Catheter Removal

DaveTX
DaveTX Member Posts: 19 Member
edited December 2023 in Prostate Cancer #1

Any of you that had RP do the catheter removal at home? If you did, any learnings you can share? My option, home or back at MDA. They taught my wife and me how to do it with both a video and hands on another catheter. Thought I see what others did before I schedule an appointment for this Friday,

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 949 Member

    Hi,

    I let the Urologist pull mine just incase there was an issue. I know they pull lots of them so I wanted their professional opinion when they pulled it that everything appeared normal.

    Dave 3+4

  • DaveTX
    DaveTX Member Posts: 19 Member

    Thanks Clevelandguy, I feel as you do. My wife and I have no experience and I'm concerned with the "what if". Was checking to see if I was being overly cautious.

  • On_A_Journey
    On_A_Journey Member Posts: 87 Member
    edited December 2023 #4

    I don't want to scare anyone here, but in my humble opinion, catheter removal is the absolute worst feeling in the world!

    I hate it so much, I would reconsider any future surgery that would require it during the recovery period - or demand to be anaesthetized to get it removed. I don't want to experience it awake ever again.

    The only way I would do it at home is if I was extremely drunk and full of prescribed narcotics, then maybe I would tug it a bit at a time over several hours.

    I know that sounds weak, but it's just me. I've had a horrible time with things going up there over the years, from my first cystoscopy which was done under anaesthetic many years ago to look for polyps in my bladder after having an infection, which, although I didn't experience pain, resulted in me peeing like I had a snake's tongue for years after (sometimes messy...). After my RP I had a hard time with my catheter in hospital (I was overflowing AROUND it) and the nurses decided to re-seat it to see if it would fix the problem. Barely. Despite still having some painkillers on board, I was also at my mental nadir, and this procedure felt like a giant nerve had been struck. It was the absolute worst acute pain I'd felt up to then. I made up my mind - never again.

    Turns out that I took the catheter home (as expected) but I had it in me for three bloody weeks! My urologist went on holidays two days after my surgery and didn't want anyone to remove it in his absence because he wanted to eyewitness my first catheter-free flow test. After that length of time, it was physically difficult to remove. More excruciating pain! WTF had I done to deserve this, I thought. And, more forked tongue peeing afterwards.

    Fast forward eight years and it was time to get my worsening incontinence dealt with, so I had an ATOMS sling fitted in August this year. A couple of weeks prior, as part of the pre-op procedure, I had to get a cystoscopy! My (different) urologist suggested that it would be done under a local anaesthetic. No worries, I had no aware memories of my last one I thought, and it couldn't be as bad as a catheter, could it? Wrong! The local anaesthetic did SFA, and it was a horrible day.

    So, then I had the surgery which required an overnight stay only, and I was kitted up with a catheter. OMFG, can life get any worse? I was dreading its removal and was already aware that my urethra was restricted by the sling. In engineering terms, the catheter was more of an 'interference fit' than ever before. So the nurse began removing it, I was literally white-knuckle digging into the mattress and gritting my teeth to the point of breaking them, and she says - "Relax! I can't remove it if you're tensing up!" She's trying to drag a mains pipe through the eye of the needle, and she wants me to relax??? 😵

    Never again. Not awake, anyway.

  • lighterwood67
    lighterwood67 Member Posts: 374 Member
    edited December 2023 #5

    "The Nurse" and that is what they called her. Mr Richards try to relax and don't tense up (I think she was kidding). I had some Depends with me and she removed the catheter. No way I would have even considered removing the catheter myself. If there would have been an issue, I was right there with the folks who could help me the most and who actually did the surgery.

  • Clevelandguy
    Clevelandguy Member Posts: 949 Member

    Hi,

    My “pull” was not that bad, just a little uncomfortable. As lighterwood said I also took a diaper with me cause at least in my case I leaked pretty bad for a few days after the pull. The worse part for me was when they pulled the drain out of my side in the hospital before I was released, it felt like they were pulling my insides out with it. Very weird feeling for a 61 yr. old surgery first timer.

    Good luck……….

    Dave 3+4

  • centralPA
    centralPA Member Posts: 209 Member

    I’ve had two catheters, one after surgery so I slept through that insertion, the other in the ER following a bout of urinary retention. That one was the best feeling ever. 😀 Blessed relief.

    Having had two pulled, I’d have no hesitation to do it myself. You cut the one line and make sure all of the fluid goes out of the bulb, then just pull steadily on that bad boy. Out she goes!

    Good training video… https://m.youtube.com/watch?v=uLYZbvts9AA

  • DaveTX
    DaveTX Member Posts: 19 Member

    So sorry to hear about your experiences. Three weeks is a long time!

  • DaveTX
    DaveTX Member Posts: 19 Member

    Thanks everyone, your responses and experiences helped. Most of you agreed with my feelings; the experts put it in, have them take it out. If something goes wrong or there is some type of an issue they know what to do.... And can do it right there. Contacted my Care Team through my portal and my appointment on the portal for this Friday.

  • Old Salt
    Old Salt Member Posts: 1,261 Member

    Good decision!

  • Josephg
    Josephg Member Posts: 368 Member

    I have to say that the removal on my catheter was a complete nothing burger. No issue, no pain, and it took just a few seconds at most.

    I had it done at the Doctor's office with the mindset that they put it in, so they should also take it out. Also, my catheter was in place for 10+ days longer than normal, due to the urethra reconnection healing not yet being complete within the standard number of days.

    I recognize that everybody's experience can be different, but I wanted to include an opinion in this thread from someone who had absolutely no issues whatsoever with the catheter removal process.

  • Tico14
    Tico14 Member Posts: 35 Member

    I've never heard of anyone having problems with a catheter removal until recently and then happened on this Discussion only to discover while rare it does happen and more often that I had ever thought.

    First off, I never had problems with my removal, the nurse who performed it probably does them 20 - 30 times a day was excellent. She sensed my apprehension and told my to lie back on the exam table and cough. I did. And it was all over. Total time, maybe 1/2 second.

    A close friend experienced the exact opposite this past week. He's been wearing a catheter off and on (mostly on) for the past NINE MONTHS (long story). He changes the bag as needed and goes to the doctor's office twice a month to have the catheter changed. This time, the nurse couldn't get it out. She called in another nurse to assist, with the same results. He ended up with the two nurses, his doctor and another doctor in the room all trying to remove it. They ended up inserting two small wires trying to untangle whatever they were trying to untangle and finally got it out. Estimated total time just under an hour. He said the pain was the worst he has ever experienced. Then, he had to have a catheter reinserted pending surgery in a date TBD.

    If he had known what was going to happen he would have asked for heavy sedation or surgery before he would knowingly volunteer to put himself through what he went through.

    I'd have anesthetized myself with a hammer first.

  • DaveTX
    DaveTX Member Posts: 19 Member

    Thanks for the feedback. Your thoughts are the same as mine, they put it in let them take it out plus they have infinite more experience doing it better my wife and me. I figure it should be relatively easy if they prep us to do it ourselves. I just want to cover the risk in case something goes wrong that we couldn't handle at home.

  • Rob.Ski
    Rob.Ski Member Posts: 136 Member

    I pulled mine at home. Took a second to get up the nerve but, wasn't too bad. A few seconds of discomfort. Did it in the shower to avoid any mess. What a relief to get that out.

  • On_A_Journey
    On_A_Journey Member Posts: 87 Member

    Just goes to show, we all have different tolerances to different things. Kudos to those who have no troubles with their catheter removal. I'd rather have leg amputated!

  • DaveTX
    DaveTX Member Posts: 19 Member

    Update - went back to MDA for the pull by a urinary nurse and, as most have stated, a few seconds of discomfort.