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Thread: Gahhh! Not AGAIN!

  1. #1

    Default Gahhh! Not AGAIN!

    OK, I am getting REALLY fed up of this now, when I finished the THIRD course of antibiotics, within 5 days I am back to burning agony when I bypass, (I ONLY bypass when I have an infection) severe spasms in my abdomen, I mean double me up and make me shout out severe! 5mm+ blood clots in my leg bag, high temperature and a general feeling of being unwell.

    Question is, do I:

    1. shut up and put up until I can get in to see my doc (she's usually booked up weeks in advance!);

    2. Phone District Nurse and see if she can help me;

    3. Phone out of hours doctors and see if a doctor will come out and see me today. (It is now 18:20 UK time)

    The spasms are outrageous and cause me severe pain not just when my abdomen is spasming, but constantly because I'm straining muscles that don't normally get used much.... I have pain in my whole abdomen and back area, so I think it may have developed into a kidney infection as it has not really been cured since it started weeks and weeks ago.

  2. #2

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    i would call a doctor.

    also i have a question

    do you have issues voiding on your own ?

    the only reason i ask is if you dont it seems diapers would be a bit better solution then getting all these infections :\ i would kill my self if i always had infections :| i relize there is a certian pride to not wearing them and it seems a bit embaressing but ya :\ just a thought. and i relize you didnt come here for info on diapers you came here for info on IC but that is just a thought i had in my mind.

    but in all honesty i would do either 2 or 3 it sounds rather serious :\



    The only reason i suggest diapers is because catheters cause you nothing but trouble :| or thats wat it seems from my point of view
    Last edited by PaSS; 10-May-2013 at 22:39.

  3. #3

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    Quote Originally Posted by PaSS View Post
    i would call a doctor.

    also i have a question

    do you have issues voiding on your own ?

    the only reason i ask is if you dont it seems diapers would be a bit better solution then getting all these infections :\ i would kill my self if i always had infections :| i relize there is a certian pride to not wearing them and it seems a bit embaressing but ya :\ just a thought. and i relize you didnt come here for info on diapers you came here for info on IC but that is just a thought i had in my mind.

    but in all honesty i would do either 2 or 3 it sounds rather serious :\



    The only reason i suggest diapers is because catheters cause you nothing but trouble :| or thats wat it seems from my point of view
    Hi PaSS,

    I cannot void on demand, my nerves are kaput, so my bladder just fills and fills until it snaps back like an elastic band forcing the pee out at quite a rate (too fast to soak into my tena comfort supers, meaning I ALWAYS leaked out the sides) Consultant filled up my bladder in the bladder screening and function test I had done at Walsall and it got to 800ml and was STILL filling up without giving me any signs that my bladder "was fit to bursting."....

    So I do suffer with a kind of retention, as well as incontinence, hence the need for a permanent urethral catheter.

    I have a question about the suprapubic one.... will ask later on

  4. #4

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    Hi CaptainVimes,

    I'd definately give your district nurse a call. Because your problems sound a bit worrying to me.
    Take care
    Cp88

  5. #5

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    I've read about different products or methods of urology based things. There's things out there to make things less of a struggle. Including stents in the bladder to allow it to flow freely or to flow with a switch.

    You could be having kidney problems. Usually back pain can be confused with kidney problems. Back flow of urine can actually be dangerous and I'm surprised that your doctor hasn't addressed it before it gotten worse.

    If I were you I would have a change of doctors because this doctor seems to be doing nothing after reading your posts over time.

    There are so many better ways of dealing with this problem of yours that this doctor of yours can be doing. Usually pain is enough of a reason to know something is wrong.

    Talk to a (new) doctor about alternate procedures to help you live a more normal comfortable life. Living in constant pain is just terrible and I hope that you can get away from all the agony that you are going through.
    Last edited by MeTaLMaNN1983; 11-May-2013 at 01:23.

  6. #6

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    Vimes,

    If you get the constant infections - you maybe really need to look into different options besides the foley cath.
    Seriously, blood clotting in the leg bag?? look at it like you'd want - but that ain't no good.

    Again, I think maybe a suprapubic cath would be a better option for you?

    or maybe try the tena Maxi pads or abir pads (they have better leak-guards)
    Also, as suggested, try the fix-pants thing - or as a last resort: plastic pants (I'd go with PU pants)... personally: I hate those plastic pant things... but hell of a lot better than bloody uti's every week...

    Also see a different doc... I mean, seriously, no doc should basically ignore infections like this and just try to "cure" them with Antibiotics.

    Maybe switch to Self cathing? Like do it every hour or two - to prevent the pressure from building up at all to that rate (800ml) - but without the permanent cath in there?


    As a very last resort, there might be some surgery you can do?
    sphincterotomy?
    Botox?
    Check out this: Bladder Sphincter Dysnergia
    IMPORTANT: talk to a doc about options - besides permanent cath.

  7. #7

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    ok i am just gonna say this i feel that we are just as much irritated with your situation as you are at this point LOL

  8. #8

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    Quote Originally Posted by EPO1 View Post
    Vimes,

    If you get the constant infections - you maybe really need to look into different options besides the foley cath.
    Seriously, blood clotting in the leg bag?? look at it like you'd want - but that ain't no good.
    I agree that it cannot be any good. I have had blood trace in my urine for a couple of years, they have done a bladder camera and kidney ultrasound but found no obvious reason why. YET, these blood clots are bigger than I have ever seen, each time the infection rears its ugly head, I get blood clots in my leg bag.

    The first time this infection attacked I didn't have my catheter, she fitted it THE DAY AFTER I finished the course of antibiotics, I did tell her about my infection, but she said that as I didn't have symptoms and because I had finished the antibiotics, it would be fine.

    I'm guessing that it wasn't? Every time my urine goes off to be tested, (after the first infection) it comes back and one of the doctors reports "on correct treatment" so it is the same strain each time. One other thing to note, I have had to be much more careful with my cleaning up after a number two accident, as doc said bacteria from the back passage was found in sample two. I felt so dirty and embarrassed!



    Quote Originally Posted by EPO1 View Post
    Again, I think maybe a suprapubic cath would be a better option for you?
    I have two questions about that.

    1. I have quite a gut overhang because I am currently way too fat for my frame, I read on a couple of sites that it would be difficult to fit with someone who is overweight due to it just being above the pubic line, (hence the name I guess) so I am guessing it would be a no-no for me? My caesarian scar keeps getting sore and nasty due to my gut overhang and I am guessing that is where the suprapubic catheter would be situated? (Sorry for TMI)

    2. Unless I have a UTI, the catheter does a brilliant job of stopping me leak from my bladder, obviously the balloon stops any urine from escaping. With a suprapubic catheter, do they do anything with the bladder sphincter to stop it from leaking involuntarily, or do I just have to hope the suprapubic cath drains me before it gets to the stage where the sphincter gives way?

    Reason I am asking is because I don't seem to properly drain my bladder overnight, I guess gravity doesn't allow it to drain properly, so when I sit up, within 20 minutes my bladder drains about 650-700ml into the leg bag/night bag.

    If I didn't have the catheter balloon insitu, that would have all been squished out into my 600ml pad and subsequently all over my chair. (I sleep downstairs on my riser/recliner chair) I guess the answer to that would be not to sleep in an almost flat position, but to sleep with the back of the chair raised more.



    Quote Originally Posted by EPO1 View Post
    or maybe try the tena Maxi pads or abir pads (they have better leak-guards)
    Also, as suggested, try the fix-pants thing - or as a last resort: plastic pants (I'd go with PU pants)... personally: I hate those plastic pant things... but hell of a lot better than bloody uti's every week...
    Pads just are not a viable option for me, I would rather have surgery than wet/soil a pad, seriously.

    I am on the massive waiting list for a continence assessment with the district nurse to change my urinary pads to fecal pads, (apparently the fecal pads are completely different and there's an extra wedge that goes into the fecal pad that can be changed, instead of wearing multiple pads throughout the day?) as they said I should be having the fecal pads not the urinary pads now I have fecal incontinence to some extent too.



    Quote Originally Posted by EPO1 View Post
    Also see a different doc... I mean, seriously, no doc should basically ignore infections like this and just try to "cure" them with Antibiotics.
    She put a note on the system that she wanted to see me straight after the last course of antibiotics but I just cannot get in to see her, she's so popular I usually have to wait a couple of weeks, unless I book in as an urgent appointment.



    Quote Originally Posted by EPO1 View Post
    Maybe switch to Self cathing? Like do it every hour or two - to prevent the pressure from building up at all to that rate (800ml) - but without the permanent cath in there?
    Mr Alenaqa (the consultant who did the bladder screening function thingy) said that self-cathing was not an option for me with my mobility problems and the fact that I cannot control my hands very well most of the time, plus there's the fact that I have a VERY deep urethra, the Consultant said that this would make it VERY difficult to self-cath, and it would also be very difficult for Si to do it instead. (the district nurses have even struggled quite a bit to put the permanent catheters in)




    Quote Originally Posted by EPO1 View Post
    As a very last resort, there might be some surgery you can do?
    sphincterotomy?
    Botox?
    Check out this: Bladder Sphincter Dysnergia
    IMPORTANT: talk to a doc about options - besides permanent cath.
    The main problem is that the nerves to the bladder are practically dead, so my bladder isn't telling me when it is nearly full, my brain then cannot tell my bladder to contract, so prior to my catheter the bladder was stretching bigger and bigger over time, this is why the Consultant said a urethra catheter should be fitted, to stop the vicious circle of my bladder ever expanding, then snapping back like an elastic band and forcing the urine out so fast the sphincter just cannot cope.

    I can't pee on demand, even with 500ml in my bladder, because my brain isn't able to tell my bladder to contract.

    So I guess I have a kind of retention as well as incontinence.

    I will go and have a look at the link you sent now.

    We don't know if my nerves are dead because of my degenerative disc disease, fibromyalgia or ME, it is still being whispered that I could have MS after all. (mri and lumbar puncture in 2007 came back "normal", it is only later MRI's that have shown DDD)

  9. #9

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    Vimes,

    I try to answer from what I know - I'm not a doctor mind you... I've worked as a paramedic for some time - but most of what I know about Incontinence comes from my life long issues with it...
    I'm just saying, I don't know your exact situation, neither can I give you a perfect solution - as much as I wish I could... so whatever I write, take your doctors advice over mine - ok?

    Anyhow:
    Blood... it can be hard to trace the "origin" of the problem if there isn't much of a visible internal damage... but keep insisting that they try to find the REASON and not JUST A REMEDY.
    Same goes for the constant infections, it's important to find the reason and not just a remedy...
    At one point you'll run out of well working antibiotics - especially if it's the same bacteria all over again. When that happens (Antibiotics resistant stuff) - you're in more trouble than you'd care for.
    So it's important to keep trying to find the REASON / the source-problem for the infections.
    And in the mean time it's important to do EVERYTHING possible to keep the infections to an absolute minimum.

    suprapubic and overhangig gut.. can be an issue - but this is for your doc to decide....
    basically it works similar to a urethra cath - but it will be less effective when lying down.
    And no - it doesn't block the sphincter - that often is seen as an advantage as the person doesn't loose the ability to void "normally" (but in your case that's not an issue, as you are not having the control in the first place)...
    however usually for long term wearing, the suprapubic cath has the advantage of offering far less (but not none) chances for infections - and it's easier to keep clean, as it's not in such a bacteria-exposed region.
    None the less, like any medical solution it's not for everyone for a multitude of reasons.
    What it would do is basically take good care of the "over-pressure" problem... if your sphincter "works" (keeps closed) - then you shouldn't get any "leaks" ... however of course if the sphincter doesn't close properly or "jerks open" then you'll have at least a partial accident... as most of the bladders content would have been drained through the cath though, usually a thin pad is all that's needed to take care of those issues.

    Fecal Incontinence and cathing: it's basically a worst case scenario.... it's unfortunately one of these combinations, that even if you don't wear a cath, especially with women, creates a much higher risk for UTI and other infections. (remember when you clean up after a No2. to wipe from front to back - never from back to front - this way you're less prone to get the bacteria closer to the vagina, and thus close to the urethra.
    Make sure you stay very very clean - What I can recommend, if you don't have one already: get a bidet (they're available as an individual unit or as a toilet-seat installation)...
    The bidet allows you to easily clean yourself with water without much of an effort - it's a LOT more hygienic and a LOT cleaner than relying to toilet paper and wet-wipes.
    This is one thing that is rarely recommended by doctors - don't know why... but it can make a hell of a difference if you're prone to get UTIs, especially if you wear a cath.

    The other thing is "controversial" - cleaning the cath / area... get an appropriate antiseptic solution (mild antiseptic for mucous membranes) and once in a while clean the cath - up to close to the point where it goes into the urethra.
    Now you have to be aware that by using too much antiseptic stuff, bacteria can actually become more RESISTANT! ... this is a risk... however - I'd say that especially if you just had an infection, at least for a few days it wouldn't hurt to take extra good care.

    The sphincterotomy:
    Well you'll be basically incontinent after this - it renders the thing basically useless.
    Done usually if you can't void on your own and cathing isn't an option.
    Consider it as a "last resort"... and you'd have to wear pads or diapers.
    now well, I'm aware that wetting pads/diapers isn't what you're hoping for - and trust me, I understand (I well wish I'd be rid of my incontinence for good)...
    However with your background & issues I thing it's by FAR the lesser of two evils. I mean, common - constant UTIs - with blood and other problems... the risk from permanent cathing, etc.. I don't think it's worth it. also with the sphincter basically partially unable to "close" you'd more like "dribble" and virtually never "flood"... this way the IC would be far easier to manage successfully with absorbent products...
    With the Fecal IC in mind, cathing causing you already so many problems - maybe that's an option to consider.
    Again, as I don't know your entire medical history - this is really something you need to talk to the Doc about.


    Last but not least... I've seen countless specialists in regards of my IC issues (unfortunately so far not much can be done).
    But the one thing I got away from all this: there are good, ok, so-so and really bad ones out there (urologists / continence nurses / etc.).
    It can never hurt to get a second or tertiary opinion on your medical matters - especially in severe cases with a lot of side-problems.
    Sometimes consulting a different urologist can open up new venues...
    that's the reason why I still care to see them once every two years or so... maybe somewhere down the road, there will be a new option to try.

    And last but not least: at least for myself... I take pads / pants / diapers ANY time over a Cath... the risk of permanent cathing would be deal breaker for me in 98% of the plausible scenarios.

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