Catheter Problems
  • Roger May 2011
    As a urologist, I experienced a wide range of problems from patients using long-term and intermittent self-catheterisation. Urinary infections can cause substantial problems.

    This field of healthcare has not advanced in line with other branches of medicine and I believe a great deal could be done to improve the quality of life for patients who need to use urinary catheters to control their bladder dysfunction. It is not going to be possible to make the progress we anticipated unless catheter-users and health professionals support this project. We do need to learn much more about their experiences if we are to bring catheter care into the 21st Century.

    Roger
  • DeeNJai May 2011
    I will repost the address on Bladder & Bowel Support and try and some of them to come over to here.
    Dee
  • gibsil May 2011
    Dear Roger
    I agree with you on the subject of urinary catheters, how it can change your life unfortunately in my case for the worse and this is where as you said medicine is lacking behind. Continuous infections that can drive you mad and not to mention what the long term problems using a catheter several times a day hold as there have to be some eventually no matter what we are told and that is why I fear the day when I might become less mobile and have to have an indwelling catheteter.
    Like you said it would also be helpful to hear from other catheter users and how they have coped. What it needs is a complete new invention like an implant or something that could get the bladder muscles working again and bring some dignity back.

    Sylvia
  • DeeNJai May 2011
    Hi Roger
    I agree that there hasn't been much change in the design of catheter in years. There have been a few new isc catheters for women recently and the new compact catheter for men. Indwelling catheters haven't changed at all. When I have one in the past I would bypass regularly and once I had the balloon come out still inflated. Currently I am finding that after I have removed the ISC catheter I am getting out more urine.
    Dee
    PS: Have posted again on the other site
  • DeeNJai May 2011
    Touch wood so far I haven't had an UTI yet which is good.
    Dee
  • Janet June 2011
    Hi Dee
    That was a really unpleasant experience for you. Unfortunately bypassing and catheters coming out with the balloon fully inflated are regular occurrences for some patients. Unfortunately the importance of putting the amount of water in the balloon that is recommended by the manufacturer is not fully understood by the healthcare professional and as a consequence putting too little water in the balloon alters the configeration of the balloon and leakage or bypassing may occur
    A decision is sometimes made to catheterise because of extreme urgency and urge incontinence.However, with these symptoms the bladder is likely to be overactive the bladder muscle contracts resulting in bypassing or even expelling the balloon as you experienced .
    I am pleased all is going well for you doing ISC and you are free from infection.Long may it continue

    Janet
  • Janet June 2011
    Dear Sylvia
    Thank you for your post. We need to hear from as many catheter users as possible so we can make the case for a new design to replace the foley catheter now long overdue. So keep posting, we want to hear about all the problems you have experienced with a catheter.We want a little of the amazing advances seen in other branches of medicine, then so much could be achieved to improve the life of catheter users Help us to get the attention this branch of medcine so desparately needs .
  • gibsil June 2011
    Dear Janet
    Had my newsletters today and glad to hear things are getting moving as to recognising the needs of catheter users, it is way past time for the people who have to use those outdated indwelling catheters along with all the problems they incur, I have known about the amount of infections and distress they cause from working in elderly day centre care and the effects leading to depression and in some cases dementia, which is not surprising as I myself know first hand what it is like to have continuous urine infections and that,s just using ISC.
    It is way past time for catheters to have be used at all when so much else has gone forward in medicine.

    Sylvia
  • Janet June 2011
    so say all of us loud and clear.
    I was reading the history of catheters and found some very interesting facts.As far back as the ninth century the problems of encrustation and blockage were known. They explored various materials having recognised the need for a catheter that had the least resistance i.e. a smooth surface to avoid damage to the urethra ,gold was found to be best at the time. I find it hard to believe all these centuries later we are still exploring materials to solve our catheter problems of infection, encrustation and blockage , yet no closer to finding an answer. We need a complete change of direction. Please let us know what you think!
    Janet
  • gibsil June 2011
    Hard to believe that catheters must be the only medical items that are still in existence all these centuries later. I agree with a complete change of direction for catheter users, I would even accept an injection to get my bladder working again and I hate needles, or a tablet or some kind of implant perhaps worked by a remote or something to completely change this problem, unfortunately it won,t come in my time, even a catheter that could be inserted to stay in place discretely, but not cause the problems that long term indwelling catheter users experience.

    Sylvia
  • Janet June 2011
    What we need is more people like you, supporting a push for change. Your support, opinions and experiences help greately towards our research and devlopment into creating a completely new catheter design. Meeting your needs is the central focus of what we hope to achieve from the 21CCP project.

    The aim of our website and forum is to build an online information resource and community where catheter users can air their views and tell of their personal catheter experiences.

    At this stage we know of several new developments in the pipeline, which we hope will come available in the near future, pending the support of users like yourself and healthcare professionals as well a continued source of financial aid. We truly hope that it will not be as long as another hundred years before we can say good bye to the 'foley catheter'.

    A prototype of the foley catheter was designed in 1853



    Janet
  • DeeNJai June 2011
    Its about time the design is changed then.
    Dee
  • gibsil June 2011
    I agree with you Dee, it,s time the Foley catheter was consigned to a museum as it,s well past it,s best date, and for the people who have to use it regularly, and all the problems they incur with it.
    It,s good to hear Janet that there are several new developments let,s hope they will soon be available and a greater improvement and quality of life for the users.


    Sylvia
  • Janet June 2011
    nothing moves very fast in the field of medecine; that's why we are going to have a jolly good go at giving it a healthy push. We need all of you with catheters to register your support
  • gibsil June 2011
    It,s only taken four to six thousand years Janet so I won,t hold my breath that one day I will be catheter free, but anything in the right direction will be a good thing, so count on my support.

    Sylvia
  • Janet June 2011
    Thanks Sylvia it is good to have your support .I hope before very long we will have a growing band of supporters like you.Have you read DEE latest posts?

    janet
  • gibsil June 2011
    I am only just catching up with the latest posts as my computer has had a virus for a week and had to be cleared, only got it back today, but still can,t get my emails, so it,s back again tomorrow. I saw in your newsletter that there were not many completed questionaires, I did the one for this but it was in the early days when I was having trouble logging in and I wonder if it did register. Glad to hear things are still going well.

    Sylvia
  • Janet June 2011
    I will check this with Peter.

    Janet
  • gibsil July 2011
    Thanks Janet, sorry iv,e not been in touch I was away last week for a couple of days to my daughter,s, and my homeward flight was cancelled and guess what I didn,t have enough catheters to last me another day when I could have got another flight, only took enough because I was only going for a couple of days, but managed to get an earlier flight for the original day. Unfortunately on getting off the plane about a hundred people all at once want the toilets, so I knew it was no good waiting as the time it takes me with using a catheter, luckily I live about 2 hrs away so managed to hold on for that time, I just long for a day when catheters can be consigned to the bin and something else invented that could make life a lot easier and could empty our bladders in a normal way.

    Sylvia
  • Janet July 2011
    I hope you enjoyed the time with your daughter. It's just good to get away . sometimes.Does your daughter live somewhere exciting? It is difficult enough for those of us without problems to use the toilet when several planes have landed at the same time let alone when you need to have those few extra minutes to get your self sorted We all worry we are taking too long when there is a queue outside.You did really well to get home as two hours can be a log time when you are desparate.I guess the tip for your next visit is to take more catheters to prepare for an emergency.Its always easy to be clever after the event.Did Peter confirm with you that he has received your questionaire.Thanks for keeping in touch.We will keep working hard, pressing for change, so that your life and others may be improved.
    Janet
  • gibsil July 2011
    I,m glad my questionaire was received alright as I wasn,t sure if I had posted it properly.
    Janet - there was another question I meant to ask you, why is it when I started to catheterise I was told I would only need to do it twice daily, then it was put up to three, now i,m having to do it five times daily and feel I need to do more sometimes, although I do make myself do no more than five times, is it because catheterising eventually does more damage to the bladder muscles therefore making the bladder lazier and more reliant on catheterising as I was never told this would happen.
  • mwilde July 2011
    Hello Gibsil, Catheterising frequency varies for individual, as some people can empty the bladder some of the time but use a catheter two or three times a day to be sure all the residual urine is out. For those with more severe retention, catheterising 4-5 times a day is often the norm. If your clinical provider (physician or nurse) told you it was needed only twice a day, there might have been a reason for that. Have you talked it over with that person recently or had any bladder testing done? You might need to do this more often than originally anticipated. Mary
  • gibsil July 2011
    Thankyou Mary, I had a urodynamic test last February, and I don,t think the results will be good, I don,t see the urogolist until next month. If ever I phoned up and queried any problems the urology nurse usually said see your GP and the GP would say what are they there for, so I gave up on that one a long while back. The question I really wanted to know though was if this extra catheterising does damage the bladder muscles as I feel my problem is worse now than it would have been if things had been left alone as just after I was diagnosed and was only using a catheter twice daily things did start to improve where I felt I didn,t need to catheterise at all and was passing urine quite well.
    Then when I was told to do it three times a day that,s when things have become worse.
    That,s why I feel I was wrongly advised.

    Sylvia
  • DeeNJai July 2011
    May try and listen to your body and see what you feel maybe only cath when your body says it needs it. I must get back to cath'ing every day as I havent been doing a while.
    Dee
  • gibsil July 2011
    Hi Dee

    I think also I sometimes drink too much as I like my tea and this could help problems with having to catheterise more, but I am going to try and restrict it to no more than three cups a day and see what happens. Hope things are going OK for you
    Regards

    Sylvia
  • Janet July 2011
    Hi Sylvia
    Your bladder needs lots of fluid so think very carefully before reducing your intake.i can appreciate that is seems like a good idea to reduce the number of catheterisations you do but it is a balance you must aim for.
    You have increased the number of catheterisations you do ;is this because you feel the need to empty or do you leak. Do you always try to empty your bladder before using your catheter?After urinating what volumes do you get with the catheter?
    Sorry about all lthe questions .

    Janet
  • Janet July 2011
    Hi Dee

    How are you ? Have you got your catheter problems sorted. Let me know if you are still experienccing problems

    Janet
  • So I have just started using a catheter. It has only been a few days and I have just been instructed how to self catheterize. I was actually nauseous the first few times. I was shocked when the doctor told me I to do this "for the rest of my life". I don't think he realized how shocked I was. I am a 65 year old runner. He had no clue why my bladder stopped getting instructions to work.

    Here's the deal- the catheter hurts gong in and coming out it hurts even more. The FedEx box with 200 plus catheters came yesterday and I got a sinking feeling when I realized I will be doing this 200 times every month. I examined the tip of the catheter and noticed a design flaw. It's flexible enough but the openings near the tips are cut out rectangular shaped but there in no inward bevel so the soft tissue in the Urethra encounter a rectangular opening with what amounts to a sharp edge. If the openings were beveled inward and carefully rounded off, it would be much more comfortable to insert.

    For the bigger issue, I want to know precisely why my bladder doesn't get instructions to work. The Urologist's attitude was "what difference does it make?" That infuriates me. In my case it may be because of a serious back injury that damaged my nerves. but what if they are just pinched? His prognosis was pretty bleak. I think he said about half a dozen of his patients ever recovered from the condition once they stated using catheters. I know my kidneys were being affected so I have to do this. But at least the manufactures can design a better product can't they? I am an engineer so I know this can be better- it's pretty obvious that this thing is going to aggravate soft tissue.
  • DeeNJai July 2011
    Hi & welcome to the forum.
    which catheters have been given their are many different makes of catheters that you could try. Where do you live. You contact the manufacturer to tell them that the catheters aren't very good. They will ask for the batch number and date of expiry. Sometimes they will never find out why the bladder stops working so don't worry yourself. It does get easier as you get use to doing the self catheterasation. Just give it time and in a while it will become second nature.
    Dee
  • DeeNJai July 2011
    Hi Janet
    I'm sort of OK, my foster mother died on 11 July. So haven't been in a good frame of mind for few days. I haven't started to re-cath at the moment but I will be starting again on Monday. Once I get back into the routine I will be fine. I do feel better when I am doing it every two hours up to 10pm. I sometimes have to catheterization during the night because I get bad stabbing pain just above pelvic bone.
    Dee
  • Thanks Dee,
    I am still in shock that I even have to do this. I guess there are many many reasons and symptoms and maybe mine are not as serious as others. Apparently I have lost the sensation that tells me to urinate so I don't feel any pain. I was holding 850 ml when I was tested and I could not tell it was there. On the plus side, I lost a lot of weight since cauterization and I am not as tired. I'm not ready to resign to this regiment without a whole lot of research. I live in the Dallas Fort Worth area and Blue Cross/Shield contracted a company called SMS Inc. out of South Lake Texas to supply the catheters. The woman I talked to from SMS said the catheters are $1.50 each. They supply enough so I don't have to reuse them, but they are apparently re usable. Is that recommended? 'soak in warm soapy water for 15 minutes and air dry" is what I was instructed to do.
  • gibsil July 2011
    Hi General relativity

    Welcome and I was very interested to read your post as your condition sounds the same as mine, we are the same age and like you was a very fit person who cycled or walked everywhere, was never ill and like you this came as a great shock to be told it would be for life, in fact I was just told I would have to get on with it, so you can imagine how I felt, so I know how devastated you must feel. I was holding about a litre when first diagnosed. I would certainly try some different catheters. I would be interested if you find out any more by researching and I hope things will be OK for you.
    Keep in touch

    Sylvia
  • gibsil July 2011
    Hi Janet

    Thanks for your reply, Iv,e cut out some of the tea I was drinking and trying to survive on only two cups a day and replace the rest with water, yes I always empty my bladder before catheterising , no I don,t have a problem with leakage thank goodness, but I think it was when I was told I would have to drink more that is when problems started with having to catheterise more than the three times as I am currently on five and don,t want to have do more than this, also at the moment I am lucky that I don,t have to get out during the night as I was going through a spell of having to do this last year, but I cut out the evening drinking earlier. I can,t remember the volumes of urine I pass with catheterising, I will have maybe to start measuring again.
    I think this is all my answers for now.
    Thanks

    Sylvia
  • gibsi,

    I have been a life long runner. I couldn't run for several months because of nerve damage below the knee (flop foot syndrome). I had an operation, started running again but my back was hurting. I got an MRI on my spine and radiologist called me in to show me my bladder was holding 1000ml. Now that the bladder can be completely emptied, it was clear that a lot of my back pain was cause by the bladder and probably the kidneys. I still have back pain. I hope if I can find the cause of that, the retention problem can be corrected. My Urologist isn't even suggesting a 'cure' and that is depressing. Even the day before I saw the Urologist I could void, even if not completely but now I can't even get a drop without a catheter. I can run and will continue to run. When I ask the doctor if my problem was at all a fitness issue he said, "No, you are in better shape than 90% of the guys I see". Oddly, that didn't make me feel any better. I guess like anything else, I will get use to it.
  • Janet July 2011
    Dear General Activity
    I am so sorry that the news you were to have to catheterise was given to you in such an uncaring manner. It should not be a painful process although a little uncomfortable when you first begin. Of course you want to know why your bladder is failing to let you know when it is full. However ,it is not always possible to know exactly why this should happen. The residual urine is likely to have built up over a considerable time and may well have been caused by nerve damage.The innovation of the nerves toth bladder are at the level of sacral 234 so any injury at this level may effect the bladder muscle tone.As your urologist said the most likely cause was your serious back injury.Another possibility could be that your bladder muscle may be tired from the effort of overcoming an obstruction or it can happen for no clear reason. Intermittent catheterisation (ISC) although very daunting when you first hear that you may have to do it for life, the most important fact to consider about ISC is that by catheterising you are protecting your kidneys .By having a residual urine you will be prone to infections, ISC will help to avoid these infections if you empty the bladder at regular intervals .
    As Dee said there are numerous makes of catheter so don't put up with the catheter that has been so badly made ,ask to see alternatives.
    I will find out for you those that are available to you in the states
    Janet
  • DeeNJai July 2011
    when i had my urodynmics test done they put in nearly a litre of fluid but couldn't feel it at all. My urologist thinks that my bladder holds around 200mls before it starts to leak. I take Vesicare 10mg everyday it helps a bit but I still leak regularly.
    Dee
  • Matty August 2011
    Hi I'm Matty 29 (feeling 79 at times) I hald mild cerebral palsy (affecting all 4 limbs) but luckily managd a normal life without much difficulty. I've suffered from uti's increasing in frequency since i had my son almost 8 years ago. 2 years ago i had a recurrent uti which developed into urinary sepsis during treatment of this i went into acute retention and was catheterised in hospital. To cut a long story short on discharge from hospital i was told i would need an indwelling catheter for 2 weeks and then it be removed for trial during this time i had several days of passing blood and clots which they said heamaturia (the catheter rubbing on the lining of bladder) confirmed by a cystocopy. During the trial i was at the hospital for a day and only able to void 50ml at a time but the decision was made that that would be fine. 2 days later i ended up in hospital and was this time scanned and found i have 2500ml in my bladder so once again was catheterised.
    I then had 3 failed trials and had an indwelling for the best part of 4 months before being taught isc. I always struggled with this to be honest but struggled on for about a year before it became virtually impossible. I would void as much as i could before cathing but i would go into spasm before the tip reached my bladder meaning some urine would bypass catheter before it was expelled. I struggled to find support with this and came across the attitude that it must be because i found it fiddily and couldnt be bothered but once again i found my self having recurent asscending utis which more often than not ended up in kidney infections.
    After being in discomfort for weeks and with 3 lots of anti biotics not treating infections i found myself at hospital again and was scanned and they found almost 5 litres this was almost 3 months ago now and I have catheterised almost continually since but agan having heamaturia. Also this time I have expelled the catheter ballon still inflated at least 18 times despite taking oxybutain. Nurses have now said the damage to my uretha is noticable and they are finding inserting catheters harder, itfeels similar to the swelling and bruising after birth. The catheter does always come straight out either and is often lodged. Because of the damge when a new catheter is inserted it often blocks with clots. I have been on 10 courses of anti biotics before my infection cleared as my infecctions are nowresistant to many anti biotics.
    Last week a different nurse to usual came and seemed shocked id never heard of or tried a flip flow valve and since using it during the day and switching to constant drainage over night my catheter has only been expelled once. I can't believe what a difference it has made to my confidence and pain levels I only wish i had met her years ago. They keep talking about a supra pubic catheter and how it may be the better option but for now it seems there plan is to give my bladder a rest and try isc again - fingers crossed i can manage and my 3 months of discomfort havent been for nothing. I question however as do my family how i can expel catheter but still be unable to void more than a dribble.
    Sorry this is so long, hope it makes sense
    Matty
  • Janet August 2011
    Hi Matty
    I was so concerned to read about the traumatic experience you have had with catheters over many months . Reading the history you have given me the most probable cause of your bladder problems is because of the mild cerebral palsy you suffered sometime ago. Although you made a good recovery and coping well with life in general your bladder is showing signs of nerve damage. I will try to explain what is a very complex problems in very simple terms.

    Nerve damage can lead to three different kinds of Bladder Control Problems:.

    1. An overactive bladder - The damaged nerves send signals to the bladder instructing it to contract at wrong times.

    2. Sphincter damage - Giving you poor control of the sphincter muscles. There may be dis-coordination between the bladder muscle contracting and the urethra sphincter muscles relaxing to allow you to pass urine. Sphincter damage will prevent you from effectively emptying your bladder and explain why you can only squeeze out very small amounts of urine yet your bladder is very full.

    3. Nerve damage to the bladder is when the bladder muscle does not receive the message the bladder needs to be emptied or it is too weak to contract to empty the bladder completely.

    I will try to explain why you expel your catheters. The catheter is held in the bladder by a balloon inflated with 10cc's of water,the weight of balloon and the protruding tip of the catheter constantly prodding the bladder wall will irritate the bladder causing the bladder muscle to give a powerful contraction, as the bladder muscle contracts the bladder neck opens expelling the catheter.Sometimes this problem is treated incorrectly by putting in an even larger catheter or more water in the ballooon in an attempt to stop the bladder expelling the catheter, this is more likely to make the problem worse ,as the bladder will expel the catheter no matter what size the balloon causing more discomfort to the patient.

    Why can't I pass urine if I can expel the catheter? Because when you attempt to empty your bladder, the nerve signals do not coordinate properly so the urethral muscles under your conscious control will not relax to allow urine to pass.T

    Have you had urodynamic investigations (UDS)? This test involves measuring the pressure while the bladder is being filled, to see how much it holds and if it empties completely. It is a very necessary investigation to determine bladder problems such as the ones you are experiencing.

    I am so pleased that at long last you have been introduced to the catheter valve and that you are no longer experiencing pain. I do hope that you will now find that you have significantly less urinary tract infections.

    If ISC proves not to be satisfactory when you try again in a few months, you may find a supra pubic catheter with a valve is more comfortable for you.The supra pubic catheter will enable you to check how your bladder is doing without removing the catheter.Repeated catheterisations are not pleasant experiences. Most patients when asked prefer the supra pubic catheter as it is more discreet, easier to keep clean and sexually discreet.

    Ask your nurse to explain your bladder problems to you.I think it is important for you to understand why your bladder is behaving so badly.

    I do hope this has been helpful

    Janet
  • Matty August 2011
    HI Janet
    Thank you so much for such a clear explanation. My parents in particular are finding it difficult to explain as I have often over the past few weeks had to phone them suddenly to take my little boy because of pain or having to be recatheterised. No one has ever given me a full explanation before and my parents view was that i was being fobbed off by the cp diagnosis as it is not a degenerative condition, however research I have read (scarce as it is) has shown that ageing with cp can mean more health issues due to over worked muscles that were being fed wrong signals.
    I have never had urodynamics although the idea has been suggested countless times the only tests ive have were a cystocopy and a ultra sound of my kidney when i was being treated for sepsis and now regular kidney function tests. I have only seen the consultant once who maybe i caught on a bad day but who told me that urodynamics is an expense test and they already know the cause and that over time i would probably end up with a stoma and feeding tube too. I didnt leave that appointment in the best of spirits and was never given another. I don't want to turn this into a rant about health professionals but i often am faced with the attitude that i am too young to have the issues i describe and must be exagerating - i often even have to go to out of hours drs to get the anti biotics i need to treat infections. I hope that over time the work down on this site will raise more awareness of the need for better education in this area.
    Until then I am left fighting for treatment and respect of how bad this issue can make me feel I am a single mum to a 7 year star who goes around telling everyone mummy has a 'germ bag' When i was first catheterised it was after i'd been seriously ill so told him it was to make mummy better and take the germs out of her tummy- i know it sounds silly but didnt know what else to tell him. sorry will stop ranting now but thank you so much for your explnation and keep up the good work
    Matty
  • Janet August 2011
    Hi Matty
    With your history it is imperative that you have urodynamic studies, the cost does not come into it.It is your right to have this test which is necessary to assess the bladder damage you have experienced as a consequence of the cerebral palsy ,only then can a plan of management be considered and discusssed with you. With your complex condition you need to be seen by a urologist with a specialist interest in incontinence.Is your consultant a urologist or is he the consultant who cared for you at the time of the cerebral palsy. If you let me know the town or city where you live I will be able to make a few suggestions as to who best to contact. If anyone deserves to have a good rant it is you, so please don't worry it is good to let off steam do it here anytime you like.

    Janet
  • gibsil August 2011
    Hi Matty
    Sorry to hear about your problems, I only hope things will get better for you especially with a young child to look after as well. I fully understand about just wanting a little respect as I myself have found that lacking at times. I also have retention and have to ISC daily and believe me it was not plain sailing and the tears of frustration of never getting answers and like you said there is very little information on the subject.
    I hope the valve catheter will work for you and I wish you good luck for the future and let us know how things progress for you.
  • Matty August 2011
    Hi Janet
    It was a urologist I saw and apparently one of the best. I'm treated at Aberdeen Royal Infirmary. My dad has even been offering recently to pay for a private consultation which in all honesty we don't really have the money for and have been warned that because of location it is possible i would be paying to see the same person.
    Thank you for you support though both Janet and Sylvia I know it sounds wrong as wouldn't wish it on anyone but feels good to know I'm no longer alone
  • gibsil August 2011
    Hi Matty

    See you also live in Scotland. I was told exactly the same thing when I thought about going private as I was fed up getting nowhere and no answers, but I could have ended up with the same consultant. Also I don,t know about your area but I know in mine there are no support groups and I only found that out through the internet, the hospital urology department could tell me nothing, but I feel it would have been very helpful in the early days just to have someone else with the similar problems to speak to in person and to discuss things with, as it was I felt totally alone and just left to get on with things. I think there really ought to be more information and support available as there are for other medical conditions, it still seems as if it is still a taboo subject and will remain so without proper help and awareness. Hope things improve for you.


    Sylvia
  • Matty August 2011
    Yeah I Know what you mean sylvia. My catheter has come out 4 time since last post. Was at hospital today to see specialist isc nurse who after hearing how things have been and that last time i tried to isc the catheter got stuck for an hour and half decided that my only option is a spc. Now awaiting appointment with consultant with recomendation of spc. Was told however that the consultant would be reluctant to do spc in someone so young but she will have a fight on her hands as i just want to feel better and get my life back. Hope all ok
    Matty
  • Janet August 2011
    Hi Matty
    I cannot see any reason why the consultant would be reluctant to let you have a SPC. IT need not be permanent if for any reason you decided you wanted to go back to ISC for example having a SPC would allow you to do this. I will ask the views of a urologist and let you know if there are any contra indications of someone of your age
    Janet
  • gibsil August 2011
    Hi Janet

    Came back from my annual visit to the Urologist today and feeling down as there is nothing else can be done as the muscles in my bladder have completely gone, that was the result of my urodynamic test that I had done earlier this year, so it looks like continuing to ISC, but he did offer me the alternatives of an indwelling catheter with a bag and I said a definite no, after reading of everybody else,s problems with them, he also offered me one with the valve, which is again an indwelling catheter isn,t it? an
    also like Matty wants an SPC, although I don,t fancy a hole in my stomach, would it make urine pass faster so I might one day be able to use a public toilet and not keep everybody else waiting, also do you still need a lot of catheters to use with it or can you just have a re-usable one and can you go swimming with it, I don,t know if you can answer my questions, I would be grateful if you could and also what are your views on the valve catheter is it worth trying or is there a possibility of it falling out also. He offered me these as I said to him about not being able to use public toilets, aeroplane toilets or even train toilets, so it,s restricting my life as where to go and how long I can hold on or not drink anything if I want a day out. I couldn,t ask him all the questions I wanted to as I don,t think I was there five minutes and you feel youv,e overstepped your time limit, so I would appreciate any answers you might have Janet.
    Thanks
    Also Matty I hope you do get your SPC.

    Sylvia
  • Matty August 2011
    Hi Sylvia
    Sorry to hear you are feeling down and didn't get the time to ask all your questions or get the results you were hoping for. The idea of me having an spc has been bounced about several times over the past 2 years and in all honesty the idea and info I have read on them fills me with dread - infections at entrance site, skin growing over the catheter to make it difficult to change etc but I have it appears for now no further options. When I went from having an indwelling to isc 2 years ago i felt free again, yes using public toilets is a pain but people will just have to wait as you have to do what you have to do and i totally empathise with you about aeroplane and train toilets its hard enough when your not being moved about.
    If it worked for me I would chose isc over an indwelling anyday and if i did need an indwelling i would definitely choose a flip flow over a bag. However urine stills drains incredibly slowly out of a flip flow in my experience but it should allow you the freedom of wearing clothes you want and being more active like swimming.
    As far as i know as spc means i will have anindwelling catheter but inserted into a small hole just above my pubic bone instead of uretheral but as far as i know it it still requires either a flip flow or bag - basically the same system just placed differently and changed by a nurse every 8- 12 weeks depending on the catheter manufacturer.
    It is not for me to advise you as we all have different experiences and problems with catheter use but to prevent further anti biotic resistant infections which are damaging my kidneys and bladder spasms which have caused extensive damage as the balloon passes down my uretha i have no other options open to me right not. Maybe if you were still looking at using catheters yourself then a mitranoff is the way to go? I don't actually know anything about this other than what i have read and was basiclly told they weren't perfomed anymore. As much as i found isc fiddily and frustrating i wish it was something i could go back to. Anyway I hope this helps and someone can explain it better than me. Keep your chin up and hopefully they will find a solution for you,
    I was also thinking about feeling awkward about the time limit on appoinments and not asking questions - would it be possible for you to write to your gp or urologist and ask them to answer them for or is there a nurse who taught u isc that can maybe spend more time discussing and supporting you. In my experience nurses seem to sometimes provide more information than time pressured consultants.
    Best wishes Matty
  • gibsil August 2011
    Hi Matty

    Thanks for your information on SPC I didn,t realise you still had to wear a bag or have a valve with it, I thought you inserted a catheter through the hole made above the pubic bone, it was only on looking this up last night. I think I will continue as I am for the moment and I think the only alternative when I may change my mind would be the valve as I wouldn,t need to carry catheters with me. Youv,e certainly had your amount of problems for one so young and I can understand you being filled with dread about the SPC but I suppose there are a lot of them done and I hope it will work well for you as you have had enough to put up with and with all your infections and now problems with your kidneys. Did you have a lot of problems with the flip-flow catheter and do they block and fall out the same as the indwelling ones can. I would be interested on how you managed with it, as if it came to me having a change of mind I would rather speak with someone who has had first hand knowledge of using one.
    Thanks for giving your time in answering my questions and I wish you good luck and hope your,e not kept waiting much longer.
    All the best
    Sylvia
  • Janet August 2011
    Hi Sylvia
    A Super pubic catheter is an indwelling catheter that is inserted through the skin into the bladder just above the pubic bone. If you need an indwelling catheter a supra pubic(SPC) has many advantages. By using a valve with the catheter the bladder will continue to be used as a reservoir for urine ,so when you release the valve urine is flushed through helping to minimise infection.You do not have to be attached to a drainage system so you have the control when you want to release the valve but is suggested that you do not leave it longer than 4 hours .At night if you are having to get up several times you might prefer to be attached to a night bag drainage system.
    From the brief history you have given me of doing ISC, a SPC should work well for you
    If given the choice most patients would prefer SPC to a urethral catheter.Patients say they find it more comfortable,less obtrusive and sited away from the genital area has the advantage of helping to reduce the problems of ascending infection that occurs with the urethral catheter. SPC size is usually larger than the one used for a urethral catheter although I do not think that this would significantly improve the time it takes to empty the bladder but it can help if there are problems of blocking
    Some patients find the urethral catheter a real turn off when it comes to sexual activity the SPC will overcome this difficulty.
    A SPC need not be permanent should you not get along with it and want to go back to ISC or an alternative it will not be a problem.
    A disadvantage of the SPC . Should the catheter fall out it will need to be replaced within a few hours as the opening into the bladder(not the skin) closes very quickly,this will only be a problem if your nurse has not given you a plan of action. It is very important for you to have a contact person for all times..
    The valve is separate fron the catheter and there are 6 different valves for you to choose from.ASk your nurse to talk to you about catheter valves.
    Please stop worrying yourself about the length of time you spend in the toilet when away from home there can be only one bum on the seat at a time and why can't it be yours. Have you thought of using the Disabled toilet, there you are expected to take a little longer.Disability you know comes in all shapes and sizes and an added bonus Disabled WC's are always clean.
    I understand that you can feel hurried when you have your consultation with the consultant particlarly in the very busy clinics. It is your only opportunity to inform your consultant of the problems you are experiencing so listening to you is important to him. It can help if you get your thoughts together before your turn or by making a note of the important points that you don't want to forget because you are feeling hurried ,you are important to him.
    I hope that you will get a response from someone using a SPC

    Janet
  • gibsil August 2011
    Hi Janet

    Thankyou very much for your informative reply. When I went to see the urologist on Wednesday, I did ask what alternatives there were to ISC and those were the choices available for me also it was really to find out as well, when the day comes that I may no longer be able to ISC through ill health or age related problems. The SPC is something I would like to hear from a user and how they manage also about the problems they may have had with it. With the flip-flow catheter does it still have to have a piece of tubing which is strapped to your leg as it does sound a better alternative if it doesn,t have the problems of an indwelling catheter, so I would also like to hear from anyone who uses this method as well. I think with the SPC I couldn,t bear the thought of a hole in my skin, but hearing other peoples experiences might change my mind. I think I really hoped for a miracle that something other than any catheter or some other treatment might have been available, but unfortunately as I said the muscles have gone.
    I still do try to pass urine as much as I can naturally, but I have noticed even in the last year there is less I am passing, luckily though I don,t have to get up in the night, although I did go through a period of this last year, I don,t know why it happened and I had to ISC up to seven times a day, glad that,s stopped. Can someone just invent a new plastic bladder!


    Sylvia
  • DeeNJai August 2011
    There is a support site for people that are looking in to having mitranoff or have one. The web address is http://www.mitrofanoffsupport.co.uk/
    The person who runs it seems very helpful.
    Dee

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