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Greenlight prostate surgery

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vaughn43529
vaughn43529

I am having greenlight surgery in 4 days. In August I was admitted to hospital with severe Sepsis due to a UTI.

I spent 3 days hooked up to IV's and antibiotic drips. Could not pee and was straight Cathed Then the nurses taught me how to do it myself so I could go home

Did it 3 times a day for 6 weeks then I got a severe bladder infection. I went to the ER and They put in an irrigation catheter in. Hurt like he!!. It is still in and is the most irritating thing I have ever had.

I am trying to go about my day but it is irritating the skin on my penis where it comes out of my underware. At night I sleep naked with the night bag like when I was in the hospital. Dred morning when I put clothes on and irritate it again moving around.

I wish they would of taken out the huge cath and put in the 16 Foley .

The trama was inserting the irrigating cath.. I was in so much pain that night I just wanted it over.

After they remove the cath post surgery how do you control your bladder.

It will be 2 weeks with indwelling cath

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  • stebrunner
    stebrunner vaughn43529

    Posted

    Hi, Vaughn,

    Not sure what instruction they gave you when they sent you home with in indwelling cath, but I was told to clean the head of my penis with soap and water 2 times a day. And to smear water-based lubricant, like K-Y, on the catheter and around my penis opening to keep irritation down from the tube sliding in and out.

    Did they give you a catheter stabilization device for your leg? It also helps reduce pulling on the catheter when you are up and moving around. Living with an indwelling Foley catheter is the pits. I had them in for 3 months after my AUR last December.

    I'm now self cathing 5 times a day to help rehab my bladder. It also helps keep UTIs down as I'm not storing much urine in my bladder. I'm also taking D-Mannose, a suppliment made from blueberry and cranberry sugars and haven't had a UTI in 2 months. My last UTI was right after I had a PAE done.

    I'm very happy with my PAE as it has stopped my prostate growth and made self cathing easier. My problem is twofold--prostate blocking my urethra and weak bladder tone. The PAE has allowed me to pee some on my own now. Hoping to rehab my bladder tone with a technique written about by Jimjames on another thread on this web site.

    During my last UTI they put a Foley in for a week. I requested a FR 14 Foley as I knew there weren't blot clots to worry about. My PA didn't want to do that--she wanted a 18 or larger, and she was surprised by how easily the 14 went in. Smaller catheters are more flexible, and having a 14 in for the week was much more comfortable.

    Wishing you a speedy recovery and the best of luck with your GL!

    Stebrunner 

    • Jezzaman
      Jezzaman stebrunner

      Posted

      Hi Stebrunner, you say you have had a PAE, as have I.

      Can you tell me more about this please. It doesnt sound like it was a success if you are having to self cath? Where was it done and where etc?

      Id be grateful for any feedback.

      thanks

      Jeremy

    • Howard31850
      Howard31850 Jezzaman

      Posted

      Hi Jeremy - I noticed you asked about PAE so just wanted to tell you about mine. I had my PAE 2 months ago at UNC by Dr. Isaacson. He told me I was an ideal candidate for it since I have a very large prostate and no complications like a median lobe or other problems.

      The procedure was textbook perfect with both sides being embolized perfectly. I was released after 2 hours with no pain or discomfort ever.

      But now after 2 months I still have not had any benefit from the PAE and still need to self-cath twice a day. Dr. Isaacson has all but abandoned me and is quite dismissive of my concerns. I think he only considers technical successes and not clinical improvements.

      Anyway I will continue to self-cath through the winter and may consider a nother PAE with Dr.Bagla in the spring. I hear he has done 5 times the number of PAEs and is very patient-friendly. By the way, the PAE set me back about $10K after all expenses but it was worth a try anyway.

      Take care

      Neil

    • Jezzaman
      Jezzaman Howard31850

      Posted

      Hi Neil

      I am very sorry to hear of that. There has been a lot of positive press on patient.info on other threads and little negative. But now there are a few people reporting lack of success and some with complications. Have you been back to see if the prostate has shrunk at all? I have posted my experience on this thread if you look about 2 days ago. I am going to call my consultant but I dont really know what I expect them to say! I have an appt to have my indwelling catheter out but I really think I am going to have to learn to self cath ( I did try it but failed, I was too sqeamish to push in the last inch or so through the prostate I think). I dont have bad symptoms to be honest. up once a night sometimes but not always, frequency not too bad. With me its all or nothing and related to heavy drinking it appears!

    • kenneth1955
      kenneth1955 Jezzaman

      Posted

      First of all slow down on the drinking.  I have a friend that had been doing it for 20 years.  I guest you juat have to get use to it.  Use alot of lube and maybe try a somller size  Try anything just so it will work  Ken
    • Howard31850
      Howard31850 Jezzaman

      Posted

      Hi Jeremy - I did start a thread a short while for failed PAEs:

      https://patient.info/forums/discuss/pae-disappointment-journal-534612

      It seemed there was just too much of a love fest going on among PAE patients and I just did not want to crash their party on their own threads. I  did try to have an MRI last week to see what the status was but the wide bore machine did not boot and I am too claustrophobic for the small one. Anyway, I traveled all the way back to UNC for it and my IR guy would not even meet with me! He only wants to hear about successes which is too bad because PAE is still experimental and will not get approved by the FDA until the IR guys understand the failues too. I will try for another MRI the end of October at another location and will take my wife with me this time and lots if drugs.

      On the self-cath - yes there is a yick factor to get over and I am not quite there yet but we have the best possible teachers right here with jimjames and john and dennis and others. Just stay with it, go very slowly and be careful to keep a clean environment and it will work. I started with speedicath coude tip 12s but they were way too thin and just bunched up with lots of pain and blood - that was a real turn off. With help from this forum I stepped up to 14s and they work better. Also I find that using sterile rubber gloves from the pharmacy give me better control with the slippery pre-lubricated catheters so that might help you. Good luck. Neil

    • Howard31850
      Howard31850 kenneth1955

      Posted

      Hi Ken - I just want to let you know how much I appreciate all your posts - they always have something new and helpful for me to learn from. I keep a library of all your posts and frequently go back and review them for encouragement. Thanks for sharing all your knowledge and taking all the time to post your advice and please keep it coming. All the best to you. Neil
    • Howard31850
      Howard31850

      Posted

      - Oh I forgot to mention one of the self-cath teaching stars - Stebrunner - He is always there to help us.
    • stebrunner
      stebrunner Jezzaman

      Posted

      Hi, Jeremy,

      I can see why you might see my PAE as unsuccessful. Most men with BPH want to pee like they used to before BPH set in, and the 5 urologists I've seen focused on that. They told me that BPH is a plumbing problem (the pipes are restricted) and that their surgery (or drug) will clear the pipes, forgetting that this plumbing system is connected to a human.

      Last December I had extreme AUR, and had 7 liters drained out of my bladder. That's right 7! The uros were amazed my bladder didn't burst. They all told me it's unlikely that I will ever regain bladder function because my bladder has lost its tone (the pump is bad). I completely failed my Urodynamics test last January.

      The uros I've seen all focus on the problem with my pipes--and not on my pump problem. They looked at me blankly when I asked how to rehab my bladder tone. Bladder tone is half my problem--and is just as important as reducing my prostate size. Through this forum I learned it may be possible to rehab my bladder via CIC or self cathing. For more info on that you can read a thread by Jimjames on "Self Catherization an alternative to TURP, Greenlight, HoLEP..."

      Yes, I'd love to pee like I did pre BPH. But I had to come to grips that I will likely have to CIC for the rest of my life. I'm okay with it. The human side of me wants to keep all my sexual function--and CIC and PAE allow for that. I'm not willing to gamble with my sexual function on the slim chance I can pee on my own.

      I consider my PAE successful because it's stopped the growth of my prostate--which was already at 90 gm--and it's made CIC much more comfortable and faster. I'm following Jimjames program for rehabbing my bladder tone. I'm now 3 months post PAE, and I frequently pee weak streams on my own now, and it keeps getting better. My natural void volumes have slowly been increasing as well. I've made more progress than I thought possible! My progress with PAE has not been instantaneous nor linear--but it's been progress.

      Rehabbing my bladder will take time. Jimjames said it took 12 to 18 months to rehab his. He also was told by urologists that he'd never regain bladder function. Yet today, without drugs or surgery, he was able to rehab his bladder. When he started he CICed 6 times per day. He rarely has to CIC now. If I can get to that level, I'd be very happy. BTH, once you learn how to CIC it's not that bad. I thought I would never be able to do it after several very painful Foley installations. But my new uros staff, who are well-trained, and guys on the self cathing thread helped me to succeed.

      My large prostate size--and that I have a large median lobe pressing into the wall of my bladder limited my options for BPH treatments. I narrowed my options down to HoLEP and PAE. I went with PAE because it is less invasive and because it wouldn't affect my sexual function. My PAE was done by Dr. Charles Nutting with RIA Endovascular in Denver, Colorado. My insurance did not cover it. Nutting's fee was $3,000 and hospital fees were $10,000. He embolized both sides of my prostate. I was on the table for 3 hrs and in recovery for 2.

      Hope this helps answer your questions. Let me know if you have more. How are things going with your PAE? When did you have yours done?

      Stebrunner

       

       

    • james87669
      james87669 kenneth1955

      Posted

      Actually it is far better to use a larger size. If having a problem with 14fr use a 16fr etc. as has been my experience and advice from nurses and Doctors.
    • Jezzaman
      Jezzaman stebrunner

      Posted

      HI Stebrunner

      THanks very much for your response.

      That is incredible that you had 7litres in your bladder and are still alive and presumably your kidneys are fully ok?

      I had 2 episodes of AUR. first time I was mis diagnosed and went all weekend with out being drained! On the monday I was in trouble and they drained out 1.3 litres at A&E in the hospital which I thought was bad enough! THis was in August last year!

      I was offered GL laser TURP but refused and got a referral for PAE which was done under a trial at Oxford in UK. That was on Feb 9th this year.

      HOWever, despite the fact my prostate had shrunk by 20% after 3 month check up I have not noticed much if any change at all, as the symptoms were not bad by the time I had the PAE, i had recovered almost completely to my view. However last Friday I went out for my birthday and drank quite a few pints of beer, and by the time I went to bed was pretty much in AUR! I was catheterized on SAturday and have a Foley in right now! I am due to have this out on 11th October, and have my fingers crossed! I have just taken off the leg bag and replaced with a flip flow valve.

      This allows the bladder to fill up and then you empty by just flipping open the tap.Im hoping this will keep my bladder in trim as it were. We sha;ll see,.. Will repoert back nect Tuesday and let you know what happens.

      I tried the self cath last week as I had some speedie caths, but could not manage it. I would like to master it though. Will look for Jim James post.

    • johnclen
      johnclen james87669

      Posted

      I've used a 12, 14, and 16. All work just fine. I've been using a 12 with no problems at all, but the 16 is good too. My urologist and his nurse both recommended the 12, but which every works best is good.

    • stebrunner
      stebrunner Jezzaman

      Posted

      Hi, Jeremy,

      Congrats on celebrating your birthday! But sorry you ended up with AUR again. I, too, ended up with a 2nd AUR. My previous uro's staff did a poor job of training me on CIC, and 4 days later (over the weekend) I ended up in a hospital emergency room for my 2nd AUR. Fortunately they didn't drain 7 litres out on the 2nd one.

      Foley's are miserable IMHO. Had several in for a total of 3 months, and I used to get horrible bladder spasms. I hope this week goes well for you!

      Good on you for getting the flip flow valve. Sounds like a great idea.

      After my 2nd AUR I switched uros, and my current uro's staff is very well trained. They helped me with CIC, but the best help I found was on this forum. Here's the quick link to jimjames thread: https://patient.info/forums/discuss/self-catherization-an-alternative-to-turp-greenlight-holep--336874?order=oldest&page=1 Jim is a great resource for learning about how to CIC, and his story is inspiring. I struggled for several weeks before I got the knack for CIC--thanks to Jim and other guys on that thread.

      Sorry you haven't seen much progress from your PAE. How large was your prostate? Did you have a median lobe? How experienced was your radiologist?

      Stebrunner

    • Jezzaman
      Jezzaman stebrunner

      Posted

      Hi Stebrunner

      THanks for your post. I wore the Flip Flow all yesterday evening then when i went to bed I emptied , but there wasnt much, only 60ml or so!

      So i connected a 1litre night bag on the end of the flip flow and there was 500ml in there this morning! Which ever way  the foley is very uncomfortable to wear at night as well as daytime.

      I am going to stick with flip today and see if i can fill my bladder before emptying. Re my prostate it was 82g, they didnt mention a median lobe. 

      I think I was number 30 or so for PAE as the radiologist was doing it as part of a UK trial.

  • stebrunner
    stebrunner vaughn43529

    Posted

    In my first paragraph that should be smear lubricant on the catheter tube and around the penis opening.
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