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
Hi, I’ve had my SPC for 11 months now. 11 months of torture because of on-going spasms and intense pain. One Dr. said the only way to relieve the pain is to have the SPC removed – nothing else. Another says I need another pelvic sling (the old one is working just the way it should however an the Dr. that said this never even checked it out). All I’ve been given for pain is Tramadol 50mg and if you’ve ever taken it for pain you know it doesn’t work. I’ve tried all the pills for spasms, even had botox injections (which worked a little but didn’t relieve the pain). Now I’m told I have an “edema” in my bladder (I saw it on a scope they did). My concern now – besides the pain – is what is this growing in my bladder and what can be done about it. I asked about a biopsy to find out what it is but I’ve basically been ignored – along with the “gee, sorry you’re in pain but we don’t see pain associated with this type of catheter. We can take the catheter out.” I have now seen about 6 different Urologists but get no answers and no help. I’m going nuts, the pain is becoming unbearable but if the catheter is removed I will be basically housebound since the leaking (which I still have in varying amounts) will be uncontrollable requiring me to change my Depends on almost an hourly basis which would include changing my clothing too since a Depends only holds so much liquid before spilling over. I’m 60 years old, I don’t want to be housebound, I don’t want to be in constant pain – I want to have a small amount of life that I can enjoy. I just saw a specialist yesterday – I had to travel about 500 miles to see this Dr. and when I got there I was told she didn’t see people with SPC’s! I had to wait for more than 4 hours to see somebody and then it was, you guessed it, the one who “didn’t” see people with SPC’s! She never checked the SPC, never even asked to see it! Read the other Dr. notes and said she thought she could help – a bladder sling! When I told her I already had one that was just fine she said she felt that a “new” one would do the trick. Asking about pain got the “We can remove the catheter” response and when I told her it would leave me housebound she looked at me like I was crazy. Asking about the growth in my bladder provoked the response that “Well, we could do a biopsy, but we need to find out what is causing your incontinence”! Where can I get some help, any body know?
Lynne
Have you tried the anti-spasmotic drug – Vesicare? I’ve been taking now for three weeks because of bladder pain from spasms and its wonderful. The only downside is the constipation. I need to sort that bit out. At least I am pain free.
Sounds to me, you may need to do some research on Urologists and which person may suit you best. When was the last time you had a cystocostomy (???) which is an investigative look inside your bladder? I have one annual (actually, next Tuesday is the day for me).
I also invest in chinese traditional massage – that helps me too.
Cheers
JWTAS
Lynne, lt all sounds horrific. Why oh why do the medics not take notice of you.l have had a SPC for 18yrs – lost all control of my bladder due to MS. Have had some bad moments – but nothing that could not be sorted out by a phone call to the district nurses. 90% of the time it has been a god-send for me. Which makes me think that your problem is not the SPC but as you say a ‘edema’ in the bladder. Another cause of bladder pain is a latex catheter – the silicone ones are much better excepted by your bladder. The SPC is a foreign body and naturally the body wants to rid itself of the intruder. Vesicaire could help with spasms. l use Sativex – which l get on prescription from my GP. lt is a cannabis based spray that you use under your tongue. lt helps with pain and muscle spasms associated with MS.
l do hope you get some help soon – you have suffered too long.
belly bags.
should you use these on top of underwear or under your underwear. I have tried it both ways. Wearing it under mnakes my belly button sore how do others wear the belly bag. I find it more comfortable than the leg bag and the bed bag
Alicia,
I have been wearing a belly bag as my primary bag for almost 2 years. When I first started, I didn’t like the plastic against flesh, so I cut up an old towel into pieces of an appropriate size to put between the bag and me. I also took strips of the towel to put on the belt to keep it from chafing my sides. I have since found that a cloth diaper is just the right size to use with the bag and it adds a little extra padding as well.
Last time I went to order bags, I was told the FDA had to approve a different supplier for some of the parts. I hope they get that figured out soon. I really like the bags.
Alicia,
l do not wear a belly bag – but do wear my drainage bag tied by a lace around my waist – so its the same effect. The bags l use are by a company called Manfred Sauer – run by mostly disabled people who know what they need and what works for them. The bag l use has a ‘cotton feel’ backing so is comfortable against the skin. lt is a 600ml so is big enough to sit nicely across my tum with the tap end by my hip it sits under the pocket of my jeans- so easy to just open the top button on my jeans to release and empty. The bags are 710.2204S – Manfred Sauer will send you samples if you contact them. l keep to the same regime at night – all tucked into my tight short style panties – all very comfortable – and no dragging on the catheter site. lf l wake up and find the bag full l just empty it into a plastic bottle to save me getting out of bed. Never empty completely to avoid getting ‘bladder suck’. Recently had a total hip replacement – so getting out of bed is a slow painful business at the moment – so l do usually empty it into the bottle when l first wake up in the morning. Then l take painkillers and wait for them to work before trying to get out of bed and struggle to the shower room. Every day is getting easier – but l am so glad l have my SPC. l am still taking the D-Mannose – and now never have any sediment in the cath. l do occasionally just give it a turn or two or just pull it back a little if l get any painful spasms.
Hello, my mom has had spc for 6 months. Since day 2 after surgery, she has suffered with severe cramping, stinging and urine coming from the vagina. only about a tablespoon with every single incidence of cramping. it has been a nightmare. ER trips, hospital admissions, dr calls, pill after pill, all to no avail. Finally, last night at the ER a dr did a special CT scan, and found a vesicovaginal fistula. I have researched this and now know what it is and where it is located. Has anyone else had this happen to them? I am quite sure this was caused by the insertion of the catheter going in too far, but looking for others who have experienced this.
WORRIED
I have been told i am on waiting list for having botox injections into the the bladder in about 2 to 3 weeks. They have told me that this may not work. They are doing the botox because of the severe bypassing I am soaking though 6 to big pads per day. I wont go out anywhere because of this. They have said if it dont work they are going to bypass the bladder all together and do a stoma and join the tubes from the kidneys into one so i drain direct from the kidneys.
Has anyone had botox injections in tnhe bladder to stop the bypassing if so did it work and what should i expect when they they do the botox is it done by a GA or local and what happens afterwards. Pain ect any bleeding aftecare.
can any one help I have had my spc over 2 years now and the last few changes have been hell so much pain I am left crying I saw the dr but they said all was ok inside as I had the camera but the pain is when they take the spc out and put the new one in I just don’t know what to do as I cant take much more of this every few weeks
Freda: I’ve had that problem too after having the spc over 2 years and the home health nurse now has me put warm compresses (a wet wash cloth heated in the microwave) on the insertion site 3-4 or more times in the hour before she comes and it makes changing the spc much easier.
Good luck.
My 6 weekly spc changes have gradually become more painful too lately. The dn and doctor reckon it is caused by ‘over-granulation’ (tissue growth) at the side of the wound. They advised my to have it removed in hospital under a local anaesthetic.
Freda
I have painfull changes … they even send 2 nurses now because they find it traumatic too. Two things might help: skin could be attaching to catheter so if you turn catheter 360 degrees every day especially days leading up to change it might come out better. If the water is withdrawn from the balloon too hard the balloon becomes a flat, hard shape wider than cath circumferance and can cut into fragile skin tissue. So leave a fraction of water in balloon so it remains smooth. I was getting granulation for awhile … started eating lots of cherries and it went away.
Good luck
For granulation, there is a new prescription cream available that is used in small doses to remove granulation. It does the same as silver nitrate, but without burning sensation. You don’t want to get it on surounding skin though.
Make sure catheter is silicone. I know this has been mentioned, but sometimes it may be overlooked as a source of irritation and pain.
Hi everyone a while since I have been here. I am having a problem with my spc site. If I have a prolonged period where I cannot stand even with support, the first time I am able to stand whilst supported I am having bleeding from the site. As in dripping blood. Has anyone else experience this? I am on warfarin and dont know if this has anything to do with it.
thanks in advance .
ann
I’m 21 and due to have a spc inserted next Monday. I’m really worried that people might notice it. I always like to look my best but I don’t really know how to do that whilst carrying a bag of urine on my front! I’ve been feeling really depressed, not wanting to even get out of bed at times. I need some advice from people who already live with this to maybe explain a few everyday things to me? Thank you much appreciated.
Dear Rachel, my mom has it and is not wheelchair bound. She goes out with me, wears her normal clothes, wears underwear over the bag, which kinda makes it all flat, then puts on her pants and a blouse that hangs over her pants. Can’t even tell its there. You might have to change what you wear, I don’t know. But for my mom, it doesn’t show at all. I hope that helps and I wish you the best.
Lisa
Rachel, l can understand how daunting it is to have to have a SPC at such a young age. l have had mine 18yrs. And l can wear it with tight jeans/leggings without it being noticeable. l use a 600ml bag that fits directly onto my short/female length catheter. So only about 5inches of tubing. By tying the bag with a cord around my lace and a pair of tight shortstyle panties to keep it all neat and tidy – lt is so easy and comfortable – l stay the same at night as well. Can even get into my jodhpurs to ride my horse. So its not all gloom and doom. And what a relief not to have to wear pads etc.
HI RACHEL I know what its like but now I have gone over to flip flow valves so no need of bags and so much nicer but I do put a bag on at night or I have a lot of pain hope all gos well for you
Hello Graham, and Co…
Its been a very long time since I said Hi here, Ive finished chemo a year ago, and radiation sept 2012 ( breast cancer) and in remission now. All that’s going ok with a few twinges here and there. But, my poor bladder has copped a fair whack from all the treatment. I endured a nasty staff infection for almost 4 months, ended up in hospital on Gentamiosin, and Vancomiasin and some other thing that made me rash! And several small UTI’s after that, but again, another nasty. My bodys resistant to Trimethraprim, so Im on Norfloxacin, but 4 days in and Im still blegh! The spasms, niggly twinges like I need to pee a lot. Im getting my cath changed (SPC) today instead of next week, hopefully that will help. Ive had flecks of bladder wall come thru too, not nice! Anyway, just saying Hi! And hope your all good! Im off to America ( Arizona ) mid 2014, will ask about flying ‘lessons’ on SPC’s later on! Keep Smiling!! xx Gayle. Lakes Entrance vic.
Hi everyone… just an update on my progress I had a SPC fitted on february 18th.
After 4 months.. I have finally had it removed. This was the advice given
By the surgeon. I have had 14 really bad infections… severe discharge from the site….16 sets of antibiotics. ..morphine patches/ oral morphine 10mg vesicare. The pain on catherter changes were horrific. Have had a real bad time!!!
My body is rejecting the catherter and I am reverting to self catheterisation on a short term basis.
The hospital have said that they belive the botox injections will not likely work and are reluctant to give me them.
The surgeon’s have indicated that i am likely to have a full urinary diversion within the next 12 months. I am really reluctant as I know this is major surgery. However this is the only option.
Overall my experience with the SPC.. was the worst experience of my life and just not ment to be. I would like to thank everyone over the last 4 months for your vital advice and support. Especially to ANDY thankyou. Xxxx
Hello Gill
I am in about the same boat as you. I have my spc for the rest of my life i cant pee with the cath. If they take it out i go straight back into retention (acute and chronic). I have failed 5 twoc. I have been told I have to have botox into the bladder for severe bypassing and severe bladder cramps. I bypass from the ureather i soak about 7 to 8 pads daily. My cons has told me that the botox may not work and if it dont work. They are going to remove the bladder and do a urinray diversion any way. As you know this is a major op but i dont really mind. My bladder muscle is completely distroyed and will never work as it should again. (It dont contract to let me pee). So my way of thinking is if my bladder dont work and never will . To have removed may be the best option for me. Even with the urinary diversion I will still have to have the cath. For me i would be quite happy to the bladder removed route at least i wont have the severe cramps and the bypassing.
hugsxx gill
alicia
Alicia, my love, I feel your pain, and my heart goes out to you, i can honestly say that i know how you are feeling. It sounds as if our symptoms are very much the same. My bladder muscle is not working too, and i go into retention. I was advised to have a SPC fitted by my consultant as i have a bend in my water pipe too and its painful when I self catherterise. However I have the SPC fitted 4+ months ago, and all i can say is it is the worst 4 months of my life. The pain, the spasam’s, 14 infections, bypassing from the ureatha, leaking from the SPC with green peri catherter leakage.. i was getting pain spasams the equivalent like i was having a baby, and was on morphine patches, and having to take morphine by the bottle, 14 sets of antibiotics and taking 10mg maximum doze of vesicare.
My body was just rejecting he catherter and had to have it removed in the end, i have reverted back to self cathertrise short term, just to give my body to heal. Alicia, my consultant said its likely the botox would not work, and it could leave me worse off. :-(
I really am frightened about having to go through the urinary diversion.. i would hate to think i would go through the pain and the trauma like i have gone through the last 4 months. ( i could not cope)
Alicia, Can you self catherterise? having the SPC removed has stopped all the pain. If you can i would strongly recommend you consider having the spc removed on a short term basis, just to allow your bladder to heal and give your body rest bite.
Keep in touch flower, and i would be interested to see how you get on.
((((((( BIG HUGS))))))) XX
hi all thanks for all your help I am getting the dn to check all the info you have all given me and find out why I get so much pain with the changes lets hope she can work something out for me if she can I will let you all know as my dn is great and dose really care and if she can help she will
big hugs to you all and keep your chin up
Hi Freda
My urologist put me onto to Vesicare for the bladder spasms and intensive pain during catheter changes. My pharmacist/natropath has me on Metagenics Laxatone and I am taking a probiotic from Ethical Nurtirents for IBS support. Good digestive health has allowed me to be PAIN FREE! Lucky me. hope these things may assist oyou too. O:)
Hi again gill
Yes our problems are much the same. I too have a kink in the water pipe. I cant do isc because of it. I also lost the feeling of the bladder being full. So isc would not be suitable for me,the isc gets stuck and i cant remove it. When i had the ureathal cath they had to knock me out to change it. It would get stuck on the kink,knocking me out was the only way they could change it. I have problems with the spc as well severe bypassing from the waterpipe and severe bladder spasms. They have fitted the spc twice once in june last year and again in dec 2013. The first one site closed up and they could change it. I have two other op on the bladder. I had a bladder prolaspe op in 2008 then again in 2011. the first one failed. Each time i have post op compilcations. The first time i has a hysterectomy as well. All was well for 5 days then i hemonaged i was rushed back down to theather again 3 untits of blood was given.
The next time i contracted double pnemoina 3 days post op. I was in hospital ten days. Then when the put the spc in again in dec i got septicima and was in hospital again for 8 days.
I am seeing my cons on friday july the 5th I am hoping that he will suggest removing the bladder instead of the botox. I would go through the the major op and everything to go with it just to be spasm free and bypassing
love and hugs Gillxxxx
update on seeing the cons. I saw my cons on friday he says that i have have thickened bladder wall and the ureaual wall is thickened as well. He has booked me in for a ureathal dilation and a cyoscopsy on tuesday at 11 .30 am. He has also said that being i have to use a catheter for the rest of my days it may be better to consider to change to isc (self cath) or stay with the spc. The cons also said that if the dilation dont work. they will have remove the thickened part of the urether and then rejoin it. Can others advice on keeping the spc or change to isc. I am getting to the point that i will do anything to stop the pain in the urether and bypassing. any info on the dliation as any one been though it ect I dont know what expect
I am having the op under GA.
hugs to allxx
Hi guys. My mother has MS and has had an SPC for a few years. She started with a change every 4 weeks, and we changed it to 3 weekly to reduce blockages. She is now blocking consistantly every 1-2 weeks. Her urologist states she produces a lot of sediment. Every medication she has tried does not work long term. We monitor her fluid intake and know it is not that, but I am at a loss what else to do and her nurses & urologist are not really giving me any new information. We have tried flushing which doesn’t seem to make a difference, and she has had a few bladder washouts which help for a month and then we are back to normal. Does anyone have any ideas? willing to try anything at this point. Thank you.
I’ve had my SPC for about 5 years now and the reason i got it was because everyone said it would ut down on the UTI’S. I used to have around 2 UTI’S a year, but now that i have the SPC i have around one every other month and have to go to the hospital for IV antibotics since pills don’t work anymore.
After the first one was put in i had to go to the hospital for the Dr. to put the new one in to make sure everything was ok. Now i have my homehealth nures come to my house and change it once a month.
Every since i’ve had my SPC i have had a drainage around the cath sight on my belly and it has a smell and blood and i clean it everyday and put a bandage around it to keep it from leaking every where. The Dr. said it would stop after awhile, but it has’nt. I want to no if anyone else has this problem. Just the other day i had to go to the hospital because i went to take my bath and there was blood every where from around the SPC and that was the first time thaat has happened. I’m at my wits end on what to do beause i can’t use a cath through my penis right now for medical reasons.
If anyone nows what i can do e-mail me please and let me know.
Terry, Thank you
Hi Amanda, I have the same issues. I now flush with a vinegar solution twice a day. I also take oxybutin daily. Flushes with saline or sterile water also work. I can get you the vinegar recipe if you want.
Hi Jinx711 – The vinegar recipe would be great. We are willing to try anything. thanks very much.
hi sexy
hi guys and girls. Well the op went well very tired today and very sore. I am now waiting for the delayed bleeding. None so far they said that i had a very narrow and tight urethra, the walls was very thick. I aslo have a very small bladder with small captiptiy approx 170 at the most. I still dont know if isc wold be good for me as i have a small bladder. What do others advice.
draining blood into the leg bag. I have just spent two days in hospital I was draining blood into the leg bag . This was going on for three days before i got admitted has on the tuesday it got heavier. It was a red wine color . Has any any one gone though this and what could of coursed this. Now tonight i having clots does this mean that it is going to bleed again
thanks
Alicia
Alicia – it sounds to me like you need to be in hospital immediately. It could be something quite serious. Don’t wait for it thinking to get better. Go to your hospital immediately.
I’m not a paraplegic but I am trying to meet someone who is someone please help me my name is Mark
Mark, please read the rules in our forum dating section and post there if you wish. This page subject is supra pubic catheters, not dating.
Hi.
I’ve had my spc since 26th April this year and I need some advice about esbl producing e-Coli urine infections. I used to get these when I had a urethral catheter and now they’ve started again with the spc. I submitted a urine sample which has tested positive for this infection. There is now only 1 IV antibiotic that will treat this infection. My GP said last week that they would only admit me to hospital if I am systemically unwell and, given that I am frequently in hospital, I chose to stay at home.
My symptoms are: cloudy, smelly urine, a slightly raised temperature, frequently bypassing and when I do it burns to pass the urine, a feeling of heaviness and pain in my lower abdomen over my bladder, spasms of pain on both sides of my back where my kidneys are and my feet and ankles are unusually swollen with fluid retention.
My questions are:
1. Will this infection go away on its own untreated, or will it just get worse?
2. By leaving it untreated am I risking damage to my kidneys?
3. Why does the infection keep re- occurring even after antibiotics?
4. What can I do to prevent this from happening? – I already drink 4-6 litres per day and take Cranberry capsules.
5. Should I go into hospital for antibiotics?
6. What happens when they run out of antibiotics to treat it?
I have a phone appointment with my GP ina few days but I wanted some advice from experienced folk before I spoke to her as she is quite a young doctor. Sorry for the length of this post,
Fiona
This website is an awesome resource! I have had an SPC for about 6 months now and think I have my first UTI. Unfortunately, I don’t tend to show any significant symptoms, so it makes it really hard to tell until my culture comes back. I chose to get my SPC because I have MD and am non-ambulatory, making bathroom use impossible without someone around to help. This site has provided me with a ton of useful information. Thanks!
A few questions: 1. What is a flip flow? It is a plug you can use on your spc to empty yourself rather than using a bag? If so, can someone please tell me where I can find them?
2. How can you tell if the balloon deflated? Will it fall right out? Will I feel it deflate?
Thanks!
Fiona, I may be to late but will try to answer your questions.
1. No, it will just get worse.
2. Yes, permanent damage even kidney failure.
3. Urinary Tract Infections are mostly born of poor hygine.
4. Keep your Supra Pubic Catheter site clean and dry, expose to 10 mins sunshine daily, clean with sterile saltwater, and follow our other dietary and hygine tips in the article above. A silver coated catheter may also prove beneficial for you.
5. Unless you can get an in-house nurse to come and change your IV 3x daily for 7 days, yes you should go to hospital.
6. In that case you need to go back to answer 4. and follow a strict hygine plan. I encourage you to do so before antibiotics are exhasted.
Jean-Marie,
1. A Flip-Flo valve plugs into the catheter replacing a urinay bag. Obviously you will need to empty more frequently and require some dexterity to do so alone.
2. You will not feel the balloon deflate and it can fall out. Best way to check is tape down the catheter at site to your tummy, or hold in place so it won’t slip out. Plug a 10 ml syringe onto the balloon port. Withdraw the water to see how much is there, then reinflate and top up if necessary.
my son has a suprapubic cath since july. he is severely mentally challenged so he cannot really tell me if he is in pain I have to rely on his behaviors. this has been a real issue with his urologist in prescribing meds. the problem now is he is having an overflow of urine from the penis. urine is still flowing into the cath bag too. this doesn’t seem normal to me? we have the bed wet most morning too due to a very we diaper. it is not leaking from the stoma area. any input would be most appreciated.
Hi, weldone for good job.
I have been using spc for over 2yrs now, but i notice that cathetal decay into my bladder that gives me much pains until when all the particles are completely clear and i will relieved but the maximum of 4 weeks i use a latex cathetal.
Now i want to remove my spc completely because i can discharge urine through my penis completely without uretoplasty surgery as my doctor said before but with help of chinese herb food suplement(KEDI HEALTHCARE). Now i have try to remove my spc overnigth whelther the bladder will closeup but not. What should i do now?
Hi everyone,
I am on my 3rd sbc, 2 foleys in between. I am waiting for ureathra reconstruction surgery. My last sbc was inserted wrong, and I suffered unbearable pain with that. I lost sensation to have a bowel movement. Instead, I had horrific pain in my genitals. I also had loose bowels and diarrea.
My surgeon said it was nerve pain from an abdominal surgery and the pain would cease once the nerves started to heal. The pain and diarrea only stopped after I had my catheter changed.
What’s spc?
Never mind, am new to this site and new to my injury if 18months steel new! Just found out what spc mean.
How to secure leg bag so as to permit walking,etc
John – l have had a SPC for 18yrs. And l have always managed without securing the drainage bag to my leg. l use 600ml bags from Manfred Sauer that have direct contact valve – so no tubing. And l use a cord to thread through the two eyelet hole on the bag to tie around my waist. With a pair of snug underwear it keeps in place so comfortable. No dragging on the stoma site and no kinking of tubes which causes loss of urine urethally. lts a coincedence your question. As l was at a physio class on thursday – and he was being helped with exercises and they were trying to get him to walk holding onto the bars. l could see he was so uncomfortable – as he had a drainage bag strapped to his calf – and it was bulging out through his trousers. When l got a chance to speak to him privately – l mentioned to him that l also have a ‘bag’. He was amazed as l was wearing very tight skinny jeans. When l explained to him what l do – he was so relieved and said he would try to do the same. l do have the short length catheter – so l only have about 6 inches of tubing exposed. The bags l use have a cotton-feel backing that is comfy on the skin. Manfred Sauer 710.2204s is the product number. The people who work for them are mainly disabled – and they know exactly all the problems we have.
John,
You may also want to look at the Rusch belly bag. I have had great success wearing that and doing my normal routines which involve a good bit of walking and working. Athomemedical.com seems to be the best place I have seen for those.
I stumbled onto this article today. My husband became ill in June 2012 and after surviving Necrotizing Fasciitis and C-Diff, was finally diagnosed with Crohn’s Disease in December of 2012. The Crohn’s ate a hole in his urethra and he now has an SP Tube. Not sure how long it will have to remain. We struggle with the clogging and the spasms constantly and he has to have the tube changed every 2-4 weeks at the Dr.’s office. It’s a constant battle. So much of the information you have written about in your article as well as the many of the comments left by others will help us tremendously. The doctors, as most of you probably know, don’t share enough info about these things because they don’t “live” them. Just wanted to say THANK YOU ALL for sharing!
Sharla, How distressing for your husband – and for you. Crohns is a auto-immune disease as is multiple sclerosis which l suffer from. Vitamin d3 deficiency is connected to these diseases. Just google vitamin d3 deficiency crohns. l take a high dose vitamin d3 10.000ius daily – l get them from good old amazon Healthy Origins softgels – a years supply is only £15.
Another good website about SPC’s is (Admin says – links to competitors websites are banned). lts all interviews with people who have personal experiences of a SPC. l have had mine for 18yrs. l am in the over 60 section and my name is Frances. l was videod/interviewed last year for it. Fame at last!!!!!!!!!!
Hi again
Back in june they said they would try botox to control the leaking from the water pipe. Then they changed their minds to see if it would calm down with stronger drugs. This did not work I had a urudymantics study about 6weeks ago. This showed that the bladder only holds 120mls.Due to prolonged use of a permerant catheter about 5 years now. 3 of these with a spc loads of problems with it bleeding , difficult changes, pain, and infections. I am still leaking more than ever soaked most of time. They are going to try botox to stop the leaking I have the first botox on the 19th nov . They also me to change to isc,but I am unsure about it. They say I have to bottox for live if it works if not a bladder enlargement is the next step. As I have use a cath for a lifetime should I try isc or keep with the spc I find the spc very convenient. I am hoping to use a catheter vavle does the valve let the bladder fill normally . I will have use timed empyting I have no urges to let me know when I need a pee if the botox stops the leaking. Any advice please
thanks and sorry it is long comment
Bill and Trampergirl
Thanks for belly bag advice. Have ordered one
john
Hi everyone, I just had my 3rd botox treatment, my 1st in clinic. I lost the use of my legs to a degenerative nerve disease and still have feeling. I was afraid to have the procedure without being put under, but it went very well. My bladder was filled with a lidocaine solution and I was able to watch on the monitor. It was no more uncomfortable than the many urodynamic testings I have gone through. Discomfort lasted 3 days, then the wonderful feeling of no bladder spasms. I have stopped detrol and stopped wetting myself. A big lesson learned for me is when I am symptomatic for an UTI I need treatment. Every day I have to work to avoid infection, incorporating all I have learned from all of you and listening to my own body. Constipation is my biggest risk factor for UTI’s and my biggest fear is messing myself in public. I can survive public humiliation, antibiotic resistance is another story.
John,
I hope you find the belly bag as useful to normal movement as I have. One small thought. I don’t care for the plastic and the nylon strap against my skin so I put a cloth between me and the bag and strips of cloth on the belt. It makes it much more comfortable to wear. I also find that putting a piece of 1″ cloth tape on the plastic strap on the front that holds the discharge valve up seems to make it hold the valve in place better. It’s not a perfect system, but you may have noticed perfect is not a place we live anymore. But we are adjusting to the new normal.
l expect many of you have had to take meds to control bladder/bladder spasms. Most of these have terrible side-effects. Dry mouth etc. So l was pleased to hear of a new medication called Betmiga. lt works very differently from Oxybutinin/Vesicaire/Detrusitol etc. So it is really good news at last. l know of two people who have started on it – and straightaway it has made a big difference to their lives. And they are not on the full dosage yet. Thought l would share this with you all.
Trampergirl, do you know what are the side effects for Betmiga, I currently take oxybutinin and I really dont like it, thanks for sharing this valuable info.
Trampergirl and Moondog
I have been on Betmiga it does have side affects. One is it makes you very sleepy and made me feel very sick. Also it did not work for me I still had the bladder spasms or the leaking of urine from the water pipe.
It might work for some but it did do anything for me, I guess I am just on of the unlucky one where nothing works.
A friend of mine wants to find some kind of pouch or cover for her belly bag (her “Joey”) to prevent infections. Her stoma leaks, which gets on the back of the bag, which for some reason is velvety and cannot be cleaned off very well! I haven’t been able to find any on etsy or other handmade items sites. Does anyone use pouches for their belly bags or is there another solution?
Hi Brianna, I think you will have to try asking the people who make the belly bags or make your own cover. A better solution would be to seek a doctors assistance to remedy the leaking stoma.
Brianna,
Actually, I didn’t like the feel of the velvety belly bag and I experimented with different kinds of cloths between my skin and the bag and I have found an old fashioned cloth diaper to be ideal. It gives a little padding and absorbs anything that comes out of the stoma and is made to be washed and reused.
Thanks Alicia good to know!
bloody cath changes
I am not swearing but yesterdays cath change was horrid. It really hurt when they pulled it out blood and urine every where. They had trouble putting the new one in when I left the hospital it was still bleeding and very pain full. When I got home the pain was horrid and was pain full all night. Now today it still weeping and bleeding a little. Would you keep a dressing on until it stops.
As any one else had pain full and bleeding cath changes. If so how do I make sure the next change is not so pain full and bloody. I don’t think I cope if the next change is as pain full as the change yesterday. The pain was horrid and don’t want go though the pain again. So any tips on cath changes to be less pain full and not so bloody would be very helpful.
Alicia
Hi Alicia,
I’m afraid I don’t really have any tips as to how to make the catheter changes any less painful. I really just wanted to post and say that it sounds like you’ve had an awful experience and find out if the pain is easing now?
I’ve only had my spc since the end of April. My first catheter change was very painful but gradually the pain has been easing each time I’ve had it done. In my limited experience, the painful changes are with people who are very rough and don’t give the numbing gel time to work. Was the person who did your one really rough? Did they use any numbing gel? The last time mine was changed it was only taking the old catheter out that was painful -I never felt the new one go in.
Sorry, I know I don’t have any useful info just wanted to sympathise really. I hope you’re feeling better today.
Fiona
Thanks Fiona
Yes the pain is easing today,but it is still ozzing a bloody discharge. I had the change done at the hospital the cons who changed it. Pulled the old one out very sharply and very quickly. I don’t know if he used any numbing gel the pain was that bad. I was not thinking straight. The bleeding was quite a lot. I think I will ask for sedation next time as I don’t wont to go though that kind of pain again.
Alicia
Alicia,
Well thats no way to treat a lady! They seem a bit rough and sadistic. My district nurses have been well trained and my catheter changes go ahead without any trauma. ln the past l have had one who was heavy handed – and it does put you off having it done the next time. The worst person for changing it was when l was in hospital and the consultant urologist did it. Even the nurses with him flinched. l have mine changed every 5weeks- any longer then it can become harder to remove as the catheter tip becomes crystallized. Make sure they get all possible liquid out of the balloon – this is the part they should do slowly. l prorefer the glycerine solution in mine. lf 10mls goes in – its 10mls that comes out. The lnstallgel numbs the area – and they put more in after it is removed before inserting the new one. Make sure you drink plenty of water just before the removal – and do remember to give the catheter a turn around now and then. Prevent it from sticking to the bladder wall – as this will bleed if it has adhered it self. The drainage holes work like a sucker.
lf they can give you something to help relax you for the next change – do make sure that they are not so rough. l use the Sativex spray for my MS muscle spasms – and a wiff of that makes a difference.
I have my catheter changed every 5 weeks too and found it also quite a painful procedure. However I now take painkillers (paracetamol and codeine) couple of ours before the change. I had a new DN the other day and she did let me pull out the catheter myself. She said if you do it yourself it causes less pain and she was dead right. Piece of cake, my last change was virtually painless.
Can you work while having to self catherterize yourself at work? My jobs requires a lot moving around, the day to day duties are never the same. I’m very worried about not being able to perform my job as I have before this new life change.
Just a few clarification I have seen mainly directed at the horrible cath change of Alicia. I also have not heard of such a rough change. Several people wrote in and made suggestions each having merit. A couple clarification and possible reasons for the problems you encountered.
First if 10mL goes in you will not get 10 out, some is lost in the lumen and if you are using 100% silicone some will be passed through the material. However this still should not have caused the amount of difficulty experienced. If you did have a 100% silicone it might have occurred when the balloon was deflated, as silicone can often cuff making a step. Make sure the individual removing the balloon fluid does not pull on the syringe plunger. You want the natural deflation of the balloon to push out the fluid. If a gross shortfall in mL is noticed one can apply a small amount of pull. This may have taken place. With the right manufacture there should not be a cuff FYI.
The aspiration also may have caused some of the pain as mentioned the mucosal lining can be sucked into the eyes of the catheter, by which upon removal pulled and cut.
It did seem you were bleeding from the stoma site and not inside the bladder? Did you notice blood in the urine after incident?
Other possible items that may have played a role in pain and bleeding, encrustation as mentioned. By mentioning blood and urine went everywhere it sounds as though cath was partially blocked.
Just hoping some of this helps.
Greg
I’ve had s SupraPubic Catheter for just three weeks. It is great to find this site with so much experience. I have questions regarding use of Belly Bag. All the instructions I read state to keep any collection bag below the site of the catheter, including night time collection equipment. The Belly Bag seems, at best, to be slightly below the catheter. Can anyone comment on the use of the Belly Bag through the night?
Thanks Greg.
Yes it was bleeding from the site,and a little blood from the bladder. The bleeding lasted 3 days. It really hurt when pulled out the blood and urine was coming out from the site. Now the urine is very cloudy and the site is still painfull. I had the change done at the hospital, I thought that they would know what they was doing.
alicia
Benny,
I have been using a Belly Bag for about 28 months, but I change to a night bag for sleep. To me, it gives the site some time to air out.
Hello,
I face difficulty when I remove the catheter because the sediments form a ring around the eye lit. How can I reduce this. Everytime I change a catheter do I have to take an antibiotic? Is the urine completely removed from the bladder or is some residual left. How can this residual urine be removed?
My nurse has me put hot compresses on the site for about an hour before she comes to change the spc–it softens any crystals around the eye lit and then the cath is removed pain free. Don’t know about residual urine, I just commented on cath removal/pain.
Crystalls blocking the catheter eyelets was a trouble l use to have. lt means you would need to give a tug to free the cath – which you don’t want as it causes trauma. l now have my cath changed every 5 weeks. And l take D-Mannose capsules all the time – to keep urinary tract healthy. l do not like taking anti-biotics too often – as l am concerned that they might stop working. My district nurse uses lnstilligel to numb the site and aid the insertion of new cath. But l will try Patricia’s tip about a hot compress on the site before the nurse arrives. l do make sure l drink a glass of water beforehand – as they do like to make sure that the catheter is flowing well before they ‘seal’ it off.
l don’t understand your comment about residual urine – as its my belief that the bladder should never be completely emptied. The bladder is like a deflated balloon and because the SPC is emptying all the time – it does shrink – then it does not hold the same as it did. l have had my SPC for 18yrs – so hate to think the state of it now. All shriveled up and wrinkly.
Just to say that – l can see that the D-Mannose works as there is no sediment in the cath – its nice and clear.
Alicia,
Understood, as mentioned it is difficult to be entirely confident as to where/how the stoma site was damaged, but clearly as you mention that is where the blood was/is coming from. I believe the next time your change is due take note of the amount of mLs removed from the catheter balloon. Depending on whether it is latex or silicone there should be no less than 7-8mL removed from the balloon before removal. Also cuffing with common foleys in 100% silicone can be an issue. As mentioned and not to self promote, cuffing does not have to occur with newer silicone catheters. Lastly, and I am starting to believe since you have had a lot of pain and bleeding that encrustation was more at fault than mentioned other issues. Is it possible to have your cath changes occur more frequently, like every two weeks and not the norm of 4 weeks and some times 5-6?
If it is a cost issue your urologist can prescribe up to two indwelling caths are needed because of blockage etc… Thinking is this would help to identify if indeed encrustation was the issue.
As for the white cloudy material being experienced, if no UTI is present the material is mucosal tissue being shed from the bladder wall. The mucosal, mucin and/or GAG (glycosaminoglycan)to cover all the items that protect the bladder, also know as the innate defense system. This barrier is non-specific, meaning that it attempts to shed in the presence of “any” issue that is foreign, including damage to the wall.
My suspicion is when your change occurred your bladder was void of any fluid, when the new cath was inserted it it probably stuck the back wall of the bladder (www.urologyhealth.org). This cloudy material should clear up quickly as the lining heals.
Regarding the item i just saw addressing the belly bag I feel this was answered by Bill ie switching to night bag. More volume etc also respectful to position of the belly, generally it should be below the bladder. Our maker manufactured the system to drain completely, thus removing any possible bacteria that may have entered the system. This is especially important for woman due to the shortened urethra. It was mentioned that some residual urine is always in the bladder, while true it is not ideal for this to occur.
The encrustation around the eyes of catheters is difficult to pinpoint, obviously it is minerals being deposited on to the catheter material. I would try different type of material, D-Mannose maybe helpful why not give it a try, also before catheter change a irrigation blast may break some of the encrustation away, so the removal is not as painful.
Totally agree with antibiotic stewardship….!!!
Yes the bladder will shrink and after 18years probably very small. However this really does not matter, as long as good contant drainage is taking place.
Regarding the comment “can you work why intermittent cath by Bono… Absolutely yea. At Poiesis one of our team members intermittent caths no problem. He handles shipping item, data input, and FDA matters for the company. Great guy always a positive attitude and he is moving on up and continues to take on more and more responsibility. I should send him this site link and let him express himself
you can reach out to him at [sorry email addresses are not allowed – admin]
Thanks
Greg
PS no Australian pictures on company time
Hi,
I’ve noticed several people mentioning D-mannose on here to help prevent UTI’s. I’ve been suffering from almost continual UTI’s (partly due to a lowered immune system caused by daily steroids for asthma and diabetes) for months now which has meant that I’m spending almost 50% of my time in hospital on IV antibiotics, so I’d been keen to try this. I’ve found them available to buy on Amazon but I’m not clear about how many tablets I should be taking. Could anyone tell me what dose they take so that I can work out whether or not I can afford to buy them?
Thanks,
Fiona
Thanks Bill. I too have been using the night bag. I find it very confining to the position in which I try to sleep. That’s why I’m looking for someone who tries to use the Belly Bag while sleeping. In any event the Belly Bag sure is easier to use than a leg bag in the day!
Benny, l wear my bag across my tum – the same as a belly bag – l have the short length catheter – and l connect DIRECTLY – to a 600ml bag – so virtually no tubing – so no kinking. Just thread a lace through the eyelets of the bag and tie around my waist. l stay the same at night. lf l did need to empty at night l can just use a plastic bottle to empty in to. So depending on what capacity your bag is – you could try to do the same. lt still flows just as well – without the discomfort of being confined to one position in bed. Also you could connect your drainage tap to the night bag.Thus, giving you the best of both.
So yes, you can, at least l do and have done for years – keep to the belly bag day and night. What is the amount you drain over night? For me – it is about 500ml. But then l do not stay in bed for long.
Trampergirl,
Thanks for your info. Since I am new at the use of these devices, I must ask, what kind of a bag do you use. Regarding my use at night, I suffer from Nocturia which causes my night time drain to be 800 to 1200 ml! However, getting up one or twice a night would be a significant improvement over my pre-op 5 ato 7 times per night. That’s why I continue to search for means of improvement!
To Bono: I self-cathed for about 42 months after I returned to work from my accident. I traveled, worked in an office, taught class to engineers, and made visits to construction sites. Finally a series of UTI’s became a kidney infection. I had to go to a regular Foley and finally to the SPC that I have now.
Benny, Glad l have been of help – as when l first had my spc – l left the hospital knowing nothing. Just left to get on with it. Thats why these forums are such a lifeline to us. The bags l use are from a company called MAnfred Sauer – they have disabled people working for them – helping with the design etc. By direct connection l mean that the bag has no tubing at all l just connect my short length spc to the ‘direct valve’. You can -of course – connect a long tube to the drainage end if it makes emptying easier. The no.is 710.2204s – they have a cotton-feel backing – so they feel good againsst your skin. lf you contact them or look on website – they probably do bigger capacity bags. Mine are 600ml. lf you use a bootlace – threaded through the eyelets on the long side then tied around waist – with a ‘snug’ pair of underpants to keep it supported. Saves wearing elastic/velcro straps. Which l find very uncomfortable. Mine does not show – even in tight jeans. Much more civilised. And of course, the main thing is there is no drag on the catheter site. Makes all movement so much more comfortable.
Ok so my SP catheter is blocking lots of late (twice a week) and I’m thinking of putting a Flip Flow on – to see if being able to emptying my badder every 4 hours would prevent my catheter from blocking as much as it does….. from everything I’ve read it is worth a try….. right????? …….. or is it just a lack of drinking water in the evenings???? …. as my catheter tends to only FULLY block late at night when I’m lying down…. my SP catheter sometimes slightly blocks but still works ok it’s just uncomfortable for 20 minutes.
Well – A flipflow valve is only useful if you have control of your bladder – otherwise you will just ‘wet’ urethally. The cath blocking could be because it needs to be turned around – can get stuck onto the bladder wall and the little eyelets get blocked. Or you have tubing that is kinking and causing a flow problem. How often do you have your spc changed. l need mine changing every 5 weeks – as l find it get ‘crystallised’ around the tip and can be difficult to remove. Do drink plenty of water – especially when you go to bed – keep a tumbler next to you to drink if you wake in the night – and again in the morning. Mines been much better since taking D-Mannose capsules keep the bladder and urinary tract healthy.
Nothing worse then your cath blocking at night when you are in bed. Make sure there is no drag from the drainage bag on to the catheter. Hope things improve.
Well if you mean “control” as in “I can flip the valve when I have to go” every 4 or so hour when I get the feeling my bladder is filling and I gotta go …….. I have the function to do that but apart from sensations that “I know I gotta go” I have no feeling down there …. I did IMC ever 6 or so hours for a year, the setting up my catheter and all my gear (gel etc..) was to time consuming and I often needed help setting up ….. I went SP catheter route for more independence…. ohhh yeah catheters blocking at night are a bitch, it’s blocked right now hahaa
Ahh I get what you mean by “control” Tramper, yeah I had Botox to my bladder to calm it down when I was doing regular intermitted catheters (IMC..) ….. so there was some wetting but not much… only thing to do would be try I suppose? ….. but be careful about it the first time using a Flip-Flow :)
thank you Greg for your reply . I think that I will take notice of the water being taken out. I hope that the next change is not so painfull.
Because I have feel in my bladder, lets call them “sensations” … I’ve started using a Flip Flow valve instead of a leg bag. Just trying to see if it works and during the day I can empty my bladder every 4-6 hours.. which in terms of emptying it that I can do but what I need to know is:
I haven’t self catheterized since 2006 and it would make sense that my bladder would have strunk or I’ve gotten use to constaint draining and not holding 500 mls in my bladder……..
If it is that my bladder has shrunk will that reverse after using a Flip Flow, i.e. will I be able to hold 500/600 mls again? …. right now it is about 100 mls.
If it is that my bladder is more sensitive and just has gotten use to constaint draining, i.e. when my bladder gets use to holding and not just draining all the time, will I be able to hold 500/600 mls again?
The answer to both those questions are no…. 4 years too late, hahaha
Kaz,
lts never too late to try – be optimistic. You can still have a drainage bag fitted to the flipflow valve – so you can ‘flip’ it quickly. And why not try retraining your bladder to hold more. Wish l could – but 18yrs of SPC – is possibly asking too much.
There is a new med for bladder control – Betmiga – google it – unlike the old brigade of meds like Oxybutinin/Vesicaire/Detrusitol etc – this one works quite differently. l know of several MS sufferers who are using it now and it has none of the nasty dry-mouth side-effects. About time a new med is available.
Once again purple bags, blocked Catheter every week or two and horrible smelling urine. Had this same problem this same time last yr. Flushing with normal saline and vinegar solution and drinking 64 oz of water at least daily along with 20 to 40 oz of other fluids. Still have constant site area drainage as well as constant external yeast problems and milky colored urine. I need suggestions as my Dr s seems unconcerned but then he is not getting 4 or more catheter changes a mth.
Hi, all for better results try different catheters I’m a costumer I used to be with this company that gave me Hollister catheters but this company gave me so many different brands and samples wow I change to a more practical less bulky and less massy catheters a world of difference don’t stick to a brand that a hospital gave you there is more lots more options out there.
Things are okay, I’m staying positive …. I suppose I just don’t want a bladder the size of golfball but none of us do…. hahahaha … nahh but yeah I’m gonna try a few things and see a Urologist asap as I’m travelling overseas so might need to be after that.
Turbogirl
I’ve had similar problems. Plugged caths and such. It has improved a bit lately. I’ve had the spc since Oct of 2010 and this problem came on suddenly this past spring. I was getting 2 weeks out of a cath at best. I’m at 8 weeks now on this one and I make sure I get at least 3 litres of liquid a day. At least one glass of cranberry juice and vitamin-c.
I have calculus formation in my bladder very often and every time I have to remove it by surgery. I have not been able to use d manose it is not available in my country I will try to order it. The doctor says that the urine leaves sediments in the bladder pockets which cause calcului. Can you tell me how I can prevent the formation of these calcului? The doctor has advised me to do weekly bladder washout but still the calculus forms. Now he has suggested me to use an intermittent catheter to do a bladder washout so that the bladder is washed both ways. Please can you give me any advice why calculus is forming so quickly. Many thanks.
Have you tried getting the D-mannose from Amazon. Thats where l get mine from. Another easy answer to correcting the ‘ph’ in your bladder is Apple Cider Vinegar. lts a bit of a cure all. ~Prevents reflux – gout. A tablespoon a day with a spoon of honey topped up with water. lt works – so does bi-carbonate of soda – that is also alkaline like ACV.
Worth trying –
Merry Christmas and a Happy New year to all
Thank you, Alicia. And I also send my wishes for a Merry Christmas and Happy New Year to all my SPC blogger friends and their families. May you be free from infections and complications and may all your cath changes be without incident.
hello every one i had a super pubic put in on the 19th of december 2013 just need to speak to people who under stand what im going through im 23 yeqars old suffer from nf type 1 i just wounder will i be able to wear nice jeans again one day feeling very sore today