Problems getting my catheter after 4 years of CIC

Edited , 11 users are following.

It has been almost 4 years now since I started CIC due to my very large prostate (300 cc). I CIC 3 to 4 times a day and still have a good natural void in between because I do not have a median lobe or other bladder neck obstruction.

Other than a few UTIs over the years I have never had any problem doing CIC - until a few days ago. I use the Speedicath 14fr coude hydrophilic catheters and always add a little lubrication to help. No other catheter has worked as well as these.

So a few days ago I must have nicked the prostate during entry. That is the problem when we get too complacent with CIC - every time is like a new time requiring full attention.

There was some pain and a little bleeding then. But now the problem is really getting bad. The prostate side lobes seem to have swelled up from the nick just enough to block my normal voids and make getting the catheter in difficult and painful.

There is no problem getting through the upper part of the urethra but as soon as I hit the prostate it is like hitting a wall. Every time I CIC now I seem to re-injure the original injury so there is a little blood when the flow starts. It quickly clears up and when I pull out the catheter there is always a little blood in the lower part.

So I don't see how this original little nick can ever heal when I keep irritating it and cause it to bleed every 8 hours. And there is so much discomfort afterwards too for a few hours.

I do not have a UTI as the urine is clear. But I worry I am in a catch 22 because I need to give the injury time to heal but I cannot do that because I cannot do a NV do the swelling.

I've taken some NSAIDs to try and bring the swelling down and that helps a bit.

Any ideas out there from your experience would be greatly appreciated. Thanks.

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  • Posted

    Howard,

    I had almost the same situation a year ago. Unfortunately, I don't have a solution (since my situation has basically stayed at that new normal) but maybe a tip:

    When this happened I was using what I think is the best catheter I've found: Speedicath Compact male.

    I had to stop using it because I couldn't pass it through (it is a little stiffer and not coude). So I switched to the one you are using. My recommendation is to split your order into half 14FR and half 12FR. I find that 12FR is easier to pass through when I get stuck.

    It has really been disappointing for me because the Speedicath Compact Male were by far the best for me.

    You have my total empathy. Best of luck!

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    • Posted

      Thanks Arlington. So do you still have some blood every time you CIC now? I had hoped that maybe it would still heal over time but just take longer. Does your bleeding get worse over time? If the hematuria stays open it would be a source for infections to occur.

      I do have 12fr (straight) but they just jumble up and go no where against my large prostate. Good luck.

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    • Posted

      No, the bleeding lasted about 3-4 weeks; however, it is still more difficult to pass through, so I have not been able to go back to the Speedicath Compact Male catheter which was so good for me. I don't know if it's permanent, but my urethra definitely seems more obstructed now. It could have been avoided: my urologist suggested that I go off of my medication since I was using a catheter anyway and that's when it happened.

      One difference between you and me is that I have not been able to void naturally (at all) for about 4 years.

      I had a PAE in 2015 which didn't work - partly because I have an enlarged median lobe. I'm following the FLA procedure w/ Dr. Karamanian, but am in no hurry until there are more double blind clinical results.

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    • Posted

      Thanks Arlington,

      I also had a PAE in 2016 at UNC that provided no relief for me. The IR there told me I could stop taking my medications (Avodart and Uroxatral) but I did not stop taking them. I wanted to see some good results first from the PAE but that never happened.

      All the best

      Howard

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  • Posted

    Hi Howard,

    Good to see you again, but sorry to learn that your C.I.C. has gone rough on you! I have a similar bleeding problem when I am testing a different catheter. My solution is to change catheter down one size. I see your normal catheter is Fr-14 coude so I would go to Fr-12 which I think is the next one down, but please check on this. Once everything is stable and the hematuria has cleared up go back to your Fr-14.

    BTW I'm a wee bit different because I switch through Fr-18. Fr-16, and occasionally Fr-14, and always straight.

    Other than this I don't know what you can do other than change catheter brand, which I have done three times already.

    Changing the subject completely, what is happening with "Patient"? I've been trying to contact "Cartoonman" to no avail. If you or Mr. Moderator could help I'd be really appreciative!

    Howard, I really hope the foregoing works for you. Warm regards. alan86734.

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    • Posted

      Howard, I forgot to mention, my bleeding has always stopped after my first or second post-C.C.C session and, perhaps even more important, I'm on a moderate coumadin (blood thinners) 20 mg/week dose per week.

      Sorry about that!

      Warm regards, alan86734.

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  • Posted

    Hi Howard. Sorry to hear that you are going through this.

    I don't have any direct experience, but I was wondering if wearing a Foley for a number of days might give the area a chance to heal? I'm guessing you are not keen on having a prostate procedure.

    Best of luck.

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    • Posted

      Hi rdemyan - My uro's nurse just called me and suggested what you said herr - to wear a Foley for a week. That freaks me out!!! Woudn't the scab form against the foley and then get pulled off when I took it out after a week starting the bleeding all over? And I need the coude tip otherwise the straight end would spear my poor prostate.

      I am looking now at getting a robotic simple prostatectomy maybe next year. It is offered now near where I live in Canada but it is a major surgery though the few men that I know who have had it have done well. I've ruled out other procedures for massive prostates like Holep, FLA. I just worry what would happen if I couldn't continue to CIC like now!! This has always been my biggest fear. Good luck.

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    • Posted

      Howard, I was on Foley Catheters for a long time. Actually, 3 months. During that time I had lots of UTIs but the only bleeding came from the bladder itself. Having a rubber hose vibrate up and down while touching the wall of the bladder usually set off some bleeding that would stop after a week. I don't know a thing about CIC, but the Foley would probably reduce the movement a bit over doing CIC for a week or whatever time you are running it. If it was the prostate that you hit, this would relieve the irritation. I don't know if the scab would attach itself to the Foley, even if it was lubed when inserted. However, my TURP is similar to having the prostate "nicked" (and then some) and I'm still healing 4 months out. The urologist told me that prostates take a LONG time to heal. I know that 7 weeks out, I had a lot of blood clots on a cystoscopy view and I don't know that a lot of them have come out. Maybe you can get your urologist to do a cystoscopy just to have a look?

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  • Edited

    There are foods we should eat or drink for prostate health.ALot of stuff on the internet just typed in what to eat or drink with BPH.Some stuff can make the prostate grow.You can get herbal remedies but make sure it's the good stuff.

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    • Edited

      Yes - dairy is very bad for BPH. It is both a growth hormone and an inflammatory food. I used to eat a lot of yoghurt but found that when I stopped it I could CIC much easier and less frequently. Thanks.

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  • Posted

    Thanks for sharing Howard. It's a good reminder not to get too complacent when performing cic. I've been doing this going on 3 years pretty soon. I'm now using a Cure 14 straight tip. For a long time I was using FR12 speedicath coude. I would feel the sharp end of the coude so I switched to a stright tip for awhile. Got tired of the slow draining so I thought I'd try the Cure one; it was also less money to my medigap policy - not that it really matters. I think the private insurers get reembursed by the government under medicare. I like the Cure 14 fr hydrophilic. i got a nick a while back. I think I was holding my penis too much upward; neglected to straighten it out when I reached the prostate. Anyway, thank goodness it must have been minor because the next time it didn't hurt at all. Cic is still a pretty good option for me especially now because I'm retired and home most of the time with the coronavirus thing.

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  • Edited

    Hi, Howard,

    Sorry to hear you're having cathing troubles. Over the past 3 months I progressively had more difficulty with my CIC. I seemed to have the most trouble at the sphincters. Sometimes to reduce inflammation, I've done a water fast for 24 hrs. Someone on the forum suggested it, and I'll send you his information, if I can find it.

    Because I was having trouble with CIC and because my bladder stones returned, I opted to go with FLA, which Dr. K did on April 30. My prostate had grown to 120 cc, and he removed the tissue that was pressing into the base of my bladder and prostate tissue along the urethra. In all about 45% of my gland. I'm still early in my recovery, but can report that I've had no pain or discomfort from the procedure. The only pain and discomfort has been from the Foley catheter.

    Foley's are a pain, to be sure, but I'd consider that as an option to let things heal up in your body. Dr. K put me in one for 14 days because he removed so much tissue. I was doing okay with it until day 10, when it suddenly decided to come out on it's own! That's another story--but has a good ending.

    Steb

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    • Posted

      Thanks Steb - wow that was a big step and I am glad to hear you are doing well.

      How did you and Dr. K navigate all the Covid restrictions to get your FLA? Do you live nearby?

      Did Dr. K also take care of your bladder stones?

      I cannot imagine having to live with a Foley. I am a crybaby when it comes to discomfort. So you must have just take it out yesterday - how are you now?

      Please tell me more about your experience. Did the water diet really help with the inflammation?

      I took Ketorolac for 3 days (strong NSAID) which did bring down the inflammation but then it lead to excessive bleeding from my prostate wound. I am trying to go 24 hours w/o CIC and just small NVs before I have to cath tonight.

      I might just get the prostate out with the RSP and be done with it.

      All the best to you

      Howard

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    • Posted

      Hey, Howard,

      I live in Idaho and flew to Houston for the FLA. Took precautions like wearing face masks, using hand sanitizer and washing my hands a lot. The planes and airports were not crowded at all, which helped. I booked a hotel about 1.5 miles from the surgery center, and the room had a kitchenette so I opted to eat in my room to avoid additional exposure. Several friends offered to go with me, but I declined as I didn't want to possibly expose them to Covid-19. I hired a nurse from an agency in Houston to be with me for 12 hrs after coming out of sedation. It all worked out really well.

      Dr. K did not take care of my bladder stones, but he and my urologist in Seattle agreed that doing the FLA first will make stone removal much easier. That surgery is scheduled later this summer, as I need some recovery time.

      Your reluctance to use a Foley indwelling catheter is understandable. Chances are you will only need it for a week or less. Like with CIC it's important to keep the process clean. There are medications available to help calm bladder spasms, if you have them. If you go ahead with the RSP, I imagine they'll fit you with a Foley for at least one or two weeks.

      I had my Foley in for 10 days, but it was supposed to be in for 14. Evidently, the balloon that keeps it in the bladder deflated or burst, and the catheter started coming out on its own. I almost had to call the EMTs, but Dr. K had given me his personal cell phone #. He told me to call anytime day or night I had a problem or question, so I called. He calmed me down and calmly walked me through the process of removing the Foley. What a relief!

      The trauma of the event led to intense bladder spasms for the next 20 hrs, but I got through it.

      While my body is adjusting to the FLA, I'm back doing CIC. My prostate is still inflamed from the procedure so CIC can be difficult at times. I'm pleased to report that even with my inflamed prostate, my natural voids this week have increased from 10 ml to 70 ml. The 70 ml isn't consistent yet, but I've had several at 50 to 60. I'm hoping to see that continue to increase. Eventually, I may be able to stop CIC all together.

      If you're interested do some research on intermittent fasting. One forum member, Stan98754, talked about it in a thread entitled Prostate Median Lobe. I have found fasting to be helpful and have used it several times over the years.

      Hope you find a solution for your CIC problem.

      Steb

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    • Posted

      Hi Steb,

      You are very courageous and I admire you. I wish you a speedy and pain-free recovery. It is too bad we all have to deal with the problems. Please keep us informed of your progress.

      Regarding the bladder spasms - what drug did you use to stop them? Was it effective and what were the side effects?

      Do you know if Foleys come with the coude tip? With my large prostate a straight tip would skewer my prostate and probably make things worse.

      Do you have any bleeding now when you NV?

      Thanks for your help. These are scary problems.

      Howard

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    • Edited

      Hi, Howard,

      Yes, Foleys are available with a coude tip. You may want to request that if you have one put in. Otherwise they might just use a straight tip.

      The anti spasm drug I used years ago with a Foley was Oxybutynin. The side effect I experienced with that was blurry vision. For the recent Foley, they gave me Hyoscyamine. I didn't have side effects with it. It worked well for the first few days, but not so much later. Sometimes bladder spasms are caused by the Foley balloon being pulled up against the bladder wall. The bladder reads that as a full bladder and contracts. Sometimes when I'd feel a spasm coming, I'd slightly push the tube in, and the spasm would stop. Didn't work every time, but many times it did.

      Yes, I do have blood and debris come out at the beginning of a NV. Then my urine clears up. Dr. K said to expect that for a while.

      Hope you find some relief for your inflammation. Other things I've tried are sitz baths and cold packs, and sometimes those have helped.

      Steb

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    • Edited

      Hi, Arlington,

      There have been times when CIC has been difficult for me. Sometimes I think it's been a reaction to foods I've eaten--and the reaction has been inflammation in my urethra and/or my prostate. A brief fast seems to help reduce that inflammation. I've also used it with other illnesses and found it helpful. I think my body is able to use the energy it would use to process food and instead use that energy to help heal.

      Steb

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    • Edited

      Hi, Howard,

      Yes, I second Steb's comments on both points. Foley catheters do come with coude tips. I got one in ER a while back and it dragged horribly. Thinking that there might be an error in my record I asked the nurse where did she get the idea from that I was a coude user. Her response was, "well, at your advanced age surely you can't use a straight catheter?"

      Bladder spasms can be triggered by a Foley being pulled into the bladder neck, usually due to patient's body movements. Pushing the catheter in a few millimeters -- not too far or the catheter tip will come up against the trigone -- and that should quieten the spasm.

      Warm regards, alan86734.

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    • Posted

      Thanks Alan. So are you saying a coude Foley is NOT a good idea because the curved tip can drag on the bladder wall?

      With my large prostate I could never get a straight tip in as it would pierce the prostate and add to my problems.

      Just for "fun" I will start a new topic and ask about Foley use in general. I don't know what to do right now. I was able to avoid CIC yesterday for 24 hours by peeing small amounts throughout the day. But at 3 am I had to CIC and was really sad to see the break did not reduce the bleeding at all from the prostate when I pulled the catheter out.

      All the best to you

      Howard

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    • Posted

      Hi Howard,

      Heavens no! What I'm saying is that for someone who is best suited for a straight catheter, as per doctor's orders, is likely to have a "rough ride" if a coude is used instead. In other words, whether to use a coude or a straight tip is a decision your doctor should make.

      Warm regards, alan86734.

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    • Posted

      Thanks a lot Stebrunner. I'll try to muster the discipline to give it a try.

      By the way - I love Idaho. I spend some time there every Summer at the house my Mom grew up in in Swan Valley.

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    • Posted

      Hi, Arlington,

      With fasting you may want to consult your doctor first if you are diabetic or on medications. I'm not on any medications so I haven't had any problems with it--however, I usually only do it for a day or two.

      If I recall, Swan Valley is over near the Teton mountains. That's a beautiful area!

      Steb

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    • Edited

      Hi, Howard,

      No, I haven't had any allergic reactions to a Foley, and I'm sorry I don't know what material the Foley's were made from. I think a lot of medical providers shy away from latex because of the allergy situation.

      Steb

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    • Posted

      Howard, I had a spare Foley here in my closet. The nurse thought she was just giving me some irrigation supplies but a Foley was in there. I don't know it there are actually "straight" Foley catheters, but all of the Foley catheters they put in me were plain rubber. It's not plastic or metal. Kind of the consistency of a worm or a gummy. If you check on Wikipedia, they are defined as flexible tubes. I think if you are only going to have a Foley for a week or so, you might not even need to do the irrigation procedures but that would be best to ask the urologist as it can be a function of blood clotting and the size of the catheter. But, the insertion is usually done by a doctor or nurse and you could ask them if you need one with a coude tip. I'm just a patient and mine were all straight. The actual "tips" were slightly rounded but also slightly pointed. I think the bleeding issue is the balloon (yes, its a water balloon that you hold in your bladder) rubbing on the bladder walls or neck. One of my E.R. trips was cause I got lazy and was "dragging" my leg bag and it got caught on something and it was like someone TUGGED on the catheter tube producing a lot of blood. The bleeding stopped in a couple of days but did that hurt.... Couldn't believe I was that stupid. So the point here is that the Foley catheters that I had to deal with were all soft flexible rubber. Not stiff or straight.

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    • Posted

      Thanks Howie. My family doctor has sent an order in for me to get a visiting nurse to my home who specializes in catheters. That wouldn't happen till next week but I can manage ok till then. Thanks for your information - it helps me to understand Foleys better. But I do not see how they can get a soft catheter through my large prostate. When I would try Speedicath 12fr they would just bunch up like spaghetti and cause bleeding so I had to go up a size to 14fr which has worked well for 4 years - until now. All the best. Howard

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    • Posted

      As Alan suggested, think of the Foley as a "wet noodle". As it's pushed through, by hand, it can be rotated. Think of a toilet bowl "snake" going up and around the curves of the bowl bottom. Guessing the right size is important, so an experienced nurse or uro is important. I'm assuming that the CIC caths you use are fairly rigid. There's also lube. The hard parts are: getting past the prostate and getting into the bladder. Have you had a cystoscopy? It's kind of like that. Goes in slow, too. I've had all mine put in by the E.R. nurse or a urologist or a urology nurse. Some were better than others, judging by the pain and ease of insertion. Sometimes, taking one out is more painful, especially if the balloon doesn't deflate properly. All of my removals have been by the same group, especially when I needed to do a void test at the same time. That is, they remove the tubing and fill your bladder with sterile water via pump syringe through the catheter. When you REALLY have to GO, then they write down how many ml of water they inserted and then deflate the balloon and pull the catheter and then they give you this urinal measuring thing to see how much output there is. Not enough coming out? In goes another catheter. If you have something like TURP surgery, the Foley catheter they put in has the end cut-off or something like that so you can pass large chunks of "meat" while still under. My last catheter was a size 22. A nurse tried to give me a size 24 months before that but the pain was too intense and she couldn't get the balloon inflated. I think you'll be fine for a week or two but find out what irrigation you need to do. Kaiser gave me a home nurse service too but they were pretty useless. You ask them to do an irrigation and they tell you they'll set it up for the next weekly visit. Learned more by going to the ER.

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    • Posted

      Thanks Howie. It sounds very complicated to me. The home nurse will be coming over later today so I will keep in mind what you wrote. Did you ever have prostate bleeding problems that persisted with all the pushing and shoving of these foleys? I don't think a size bigger than 14fr could get past my large prostate. Thanks.

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    • Posted

      By the way, Howard. If you get a TURP, the blood clots from that are pretty solid and hang in there for a very long time. I was checked by the URO at 7 weeks and he said that I had a LOT of healing to do. So, if you have prostate "damage", I would assume that it won't heal very quickly either. In theory, a Foley would keep urine off of the prostate assuming the urine ALL goes through the Foley. However, if you have bladder spasms and urine travels outside of the catheter, I imagine the urine is hitting the prostate. So, the Foley should take care of that prostate for you unless you have wet spasms.

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    • Posted

      Thanks Howie - you help me a lot with this problem.

      The continence nurse was here yesterday but she only brought a straight Foley catheter. She had never heard of a coude curved tip used for large prostates. She said that may explain the problems she has had getting the Foleys in with men that have BPH!So she special ordered the coude for me and said they will be in on Monday.

      In the meantime I was able to go another 24 hours w/o having to CIC. But at 2 am as usual I was awakened in retention and took out 800 cc though the bleeding was less but still fresh bleeding. It is a amazing to me that I have the best NVs ever during the day now having got off all drugs and supplements. I hope it continues to give the wound time to heal between CICs.

      So you are saying that just pee flowing past the wound will continue to irritate it?

      I told the nurse I want to insert the Foley myself - I guess Monday now if the bleeding doesn't stop.

      How are you now? Thanks for your help. All the best.

      Howard

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