I am in shock – the good kind. They did my monthly suprapubic catheter change today and there was virtually no pain! The reason this is so amazing to me is that all my previous changes, except the one done as part of my diagnostic surgery (See my post about that procedure – Results Of My Combined Antegrade And Retrograde Urethrogram) when I was under anesthesia (spinal), have been agonizingly painful.
In-dwelling catheters must be changed every month due to the risk of urinary tract infection. And in my case, I had to go at least 3 months on bladder-rest before they could do the diagnostic surgery. So that meant 3 catheter changes.
The first change was after only a month of having an SP catheter, so two things needed to happen. The catheter size needed to be up-sized from the initial 10fr (“ten-french”) to 14fr. So that involved cutting a larger hole in my gut. The doctor thought THAT would be the only pain. Boy was he wrong. It was a horror-show of pain. My bladder started spasming and it felt like I was birthing an alien. We’re still not sure why that was so painful. But flash-forward one month. The second thing that needed to happen was that they needed to insert a guide wire into my bladder through the SP hole to make sure it didn’t close up, which can happen pretty quickly – a matter of minutes if the hole is only a month old like mine.
For my second SP catheter change, no up-sizing was needed, so the doctor (a different one, who had no memory of all the pain and unpleasantness of before) said it should be painless. But as soon as he dropped the guide wire into my bladder the pain shot through the roof again. And again, there was screaming. This time things went much faster, but still there was a LOT more pain than anyone (except my wife and I) thought there would be. Oh, and in case you’re wondering, the urology clinic is not allowed to administer an IV or any pain meds in their procedure rooms. For that, I would have to have things done in the operating room. Blah, blah, flibbedy-blah and lots of administrative reasons why they could not sedate me. But, the doc said, they COULD five me a shot or two of local anesthesia through the skin and muscle around the hole. I guess he felt like that would make up for not being able to sedate me or give me IV pain meds. But the darned local shot, of which he gave me 3, were REALLY painful. And that area isn’t even where the previous pain had come from. It was INSIDE the bladder that hurt. Sigh. As it turned out, the pain from the shots is what bothered me for days afterward. Gah!
The third change a month later, as I mentioned, was done during a surgery in an O.R. So I didn’t feel it at all. But I was definitely dreading today, the day of my next cath-change.
It didn’t seem to start out well, since they said no doctors would be doing my procedure. And they also asked if I minded if they had a nurse trainee to it. I really did not have a choice. What? No doctor? Aren’t doctors better than nurses? As it turned out they are not. At least in this instance. The nurses were AMAZING. Almost before I knew it – even as I watched – the trainee had sucked out the saline from the Foley balloon (no, not like that sounded – he used a syringe;)), and slid the old catheter out like it was nothing. And I felt nothing (quick “A Chorus Line” reference there; – sorry).
Then we (my wonderful wife always comes with me ad threatens or cajoles on my behalf) asked “didn’t they have to use a guide-wire to prevent the SP hole from closing?” They all very confidently said “No we don’t. It would take like an hour to close up.” Really? What happened to all the warnings that the hole can close in a matter of seconds or minutes? Still though, this was good news. The guide wire is the thing that caused so much pain in the previous two changes. And no wonder. These guide wires look a lot like picture-hanging wire to me. And the tip is pretty poke-y. I don’t know why they don’t make these things with a more rounded so it doesn’t stick the bladder wall. So I was very happy not to need one. Now I just wonder why I needed one the previous month!
Anyway, so the trainee nurse simply sterilized the area and fed the new catheter in. I felt a little pinch of pain when it made contact. But immediately after that, the nurses all reported that it was done (they could see urine flow from it). Wow!!!!! Did I mention WOW!? As in holy crap!?
Now they only had to inject the saline to inflate the balloon on the Foley, which I didn’t feel at all. And I was finished!
I do NOT like pain. I know, few people do. But I am particularly sensitive to it. I’m a pain weenie. So I had been stressing out about the latest changed for days. And because of three nurses doing a job MUCH better than any previous doctor managed to do, all that stress was for nothing.
I already had a high regard for nurses. But now I put them on the same level as doctors (or maybe even higher) on a whole lot of factors.
So I’m good for another month now, and suffered a lot less pain because of some pretty smart and caring nurses.
Next month I’ll have my urethroplasty (end-to-end anastomosis) to fix my urethral stricture, and they’ll move my catheter to the “traditional” location for 4 weeks. I hope they let nurses do all my post-op catheter stuff.
I’ve just had my supra-pubic catheter changed. It is changed every three months. Sometimes there is no pain but this time it was very painful. It was the same nurse as the last time who changed it with no pain at all. It’s a mystery why the pain varies so much.
Stephen – that’s interesting. Yeah, I had mucho pain the first 2 times. I’m pretty sure it was because they said they had to “drop a guide wire” into the hole to prevent it closing up. And that metal wire caused spasms. The 3rd time, a nurse changed it (doctors the 1st 2 times), and he just pulled the old one out and I said, won’t it close up? And he said, meh – yeah, in about 10 or 15 minutes. Then he got the new one and just put it in. I felt a little momentary minor ouch. But that was it! Now it may be that after 3 months, the hole had scarred enough around that it didn’t need the wire, whereas the first couple of months, it was a worry that it might close up within seconds, causing them to need the wire. But yeah, the difference in pain was HUGE. I wonder – did they use a wire that last time and NOT use one the previous time(s)?
Thanks for posting!
Ken
I agree. I take a 5 mg.vallium drug 1.5 hrs. Before nurse changes my size 20catheter. She uses a lot of lidocaine.even with the vallium it still hurts. Neither she nor I know why. I have gone from a size 12 to a size 18 without pain. But going to a size 20 requires me to use a vallium,which makes me drowsy for 1.5 days. What do you think about a Duette”urinary drainage device? Your comments, please. –Jim. Thekat168@yahoo.com
Had my spc changed for the 3rd time today but the 1st two times i was having surgery and just asked it was replaced while I was under.
Jesus Christ I have never ever ever felt pain like it! (I have an spc because a nurse inflated the balloon in my urethra causing no end of pain so I’m used to catheter pain) but this was something else!
The nurse changing it was lovely, she deflated the balloon, I was relaxed and felt a little tug but nothing happened. She then looked me dead in the eye, said ‘I’m so sorry for this” and did an almighty yank. I have never screamed like it.
Bladder stones had formed around my catheter meaning the balloon wasn’t fully deflated.
Terrible experience all round and I’m going to dose myself up on painkillers and try not to cry haha!
Oh I’m so sorry to hear about that, Breeze! I also had problems with the first few changes with terrible pain, and I did end up crying during one or two of them. It was because they were using a “guide wire” to make sure the opening didn’t heal up in the 30 seconds it took after removing the old one to put in the new one. That wire cause bladder spasms that were just terrible. But the 5th month, a nurse did it instead of a doctor and didn’t use a guide wire. They said “oh it won’t heal shot for several minutes.” So they just gently pulled the old one out and put the new one in and just about no pain at all. It was amazing. It got me wondering whether they could have done the same thing for me a lot earlier.
Anyway, I hope you have a better experience next time.
Cheers!
Ken
First sp change today. Oh my goodness… so painful.. thought my “lady bits” were going to explode. It wasn’t the catheter site that hurt but in between my legs… crikey I didn’t expect that. Nor did I expect it to take 3 attempts to get it right. Apparently my anatomy is slightly off kilter. All in all not a pleasant experience
Jakki – Yes! I also found it incredibly painful to have my SP cath changed. I think it was the guide wire they stick in. The 3rd time was much better because they didn’t put in a guide wire, saying the risk of the hole healing up in less than a minute was much less. And guess what? No pain. If you get to the 3rd or 4th month, bring this up.
Best of luck with everything moving forward!
Ken
So if I read these correctly it’s going to hurt like hell. Anxiety here it comes.
John, I had a suprapubic catheter. So if you have a “regular” one, it wouldn’t be an issue. Also, I may have been a non-typical case. The doctors were definitely surprised by the spasms I was experiencing. I think it was all due to the guide wire they used. Since the hole they create in your side where the SPC goes tends to heal up quickly when the catheter is removed, they put a wire in do both prevent it healing up before putting the new one in, and to guide the new one into the bladder. Apparently most people don’t have much discomfort with this. But the first couple of times I had mine changed, my bladder spasmed, which was not fun. Hopefully things will be more “normal” for you. Best of luck!
Initial surgery for spc was local. The pain wasn’t too bad. The tube upsizing a week later was pain beyond which I’ve never experienced before. I swear the local never took effect and the maximum morphine was given to no avail. Those Vietnam movies where the medic injects morphine into the private with missing limbs and he carries on normal conversation is B.S.! Here in Florida the urologist prefers doing spc under general. It allows the urologist to make a larger incision, ensuring a straight shot to the bladder without the patient tensing up when experiencing pain. In my case, when my surgeon replaced the spc tube with a Foley 2 mos. later in Canada , he wasn’t able to get the bulb part into the bladder. Upon injection the bulb was between the bladder and stomach muscles, leaving only a tip in the bladder to drain. Bladder spasms were awful, for which I took Toviaz. Following a cystoscopy under general, the Foley was properly inserted and quality of life greatly improved. I’m counting down the days till my urethralplasty and the end of external plumbing…
Holy crap, Brett. That sounds awful. I’m sorry to hear that. Morphine actually doesn’t work at all on me either. It’s odd. When they put my SPC in, they did a sort of in-between thing with sedation via Fentanyl. Boy THAT stuff sure worked – like REALLY well. I didn’t feel a thing. I wish I had been able to have that for my SPC changes, which were as you described – painful beyond belief. They never gave me anything for that procedure at all. In my case, it was the guide wire going in and causing my bladder to spasm uncontrollably. Hopefully the worst is behind you now. Best of luck with the surgery!
Hi Ken,
I wish I had found your site 3 months ago !!! The posts by you and others have really helped me a lot.
I ended up in the emergency dept 3 months ago . I went there because of chest pains, nausea and shortness of breath. Lucklily the ER doctor picked up immediately from my blood tests the cause of the symptoms. I was in severe kidney failure due to a bladder blockage. I have to agree with you in that my pain scale of 10 got an adjustment. I too had an nruse that was determined to get the cathether up me the normal route. She made 5 attempts to get the catheter placed without luck. She consulted with the ER doctor and the doctor then tried another 3 times without success. They decided to transfer me to another hospital where there was an urologist on duty in emergency.
He tried to place the catheter another 5 times and then decided to try something else.. He placed 6 thin metal rods with sort of a hook on the end up me and tried to pry things open enough to get a cathether through but without luck. All this was done with only the analgesic gel. It was at that point that he told me that I would need to get a suprapubic catheter. He gave me a shot of morphine and then inserted several sytinges worh of freezing into my bladder through my belly. The insertion of the catheter wasn’t too painful . My kidney function was around 10 % so they kept me in hospital for 3 days. My kidney function is in the 20 % range now and just enough not to be put on dialysis at this point.
I had a cystoscope 3 weeks ago. The urologist tried doing it the first time without any gel or pain medication. The second time he used the gel. Did you have a lot of pain when the gel was going up you ? It’s by far the most painful part of the procedure for me. It showed that I have a complete blockage of the urethra. I have to get a dye test done later this month through the spc. He said the results of that will determine the type of surgery.
I have had the same spc in for 3 months now and I am due for my first change later this month. Hopefully it will not be as painful as what you experiened your first two times.
I have done a lot of research on the surgical treatments and they look promising.
Pain is very real and unfortuneately a part of many of the tests and procedures. I defintely feel for anyone who has or is facing going through it. Sharing yoir experiences can be therapeutic and helps one feel that they are not alone when going through the unpleasant parts. It was helped me in that way. Thanks !!!! I have also found that keeping a sense of humour during this has made a big difference. My, at times, morbid sense of humour has reached new heigths !!!
Take Care
Dale
Wow, Dale! that sounds horrible. I can’t believe that in this day and age, the concept of a stricture is so off the radar. I feel lucky compared to you in how long it took them. Glad you finally got the SPC. I’m betting you’ll be better off than I was for the SPC change though, since it’s been 3 months. Once the hole had been open long enough, tey didn’t need to put a guide wire down in there to prevent the hole healing in the seconds after they remove the old one. On my 3rd go, it had enough scar tissue that they didn’t need the guide wire and that made ALL the difference, virtually no pain. Ask them if they REALLY REALLY need a guide wire, if they say they’re going to use one, since it’s been 3 months. If they say it’s only for “just in case” it might be worth it to tell them you don’t want it. But they might know better how long things will take, etc. You definitely don’t want the hole to heal before they put the new one in, since they’d have to cut it open again. Anyway, to answer your question about the gel – I don’t remember ANYTHING hurting as much as them cramming the urethral catheter up there with no gel. Even on that same day, once they got lidocaine gel inside me, the pain was like a 4-5 as they scoped me. So it helped a LOT for me! Best of luck as you move toward completion of this ordeal! I hope you will update us here. And yes, keep that sense of humor!!
Hi Ken,
Thank you for sharing your exeprience with the spc change as well as the advice. It has eased my apprehension about the procedure.
Having the spc has at times been unpleasant. I have been on several medications including diuretics for the last 2.5 years and it has allowed me to get regular and restful sleep and not heading to the washroom several times every night, Just that is worth having to go through unpleasant moments with it. I still have an almost surreal feeling now and then when I wake up and am tethered by the long tube of the night drainage bag.
I can understand the staff in emergency being hell bent on getting the catheter in the normal route. They want to get the immediate problem resolved and get you stabilized. In my case it was a medical emergency as my kidneys were very close to completely failing. I have a feeling things would be different in some cases if you were referred to an urologist by a gp as opposed to going to emergency. I have 5 specialists, a dietitian, and at home nursing care taking care of my kidneys and bladder blockage. I am really lucky to have that level of care.
To those that read this post and others on the site. I cannot stress enough how important it is to see your doctor if you are having urinary flow or blockage problems. I thought my initial symptoms were from a flu that I couldn’t get over. I was already being treated for an enlarged prostrate and should have seen a doctor sooner. You will get through the unpleasant parts. I felt a huge sense of relief after each procedure. I joked with a friend of mine after I was scoped that the next time I saw the urologist that I would use duct tape to cover all points of entry into my body.
I will do my best to keep you updated. The low kidney function and medications leaves me fatigued and bedridden at times so it may take me a while to post.
Take Care
Dale
Thanks for the additional info, Dale.
Hi
I had the spc changed on June 29 th. It was done by a nurse in the urology dept so the nurse had plenty of experience changing them. There was a bit of pain when it was removed and a bladder spasm when it went back in. It went much better than I expected.
I had a retrograde and antegrade urethrogram done a couple weeks ago. The retrograde test was extremely painful. I told him about the pain and he said it was because he was trying to dilate my ureter with the fluid. I will have to talk to him about some form of pain management in future procedures.
He will be placing a stent in hopes to dilate the blockage. He has not had any success with dilation rods etc in the past so is sceptical about being able to get the stent placed. He let me know about the high failure rate of stents and needing to be redone. If the results of that stent are not good he will be referring me to surgeons in another city that specialize in the surgery I will need.
Getting used to taking one test / procedure at a time and realizing it can be a lengthy process.
Take Care
Dale
Hang in there, Dale. It sounds like things are moving forward at least, though perhaps not as fast as possible. I’m familiar with”slow,” having had to endure 6 months of SPC before my urethroplasty. But once the right things are finally done, it will be so worth it. Best of luck moving forward.
I had my first change done a few days ago. Hands down the least enjoyable experience of my life. Removing the stitch and changing it a couple weeks after placement had been overlooked. The stitch was pretty well healed over and the catheter had started to calcify, I just pictured them pulling a rope through me that was coated in broken glass shards. That said the new catheter feels great and the cut from the stitch healed right up.
So if someone is new to a suprapubic don’t let it get overlooked. I don’t really blame anybody they thought the problem would clear up and they would get a regular catheter in two weeks after placing the suprapubic. Well that didn’t happen and they ended up trying another cystoscope and some other things and it just got missed when the procedures went south.
Hope this helps someone else out there.
Wow. That is not typical. So sorry to hear of all the pain! My changes were painful, but only because of the guide-wire they used to prevent the SP hole form healing up in the seconds when there was not a tube in it. I caused my bladder to spasm. But indwelling caths need to be changed monthly to prevent that calcification you described. Plus, if they used a stitch in yours, it must not have been a balloon type (like a Foley). My first SPC was also held in with a stitch. It was the pig-tail variety where there is no balloon, but the tube curls up inside the bladder. But changing that to a standard Foley (still SPC though) eliminated the need for a stitch. So that helped. Best of luck moving forward.
Hi, I’m really feeling alone in my journey right now. This is really hard for me to share.
I just had my suprapubic catheter surgery done on March 8th, 2019. The surgery was done by my urologist, and I was put under general anesthesia. My surgery went well, and I was on pain killers for a few weeks. The healing process hasn’t been going very well. Although I don’t have an infection, I do have some tissue that is crystalizing on the left side of my incision site. It keeps bleeding and oozing out fluids. I have my dressing changed every three days at home by my nurses. Each time I have the dressing changed, it’s soaked right into the site. They fix me up and then it starts all over again.
Today I had my first suprapubic catheter change. I wasn’t expecting to be in any pain. How wrong and stupid could I be! The change was an absolute nightmare! The nurse I had was very nice, but she was having problems getting my catheter out, so she told me to take a deep breath and exhale slowly. I did as she suggested. Not it did the method not work at all, the nurse had to literally tank my catheter out. It hurt so much that I ended up screaming and crying. She then got the new catheter ready to be inserted. I was really hoping that the catheter would go in without a hitch. It was the total opposite! She couldn’t get the catheter in the site, so she called in another nurse to help her, and even she wasn’t able to get it in. The nurses tried 3or 4 times with no success. They then rushed to get the on-call urologist to get some help. He then tried a few more times to get the catheter in the site, but even he was unsuccessful. During this whole time, I’m crying and in severe pain. I was also starting to bleed a lot from the site. He then had to put in a wire to make the route easier to get my catheter into my bladder. As if all the attempts weren’t painful enough,the wire was much worse! He put it through the hole, and ended up hitting my bladder wall and part of my urethra. After he finally got the new catheter in, he filled up the balloon and he started to see blood coming out of my bladder. I was in so much pain, that the urologist prescribed antibiotics for 3 days and T3’s.
When I got up from the table, I suddenly felt really sick and weak. It passed, but the pain had not gone away.
I’m back home now, stuck in bed, and I can hardly move. I can’t even drive my wheelchair without being in a lot of pain. If my change was done at 8:50 am, and it is now 6:40 pm, shouldn’t the pain be gone from my urethra, bladder and incision site be not hurting me anymore? Every time I transfer from my bed to my wheelchair, the bladder spasms are so intense that I feel like I’m going to pass out, even though I’ve taken my Toviaz. Is this normal?
Oh my god! That is just so horrific. I’m so sorry you had to go through that. Holy crap! They should have put that guide wire in first, to keep the wound open. But still, the whole thing sounds like such a nightmare. I am glad you are at last over the terrible part.
I did get spasms whenever I moved a lot. One thing I used to do was tug (gently and slowly) a bit on my tube to make absolutely sure the balloon was up against the bladder wall and not floating down and around inside, poking its tip into our bladder wall. The tissue on the wall getting sucked into the little holes in the tip is what you are probably feeling.
Are you in the US? If so, I would highly recommend looking into getting a Duette catheter. You can rad about it here: https://livingwithacatheter.com/the-duette-a-better-catheter-than-the-foley/ It has 2 balloons and the inlet holes are in the section between them, so it is pretty much impossible for the holes to suck against your bladder wall. If your doctor can’t or won’t order one, you can get one yourself and bring it in and have them place it. that should help with the spasms.
And it sounds to me like the crystalization around the insertion site is what caused the trouble getting the tube out for the change. One thing I used to do (I’m catheter free now) is clean around the entry every day, sometimes twice a day, and put some Neosporin on it. I would pul a little on it also, as I mentioned, to get it up against the wall as it would fall away a bit every night and sometimes in the day. Keeping the tube where it goes into and out of your insertion site clean and able to move in and out (by a centimeter or two) occasionally ought to help keep the crystals off. And then when it needs to be changed again it will slide right out.
One good thing moving forward – assuming you’ll have the catheter in for another few months – is that after the 2nd change (at about the 3 month point – the wound will have started to scar enough that it won’t try to close up on you when they pull the old one out. My 3rd change was easy peasy, whereas my 1st and 2nd was very similar to yours on trying to get it back in part. But that 3rd change they just slide it out. I lay there on the table with no pain at all. they didn’t need the wire. They calmly inserted it and I twitched for just a half-second as it hit my bladder. But then it was done!
So there is hope there.
I hope this helped somewhat! Best of luck. If you can’t get ahold of anyone about the Duette, let me know. I have spoken to them several times.
I am a 68 year old male. I have metastatic prostate cancer. I had a radical retro-pubic prostatectomy in 2015 but the cancer had spread to the bladder neck and the urethra so they couldn’t remove it all. I’ve had a supra-pubic catheter ever since. I’ve learned to change my catheter myself. I would be happy to chat by phone or email with anyone who needs help or just wants to know more about living with a supra-pubic catheter, or a regular catheter, as I’ve had both.
Thanks Ray! That is very generous of you.