘knicks’ are from Tesco – they are silky and very stretchy in a box shape – you get two in a pack. The medium size is uk size 14/16. You will be amazed at how comfy they are. l wear my short cath and bag without tubing – so l tie the bag with a lace around my middle – these panties hold everything nice and firm. l love them and have about 25 pairs – as l am always concerned that they will cease manufacturing them. l have them in black/pink/purple/orange/blacknwhite stripes. They support the drainage bag – keep you feeling secure.
My mum and lots of my friends all wear them to. They are made in one piece so no unsighty seams. Give a good outline in tight jeans.
Hi Alicia,
Sorry but don’t know about the uk but Trampergirl may have your answer. Good Luck.
Joyce
I have had a spc for about 6 weeks now and am due for a urethre widening op next month….The spc has a free flow valve which I empty when I feel I have to ‘go’….At the end of the flow I always get this very unpleasant slurping feeling that actual makes me yell…Can it be the end of the cathetre is against the bladder wall..? I have asked about this to the Doc and District Nurses but its hard to explain it to someone who has never had one….
For the most part the actual cathetre is no problem but I have felt like I have a UTI the whole time…have taken three lots of anti biotics to no avail….Doc says its the bladder trying to eject the cathetre..
I have a problem drinking water but will try going for more of it..as is suggested here….
Seems to be worse when I walk alot..always have blood in the urine after..
District nurses incidently say it will be changed after 12 weeks…I am hoping they will do it when they do the op as I have to keep both going for abit they said…
Squiffy – l have my spc changed every 5weeks – in fact the district nurse has just rung to say she will be coming in an hour. 12 weeks is much to long – especially as you have had a uti.
All the best with your op – lets hope it is successful for you.
Trampergirl….mmm wonder why its different in different areas then…cos I’ve seen several nurses and they all say the same thing..
Could it be possible this one is too long and is hitting the bladder wall, cos thats what it feels like all the time, like I’m being stabbed!
The nurse told me its because I have a UTI but who the heck knows….
I change the valve weekly and today when I changed it, it was ok at first but when the flow is tapering off it starts going round in an arc…much like a hose on a lawn….thats why I think something is not quite right here….If i twist it will it unkink or whatevers wrong with it…
Pain in the neck these things..I really admire you people who have had them for years and have learned to live with them…
Squiffy
lf you think it is in too far – you could try gently turning it and easing it back out a little way – and see if this makes it feel more comfortable. l have had one of the nurses push it in too far – and it blocked my uretha – but l understand it better now – and can adjust it.lf it is in too far l feel as if it is stabbing me when l am sitting down.
lf the balloon end gets stuck on to the bladder wall it will make it sore and bleed – so a gentle ‘turn’ a few times should settle it down. With a flip flow valve – you only need a short length cath – otherwise it will possibly kink. Female length cath is about 8inches. And don’t let them put a latex one in – these can cause such a bad reaction.
I also get that slurping feeling when I finish going, I dont think its to do with it laying on the bladder wall as I have mine changed every 2 weeks and always have the feeling even when its been moved, I dont know why it happens but totally understand how horrible it can feel x