Self catherizing after major bladder surgery

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I have been self catherizing for 10 months after surgery.  I was told by my doctor that my bladder may start working again.  It could take as long as 1 year or more.  It's finally happening and I am only catherizing at bed time.  I've been measuring the urine that my bladder can not empty and it's almost at 100 MLB.  I remember him saying when it reaches only 100 you can stop.  Has anyone done this?  If so have you been successful and what is your experience 

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  • Posted

    Hi Wendy,

    I'm so pleased for you that your bladder has started to work again. Mine hasn't worked for 3 years now, I'm still self catheterising. Was there anything special that you found helped your bladder to start working again please? My life is awful, I have an embedded uti and have been on antibiotics full dose for a year and a half now. Any advice would be very much appreciated.

    Thanks,

    Sam

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    • Posted

      Hello Wendy and Sam,

      I am a male who has been self cathing going on three years. While our anatomies and the cause of our compromised bladders may be different, I can say that at least in my case I have significantly rehabilitated my bladder function through self cathing to the point where I am only cathing once a week these days. This opposed to 6x/day when I started.

      Wendy, the 100ml number is a reasonable stop point if your catherized volumes are consistently below 100ml at different times of the day. So, even though you're only cathing once a day, I would check via cath for a day or two after each natural void to make sure that you're under 100ml each time. Also the total of each natural void plus catherized void should be under 400ml. A urine log will be helpful noting time of day, natural void volume, and catherized volume. If all check out, and you stop, you will want to routinely check your residual volumes at your doctor's office via bladder scan to make sure you do not start retaining again.

      Sam, One piece of advice is to do a log and measure both your natural void volumes (if any) and your catherized volumes. If the sum of the two is more than 400ml, then you should increase the frequency of your self cathing because you do not want your bladder to stretch.

      I am sorry to hear about your uti's. Are you seeing a urologist who has a fairly large self cath practice? Not saying this is the case, but some doctors overtreat uti's in the self cathing community.

      Just about everyone who self caths becomes colonized with bacteria. That means you will test positive both with the dip sticks and with a urine culture. Colonization is sometimes called asymptomatic bacturia or a asymptomatic uti. This is normal and does not require antibiotics. Antibiotics are only required when there are real symptons such as continued buring when urinating or fever. Unfortunatly, many doctors unfamliar with self cathing do not understand this distinction and treat with antibiotics when they shouldn't. 

      Jim

       

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    • Posted

      See my reply to Wendy and just to you I would like to point out that self cathterisation is a natural vehicle for introducing UTI's. I had regularly recuring UTI;s over the three years and had almost every antibiotic available until they were no longer working. My urologist then gave me last September, Fosfomycin, an orange powder whih you mix with water. Normaly one dose is sufficient but I was given three packets to be taken alternative days. I'm glad to say that I havn't

      had a UTI since. Also my GP suggested that I take a prophilactic antibiotic once a day and change the type every 3 months.

      You shouldn't have to live with a constant UTI. 

       

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  • Posted

    I am a 72 year old male who had an early stage cancer removed from my bladder. After 3 years, I am completely clear. I too have to self cathterise which I have been doing 3 times a day for the last three years. When I wee naturally, I manage to pass 200 ml and then  a further 800 ml by catheter. I can feel when my bladder is full but get no urge to go. I was originally told that I would have to cathetrise for life.

    In January I have an appointment to have a urodynamic test to check pressure and flow. I am very pleased for you that you are able to wean yourself off catheters. Keep up the good work.

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    • Posted

      Hi Davidansy,

      I can't tell you whether or not you will be able to wean yourself off catheters as I was able to. What I can say is that your current cath schedule is probably not going to help very much.

      The idea behind bladder rehabilitation through self cathing is to help the flaccid (stretched) bladder decompress and regain tone. With the numbers you gave me, your bladder is holding 1000ml of fluid much of the time. This is too much fluid and will not allow the bladder to decompress and gain tone. 

      The rule of thumb is to keep total bladder volume under 400ml. Total bladder volume would then be your natural void plus the void by catheter. Your current total void is 1000ml.

      In order to get close to the 400ml number you would have to up your cath schedule to 6x/day. Unless advised otherwise, you might also consider cutting a little down on your fluids, as 3000ml a day is a lot of output. So if you're taking in ten 8oz glasses of fluid a day, maybe try 8 glasses to get input closer to 2500ml a day. Do you know how much fluid you're taking in a day? A log might be helpful noting all fluids including water, soft drinks, coffee, soups, etc.

      I would contact your doctor as soon as possible and run a 6x/day schedule by them. Unless they have a very good reason, I would then go get another opinion. In addition to helping your bladder possibly regain tone, a more agressive cath schedule should also mean fewer UTIs if that is an issue with you. It also should protect your kidneys better by having less back pressure. Are you having periodic bladder and kidney scans? Have you ever had hydronephrosis (water in the kidneys)? Do they check your kidney function via blood tests on a periodic basis? 

      Several threads going on self catherization on the Prostate Problems forum if you're interested.

      Jim

       

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    • Posted

      Thanks for your advice. I don't get 1000 ml out three times a day. Sometimes 200 ml, sometimes 400ml, usually just once a day (morning) 1000 ml.

      My kidney function is OK. I do have regular blood tests.and drink plenty of fluids to avoid UTI's.

      I will discuss 6 X a day with my urologist in January.

      My prostate is not over enlaged and I take Finasteride in the morning and Tamsulosin at night just to keep things as they are.

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    • Posted

      Hi Daviddansy,

      The numbers you just gave are better but again, you really want to keep total bladder volume under 400ml, as much as possible. Maybe you can accomplish this with 4 or 5 caths a day, but I think 6x/day will give you the best results. 

      By all means discuss with your urologist but I doubt that your urologist will buy into the underlying premise that your bladder can be rehabilitated through self cathing. In fact, I think you mentioned that he told you self cathing would be for life. 

      I was also told I would have to self cath for life and my urologist was department head of a prestigious hospital in a major metropolitan center. He was wrong. 

      At the end of the day it's your body, your prostate and your bladder. Not your doctor's, not your nurses. If they were right all of the time, this forum would be out of business! I encourage you to read up about self cathing and protocols. The "400ml" number to gauge cath frequency is not my number, it's an established number based on the amount of fluid a normal bladder should hold. If it's holding more than that, it will remain in a stretched (flaccid) condition, and will have no chance of recovering. 

      As to the drugs you're taking, Tamsulosin is fine if it helps and you don't mind the side effects such as retro ejaculation. I have taken both Tamsulosin and Daily 5mg Cialis and found the Cialis worked a little better but the bonus was no retro ejaculation and a boost in sexual performance. Daily 5mg/Cialis is now approved for BPH by the FDA. 

      Finasteride is another animal. Not sure why you're taking it given your prostate is not overly enlarged and given its side effect profile. Even if it shrinks your prostate, so what? You're cathing anyway, right? I never took Finasteride and my system works pretty well now. 

      Jim

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