Super Supra Pubic Catheters

1,776 thoughts on “Super Supra Pubic Catheters”

1. hi there just wondering im on antibotic for uti the med is cipro but its called ran cipro ive taken cipro before but never heard of ran cipro and can you still eat things like meat?

   thank you and hope to hear soon

2. Sorry I’ve been very busy this week guys.

   JWTAS: I haven’t used the Oxytrol patches but would like to. My GP did mention them, I currently take Ditropan tablets which can have many side effects, for me skin very dry and itchy. I don’t recall saying long term effects anywhere, and can’t think of any, off the top of my head. As Oxytrol are relatively new, I doubt there would be much long term study info publicly available.

   Tamzynne: Nausea is a side effect of Urispas. We mention several other medications; Ditropan, Detrol LA, Vesicare, Enablex, etc in the article you might like to trial.

   Mark: Your case is very unique not atypical of SPC users, so I can only agree with, and direct you back to your urologist. You could always seek a second medical opinion if you feel mistreated. Your sediment levels sound extreme to me. Remedy that and things might become easier.

   Connie: I cannot see how a urethra could become stretched from an IDC, he may be referring to the spinctor muscles becoming stretched. All things being equal, as long as you can retain 300ml or so of urine, without any catheters or voiding, you should be able to have an SPC.

   Onkar: They are the same drug, both are ciprofloxacin. RAN-Ciprofloxacin is simply one of several trade names for ciprofloxacin in Canada.

3. hi graham, is there anyone that can help me with my problem. i have i had colon resection 2 1/2 years ago and i could not urinate after. so they said it was my prostate, had prostate surgery, did not work. i am self cathering, my problem is i have the urge to go most of the time but cannot which is driving me crazy. the doctors feel if i have surgery on my prostate a gain and fit me with a spc the urge will go away. the injury was caused by the colon surgery. is thers anyone else with this problem who can help me. i had to go to size 12 catheter because i could not get a 16 in anymore. would an spc help me? i had only one infection in 2 1/2 years. i am geting prostate and spc surgery on july/27/2011. is the spc right for me because i get a lot of pain when i self catheter. my name is joe.

4. Hi Joe, can’t say for certain but there is a good chance a supra pubic catheter will eliminate your urge to void. If you find the SPC doesn’t stop the urge to voiid, hurts to much, or for any reason you’re unhappy, you can simply remove the SPC and resume your previous method of bladder management.

5. Graham, great site, lots of helpful info. So nice that you take time to reply to people. Thank you.

6. Hi Graham,
   Am very pleased to have discovered your world of knowledge on UTI’s and SPC’s. I write for my mother Monica, who has suffered from MS for approx 34 years now.Age 70.Monica is totally disabled now, and has been wheelchair bound for 12 years now.Mum is unable to care for herself in anyway, and requires 24 hrs care.l am her youngest (43) and basically have never left home, as my father and i care for her.Mum has had a SPC for approx 9 years now ( Bard Foley) and in the last year mostly we are experiencing pseudomonas infection almost every month now, which is crippling her on many levels.Last year mum started having seizures related to UTI which she has been hospitalised 8 times in the past ten months (for up to 4 weeks at time’s).She was given a course of Gentamiacin on most occasions for 3 – 4 days and discharged home, with out any further tests being taken.At present mum has been in bed at home now for 4 weeks as the Nueroligist at the hospital increased her seizure meds ( Nerontin) by double to prevent further seizure, and she has been over medicated and cant sleep for days, followed by her not being able to wake for days. This restricts us from getting enough fluids into her on a daily basis.Her GP has since lowered the dose again, but she is still not right since the increase.
   Mum is normally the happiest lady i know, and full of good cheer every day.Our recent UTI test came back positive again with pseudomonas last week, and now the GP says her body will need to fight it as she cant be on Gentamiacin everytime.l beleive the infection is disorientating her, however her temp has been stable.l am very frightened of another seizure being triggered by the UTI as this sets her back for at least 1 – 2 months everytime.Monica takes Hiprex one tab AM & PM, one cranberry capsule AM & PM, 2000 mg of Vit c daily, and one Iblex daily to assist prevent UTI, however it clearly is not working anymore.The Incontinence helpline has suggested that her SPC be changed every 2 weeks instead of every 4 – 6 weeks to try and prevent UTI’s, and advised that a bladder flush weekly would not really assist.ANY suggestions would be of great assistance and appreciation, as i feel i am losing the balance for her.Mum is so special to me, and i research always however i find differing opinons from most nurses, and have lost faith in the care approach of the system in general now.Many thanks for your time.Your work here is so very special.Kind Regards, Tania. Australia.

7. Hi Tania
   What about Botox treatment to stop the bladder spasms? Also, i take Oxytrol (i think that is what it is called…these are patches). I would seek out a second opinion from an Urologist as well. These are just my ideas and opinions and not necessarily to be taken on board.
   Warmest regards
   Jane

8. Hi everyone.
   I have an SPC because as I have restricted mobility with muscular dystrophy, I am physically unable to stand up and get out of my chair to go to the loo. As I dont have 24 hour care, and limited personal care supports, I have my SPC. I can still feel everything of course, therefore, I am on Oxybutin patches which assist with my over active bladder spasms which are really painful. The problem with this medication and many others is, it causes constipation, which exaberbates the risk of UTIs! Im wondering … if you dont mind me asking, if anyone else who is in a similar situation and what you do to alleviate bloody constipation because i dont know about you…but being constipated is extremely unpleasant! What remedies do you use?

   Finally, i try not to think but i am scared of the long-term use of medications!
   Warm regards
   Jane

9. Hey gang… Ive been off for a bit, had a flip flo tap put on a cpl of weeks ago now and manageing fine. Love it actually, free’s me up to do things, and wear jeans and shorts etc.. although no shorts at the moment due to freezing bloody Vic weather!!! Im off to QLD after xmas for a much needed break, so my shorts will be on then! Im into hospital soon for anothre cath change under sedation as my bladder copped a fare beating and they want to make sure everything is in place properly also to quaterize a bit of flesh still coming out of the wound site, ( that gets a bit irritating) other than that im well and happy! Hope all is well for you all… take care… Gayle xx

10. Hi Tania, how nice to hear of your devotion to dear mother. Thankyou for the lovely photo and detailed synopsis. Don’t forget to live your own life and look after yourself as well. Being a primary carer can quickly burn you (or father) out. There are government supported schemes available in Australia, even if just to assist you, or clean house. Look after yourself to look after Mum.

    To UTI. Vitamin C increases acidic urinary pH which kills bacteria and allows Iblex efficacy. Conversely however Vit C can reduce Hiprex efficacy. Problems may also arise using Iblex and Hiprex together and I suggest a maximum of 1000mg of Vit C on any one day. Remember there are good bacteria to. For these reasons I suggest 2-3 week trials of each these combinations to see which proves best.

    Hiprex + Cranberry (Plum or Prune juice or capsules) + 3 litres /day
    OR
    Iblex + Vit C + 3 litres /day

    You may then like to try Ethical Nutrients Urinary Tract Support with, or in place of, the suppliments.

    I agree bladder washouts would be of little help in your mothers case unless so unresponsive she cannot take fluids. A supra pubic catheter is a continious closed drainage system. The benefit; closed to infection. Anytime the system is opened it is open to infection. Likewise increasing frequency of supra pubic catheter changes is usually of little benefit if not detrimental. Better to empty the drainage device more frequently instead. Catheter related infection is extremely less problematic than change realated. A Bard foley lifetime is 4-12 weeks. If concerned however, and the budget allows, silver alloy catheters (coated on both internal and external surfaces) demonstrate a significantly greater reduction in the development of catheter-associated bacteriuria. There are more anti-sediment-infection tips in the article.

    I cannot emphasise the importance of pushing fluids 3 litre + daily. Many of us, myself included, have ridded pesudenomas simply by pushing fluids.

11. Hi Jane,

    Thank you for your response.Is Oxytrol used for bladder spasms? Mum dosnt complain of bladder spasms, yet she has seizures in the brain related to UTI.In regards to constipation, maybe try some Pysillium husks, you can sprinkle some on your cereal, can be obtained at most larger supermarkets, also try a glass of warm water with lemon juice.We have used coloxyl with senna to soften the stool, and movicol to move it, however as im sure you know sometimes they seem to just build up in your system.l guess you cant beat natural fibre.All the best.
    Kind regards Tania.

12. Hello Graham,
    Many thanks for your detailed response, most interesting and we are thankful for your knowledge and input. We have started to trial the ibilex and Vit C for 2 weeks, and will then try the other option and let you know how we go.Am also chasing up the silver catheters and will definatley make a change there.Mum would consume approx 2 litres a day, so we will push for 3 litres, its been difficult as mum has been so knocked out with her seizure meds and we have to hand feed her as her arms are contracted with ataxia also.Will stay in touch. Am very pleased to have made this contact with you.
    Kind regards & all the best to you.
    Tania.

13. Hey Graham: Great information! Where is a good source to buy silver alloy caths and Hiprex/Ural (which is better in your opinion?). How routinely and how do you test for the PH level. In your article did you mean that you take the Hiprex on-going 2x daily every 3 days or is this only when an infection is detected? Do you believe in taking collidal silver as well?

    Thanks so much!

14. Hi Brenda, I don’t know where you live. I suggest contacting your local hospital, pharmacy or doctor for Hiprex and silver alloy catheters, or buy online especially pH kits. If they don’t have Hiprex they should have similar, Urex, Ural etc. I wouldn’t say ones better than the other. I haven’t needed to test my pH in 12 months or taken Hiprex in years. Some take it twice daily as directed for prevention, luckily for me, I now only do when sediment and infection levels are problematic. Collidial silver works wonders for some and has no effect in others, it’s one of those can’t hurt to try things. You should consult your doctor before taking any medications.

15. Hi. I am new to this site and find it very informative. Hopefully someone can give me some help. I’ve had a SPC for almost a year. No major issues EXCEPT ODOR. I can put a new leg bag on, empty it once and the odors start. I know others can smell it but are too polite to say anything. I drinks lots of water and I know meds can cause urine to smell but this is ridiculous. The odor comes through the bags even though they are clean and/or new. No infections, tube changed every 4 weeks and only 1 infection in 10 months.

    I have MS and due ignorant doctors, I have been in a
    wheelchair full-time for 2-1/2 years. I am still doing PT to try and at least stand & pivot, but no luck yet. SPC is wonderful except for the odors. Can anyone help? Thanks in advance!

16. My doctor has suggested that I have to have suprapubic procedure done next week but I am too scared to have a tube coming out from the stomach, followed by complications.
    Can you give me courage and urgently let me what to expect.
    Thanks.

17. June: Without infection that is odd. Could you be overly self concious? I know I smell my own wee before anyone else does. As long as the tap is closed you can rinse the tubing end in the flushing toilet water. Or use an alcohol or baby wipe to clean the tube end. I find wiping the end of mine with a a baby wipe each time prolongs the “I can smell it now” factor.

    Mansoor: Keep in mind it’s a relatively simple proceedure and reversible.

18. Graham. Thanks for your reply. I am probably more sensitive to the odor than others, even the nurses who change the tube say that. I’m not sure what a ”tap” is. They have suggested soaking the bags in straight vinegar. All I personally do is change from leg to night bags. They agree that urine smell can be stronger due to medications. I do know that others can smell the odors. When I see my urologist in 2 weeeks I’m going to ask him about flushing the tubing myself once a week. Maybe that will help. The odor usually starts a week or so after the tube is changed.

    Mansoor. The surgery is not a big deal. In and out the same day. No shower the next. Have a good urologist surgeon and he/she should make you feel comfortable and knowledgeable about everything. I know in most ways it makes life easier. No more going ome in between errands to use the bathroom. I keep a bottle in the van along with wipes. Loose pants so no one can tell. I can make longer road trips without having to worry about wheelchair accessibiity. Being single I don’t know about the relationship aspects. Good luck!

19. Mansoor,
    I have been fighting with strictures of the ureter for the past 2 years and the SPC, which I have had for 3 months, is a whole lot easier to deal with than cycle of emergency room catheters, opening procedures, leaking, closures, etc. I have actually been able to sleep all night!
    Bill

20. June… I know what your saying! Ive recently had my cath change again, 3rd time, Ive had it for a few months now due to cancer of the bladder/ urethra. I was admitted to the day ward last week under a mild sedation to have it removed as my Urologist wanted to make sure everything was ok before i have it done at the continence clinic by the nurses. I have a change every 8 weeks. I talked to him before going in about the smell i could smell in the cath i had! It had a urine smell to it after two weeks of being in it would smell like wee! even my husband said he could smell it at close range, lol. The synthetic material of the cath was pouris, and my urologist said they were prone to doing that, and he would give me a user friendly one! i woke up on friday with a new grey cath.. softer smoother tube, it says…( looks down…) BIOCATH-HYDRAGEL COATING.
    If that helps, consult with your Dr. I was also getting an iritation at the wound site, it remained a bit mucky, no matter how i tried to dry it out, but now, after only two days of haveing this in, my wound hole is nice :)
    June, i hope this helps!!! xxx

21. Bill… hearing you!! I too had strictures due to surgery of the urethra and had to make a mad rush to emergency a few times! life with the SPC has made things sooo much better!! I too sleep a full night! I have a flip-flo tap during the day, and a bag at night.
    Mansoor.. you’ll be fine, there are NO complications normally, you may feel a bit tingly as if you need to wee for a few days,sometimes bleeding may occur for a cpl of of days, but it should ease off, valium 2mg will help with the spasms and take paracetamol ( panadol-Panamax) but NO asprin!!.. take two valium if you need to.
    Drink at least 2-3 litres of fluids a day to flush the kidneys, then settle into a normal drinking day. Alcohol after about 2 weeks. It will feel strange, and eventually you WILL get a routine to things, and begin a “normal” life again! NO heavy lifting!!! limit this to around 5 kilo after everything has calmed down. You dont need to stress your tummy muscles that hold the balloon. All the best!

22. Hey Gayle, thamks for your input. It’s a relief to know I’m not crazier than I know I am (lol). I will ask the doc about a different tube. My luck is that they only use the same kind. My site still has some drainage after almost a year and I just tape a gauze pad around the tubing area to keep the undies clean.

    I have loved getting a great nights sleep without getting up every few hours.

    I’d love to know how this one works for you (odor wise). Interesting how my doc says every 4 weeks and yours says 8 weeks for tube changing. It’s not a big deal to have it changed. A little uncomfortable whwen the new one goes in but other than that no problem. After a shower I use a gauze with hydrogen peroxide to clean around the opening but still get some leakage. Also sometimes a little blood in the urine the first day of tube change but no big deal.

    I also have to ask about the flip-flo tap so I don’t have to have the bag in the shower with me. And if it would also be good for during the day when I’m home so that I use the toilet and get that wonderful transfer exercise. Would also save on the bags. I have to buy my own night bags and the nurses usually give me 3 leg bags when I’m there. Insurance doesn’t cover the cost.

    My doc also told me originally that I could only have the SPC for 5 years max.

23. Hi Graham, I had botox several months ago with fair results. While I was under they put me in a seated position to see with a scope why I don’t drain well unless I am laying down. They noted my tube protrudes into my urethra, blocking all drainage causing reflux back to the kidneys. I go back in September to have the site relocated. I am excited about being able to put some more miles on my nice new power chair, but a little anxious about the procedure. I am afraid the same thing will happen again. It took almost two years to convince the docs something was very wrong. How many times can they re-tap me? Will my bladder change shape requiring periodic adjustments, or was my first doc hungover?

24. Hi Laurie, I had the same problem 18 months ago. The tip of my super pubic catheter was poking up my right hand side ureter preventing the right kindney from draining freely. Confident it was happening they put me under a general anesthetic and conducted a cystoscopy (camera on flexible cord via the penis) to see into the bladder. It was indeed poking up the right hand side ureter.

    They repositioned my supra pubic catheter 2.5cm (one inch) higher directly above the old site. After sixteen years with few problems I’ve had nothing but trouble since. Beginning with a very obnoxious lady surgeon, to the re-sited catheter poking down my urethera, blockages, severe trauma blood loss, and multiple renal infections. In between I have been trying to find time to update this spc article with full details of my re-site procedure and experience.

    I need you guys to write personal articles for me so I can get back to updating my own, coding and adding site features to make your time here more enjoyable.

    In short Laurie you can have several re-sites in a lifetime. Your bladder won’t change shape but stretching it gradually is something I suggest. A small bladder is typically the root cause of spc, catheter related urethal blockages. Perhaps ask about taking or increasing your intake of anti-colinergic medications. All things going well a supra pubic catheter re-site should be no better or worse an experience than the first time installed.

25. Dear Graham, I am so sorry you have gone through all that. Our surgeons must have trained together.

    I could not have handled my medical circus without all that I have learned at this site and my SCI nurses acting as my advocates. I wish there wasn’t such an adversarial relationship between some surgeons egos and informed patients.

    I hope you are on the mend and that your surgeon gets a dose of her own medicine.

26. Hi, I care for a guy who has a SPC fitted, he has Cerebral Palsy and has had it fitted for about 3 years, to put it bluntly he has had no end of problems with it blocking, also his District Nurses and even his GP refuses to change it for some reason, which means a round trip of around 100 miles to the nearest hospital. It normally flows well for a few days and then will normally either stop or become intermittent at best. Does anyone know if his CP is a factor or not and are there any tips you can give (non invasive) to try and keep it flowing?
    Any help in this matter would be really appreciated.

27. Hi Russ,
    l have cared for my mother for years with a SPC, i have found that it stops draining when constipated or the bowels are slowly trying to move.It could be due to sedement in the tubing, or spasms can dislodge the draining as i have found.This information is purely my experiences only, so hope it may help in your search for an answer. The district nursing/GP should be referring you for follow ups with a urologist or even a local incontinence specialist.At times i have also found the district nursing tell me to just head into casualty for a SPC change, which can take up to 10 hrs on a round trip.Its not right.That’s what the service is designed for – to attend the home.
    All the very best.
    Tania

28. Hi Russ,

    I have found that constipation is a big factor when draining slows down or stops. Anything to help have regular bowel movements will be good for spc drainage. Hope this helps!

29. Graham,

    On August 1st you said “I need you guys to write personal articles for me so I can get back to updating my own, coding and adding site features to make your time here more enjoyable.” I am not quite sure what you have in mind, but I don’t want to ignore your request when it sounds like you are having some challenges right now.

30. Bill, yes it’s been a tough week. Organising a bunch of wheelies for this years second club adventure, a whale watching cruise. Next month I’m off to Thailand. And then there’s my life… I didn’t mean to sound whiney. I know I’m a very fortunate guy.

    A wise man once said, “..hearing from actual patients who are living with these would be a useful piece of information..” This is one of the core pricipals our website was founded on. Not everyone has the time or knowledge to create and run a website. All have stories to tell. I created a gateway making it easy to contribute and share your experiences.

    I plan to make an article submission service in time. Meanwhile I encourage you all to submit articles/stories via our Quick Contact form at the bottom of any page. Or request Author status to maximise the popularity of your posts. Register a profile here Bill, I will give you Author status so you can publish any number of articles. Any of you guys willing to write just let me know.

    Guidelines:
    Try to keep topics site related (all things SCI, disability, wheelchairs etc)
    Write with your keyphrase in mind and repeat it. (eg if your topic/keyword is about “giving enemas” you wouldn’t write about ice cream)
    300 word minimum, no max limit
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    Any questions shoot me a Quick Contact email.

31. Hi! Yesterday, I had suprapublic tube inserted in my bladder. I was nervous at the beginning but the procedure went very well and I am back at home with no problems so far. On Sept. 13, I have been booked for urethral reconstruction. Would like to hear from those of you who have had this done so that I know what to expect. Thanks.

32. Hi Mansoor,

    Just wanted to say I’m glad spc surgery went well. I’m sure the reconstruction will too!!
    June

33. Thanks June for your good wishes. I really appreciate it.
    Regards.
    Mansoor

34. Mansoor: Taking a part of your bowel to create a tube to pee through pretty much says it all. Any invasive surgery must take into account the many personal case factors. Urethral reconstructive surgery then, is not something I can really comment on here. Other than adding my best wishes for it to go as well as your supra pubic catheter procedure. That is a good sign, sounds like you’re in good hands.

35. I’ve just sat and read all of these comments.
    I guess I’ve got really nothing to complain about, but I’m going to post and ask anyway.
    I have had my SPC for 3 months now and am approaching my first catheter change next week.
    I haven’t suffered with any UTI’s until a couple of weeks ago. I have had one that seems to have only got worse and worse.
    I am in constant pain and although they’ve tried me on four different antibiotics I have had an allergic reaction to each one, so now they’ve decided that they aren’t going to treat it.
    I am taking 2 x 500mg Paracetamol every 4 hours, 2 or 3 x 50mg Tramadol every four hours and 500mg Naproxen twice a day, but I still can’t get on top of the pain.
    My Urology nurse wanted me to be admitted to hospital and given IV antibiotics so they could clear this up and check I didn’t react again, but my Urology consultant thought I could do without the antibiotics and only needed an ultra sound scan of my kidneys to check that they haven’t been damaged by this infection.
    They have suggested that taking my SPC out might be a good idea, but at 21 I don’t want to be back in and out of hospital having gone into retention again and again like I was before. Before I got this infection and the pain took over my body I was able to pass between 0ml and 50mls myself but was retaining between 300mls and 800mls (depending how much I had drunk).
    Has anyone esle had to face this??
    Would really appreciate someoen else’s view.

36. Hi Michee, both your urology nurse and attending doctor are right. Antibiotics are way over perscribed. Countries where you can easily buy them by the box-full are to blame. Responsible countries must limit use to prevent cultivation of super-bugs on their home soil.

    Acute renal (severe kidney) infections are life threatening. Oral antibioitics rarely kill off acute kidney infections. In most cases they simply waste a weeks time swallowing pills to no effect. Acute renal infections are so bad, they are often visible on x-ray and ultrasounds. If so, IV antibotics over 5 to 7 days are required. Even then you may need to be a little proactive and vocal to get it.

    Put off removing your supra pubic catheter. It is a really bad idea when you have infections. The last thing you want is an infection trapped between your bladder and stomach wall. Push fluids instead. If you are laid-up with a weeks worth of IV antibiotics in hospital. That would be a good time to have your first supra pubic catheter change.

37. Argh!
    Hello all!
    I’m posting again for a few reasons.
    ___
    ROUTINE cath vs emergency cath. changes (Supra pubic)
    This has me worried. See if you can spot the pattern.

    8th April 2011 Original admission for acute urine retention.
    13th June (63 days) routine replacement of catheter, no problems before change.
    26th June (13 days) Emergency change of cath required as woke up with blockage, drank water, then realised………… I had to urinate through uretha. After 5 passes, pain is eye watering due to some damage sustained whilst waiting for original release in hospital. Vow to drink more water……
    12th July (16 days) Emergency change……nurse suggested catheter top strap needs to go behind, which makes more sense, but means that its easier for the eyelets to break. (Basically, if strap is too tight across outlet, its likely to reduce output and maybe force a blockage) I’m using simpla coloplast leg bags.
    29th July (17 days) Emergency change again….. Strap was in behind position and I only just noticed the 2 week ish pattern of emergency changes…….

    First cath 8 weeks easy
    next 3 – 13 to 17 days……..

    Theories. Heat leading to lower urine output= less pressure of urine, easier to block over time.
    Urine pressure drought during long sleeps….. This makes more sense to me.
    I wake up many times with no residual urine in pipe… Do enough days of this and eventually you’ll be blocked I reckon.
    Why? I cut open my last changed catheter and it was full of mineral deposits which were crushable, but blocking none the less. The sleep drought slowly leads to blockage like stalagmites and stalagtites in caverns.

    I started charting my urine and my liquid in on a 2 hourly slot as an education process.

    Whilst staying at home and wandering about a bit, I can down 6.5 litres of fluids on a hot summer day (about 23-25C 80% humidity) and urinate about 4.2. (Overkill Perhaps)
    During the day my urine is ultra clear. I am now working on the following method.
    2 hours target during waking hours= output about 300ml/150ml per hour.
    This prepares me for sleep where I pre drink about 500-800ml.

    Every 3-4 hours I wake up and drink about 300-500ml (this is in a warm 20C+ room)
    This creates enough pressure for urine to be pushed out from the lying down posture, through the leg bag and to the night bag.

    I may be able to cut these sleeping amounts in half but I’m nervous of another blockage/another change. I had an anxiety attack just after my catheter was changed and another attack was started just by my thoughts that my catheter might be blocked when I woke up at 6am once.

    So, personally, In summer I will aim for 150 output per hour and at least 150/hour whilst sleeping. For 16 hours waking this is 2400 ml and 6 hours sleep = 800 at least
    = 3.2 litres output. This means I’d need to drink about 5 litres at least.

    Symptoms that your catheter is going to play up MIGHT be like this.
    1) You are asleep, in pancake posture (ie flat-ish on bed)
    2) You are disturbed by a little retention pressure on bladder, due to it not draining fully.
    3) You get up and within 1 minute you have filled 200ml into a leg bag, due to pressure differences – when you would normally void 200ml in an hour…….(maybe 400 for some)
    Now, this could be a result of near blockage (I’ll explain next), low pressure output due to nearly out of urine during bed posture or both…..or “x” :)
    Bard Aquamatic Biocath with hydrogel coating CH 16 5.33mm overall diameter (2mm internal – flow diamater)

    My thoughts on near blockage were created by the sudden massive fill aforementioned.
    Calculations. You may not have thought of it but……..
    1) 200ml in 1 min(I have checked this) = 12 litres per hour, 0% blocked.
    2) Therefore, throughputs are as follows:
    a) output at 50% block = 6litres/hour – 100ml/min = 1.66ml/sec
    b) 75% block = 3litres/hour – 50ml/min = 0.83ml/sec
    c) 95% block = 600ml/hour – 10ml/min = 0.166ml/sec

    For each additional 1% block : subtract from (c) 120ml/hour – 2ml/min – 0.033ml/sec
    Technical and elaborate much! but I like statistics and it may allow you to get some idea of your output potential, although it tends to only become noticeable upon a near emergency stage…

    So, you can see that the average catheter will function fully until about 97-99% blocked. However, you’ll notice an pressure resistance eventually if you glug lots of liquid on an empty stomach or on diuretics.
    Also, I may go further to say that you may even get more through the catheter but I’ll leave these here for education or whatever you want to call it. :/

    A full CH 16 catheter will hold about 1.35ml of liquid.

    ODOURS!!!!!

    Like JUNE, I have started to notice an odour that seems to permeate the bag, yet no urine……or dampness. (I didn’t notice this until the last 4-5 days, even though had same leg bag brand for 16 weeks…..) I did a test and hand rubbed a brand new, unused bag and there wasn’t any odour. The odour on 2-3 day + bags is clear and penetrates my left leg clothing as well. This may be a result of summer and higher air temps increasing the chemical reactions. I can imagine a stronger odour if I was not drinking 4–5 litres per day.
    I try not to glug the liquid down, unless I might be in or near drought stage.
    I’m trying to regulate it more consistently.

    I also take water with food, because, putting it frankly, firmer stools are not so pleasant to pass…..This is standard recommendation anyway I believe.

    Regardless, I could be far worse compared to the horror stories I’ve read :(
    Another thing, regarding crystal deposits, these can be crushed by rolling the catheter.
    Maybe once per day, give it some squeezing. You obviously, can’t crush any that are out of touch, but clearing the blockage ahead may stop a backlog.
    The catheters are quite amazing really, are they not!!! :)
    Read about the medieval days of catheterisation for some truly shocking education.

38. Antibiotic and pain free – or Risk the Superbug: My Dilemma, My Choice.

    Ok, so the anitbiotics are bad for you, but they certainly clear my infections up!

    Recently, I’ve had really awful pain in my bladder which leads me to think I have an infection, so I take a course of antibiotic Cephalexin. And i’m better. But then I may have a catheter change three weeks later, or my monthly menstruation or a personal carer who may not have washed your bum properly by mistake – and BINGO you’re back to the antibiotic.

    I’m frightened by the recent media of too many antibiotics. But given that this site is the most active and thorough site I’ve found about SPCs, well truly – dont you agree that this idea of SPCs are not very well investigated or enough professionals in the area????

    The dilemma I have is if i dont take the antibiotics, I’m in awful pain, crook, cant work, unproductive, cant earn money then to pay bills…its a flow on effect wouldnt you agree? I guess I’m going to have to resign myself to the fact the likelihood of dying from a massive infection (a super bug) because I have taken too many cephalexin’s in the past for minor infections is pretty high.

    Well buggar it… I could get hit by a bus tomorrow too. To me, its about quality of life. Pain free for me please! So I take my pro-biotics now after a course of the anti-biotics – I’ve taken Grahams ongoing points about liquid, liquid, liquid – (this helps the constipation guys!) and I eat really healthy meals – loads of veges, greens, fruit, fish and protein. Given up the grog, and stopped smoking faggies (mind you I’m prone to one or two in social settings).
    I’m taking my chances though. I have no choice…but please Mr Media man and Mrs Medicine woman…why cant I be an extraordinary human and be the lucky one who can have multiple antibiotics and not get the super bug. I just wish they would stop scaring me. Because its unfair and when you are in our positions, we dont have much choice between pain and quality of life.

    What may not be good for some, may be a better choice for others.

39. JWTAS, exactly, it’s the needy that suffer. I have lost a couple of wheelchair friends through infection. One slipped away from us on this very website before all our eyes. It sent a shockwave through our community. My thoughts always with you Carla.

    Fourty years ago the largest cause of death amongst people with spinal cord injury was renal failure. Today it is heart and respiritory complications. At similar incidence rates to the mainstream. I understand the “responsible” position and duty of care. I have no problem dying for the betterment of mankind. If it were my mother, or loved one saying this, I would demand antibiotics and more. Often, we are good at looking after others, but fail ourselves. If you ever need to vent the annoying aches, I am a good listener.

    Andy, if you have trouble posting, your email address keeps getting caught in our anti-spam filters. Register an account to remove the name email etc fields from the comment form site wide. Thank-you for sharing your consise info. That is very good for us to know Andy. I feel the sleep drought effect. As a quadriplegic, a day in bed sees my average 1600ml urinary output increase to 2200ml. The next day when I get up, all the fluid pools again. Daily output down to less than 1000ml. Then stablizes at 1600ml/day again the following day. And I don’t even have fat ankles yet!

40. Thanks for notifying me about the email address issue. I use email shielding for each website. If a website is hacked and addresses harvested I will never have to change my main address as the service will just eat further emails.

    Good idea about registering as it saves wasting time on “spam checking”.

    I just realised that I registered on the forum, then realised why I still couldn’t post here because this is a wordpress section……..grrrrrr.

    Sorted now.

    When you say fluid pools, do you mean it pours into the urine collection device once you are upright, in a very short time? (signifying that it was languishing in bladder etc for hours)

41. Hi Andy, in time I plan to intergrate the logins but for now the forum is a seperate registration. You can talk about any and everything on the forum, post articles, multiple images, video, pdf etc, create polls. Tell us all about your day, thoughts and experiences… anything. People can easily answer and start up a coversation with you.

    By fluid pooling I mean after a few days laying in bed, when I get up, fluid begins to build up in the body. Mostly due to a lack of mobility quadriplegics have poor circulation. The first day up after extended periods in bed, wheelchair users can expect a low urinary output. The body needs to re-store a certain amount of fluid to prevent dehydration. More proof of this is on that first day up, you often feel lethargic and lack concentration, common symptoms of dehydration.

42. He Graham, it’s been sometime since Ive left a comment, although I read all that are sent to me by email. But I have to thank you for all your help over the last 3 and half years. I am schedule for surgery on Aug.15 to have complete urethral reconstruction. So one bad car wreck and 3 and half years later, they are going to fix me. Will let you know how it goes, so maybe if anyone in the states needs a similar operation, maybe I can be some help to some one like you have me. Having an SPC for so long now its really just become second nature, I’ll have a new battle to face now I guess, but I’m up for the challenge, I hope.TTYL.

43. Graham, thanks for clarifying the pooling.

    It’s amazing how a slight change in the heat index (not a system that England uses, but a good idea to combine temp + humidity) can reduce my urine needs.
    I’m practically producing clear urine (noted by the 10mm plastic outlet colour tone of leg bags)

    My old technique, pre SPC, was to glug water down like a camel.
    This does not work for me now. I have to take small but steady doses, otherwise I have a pointless 600-900ml per hour cascade (short term of course)
    ____

    Shawn,
    that sounds like a long surgery.
    I’m hopefully about 4 weeks or less away from an optical urethroscopy then suggested methods for severe possible multiple urethral stricture repair. I can’t believe I just wrote hopefully, because I spent a decade not dealing with the problems, by avoiding delicate matters…grrr
    Anyway.

    A quick addition with some scientific articles which I turned up after suddenly thinking “what is the scientific understanding/cause of encrustation”

    http://www.biomedhtc.org.uk/EncrustationClinical.htm
    http://www.biomedhtc.org.uk/EncrustationScience.htm
    http://www.biomedhtc.org.uk/CAUTI.htm
    http://www.biomedhtc.org.uk/ProteusMirabilis.htm

44. Hi Shawn, great to hear from you. That’s terrific they can reconstruct your plumbing. i hope it all goes well and wish you a speedy recovery. Please do let us know how it goes.

45. Think that you can beat biofilms in your urinary system?
    Think again.
    These things can survive autoclaving at 121C at pressure, which would strip the flesh from your bones.

    (1998) Biofilms on Indwelling Urethral Catheters Produce Quorum-Sensing Signal Molecules In Situ and In Vitro
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC106751/?tool=pmcentrez
    Plenty of proteus articles as well..

    I’m in the process of trying to find out how ambient temp affects catheter replacement frequency etc etc from biomedhtc.

46. Hi everybody-

    I am a 54 year old very healthy and active male. I discovered I had urinary retention due to an enlarged prostate. I was found to be retaining 800 ml and couldnt hardly pee at all. I had a TURP procedure to open up my prostate and an SPC (no bag) 3 days ago. I get the urge to go at 500-600 ml. I pee about 150 cc and then cath the last 400. My Dr says my bladder may never be functional again and I may have to cath the rest of my life… Other Drs say my bladder will recover. What do you think Graham? How long will it take?

    Thank you for your efforts and a great wesite!

47. Peter,

    Is the SPC a temporary measure to allow time for the ureter to heal? It is a good sign that the sphincter is allowing some control of the urination. This gives some hope of a return to “normal” function.
    The urinary system can take months to recover from surgery. I would by all means get a second opinion from another doctor. But each person is different and the doctors can only predict what will happen in your case based on their experience with other similar situations. That’s why it is important to deal with a doctor who has a broad range of experience in such situations.

    I live in a small town with one urologist and when I started having prostate stricture problems I knew that I needed to get out of my small town to a larger city with a pool of skilled urologists.

48. Hello Everyone

    I have a chronic neurological illness, CRPS, which results in me being wheelchair and catheter dependant.

    I finally had my SPC surgery 11 days ago. Untill day 5/6 things were going great and it was such a relief not to have the pain and problems of my urethral catheter.

    At this point my site pain increased and started throbbing, I started producing alot of pus from the wound, the area from my pubic bone up to my catheter site feels bruised although it just looks very mildly red and patchy, the entire area is very hot and the tissue surrounding the catheter is breaking down – I now have a hole around the tubing half the size of a postage stamp.

    This past week I have seen 3 docs who agree it looks very painful but feel this is the normal healing process. 1 did start me on antibiotics just incase, that was 3 days ago and things have continued to worsen.

    Yesterday I even presented to the emergency room the pain was so bad, but they just applied a new dressing.

    I feel Im now making a fool of myself by seeking any more help, but its so painful I feel it must need stronger, different or IV antibiotics before the entire area breaks down / ruptures.

    The site has been swabbed but cultures wont be available till mid week. Until then can anyone reassure me that this is normal healing? Or has anyone had similar site issues which was proven to be infection?

    Thankyou so much for all the info on this page. It has been a great source of help to me both pre and post op. I dont know what I would have done without finding it. I hope in time, once I am an expert in all thing SPC related I will be able to help people in the future with their concerns. Thank you so much. Love to all.

49. Hi Bill –

    My urologist thinks my bladder is stretched out and may not return to being functional after my blockage has been fixed by the TURP. I can pee alot better now but still have 300 cc residual 5 days after surgery. I was retaining 800 cc 2 weeks ago before surgery.

    My question is : Will my bladder return to being functional so he can rwemove the SPC and how long can it take?

    Thanks,

50. Peter,

    That question is beyond my knowledge as a fellow sufferer of strictures. But I know three things:
    1. The urinary system seems to take longer for recovery than other parts of the body. 5 days after surgery may not be an indicator of how things will end.
    2. God made our bodies to be incredibly resilient. Whether that manifests itself in seeing your bladder return to normal function or He gives you the grace to deal with a “new normal”, you will have a solution to the current problem.
    3. My experience included a TURP, a Biolite Laser, a cold knife opening of the ureter and after 2 years of procedures I have found myself pretty happy about a semipermanent SPC.
    I hope this helps. I understand it probably wasn’t what you wanted to hear.

51. Peter, I held off answering because as Bill said we can’t accurately predict if it will return or how long it may take. When your bladder is over stretched it loses elasticity. Much like skin stretch marks and scar tissue, it takes years to lessen and usually it never fully returns to normal. I doubt your bladder will ever return to full normal function but it is likely to improve slowly over the next few months.

    Siobhan, I wouldn’t call that normal healing. Blotchy redness, throbbing, weeping, hot etc. are all signs of infection. Until your test results come in, a numbing gel like lidocaine may ease the pain. Sunlight is a good healer. If you can, expose the supra pubic catheter site to sunlight for 10-20 minutes per day. Keep the site as clean and sterile as possible. A good soak in the shower or saltwater bath can aid healing and shrink the skin back down around the catheter.

52. Siobhan, unfortunately quite a few doctors are effectively quacks, whether they believe in magic,push rubbish or are useless because they don’t care about their patients (unless it benefits them somehow). I never had pus and my catheter was fitted under emergency measures in my hospital bed with a local instillagel anaesthetic/antiseptic (in the UK). This clear liquid does come out of the wound after and if you have a replacement catheter. However, green pus, red skin ewww that sounds like a true infection. :(
    I totally agree with Graham, after all, he has much experience with catheter replacements and therefore he knows what and what not to expect.

    Peter,

    I held out as I don’t have an outcome prediction for bladder normalisation either, but…
    I have experience of living with very relevant problems and symptoms for many years so I shall do a NovelPost(R) :) to explain myself, my experience and opinion.

    I had what I thought was a prostate issue (actually a stricture, but practically same symptoms) + definite chronic urine retention from 1999 until my hospital admission in april 2011. I self diagnosed this in 1999 using free health multimedia encyclopedia, as I did not have internet access until 2002. Whatever it was, I was not about to get “looked at” for psychological reasons. The bladder rarely empties once it becomes “dysfunctional” and distended.

    Something to remember, on retention, is that the prostate gland can grow in many ways, sometimes inwards, sometimes outwards and probably both to varying degrees.
    As it is just below the bladder, it can grow up and create a hill inside the bladder (with the exit point at the top of the hill), which means you’ll always have a lowpoint of urine that can’t really leave. I doubt this would be able to get to 300 postvoid though so I’ll presume its the deformed, dysfunctional bladder still misbehaving.

    I sort of consider myself a “competent person” (or something like that) on quite a few signs/symptoms based on 11 years of learning to avoid being operated on. (knowledge is power – but obviously I don’t have x ray vision…)

    The Internation Prostate Symptom Score test was something I checked years ago and I managed about 42 in 2003 onwards.

    It turns out that the main cause of my obstruction to urination is “diagnosed” as urethral stricture (yet to be examined internally yet though….) The stricture/s seem to have become progressively more obstructive over the years and I’m sure they were developing for many years even pre-teen, maybe congenital if possible. BPH vs stricture symptoms (practically the same).

    I went into hospital due to acute retention because of a fully obstructed urinary system.

    In the hospital, I couldn’t be catheterised through the urethra (about 20 minutes of attempts over a 1 hour period) , so they had to do supra pubic (about 18 hours later, fortunately I had a spasm after the 1 hour attempt which released about 400ml, so I survived another 18 hours) which all went well, although the torturous waiting with a large retention was nasty. (bladder scan showed >999ml and left kidney was stabbing at back and on fire at front of body) my entire urinary system was overpressured and a press anywhere was torturous yet the pain was different because internalised.

    Funnily (or not) enough, I got a call from the NHS surgical admissions which was bang on the 18 week “deadline” very recently, so soon I should get an optical investigation of my urinary system to find out what is screwed, although the thought of such exposure and invasion if quite disturbing to me. My bladder got damaged during the hospital episode and bleeds if I try to urinate normally. If emergency SP cath replacement is needed, I will normally need to urinate about 3-5 times normal avenue of which 4th cycle will make my eyes water from the pain) It’s nothing major compared to some and considering my apathetic reluctance to deal with this years ago, I could have suffered worse, although I think my bladder sphincter/detrusor is ripped and weakens under say 200/300 ml, leading to the need to urinate. << (just so you know my reasons for understanding)

    Erm, er, your questions…

    You didn't mention that urination caused you pain? Were you pain free? Any blood, etc? Full feeling in lower body? Hard to start stream, dribbling afterwards etc, made certain postures a little more uncomfortable?

    I went from 1998 without noticeable urination/discomfort issues to 1999 4 urination attempts in 1.5 hours(pre-gym) so I could workout without too much discomfort, except I was still in retention regardless of my thoughts that I should be empty.

    It does creep up on you (the expected reactive symptoms of obstruction) My average urine flow was 4ml/sec and average void was 220ml, both consistent over about 8 years of measuring (3 years ignorance). less than 10ml is rather obstructive and "I believe" is enough to cause the usual symptoms of bladder hypertrophy/distention/retention/detrusor issues/bladder damage. (The worst is when you can't urinate anymore but a herculean bladder powers through the obstruction, relentlessly)
    I'm glad to say that most people wouldn't have let it get to that stage, so the hospital probably didn't quite understand my frantic explanation that my bladder was going possibly tear me up if it spasmed (which it did several times, that was short term agony)
    Somehow I got through all of that and survived, although I feel rather traumatised sometimes as I was left alone to suffer. Still, I've heard many worse stories…

    Also,
    I "cured" myself of a pre-hernia sensation behind my sternum after eating large meals, by using a tight belt just under my rib cage for 2.5 years. (Note a habit of avoiding issues)
    I knew I was retaining much urine, but I didn't think that the bladder volume was the cause of the pain response. The 1-1.5 litres retention was pushing organs/tissue into wrong areas…. (Imagine a 1.5 litre mineral bottle occupying space…)
    Being obese as well, obviously meant far less space around…

    I've read that some retentions were around 4 litres…can anyone imagine that?

    The feeling of being able to eat and drink after 30 hours was truly great, not only that, I could drink unlimited glug glug glug glug.

    I've no doubt you will suffer discomfort or a dysfunctional bladder for a while.

    Your doctors really should have statistics on this. If you didn't have any major pain with the 800ml retention, or bleeding (except for the op) then you should have a good chance of become normalised, based on the fact, that I had very long term retention and my bladder got rather damaged, but only because of the long term bladder strength training and distension. However, it has shrunk and does inflate to a degree.

    However, we learn to never be sure of these things, so the others' and I would say "we are not sure of the outcome"

    Your bladder could get more agitated by concentrated urine. Drink plenty of liquids, even though you'd prob rather not at the moment.

    Currently, my bladder seems to swell without pain (to a point) after 4 months hardly being used and I was "resistance training" my bladder for many years with 10×1 minute urinations/resistance training sessions daily.

    So, you can urinate 150, then SP cath 400, presuming you are on a flip flo valve or something to keep bladder tone? Give it a week and observe all changes.
    http://en.wikipedia.org/wiki/Trigone_of_urinary_bladder << that may be still sensitive

    Actually, I just had a thought. I don't think I can confirm that my bladder has shrunk or is "functional" and I will possibly only find out upon investigation… Damn!!
    Well, I hope my NovelPost(R) yields some answers.
    I'm sorry if anyone feels it's too long. :(

53. Thanks for your input guys.

54. Andy – You asked

    “You didn’t mention that urination caused you pain?

    Were you pain free?

    Any blood, etc?

    Full feeling in lower body?

    Hard to start stream, dribbling afterwards etc, made certain postures a little more uncomfortable?”

    My Dr did a cyctoscope and said although my prostate was not badly enlarged, it was deformed. He said the prostate has 3 lobes internal, left, right and center. My center lobe was deformed and had grown into my bladder opening acting as a valve to close off the opening when I tried to pee. Presumably, he cut that away during the TURP.

    Thank you,

55. Hey Graham, I just saw my urologist the other day and he says everything is good with my SPC. I brought up the odor issue with him and he could smell the odor from almost a foot away from where the tube attaches to the bag. So he now believes I have an issue. Gayle mentioned a BIOCATH-HYDRAGEL COATING tube was working for her. i asked and doc said he had not heard of it. He asked if I could get more info on it for him. I checked on-line and could only find some that they are made in Ausralia.

    Any help for the US? If I can get more info, doc said he would try and get insurance approval to order some for me. He also said eating yogurt 3 times a day might help. With my appetite I told him then I wouldn’t be hungry for anything else.

    I asked if ice cream and or chocolate would help (LOL) and he said no.

56. Hey, I’m in the hospital now, I had surgery Monday mourning they say that everything went well. The have a cath in my penis, it’s capped off, and they are still using my spc to drain all my urine, and will for the first three weeks, said I will come back in three weeks and they will run dye in my spc to see it come out thru the cath in my penis to make sure the connection was good. You guys have a great day!

57. Good to hear you guys are making progress. Shawn, do they hope to do away with both catheters eventually? I imagine so because suprapubic and indwelling catheters are pretty much on par. UTI rates are much the same. SPC are better for sex, IDC may cause less pain. SPC can bleed when changing, IDC can cause tumors. So I mean, both have pros and cons. Unless you’re having a particular problem I don’t feel one is better than the other.

    That’s right June, Biocath is a registered trademark of Bard. Bard mainly operate in Australia, Denmark, Iceland, Norway, Sweden, and U.K. In the U.S. you can order online. If that doesn’t qualify for insurance perhaps you could get a local medical supplier to order them in. I’m pretty sure silver coated catheters have similar properties to hydrogel coated. They might be easier to source in the U.S.

58. Graham, thanks for the additional info. I put in a call to the doc and I’m sure we’ll get somewhere. If the coated tubes help withodor, maybe they won’t have to be changed every 4 weeks?.

    On a lighter note, Let’s not talk about sex…. Haven’t had it in so many years, forgot how it works. But I guess it would be a good thing because then I would get more leg activity and they might get stronger so I can at least stand & pivot. My Physical therapy guy works harder than I do to try and move these legs in fun? positions to try and get my hips aligned properly so I can work on eventually standing. Maybe someday shuffling with a walker. I know a lot of you have it worse then I do and you all are in my prayers. So unless we can find me a part-time man (Not the weird ones I meet..another long story) lets keep the sex talk to a minimum LOL.

    June

59. June,

    Our odour issues seem to have become noticeable at the same time. It is strange!

    I’ve had bard biocath “aquamatic” (the prefilled balloon is clipped ready to fill internal balloon, no syringe needed) “hydrogel” coated (the hydrogel design is still about 12 years old), fitted with leg bag since April 2011.
    By the time I came to post on here, you had already mentioned it… If I rub the leg bag, front and back, the odour seems to have started permeating through.. It also permeates material easily, hence the odour. I doubt my catheter has the odour. It takes about 2-3 days for the leg bag to get permeated. There is no liquid leak and no odour at the plastic outlet. The odour is like a concentrated lemon or even greenhouse tomato….lol. As we have different caths’ perhaps its also permeated, perhaps not.

    I’m welll confused about my legbag odour issue though. Perhaps I’l drop an email to the bards and see if they can enchant me with a reply.

60. Hiya

    I just wanted to thank you for you replies regarding my problematic SPC site. Its reasuring to have you here for any queries. I apprieciate it.

    As way of a quick update, it seems my site was infected. The antibiotics finally kicked in on day 6 of taking them. Within a 24 hour period the pain, swelling and discharge disapeared and I now feel alot better. That was a rough ride. And so frightening seeing the hole get bigger and deeper – yuck! The area has started to granulate over already. Definately well recovered.

    Just wanted to mention to those with odour issues – This happened to me once whilst in hospital. At the time I was dehydrated so my urine was very concentrated. If your urine is consistently concentrated might this be the reason behind your problems. I do hope they get to the bottom of it soon.

    Thanks again for your replies.

    Hugs Siobhan

61. Andy

    Waiting for insurance to approve the silver coated catheters. Maybe that will help. I drink so much water I know that’s not the problem. Doc said eating yogurt 3 times a day could maybe help.

    As far as the abgs, I wash leg bags nightly with soap & water and when dry the next day there is no odor. they last sometimes for about a week. Night bags I soak daily with soap & water, once a week usually soak with vinegar. Have been told I could also use diluted bleach to soak them but I don’t like that idea because I feel it would degrade the plastic bags.
    Night bgs can last about a month before I toss them out because thy do hold more odor.

    Read Gayle’s July 31 entry about odor. I guess there are so many different makes and models for all these things that they work and act different for everyone.

    But I hope this works for me. Maybe it’s the type of bag you use. I do know that somedays the odor must permeate the bags because I can smell it on my pants. But not always.

    Such fun lives we live….

62. As of today, my bag is not too bad and its been in situ for 4 days, I can only wash the front as the leg contact back part has a soft material which would take up liquid and stick. The odour has not increased and I’m sure it has some affect from ambient temperature.
    I write to coloplast to ask them about this matter. WAiting for reply now.

63. Hi German herb tea treats constipation but be aware it can cause diarrhea, I had half a cup and three hours later toilet. I also have ms and use an spc but have loads of uti’s now with severe pain doc says avoid antibiotic .

64. Hi there
    keeping your catheter bags CLEAN is vitally important!! My personal carers and I have use Milton’s anti-bacteria tablets and they clean my overnight bag out thoroughly. I only use the one over night bag for 7 days then its out and in with a new one. My leg bag, gets cleaned in the shower with me. Andy, I don’t understand what you mean by the ‘softer material would take up liquid and stick’ so may i suggest a leg bag from Simpla or Trident? They may have a material backing but heck if you dry it with your towel, its usually a fibre that appears to dry quickly – I have no problems!
    When it comes to pong-ey pee…consider what foods you may be eating that have effected the odour for example – asparagus (peeewww)! Also beetroot will make your pee go a slight pink or red watery colour. Diet is absolutely essential to good health. I’m lucky in that I have a family whereby they taught me the value and how cook healthy meals. Did you know that blueberries are a fabulous anti-oxidant? I bearly eat ‘junk’ food, but I do have the odd chocolate delicious now and then…(Im certainly not pure).
    So diet is essential. Hope what i find good for me, may be useful for you guys too.
    Cheers!

65. My goodness – Yet again I am thankfull to the UKs NHS. Although they have their problems, when it comes to bags I am given ample supply to change as often as I like. My night bags are single use only and leg bags can also be changed daily if required. No-one has ever suggested that I should wash out my bags – Im just told to change them as required. Is all this washing of bags due to what your medical insurance covers? Im so sorry that so many of you are suffering odour problems – piddling into a bag is degrading enough!

    Hugs to all.

66. Not perfect is better than not at all. In Australia most wheelchair users qualify for CAPS. It provides a payment to assist eligible people with permanent and severe incontinence to meet some of the costs of their incontinence products. A payment of $506.30 is made by Medicare Australia directly into a nominated bank account annually. I don’t reuse bags or catheters much, but I do use them well beyond their suggested use-by date. I use “overnight bags” for weeks. Nobody complains that I smell except me. I have very sharp senses of sight smell and sound.

67. Yes, I dont pong either! The only time my pee ponged was after asparagus and once when I had an infection! :)

68. Haha, no asparagus for me yukka. But I have had PUBS (Purple Urinary Bag Syndrome). Yes, I am serious, it is a real syndrome. My urinary bags have gone blue several times over 16 years. Brocolli seems to be a trigger for me, interestingly many report constipation.

69. WOW – My daughter would love that, she is mad on anything purple!

    What causes it? Is it some kind of chemical reaction with the plastic?

70. PUBS can occur by ingesting one of the twenty standard amino acids, Tryptophan. Found in most protein-based foods it is particularly plentiful in chocolate, oats, dried dates, milk, yogurt, cottage cheese, red meat, eggs, fish, poultry, sesame, chickpeas, sunflower seeds, pumpkin seeds, spirulina, and peanuts.

    It occurs in part from bacteria in urine and despite the alarming purple indigo or blue urinary bags color, PUBS is usually harmless. I’ll take a photo for you guys next time I get it. Do not mistake it with dis-colored urine from blood. I’ve had pink to jet black wee-wee from blood. If in any doubt call a doctor.

71. Thanks to all for your input. Here in the US my insurnce doesn’t covedr the cost of night bags. $9.00 each so I make them last as long as possible. They are called “Ken Guard” bags. Ironic, huh?

    The nurse at the docs office always gets me 3 extra leg bags when tube is changed every 4 weeks. Will ask med supply store what kind of leg bags they have and cost. But I guess plastic is plastic and will eventually hold odors anyway.

72. Hello. Newbie here. Just wanted to add my 2 cents to this discussion on bag & catheter odors. I’ve had a SPC since Dec. 2002. After living harmoniously with the SPC for about 2 years, I started smelling an odor coming from my insertion site. Over time it worsened and eventually the odor began to leach through my leg bags. I would change them often & within in 48 hours the odor would infiltrate through the new bag. I found some bags on-line that were suppose to be odor encapsulating, but after approximately 4 days even these bags would emanate the foul odor. To make a long story short, I went to my Urologist and he checked me for UTI. Sure enough I was positive, he put me on an antibiotic 5 days later the odor was gone. I know many odors are not caused by infection, and I don’t believe in using antibiotics unless absolutely necessary. However over the years I have learned that if I let the odors last for very long I begin to get bladder spasms, IBS, acute cystitis, etc. After taking a full 2 weeks course of antibiotics I’m back to my normal self. I also have found out through experience the longer I go without taking antibiotics the quicker my foleys must be changed, not to mention the more painful removal & insertion is. I am afraid of immunity to antibiotics, but as has been mentioned before on your blog it’s a matter of quality/quantity of life issue. Also want to thank you Graham for having a very informative & influential site. Kudos to you sir!

73. Hi Ken and welcome. I’m still kind of new here and it’s a great place to learn and vent.
    I’ve been tested for UTI’s but in one year have only had one and it was not fun. That’s when I learned about bladder spasms. I was playing basketball for almost a week. Had to wait for test results to comed back before I could get a script an dthedn had to wait for the drugs to kiick in. Dribbles and double dribbles, urine in bag and out. There is only one antibiotic I can take due to dr’s over prescribing years ago and am now allergic to all the main drugs. So the odors are not from infection.

    Got insurance approval for the silver type cath. Now just have to wait for them to come in. Also found out they will cover bags (at least a few a month) Maybe they will be a different mfg and the bags will be less pourous to hold the odor. Will see and let you all know how it works out.

74. hi can anyone help me i have a catheter in and some time when i am passing wee it pops and then i pass blood can any one tell me why and what should i do if it happens again thanks

75. Hi Barbara: We really need more info. If you have a supra pubic catheter you should be passing wee constantly. Are you a wheelchair user? Is the catheter only temporary? Popping is not common with an SPC. Keep your fluids up and check that your legbag or drainbag valve isn’t sticking.

    Ken: Thanks mate.

76. Oh wail, wail, wail, wail….. all this talk of pong-y pee… well now mine does! And I’m not feeling too flash, my bladder is spasming. Yet have been drinking my water. So had a test, yes, ANOTHER infection thus, ANOTHER lot of antibiotics (Alprim which I think are useless). Oh heck…thats the last time I’m going to keep saying “i’m pissed off…” about something. next week, i’m off to day surgery to have my annual bladder investigation – you know the one, where they stick the microscope up your uretha… wail, wail, wail…I’m dreading it…

77. I really liked reading through your website. I have gone through three supra-pubic insertions so far and expecting two more, or just more in the future. I have recurring hypospadias that required the use of supra-pubic catheters. Right now, I am into three weeks with this SPC and my doctor says I need to change it again in one month. I am due for another corrective procedure to get rid of scar tissue blocking my urethra, so the only way to clear my bladder is through the SPC; a Foley through the other way simply isn’t an option. It’s uncomfortable, true, I couldn’t do anything for a while, but it settles and I’m able to do more, like work.

78. Vincent, My spc is changed every 4 weeks. not a big deal after a year. Just a bit uncomfortable. Then for being such a brave girl I get one antibiotic (Macrobid) pill to hopefully avoid infection. Life is so much better with the spc because I don’t have to go looking for wheelchair accessible bathrooms. Here in the US of A those of us that are physically challenged are a growing minority but still discriminated against when it comes to accessibility and jobs.

    JWTAS “pissed off” is still better than being “pissed on” which is no longer a problem unless a bag leaks or I miss the container I keep in the van. LOL

    Been there done that with microscope. (only once) and the after affects were worse than the procedure.

79. Thanks June. Actually, I must write down the name of that antibiotic and suggest it to my GP for me to take after I have a catheter change because I’m getting regular infections after my monthlys and also after a catheter change. (Yep, I’m dreading next Thursday with the microscopic procedure!!!!!)….

80. You’ll be fine!!! Now go to the top of the site here and check out the disaility humor. I’m still laughing. Gonna geta me a new T-shirt made up.

81. My last post was Aug 26 and haven’t seen any new posts. Hope all is well with everyone!

82. I thought the same June, even tested comments are working, has just been a quiet week. There have been comments since Aug 26, hit Ctrl+F5 to refresh the page. I’ve developed all the symptoms of a double kidney infection today. Going to bed soon to try a Releene catheter. I too hope the quiteness means all is well with everyone. All the best. -G

83. Hi Graham
    I have too!!! I have this horrid pain in my right kidney but i also had a rotten case of ‘food poisoning’ (It sounds a heck of a lot better than gastro) at 3:00am and worried i have something from that! I’m trying to ignore it!!!! So what are the symptons of a Kidney infection?
    JWTAS

84. Sorry to hear that, food poisoning is a wheelies nightmare. For me as a quadriplegic double kidney infections cause my face to go hot, I spasm more, sweat, shake, feel exhausted, am short of breath, dizzy and lack concentration. If have it more than a day my back starts to hurt.

    A few months ago a trusted urologist told me anytime your catheter blocks so bad you bypass, there’s a high risk of developing kidney infection. My bed was a bit wet this morning. Hence trying a Releene catheter, they are short from balloon to tip, and will hopefully not poke down my urethra, causing blockage. Last time I was a week on IV genta 3xdaily. I’m supposed to fly to Thailand in 12 days.

85. Hi June
    End of August is getting little ones ready for starting school/preschool, they have now started back….I get some time for me.

    Graham – look after yourself so you can enjoy Thailand trip.

    I’m still getting constant infections, taking vit c and cranberry tabs to help which doesn’t stop it but seem to reduce severity and i can wait much longer before taking antibiotics. Does that make sense?

    I get bad spasms and am due to have catheter change in day surgery because spasms are so painful, I am amazed anyone manages to cope with them. You’re all a lot braver than me! I too hate the bladder inspections, my doc isn’t the most patient or gentle person. Maybe he should have it done?

    Do you all find cath changes get better or worse over time? :)

86. Hi Graham
    Gees Hon… that does sound awful! I so hope you feel better today!
    @ Tamzynne there are some anti-spasming medication you can take and I take Oxytrol patches because the Ditrapan tablets cause constipation. Graham always gives us the advice to drink loads of water, and this is important. My urologist the other day told me that you will always have what appears as bacteria in your bladder because of the foriegn object (catheter). However because I am getting so many reoccurring infections like full on ones, I have started a daily 250mg of Cephalexin anti-biotic. This should be one of the last resorts.
    Also keep your insertion site clean and I use benadine anti-bacterial solution for this after my shower everyday. It keeps the site dry and not ouzing.
    Best of luck!
    JWTAS

87. Thanks for the well wishes guys. We changed my catheter for the Releene one last night. The difference in tip length is only small but what a difference. I drank two litres overnight and by morning felt much better. A mate came over today, fired up the bbq and we had a big lunch. Looks like I’ll avoid the week in hospital, yay. In time I’ll put some photos of tip lengths up.

    Tamzynne: My catheter changes have always been relatively painless so I can’t say they get better in time, but mine have not become any worse. Oxtrol patches (Oxybutynin, Vesicare, Detrol LA tablets) can ease over-active bladder spasm. Drinking +3 litres/day, silver coated catheters, Hiprex or Urex etc can reduce infection incidence rates. There are more tips in the article. Apply lidocaine liberally to the site and new catheter prior to changing to ease discomfort.

88. Graham – The same thing has happened to me this week for the first time; catheter entering the urethra as a result of bladder spasms. Was quite uncomfortable and really freaked me out the 1st time. Im really disapointed since my SPC was working out really well for me once the wound infection cleared and now this.

    I have been prescribed an anti-cholongeric (sp) to help cut down spasms and am already on baclofen for different spasms. Im not sure why my bladder spasms have increased so much to cause this to happen. No sign of infection. The new drug certainly isnt a miracle cure. Still having 5 spasms a day each resulting in a disappearing cath.

    To fix it I am having to deflate the ballon and pull the cath back till I think its in the correct place and then reinflate. If I dont deflate Im unable to pull it back. My doc reacons the entire ballon is entering the urethra since this was happening with the urethral cath also. Its so painful. Very nervous pulling back on the cath incase I pull it out – its only been in 4 wks so isnt meant to come out yet till it heals some more.

    My urologist is being writen to so as he can make a plan for future management – any ideas what can be down other than drugs? Really cant live comfortably with this happening afew times a day – dealt with it long enough with urethral cath. Tempted to go to emergency room during a spasm with displaced cath and see if I can get some quicker treatment, whatever it may be.

    Graham, I really hope your infection clears up soon so as you can feel better and get rid of this nasty resulting symptom.

    To everyone else, just saying hello and hope you are all well.

    Sorry this has ended up such a long post. Just worried and fed up with this.

    Big hugs all round.
    xx

89. Hello,

    I am planning to travel recently and i have a few questions. I am a bit confused and afraid because this is the first time i am going to travel by air on an international flight after i had this procedure. Your article is very very useful but i want to know what happens when the silicone expands slightly when we go above 2000ft. Does one feel anything and what precautions should i take? Also what preacautions in general should i take while travelling? Should i leave the urine bag on while travelling and is it ok to leave it on drainage even if i am unable to take too much water intake? Or should i put the urine bag and clamp it. On daily routine i dont leave the urine bag attached.

    Many thanks.

90. I have only flown with urethral catheters with no problems – everything was kept and felt normal. Normal for me is a leg bag on free drainage and it was all fine.

    I wouldnt worry about expansion of the cath or skin, skin has huge capabilities of stretching painlessly, ie pregnancy. As for clamping it or not, just do what is normal for you. The only benefit of attaching a leg bag would be not having to worry about visiting cramped plane toilets.

    I hope it all goes well for you and you have an enjoyable trip.

91. YA: I believe the silicone expansion thing was blown way out of proportion by tales of women with silicone breast implants exploding on international flights. In the very early days of silicone breast implants they did leak, enough to put Dow Corning out of business. While much safer, new age silicone and polymers should still be used with healthy caution. I fly overseas soon and the outcome will I imagine see me retract the catheter expansion precaution. Follow your daily routine YA, or do as I do and phone the airline company asking of their policy.

    Siobhan: you are doing everything right in my opinion. Stay on the anti-cholongeric, what brand and dosage are you on? I hope to have some more specific advice for you soon.

92. Hi everyone, things have been quiet for me since I had botox injections in the back of the bladder wall. During that procedure with the help of the camera they discovered while sitting the catheter tip went into the urethra preventing any drainage and causing reflux. While waiting for a date to relocate the site I started to have a strong smell from the site. That was followed by chills fever and spasms. I failed my urine test and within 3 days of treatment with cipro my symptoms are gone. My doc tried to get me to have a surgery to bypass my bladder, using a small section of intestine and have the urine drain into a bag attached to my side. If I was not as informed as I am from the collective experiences we share here I would have gone along with my doc. There is no reason for me to have an irreversible procedure at this time. I go get a third belly button on the 19th, I feel confidant that I made an informed decision thanks to all of you.

93. Dear Laurie
    Could you please explain your post a bit more? So you have a SPC and since you’ve had the botox, you have avoided having that other procedure to bypass your bladder? So what do you mean you go and get a third belly button on the 19th? I’m not quite sure what you mean? Are you implying you are going ahead with the bypass? And the botox treatment actually has helped you? Hope you dont mind explaining.
    Kind regards
    JWTAS

94. Hi all. I’ve only had bladder spasms once due to having a UTI and a week of Toviaz 4 mg once a day worked for the spasms. I didn’t take the second week because the anibiotics kicked in and the spasms stopped.

    I also have a fear of flying and if I ever get on a plane again, I will use my leg bag and empty it into a container (while hopefully no one is watching) because I would not be able to get into a plane bathroom. I guess I could use a night bag while in flight then I wouldn’t have to empty it.

    On a lighter note, if my son goes with me I guess I will have to explain the spc to him. When I had the surgery done last year I told him I was getting my tubes tied so I couldn’t get pregnant. LOL He’s 2 hours away at college and I have custody of the cats.

    But I doubt I’ll be flying anytime soon because of the wheelchair issue. My sister’s house would have to have a temporary ramp put in and then get chairs/benchs for in and out of the shower and then add the Texas heat and it’s doesn’t seem worth the trouble. At least in my house I can accomplish what needs to be done. I guess I’m just too darn independent and don’t want to have to rely on others unless I have no choice.

    Add to that, I wouldn’t be able to take my own wheelchair because I don’t trust the airlines not to damage it.

    Oh well, New England (Massachusetts) is beautiful so I’ll probably just stay here and go to the casino instead.

95. Hi JWTAS, I last posted 1 Aug, I have had an SPC for 3 years due to a progressive neurological disease. I have been in a chair for 4 years. I had a lot of spasms and urine retention. I knew I wasn’t draining when sitting in my chair and I was getting lot a of UTI’s. The medical answer was to limit my time in my chair to 4 hours a day. It took a year to get botox injections and at the same time they discovered the reason I couldn’t drain while sitting. The botox really helped with the spasms but did nothing for my drainage problem. I think my doc felt I would be easier for him to manage by taking my bladder out of the equation. I will still need botox every 6-12 months. My current site is directly under my belly button, so it looks like I have 2. I am not going along with my doc, I will have a site relocation, it will look like I have 3 belly buttons.

96. Graham…The drug I am on is detrusitol / tolterodine tartrate (UK names??) 2mg. Not getting much/any benefit yet!

    Laurie…Good luck with the site relocation. Hearing about your botox is very interesting – thankyou.

    June…Please dont be put off flying. Airports have entire departments for the sole purpose of transporting wheelchair passangers. I have always been treated with dignity and the whole process has gone like clockwork. My wheelchair has always been well looked after also. Im so confident with the care I recieve at airports when I next fly I am going to do it alone relying totally on airport staff – they are that good.

    Once you arrive at your destination most problems are fixable with a little planning. You can buy moveable ramps which fold up super small when not in use. They are very sturdy and efficient. For showering, a plastic garden chair in the cubicle has worked well for me on occasions.

    Please dont think Im belittleing your problems – Im only trying to help and reassure you. I know outwith your own home evrything is trickier and takes extra effort. But hopefully the benefits you get from having a holiday will make it worthwhile.

    (SORRY FOR THE NON CATHETER RELATED CONTENT)

    Hugs to all.
    xx

97. Laurie, I have MS and spend way too much time in my chair too. I have found that moving in and out of the chair promotes bladder drainage. Also, I have Physical therapy and because of all the movement that entails it causes my bags to fill up and I have to take a break halfway through the sessions to empty the leg bag. This happens even when I limit my fluid intake prior to PT. So keep on trying to move even while in your chair. Wheelchair push ups are good for movement and also exercise for the upper body.

    Keep moving my friend even if it seems useless for neurological progression. There are quite a few exercises you can do in the chair.

98. Siobhan, detrusitol do start working straight away but can take upto 12 weeks to fully kick in. As your bladder is quite small the catheter may be irritating causing some of the spasming. You may benefit from using a catheter with small 5cc balloon and short tip like the Releen I’m trialing. Ask your supplier for the shortest balloon to tip one they have. Or just ride it out for 12 weeks and see how you feel. I think they should only make silicone foley silver coated short tipped 5-40cc balloon catheters. Nobody would be worse off, and so many would benefit.

    Laurie, good to hear from you and thank-you. If the only thing this website ever does is save one persons bladder it is all worth while, it has purpose. Good luck with the re-site. Mine took a few months to get right, make sure they use a top quality silicone foley catheter to start with.

    *Note: Guys if your comment doesn’t post immediately it probably contains a spam like word. Don’t worry, I will approve the comment as soon as I see it.

99. Graham, thank you so much for the advice and explanation. Very helpful. I will ride it out and wait for drugs to work. Although my cath is due changed in 2wks and the new caths have the balloon near the tip anyway. I will be interested to see the position of balloon on the current catheter.

    Sorry about the duplicate posts – Im just so used to seeing my posts appear immediately I didnt know where they were disappearing to. I understand now.

    Thank you so much as always – this site is brilliant. I cant thank you enough.

100. Siobhan,

     Thanks for the flying comments. Still not sure about the chair issue. $10,000 is expensive and not easy to fold up. I have used airport chairs before and have not found US airports very friendly. I guess they think the brain doesn’t work because the legs don’t. I will consider your ideas. I’ll just use the “You break it, You bought it” and I need it NOW!!!

     Graham, I really like reading all the comments even if they don’t always apply to me. I have learned a lot about all sorts of thing I never knew that may be useful in the future. Just knowing there are others with sometmes similar problems is comforting. I’m glad I found you all and maybe someday some of us can meet in person.