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Homepage – Forum Forums Muscle Invasive Bladder Cancer Two week old Neo Bladder – lots of mucus and weird set up?

Viewing 7 posts - 1 through 7 (of 7 total)
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  • #8040
    DaddysGirl
    Participant

    Hi there,

    My darling Dad got a neo bladder two weeks ago. The hospital wasn’t flushing/irrigating it out until we took him back to the ER today. Wow did a lot of stuff come out. The most amazing nurse took so much time to get the mucus out. We said it looked like a lava lamp…. or maybe 5 of them!

    His doctor said once a day was enough but I’m reading online that it should be at least three times? Any advice?

    They have a really weird set up on his foley. The hose comes out into what kind of looks like a plastic bag that is sticking to him and then drains into there, and then into the tube and the big bag. They did this when the main tube was blocked (wish I had known then to get them to irrigate it). He was having a problem with leakage from his foley. Poor guy was wet and leaking all the time.

    So to break it down… bladder to tube, tube to bag that sticks on him, which drains into smaller tube (that some times pops off because they aren’t a compatible size), that drains into bag. Is there a better option? Even if the main bag tube was a smaller size to fit into the weird “stick to your stomach bag” it would be easier? Right now we have to tape it a million times so it doesn’t fall out.

    It is hard to get him to drink water but maybe you folks could give me some advice about that…. he is normally so happy and positive but this getting to him.

    Thanks for all your posts. I really appreciate your positivity and opinions.

    xoxo

    #17182
    DaddysGirl
    Participant

    When I said Foley I mean suprapubic!!! I confused the two of them!

    Thanks,
    xo

    #17183
    Gord
    Participant

    Hi, first of all, great that you are coming to this site for advice, support and encouragement, you will find all of that and more from people who have been where you are.

    I got my neobladder 9 months ago, last June. That set up does sound strange, but I remember having a similar set up when I was in the hospital. They had an ostomy nurse who was a great help in getting the right fit for that bag and tubes, so that it did not leak. But they took that off when I went home. So I went home with both a foley and a suprapubic catheter. Both with drainage bags. We flushed them both out twice a day. I had those for about two or three weeks, then they came out.

    I have had and sometimes continue to have a lot of mucus buildup, Twice after my surgery, about 6 and 9 weeks after, I ended up back in ER/hosp with an infection caused by retention, which was caused by mucus buildup, which was caused by not drinking enough water. That was a big adjustment that I am on top of now, as I had not been a big water drinker prior. I drink at least 2 one litre containers of water each day (I have one sitting on my desk at work and it goes where I go, as it is easy to forget to drink during meetings etc) PLUS I drink water at meals, plus other drinks along the way = 2.5 – 3.5 litres a day? That is important for me as I produce a lot of mucus, and the design of my neo leaves me prone to retention. So drinking water will have to become the new norm. I started to buy spring water because I like the taste better than tap water, and it helped me drink more.

    Remember, these early weeks are the hardest, sometimes really hard, but it gets better! With each step forward and little change there is an adjustment period, both physically and psychologically – hang in there with your dad. It’s good to have a cheerleader, coach and accountability person by one’s side during this. I can’t imagine having to do it alone. And keep coming back here for help from these fine folks.

    Gord

    #17185
    Gord
    Participant

    Your comment about the lava lamp was hilarious. Didn’t catch it the first time I read your post. As you are discovering, a positive outlook and a sense of humour will go a long way to getting you through this.

    Gord

    #17186
    Greg
    Participant

    Welcome to this brave, neo world. I was the proud recipient of my neobladder just over three years ago. The Foley catheter drained urine from the penis into a leg bag or a night bag, depending on the need for capacity. The suprapubic catheter (also called a Malecot) drained into an abdominal bag on the left side. In hospital there were also two stents in that bag, but they were removed prior to leaving the hospital. Both in hospital and when i got home i irrigated the catheters every four hours without missing one time day and night. That was the protocol ordered by the surgeon who has done so many neos that I’m sure he has lost count. Every irrigation (with proper saline, NOT with tap water) flushed out mucus. There is a proper way to do it and you should be shown exactly what to do and how often every day until the catheters are removed. Not sure if his doctor has another protocol for some reason but it might surely be worth a discussion and a chat with someone who deals with this a lot, like an ET nurse (stoma). I am not a doctor; I can only share my own experience. But the frequent irrigations were an essential part of my routine and recovery. No wonder the catheters are leaking; they are probably plugged.

    I recently had the misfortune to have another Foley catheter in for three weeks into my neobladder. It plugged about every three days and I was forced to irrigate it again and again. When unplugged, it did not leak. When plugged, it created unwanted puddles and piddles!

    I’ve never been a big drinker, especially of water. I have become a bigger drinker, though nothing to compare with Gord’s claim to 3.5 litres per day. I tend to drink tea and the odd coffee in addition to water at every meal and sometimes in between. Getting a neobladder requires some discipline in order to become continent when the catheters come out and also to have a good intake of fluids. You can help by gentle reminders and cheerleading.

    The catheters will soon come out. If he is like I am, that won’t be a minute too soon. In the meantime, drink, irrigate frequently and get some professional counsel from someone who knows about the practical and appropriate after-care needed following such surgery.

    And keep us posted. All the best.

    Greg

    #17187
    Anonymous
    Inactive

    Hi,

    Like Greg, my hubby, Mike’s surgeon had us irrigate every 4 hours. I was shown how to do it by the urology nurses before we left the hospital and they made sure I had the procedure down pat before heading home. Also, like Greg, if we were not faithful in irrigating, the mucous would build up and plug that catheter…not Mike’s idea of a good time. I am not a doctor either but when I asked Mike’s surgeon if there was such a thing as too much irrigating/flushing his exact words were “flush away”.

    As for the drinking part, well, Mike too was not a lover of water and so we found ways of getting him to drink more like adding Crystal Light or Mio to the water so it had more flavour. He also found if we played silly little games like whoever can drink their drink faster wins…it went down a little better. Competition! It worked for us. There usually was a little prize like a special treat or something. Hey, whatever works I say.

    I do hope you get some help with this and I would certainly advise a chat with his urologist as soon as you can.

    Best of luck and know that we are here for you. Tell your Dad to hang in there…getting used to a neobladder is quite an adjustment but it can be done.

    Monique

    #17241
    DaddysGirl
    Participant

    Thanks so much to all of you for your compassion, advice and support. I feel like I know some of you because I’ve read so much about you.

    My family was delighted to know that there were complete strangers out there willing to help. It warmed my heart and brought a joyful tear to my eye. Okay maybe more than just one….

    Last week about two days after being admitted for having a hole in his neo bladder a package arrived at my door. It was a ‘hug’ from BCC. My dad promptly asked me to display the card for all to see and to replace his hospital blanket with his new quilt. He brags about it to all the nurses. It couldn’t have come at a better time to lift his spirits. Not to mention it does look great on the bed.

    Thanks from the bottom of my heart.

    Emma

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