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  • Indiana pouch questions

    If I don't catch a cold or other infection before then, I'm scheduled for bladder/urethra removal and Indiana pouch surgery in a little over two weeks. I've been cleared for surgery by my doctor, and my urologist said he can do followup. We need to travel about six hours out of town for this procedure (here's hoping the rest stops are still open). The surgeon said I'm a good candidate (I'm 40 years old and obese, but I don't drink/smoke/do drugs, and have no other major health issues aside from hypothyroidism) and that my hospital stay should be about a week, though I'm assuming it'll be closer to 10-14 days.

    I asked twice if it'll matter if I'm on my period during surgery since I'm due to start right around that time; both times the people on the phone (receptionists or nurses, not doctors) said they believed it would be okay but they would check; never heard more about that, so I'll assume it's okay. The thing is that I use tampons, and I assume I won't be able to use those for a while after surgery. So I'll probably need underwear and pads instead. Thing is, how do I wear that when I'm going to have all those tubes in me...?

    I'm also worried about prepping for surgery itself. They want me on a clear liquid diet for 2 days (which for me means I'm basically going to be fasting) and to drink 64oz of bowel-cleansing solution, plus at least 6 large glasses of water the day before. My bladder feels uncomfortable at 1oz and full at around 3-4oz., and when I drink normally (I usually drink 24-30oz a day), I have to urinate at least every 10 minutes. I know how long prepping can take, so I'm worried I'll be peeing all over myself repeatedly in the bed while waiting. Do they catheterize/bag you or anything while you wait? Could I ask them to do so?

    I also have no clue what sorts of things I should/can bring with me for a 1-2 week hospital stay. Clothing? Toiletries? Entertainment/electronics? Food/drink? Money? What? And how do you keep yourself busy all day long? Painkillers don't seem to make me drowsy like they do other people, so I imagine I'll get bored.

    I'd really appreciate info if anyone has been through this experience. And please cross fingers for me that I don't catch a cold/infection before then. (Got a flu shot and am taking vitamin C and zinc, no idea what else to do.)
    Last edited by tehuti88; 11-24-2016, 09:57 PM.

  • #2
    Re: Indiana pouch questions

    Before admission, you will probably receive information from the hospital about what you should bring. Usually they ask that you not bring anything with you --- instead, if there are things you want, have someone bring them in after your surgery and are in your regular room. Most hospitals have TV in all rooms. You'll probably sleep a lot of the time.

    You can always ask about the catheter while you're waiting --- I would ask the doctor's office about that one.

    I hope it goes well for you.

    Warm hugs,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      Re: Indiana pouch questions

      When they wheeled me into surgery for my radical cystectomy, I was wearing a Depends because for months, I had ZERO control over my bladder. I had no choice but to wear one or I would have been swimming in pee and told them so, but the nurses and doctors were very compassionate and understanding and acted like it was no big deal.. "Don't worry, we'll take care of it" is what they told me. I'm thinking that they probably aren't going to cath you since they'll be taking your bladder out. Remember that even though your situation may seem problematic to you, it's probably nothing they haven't dealt with before. You may not know how they'll handle it... but I'm sure THEY do.

      Take a warm robe, slippers, toothbrush, and toothpaste. I was only in the hospital 6 days but I lived in my hospital gown. I only needed street clothes for the trip home. If you think you're the type to get bored, take a good novel or two, crossword puzzle/cryptogram book, whatever you normally enjoy to keep you busy. For sure take your cell phone and charger. I did not have a need for money during my stay nor did I have anyone bring me food since I ate well from the hospital menu. I watched a lot of tv, but I happen to like tv. My sister was there for my surgery and then stayed in my hospital room with me 24x7 so that helped a lot. Keep in mind, too, that you're not going to have a chance to get TOO bored. Hospital personnel will be in your room all day and night taking vitals, changing your IV fluids, giving you medication, checking your surgery location, etc. You'll be glad to be discharged so you can finally get some rest!

      Typically before surgery they give you a pre-surgery pamphlet that answers many of the questions you have. You may want to ask the admissions office if they have one. If you still have questions about your surgery, the best person to talk to is your doctor or your doctor's nurse.

      "When you gotta go, you gotta go!"

      Comment


      • #4
        Re: Indiana pouch questions

        Yes, they can do the surgery if you have your period. Don't worry too much about the peeing so much factor, they will either put Chux under you- absorbent pads, have a commode next to the bed or a bed pan. As for what to bring, most likely you will be pretty out of for a few days afterwards. I usually bring things like writing utensils, a pad of paper or notebook to write down questions cause I always for get what they are when the doctor comes in the room. If you like to color bring a coloring book, with pencils, crayons or pens. if the hospital has WIFI you can bring an ipad. I usually just space out watching TV. You may want to bring a favorite pillow or blanket if that would comfort you. I bring or have them brought in, hard candies to suck on with the doctors ok. I also usually have chapstick and possibly hand cream, the air tends to be dry in hospitals. Good luck!

        Comment


        • #5
          Re: Indiana pouch questions

          I'm sending you positive vibes and a smooth operation & recovery. You are very brave to do this, I hope you know that. Update us on how you're doing, sending you gentle hugs!
          Health Issues
          IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
          Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
          Symptoms:
          I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

          Failed
          Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

          WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
          Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

          Comment


          • #6
            Re: Indiana pouch questions

            Thank you all so much for the answers and help. We should be leaving in the morning for Ann Arbor (driving through a storm system, so that's worrisome); I have to start a liquid diet and bowel prep Sunday afternoon through Monday, and take care of some pre-surgery things on Monday (I hope so much they don't change their minds at the last minute!). And then if that all goes well, surgery on Tuesday morning.

            I hope this is the start of me getting my life back!

            Comment


            • #7
              Re: Indiana pouch questions

              Please let us know how you are doing as soon as you are well enough.


              Donna
              Stay safe


              Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
              Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

              Have you checked the ICN Shop?
              Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

              Patient Help: http://www.ic-network.com/patientlinks.html

              Sub-types https://www.ic-network.com/five-pote...markably-well/

              Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

              AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

              I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
              [3MG]

              Anyone who says something is foolproof hasn't met a determined fool

              Comment


              • #8
                Re: Indiana pouch questions

                Hi again. Today I had my urostomy catheter removed, though the suprapublic catheter is still in place. In several days I go to get that removed, and they said they'd put a Foley catheter in the urostomy for 24hrs at that point. So now I'm practicing self-catheterizing to empty my pouch.

                I've encountered a complication, though. Not only can I not be sure when the pouch is empty (all I have to go on is the urine stops flowing even after I move the catheter around a lot; but not much urine seems to come out), but the catheters seem to be getting clogged up with mucus. I noticed this when I held one under the tap and squeezed it and water forced some mucus out of the catheter eyelets. I tried both washing/reusing a catheter, and using a new one, and the same thing happened.

                When they removed the urostomy catheter they didn't say a thing about flushing the pouch (we've been putting saline in and taking it out three times daily using both catheters), so we called them to ask what the protocol is now. I assume we'll be putting saline in the suprapublic catheter (now capped off/bagged) and then draining it with a regular catheter via the urostomy, similar to what I'm trying to do now, but they haven't gotten back to us yet.

                But anyway, if mucus is clogging the catheters, I'm not sure how I can properly empty my pouch. :/ Does anyone have advice?

                Comment


                • #9
                  Re: Indiana pouch questions

                  Yes, you will need to flush the pouch with saline daily. When you do the flush are you pulling back on the syringe to get it flowing or just letting it drain on its own? How much are you using when you flush it. Try and increase your intake of water, this help to thin out the mucus.

                  Comment


                  • #10
                    Re: Indiana pouch questions

                    Previously we'd been putting saline in both catheters, then pulling it out of the urostomy catheter with a Toomey syringe (we couldn't pull the saline back out of the suprapubic catheter, which I told the doctor, but he didn't seem concerned). We put 60CCs in both catheters (total 120) and would often pull out more than that (the saline plus urine), though occasionally less.

                    I had a more successful cath after I made my last post (drained about 5oz), but the one after that was only a few drops. :/ I can sometimes tell when the pouch is full when it feels like I'm having painful gas (I assume because the pouch is pressing on my bowels?), which isn't occurring yet, so I hope this just means there isn't much urine to drain.

                    I don't have much luck drinking a lot yet since I just got over a kidney infection (lots of nausea) and my stomach feels quite small, though I hope this improves eventually. I only manage about 42oz or so a day, currently.

                    The hospital didn't get back to us today so I'm not sure how we do the flushing with the change in catheters, or how often we do it.

                    Comment


                    • #11
                      Re: Indiana pouch questions

                      Something I'd never read about in anything I've looked up online, I needed to have an indwelling catheter placed back in my urostomy for 48 hours after the suprapubic catheter was removed so it could heal a little. This has finally been removed (I had to do it myself) and now all I'm dealing with are bandages over the wound and the urostomy (in case of leakage--don't know how bad that might be yet, hope it isn't awful), and my intermittent catheterizations to empty the pouch and keep it flushed. I need to go back to U of M yet again for a followup appointment in a month, but hopefully that will be the last long-distance trip.

                      I'm kind of scared of getting something wrong (I'm figuring this out as I go along, since it's not exactly the way anyone has described it) or of getting another infection, but it feels so good to not have bags or catheters or hoses coming out of me!

                      Comment


                      • #12
                        Re: Indiana pouch questions

                        I am sure it is all over whelming for you and you are on a steep learning curve.

                        Take it ne day at a time, you will get there.
                        My are with you all. May you all find a way to peace and joy in your lives.

                        Comment


                        • #13
                          Re: Indiana pouch questions

                          I'm kind of scared now. I was having trouble flushing on my own and I think I forced the catheter in too much, because it came out with a little blood on the tip. I won't make that mistake again, but is this serious? What should I do? It's nearly the middle of the night here so I can't do anything until morning.

                          Also, how can you tell if your stoma has prolapsed? The little pink area seemed to be sticking out a little before I put the catheter in. I'm not in any pain yet, but I'm just so worried.

                          Comment


                          • #14
                            Re: Indiana pouch questions

                            Sorry I have no idea how to answer your questions, I think you should write down your questions and go ask your doctor
                            My are with you all. May you all find a way to peace and joy in your lives.

                            Comment

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