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Catheters,Drugs and Operation times

Posted , 17 users are following.

johnthompson
johnthompson

Hi all,

Firstly a big thanks to all those posting stories on here.I have spent two days reading up and there are some very brave people who i wish only the very best for.

I am wondering if anyone can help me.I am very very depressed over things at the moment to the point even of wondering if i can carry on.

For the past year or so on occasions my bladder seemed to have felt a burning sensation that would keep me awake some nights all night.Docs though over active bladder or prostate.Few weeks back the stream became very poor so they put me on Tamulosin.4 days later the stream became strong again which was great but a month later it eased off back to the way it was but doc has kept me on it.Late last week though bladder cramps got very painful and saw a doc who put me on Oxybutynin to ease them.As the weekend progressed it did not help them monday night i realised i could not pee at all! I ended up at A&E who put a catheter in and kept me overnight.

I am 44 and have been sent home with the catheter on and feel totally lost over it.My gf is very supportive but just feel this will end things.I have to go back to the trial without catheter clinic next thursday and Urologist suspects prostate even though he says i am to young.I did have it measured about 6 months back and was only 25g which is nothing compared to many here but symptoms have got far worse over the past month.

All in all urinary issues have gone on about 2 years but did anyone else juust suddenly hit a quick time where they got retention and also did were they able to pee after having the catheter out?I will have had it in about 9 days when i get seen.

Also in the UK does anyone know the length of wait for NHS prostate surgery roughly because i fear if i have to be catheterised again long term its going to push me over the edge as i have shut myself away.

I am so sorry sounding rather dramatic but i am just so scared and all this has come as a huge sudden shock.

0 likes, 164 replies

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  • cartoonman
    cartoonman johnthompson

    Posted

    (Just a brief quick response; others will offer more, for sure!)  

    Being unable to pee is disorienting and disheartening!  Wearing a bag is disorienting and disheartening!  I would STRONGLY urge you to considered learning intermittent self-catheterizing.  You are in charge with this, it's easy to learn, and... no bag!  And less pressure on the relationship too!  SpeediCath or Magic 3 are brands recommened on this forum.  And we can provide details for easier use than a nurse will teach you. 

    Those drugs are famous for showing great results for a very short time.  I had the same experience.  

    I imagine the small size of your prostate could be a contributing factor to your problems, closing in on the bladder neck and shutting it down.

    Also, and this is just an educated guess here, but the "bladder cramps" could be the reaction to urine retention, and the bladder being over-stretched.  The bladder is "designed" to request emptying at about 300cc.  If you can't empty, you are likely retaining much more than that.  When I had that, two years ago, my bladder was holding 2.5 LITERS!  There are tests to determine your flow rates and also your retention rate (after voiding).  This is information you, and the doctor need to have.  

    Many of us have had to take our care into our own hands, as the uro-docs, both in the UK and here in the US, tend to have rather narrow focusses and offer limited treatments that are more damaging to the patient than should happen to anyone.  It will behoove you to learn as much as you can about your situation, and about your options. 

    • johnthompson
      johnthompson cartoonman

      Posted

      Thank you so much Cartoonman for taking the time to post that.Indeed i am wondering now if it could be retention causing the spasms.I did a voiding test about 6 months ago and they said i had about 125ml left in after voiding but i thought i was totally empty but it has been increasingly getting worse.

      How painful is self catheterisation to do?The catheter hurt like hell being put in and cant see me being able to do that but do wonder how folk are able to.I do have a Urodynamics test being booked for about 6 weeks time but i just want to get this damn bag away from me as i feel a prisoner.

    • arlington
      arlington johnthompson

      Posted

      self cath takes 5 minutes to learn and is much, much less painful than when someone else does it
    • Supertractorman
      Supertractorman johnthompson

      Posted

      One thing I forgot to mention is that you can get a catheter without a bag that has only a tap on it, so that if you feel the urge to go you go like normal and at night you put the bag on while in bed. It would not work for me as it created a vacuum when the last drop came out and was painful, but some folks like it. This can also prove if you are likely to be successful when the catheter comes out. Ask your District Nurse they have a host of knowledge on this normally.
    • cartoonman
      cartoonman johnthompson

      Posted

      Hi John,

      When done right, cathing doesn't hurt.  The Serbian nurse who did my first cath I swear I knew in a former life, when she worked for the SPANISH INQUISITION!!!  And yes, what she did was painful!  :-0   Since then I have learned easy, gentle ways to use catheters myself.  Do NOT repeat NOT EVER accept those awful red rubber ones!!!!!!!!!!!  Urodocs use them for one reason:  they are CHEAP!  But they hurt going in and out!  The ones I mention above are painless when used properly.  And we can give you easier ways to do it, once you have been taught the "correct" ways!  :-)  Seriously.

    • NBCP
      NBCP cartoonman

      Posted

      it may be median valve as it shuts the urethra in normal size prostate as it acts a a valve and even when it is not shutting the urethra it stands erect to block the movement of urine into the urethra leaving post void residual and when bladder is over extended it exert pressure on the valve and shuts it tighter and flow slows even more.
  • david41064
    david41064 johnthompson

    Posted

    I feel for you John.  First off avoid all alcohol and caffeine.  Do not even take one sip.  See if that helps.  If not, levaquin is a very effective drug for prostate infections.  It does have some side effects namely weakness and pain in tendons if taken for more than 30 days.  If you go on it do not do jumping sports as it can cause problems with the achilles.  Hope this helps.
    • johnthompson
      johnthompson david41064

      Posted

      Thank you so much for posting David . I stopped caffeine a few months back and apart from the odd decaf coffee i drink redbush or water although have fallen off the wagon a few times with a fizzy drink.Hardly touch alcohol.I will write that name down for the medication.Thank you.
  • Supertractorman
    Supertractorman johnthompson

    Posted

    Sorry John to hear of your problems but a catheter is not the end of the world and they will not keep you on it longer than necessary. I have had them numerous times and it is better than not being able to go. The last time I had to have a TURP because they could not even get a small catheter in and it has left me with other problems and they are still working on them.  If you have to have surgery urgently on the NHS they will get on with it, but hope surgery is a last resort. I tend to think in the Wards and the Waiting Rooms there are others worse than me, and my thoughts are that I can beat the problems and get back to near normal life and whilst I have Cancer the bugger has not caught me yet.  Think you gf will be more understanding than you think.
    • johnthompson
      johnthompson Supertractorman

      Posted

      Thank you so much supertractorman for your post.I just feel they will take the bag out and i wont pee then another bag on and so on.I am worried sick about it but i think it is down to the fact i have had ME 20 years but also was put on Citalopram for depression for a while and this ruined getting an erection to the point i had to inject myself and even then that did not work all the time.Only now in the past 3 months has with the help of Cialis things come back and just as i have now been able to be intimate i just feel so low this has happened and is stopping me being intimate.And of course you look on google and everything you find online seems to point to Cancer or a catheter for life! But very wise words you posted Sir and cant thank you enough for them.
    • nealpros
      nealpros johnthompson

      Posted

      I know that you have a number of problems now, and what you need is hope, so I can give you some.

      For your impotence, you can get a penile implant. I have one, and they are wonderful. With one of these, you get an erection when you want one, and it lasts for as long as you want it to last. Yes, it involves surgery, but it is worth it. Your GF will love it too. Search on the web for blogs that provide "penile implant info".

      For your other problems, you haven't told us what tests you have had and their results, so it is difficult for us to provide much help. The symptoms that you have could be caused by any number of things, such as a urinary tract infection (easily tested for and easily cured), prostititus (hard to detect and frequently difficult to cure), to prostate cancer (easy to detect with a 3T MRI and usually easy to cure if caught early), stones in bladder or prostate or kidney or ureter (easy to find and cure), and, of course, a number of other things. The point is, you need to get yourself to someone who will do the testing, give you a real diagnosis instead of just working on your symptoms (difficulty urinating, and pain), and then fix it. The bottom line is most of these things are cureable, if very unpleasant. Meanwhile, learn how to self-cath, as others have suggested. That will give you the time to read the posts here and elsewhere so you can become knowledgeable, so you can deal with the damn doctors from a position of knowing what the hell is going on, and when they are BSing you.

      Neal

  • Denknee
    Denknee johnthompson

    Posted

    Hi John...

    Hang in there man, it will get better for you. I can say that because I have experienced everything you have and more.

    Like you my prostate problems started at 45 (I'm now 64.) I was still able to void pretty well at that age. However, my stream was not strong and it started and stopped. It was a few years later I was put on prostate meds. The big scare was a high PSA of 15. I was convinced I had prostate cancer, I went threw a biopsy and it was negative. There were another 4 biopsies over the years all negative, this was after my PSA plateaued at 20. Like you there were several times I headed to urgent care and had a catheter put in after I could not void. I am not going to go into all those details as you can review my previous posts here. When I had my Turp, the tissue or chips were negative for prostate cancer. I can now void well at my age, I was not left incontinent and the really big surprise was I was not left with retrograde ejaculations. Also I'm off all prostate meds.

    There has been other drama in my life. Mutpile Sclerosis, a divorce, lost my hotel and bankruptcy. If I can survive what life has dealt me so can you. Right now I'm having the time of my life. I volunteer for The Salvation Army, helping the homeless and have a ministry for inmates. It takes my mind off my troubles and when I find I have helped someone it is such a gratification it is hard to explain.

    God's Peace and Love, Denis

    • johnthompson
      johnthompson Denknee

      Posted

      Denknee thank you so much for that.What an inspiration you are Sir!!! I lost everything to ME and even at moment am having to live with relatives until i can work again.I volunteer too as i want to help others and i agree its a wonderful feeling doing something for others.I hesitated to post today as i prefer to help others than ask myself for help but just one of those times when you have to hold out a hand.
  • arlington
    arlington johnthompson

    Posted

    Did the MRI or CTSCAN show that you have a large median lobe?  This can cause your problems even in the absence of an enlarged prostate.
    • johnthompson
      johnthompson arlington

      Posted

      Hi arlington,they only did a CT and just said everything looked fine....doesnt help a lot does it :-(
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