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    Cystectomy/ urostomy

    After years of unstoppable infections and tried everything I know to make this foley work I’m at the point of doing the bladder removal. So I’m not talking about bladder recipe stuff. I’m hoping to hear from paras and Quads who have had this surgery!

    Ive PM one member on here who was kind enough to talk and I’ve talked to someone in my town over the phone. They have had great results. I’ve gotten a 2end opinion from another urologist and he said every patient he’s had in my shoes who have gotten the surgery wish they did it a long time ago and he told me to get one, and also said if his daughter was getting the surgery he would take her to the urologist I’m seeing now.

    The lady I talked to had 2 infection a month for years and now Post surgery had 1 in 5 years and she said it was when she wasn’t drinking enough water. Now she “drinks a LOT of water” at 2L a day lol. I drink 6L or more.

    I have the typical para Buddha belly and wonder with that can I still wear jeans and a belt? I drink enough where I think I’d prefer a leg bag not just the ostomy bag. I wonder how people who sit all day make it work with their clothes. What happens if your hose gets kinked? Do you get AD instantly cause I know it’s bad if urine backs up into your kidneys.

    Ive been told it’s a 8 hour surgery and can be a 2 week recover time in hospital but others I’ve talked to been under both those times by a lot.

    I have a colostomy and was the best thing I’ve done since my accident so pray this is the same thing. I know finding the right flange and bag are key. I can make my colostomy flange last 7-9 days easy now. But want to be done with antibiotics cause there aren’t that many left that work anymore.

    thanks CC members!
    Mark 9:23 - All things are possible for those who believe.

    #2
    Bladder removal is not always done with a urinary conduit such as you describe. Often the bladder is just left in place, but disconnected from the ureters, which are attached to a short section of small bowel, formed into a urostomy. This called an ileal conduit, as it is usually a section of the ileum (small bowel) that is used. Longer hospitalizations and recovery would be associated more often with bladder removal at the same time, which must be done if the reason for the procedure is bladder cancer. This is also very different from a Mitrofanoff procedure.

    Back in the 1960s and 1970s ileal conduits were a popular surgery for people with SCI/D, as it was thought that they would result in less UTIs. This has not been found to be the case, and both UTIs and urinary stones are about as common with this procedure as they are with an indwelling catheter.

    With a urinary ostomy, you wear an appliance much like a colostomy appliance, except it has a drain in the bottom to which you keep a drainage bag (leg bag or bedside bag) attached at all times. The weight of urine, which flows constantly, would pull a non-draining bag off your belly pretty quickly due to the weight. Stoma placement should again be done in consultation between the urologist or general surgeon doing the procedure and the ostomy nurse. Having an existing colostomy can make it a little more complex, as you don't want to have the two stomas too close together, and existing adhesions can also complicate the surgery and limit options. You can certainly wear slacks with a belt, but want to be sure it is not so tight that it pinches off the appliance bag and prevents urine from entering the drainage tubing.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

    Comment


      #3
      Thanks KLD

      Thanks for the correction. I am waiting for my consultation with the urologist doing the surgery but Ive talked to him via email and been to see another urologist for a 2end opinion.

      From what I was told my uterus get cut and attached to a small section of colon like you said the ileum, and connect s blood supply to it and connect it to the surface. Also said 90% of the bladder is getting removed. They leave 10% of the bladder in cause it’s in a area of which it bleeds easy and my 2end opinion urologist said they leave it there to prevent any bleeding.

      I don’t understand why they numbers don’t show the surgery is a success. I’ve personal talked others with it and said its helped dramatically. Are there new technique now vs 1960-1970?

      I just don’t see any other choice than this and pray I get similar results. I’ve done intermediated cath, SP tube, but can’t get away from the foley and the infections.

      the lady I talked to who had it done but the same Dr whos doing mine and going from multiple infections a month to one in 5 years is pretty dramatic. I don’t expect to have the same results but god wouldn’t it be nice to no
      worry about. Just wish there where more SCI members who I could talk to who had it.
      Mark 9:23 - All things are possible for those who believe.

      Comment


        #4
        I know of only 2 patients who had bladder removed for UTI’s. Both had not had UTI -rarely. CWO
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

        Comment


          #5
          C6 complete since 1990. Foley catheter and SP tube caused me a great amount of pain. I had my share of UTI, though not excessive. I got my urostomy and cystectomy more ~20 years ago. It reduced my pain tremendously (80-95% I'd say). I haven't had a UTI in many years, might even say none, can't remember any since the urostomy. That is my experience. Good luck to all on this path. Oh, the surgery was rough, severely increased by not getting the spasm/pain meds I was physically dependent on at the time.
          get busy living or get busy dying

          Comment


            #6
            My urologist is recommending a urostomy if the recent bladder injections I had done last week don’t take affect. I’m very wary and nervous to get this urostomy but the never ending bladder spasms/pain I have is just not tolerable… It’s affecting my quality of life. Anyone else have experiences with urostomy‘s. My injury was at C4 5
            C4/5 incomplete, 17 years since injury

            "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

            "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

            Comment


              #7
              Did your urologist discuss bladder augmentation surgery as a possible alternative to urinary ostomy/diversion?

              (KLD)
              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

              Comment


                #8
                I will probably need a urostomy in the not too distant future as my bladder has become extremely painful with somewhat constant spasms. It’s good to hear from others that they’ve had good outcomes with a Urostomy.
                Two weeks ago I received Botox injections in my bladder and effort to calm down the painful bladder spasms that my doctor said are a result of having a neurogenic “denervated“ bladder for many years. If the Botox wears off too soon, since I can get these injections every three months, my urologist is recommending a bladder diversion.
                C4/5 incomplete, 17 years since injury

                "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

                "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

                Comment


                  #9
                  Unfortunately I may need a bladder diversion and urostomy if my pain is not manageable through medication and recent Botox injections. Botox injections were done three weeks ago and it helped a little bit but my painful bladder spasms are still miserable. Seems to cause increased overall body pain in the icy cold feeling in my arms shoulders and other areas.
                  My urologist has said that a urostomy/bladder diversion would take away my pain but I’m wondering about my quality of life after.

                  Can anyone share their experiences after having a bladder diversion? I’m concerned the bag that’s needed will get in the way of pants if the bag sits against the person’s abdomen.

                  Right now I use a supra pubic catheter, my injury is C4/5 and my injury was 26 years ago.
                  Last edited by KyleP2112; 26 May 2021, 10:11 AM.
                  C4/5 incomplete, 17 years since injury

                  "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

                  "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

                  Comment


                    #10
                    No posts or replies yet…
                    C4/5 incomplete, 17 years since injury

                    "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

                    "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

                    Comment


                      #11
                      It is a big surgery, and should be considered a last resort. Most often it will be 7-10 days of hospitalization. Initially, there will be ureteral stents/catheters in place in both ureters to protect the anastamosis (suturing of the ureters to the conduit) which will drain urine into two bedside bags. Those stents usually are left in place for 7-10 days, and are then removed by the surgeon.

                      It is common to develop an ileus post-operatively so you may have to have an NG tube as well until your bowel wakes up again. The bladder is often not removed, which then could continue to cause you some of this neuropathic organ pain, but not removing it also makes it a much less traumatic surgery and speeds your recovery. What is your surgeon's plan around this?

                      You should definitely be meeting with a ostomy nurse (usually a CWOCN) referred to you by the surgeon prior to surgery. They should be marking the location of your stoma (ideally done with you naked but sitting in your wheelchair), and talking to you about post-operative appliance selection and management, and should see you at the hospital prior to your discharge home to be sure you know how to do that. Ideally this person should continue to be a resource to you in the weeks and months after discharge for trouble shooting and to help with changes in your stoma and peristomal skin area as it heals and matures.

                      Since the appliance bag is always connected to a drainage bag (leg or bedside bag) and is constantly draining, the bag itself should be mostly empty, and lay flat against your body. Of course tight belts or waistbands on slacks can crimp off the bag, so you should avoid wearing clothing with those features.

                      (KLD)
                      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                      Comment


                        #12
                        It is a big surgery and that’s what worries me. I did change from a Poiesis duet catheter to the older style Foley catheter and so far today I’m having not having the painful bladder spasms I was. Only concern is I had to go down to a 16 F foley catheter after using the duet catheter 18 FR. After using the duet catheter 18 FR for several years I could no longer get in the Foley catheter 18 FR. Strangely the 18 duet catheter seems to be smaller than the standard foley 18 FR catheter. Is there anyway to increase the Foley catheter size/should I try to do this?

                        I have a request to see a surgeon about a bladder diversion but so far that’s where things stand.
                        C4/5 incomplete, 17 years since injury

                        "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

                        "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

                        Comment


                          #13
                          What type of bladder augmentation can be done in place of a urostomy?
                          C4/5 incomplete, 17 years since injury

                          "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

                          "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

                          Comment


                            #14
                            A clam-shell bladder augmentation is done to increase bladder capacity and decrease spasm and bladder pressures. A urostomy is usually reserved for conditions where the bladder must be removed (such as bladder cancer) or for some other reason cannot be used as a urine reservoir anymore.

                            (KLD)
                            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                            Comment


                              #15

                              I’m waiting to see a surgeon who does these type of bladder diversion/augmentations. I’ll definitely bring up the clamshell bladder augmentation designed to increase capacity, which I wasn’t aware of. Like others who are considering the surgery,
                              For quite a few months I’ve been having so much pain and bladder spasms which make my overall chronic neurogenic pain much worse, it seems having bladder diversion or augmentation of some sort is the only help out there.
                              C4/5 incomplete, 17 years since injury

                              "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

                              "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

                              Comment

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