skip to Main Content
BCC_Discussion-Forum-Page-Header-new

IMPORTANT: The Bladder Cancer Canada discussion forum is not a substitute for professional medical advice or treatment. The opinions & contents in this forum is for information only and is not reviewed by medical professionals. They are experiences & opinions of patient members like you, and is NOT intended to represent the best or only approach to a situation. Always consult your physician and do not rely solely on the information in this site when making decisions about your health.

Homepage – Forum Forums Muscle Invasive Bladder Cancer 5 weeks post RC, and i have questions…..

Viewing 6 posts - 1 through 6 (of 6 total)
  • Author
    Posts
  • #8527
    janine
    Participant

    so, i”m 5 weeks post RC, been home for 3. i have an ostomy bag now, and i’m trying desperately to navigate this new world.

    i have a few questions that i’m having trouble finding answers to:

    my urine output is HUGE. it is rare to make it a full hour without having to empty (i only let it fill halfway because of the weight of the bag). overnight, the night bag collects AT LEAST 1.5 litres. to me, this is a lot of fluid -> i don’t drink that much during the day! does anyone know if the output calms down after a while?

    my second question is about clothing and support. i have read that people wear their skinny jeans and normal clothes with their ostomy. how?? my bag fills up so quickly, i don’t have a hope of wearing anything without stretch. this upsets me – primarily because i wasn’t planning on replacing my wardrobe.

    i am active – to give you an idea of size, i’m 5’8 and 138 lbs. i am not big. i am desperate to get back to running – but have no idea how to support the bag in order to do this. anyone active here? last night, i went on a very strong walk, and had to come home because the bag filled out and became uncomfortable before i was ready to finish my walk 🙁 i am having a tough time thinking of solutions.
    if it’s easier, i can create different posts for the different questions!

    #21822
    KIOWA
    Participant

    Really sorry about your adjustment difficulties. I have not had an RC but I am. Somewhat familiar with them. I’m not sure why your urine output is presenting. Those problems. Do you take any meds like Lasix? What was your urination frequency prior to the cancer and RC? If you are not drinking a lot you may be getting a lot of water from foods that have a high water content. Do you consume a lot of salt? It may help if you use less restrictive clothing and let the osteomyelitis bag fill more. Just my thoughts. Good question for your urologist.

    Kiowa

    #21824
    marysue
    Participant

    Hi Janine!

    Wow! Back to strong walking 5 weeks post-op. That is amazing. It took me more than 6 weeks to get back to normal after the TURBT, never mind doing a radical cystectomy surgery.

    I haven’t had to do the outside pouch surgery but suggest that you PM some of the members on this site that have the pouch. GerryW is one of them. He does use some kind of support belt because he does lifting at work. Whether that would be the correct item to help, I’m not sure. If you don’t get an answer on the site I suggest that you call the BCC toll free number and see if you can be connected with someone that may have had the same issue. The other thing I suggest is contact any ostomy society/support group/hospital clinic in your area and see if they have any suggestions for support options and clothing adaptations. Medical supply stores that sell the pouches and associated equipment may have something as well.

    The one clothing option that comes to my mind are the yoga pants that Walmart sells. Some of the styles have a large fold up/down stretchy waist band. Maybe the waistband could act as a support and you could tuck the pouch inside or be used in combo with some kind of support belt? These pants usually run less than $20 a pair. I envy you. I can’t get into skinny jeans nohow. I used to weigh about what you weigh but have gained weight the last 4-5 years despite regular exercise. I’m not quite 5’8.

    I agree with Ki, if you feel that your urine output is huge, maybe it would be good idea to run this past your uro, especially if you aren’t on any directics or other meds that cause you to produce more urine than usual.

    It may be just a case of that you are getting better urine flow now that you don’t have any cancer issues slowing your body down. Your kidneys may be just functioning better. Just for reference – a friend of mine whose hubby is a retired radiologist, told me that her hubby said that a bladder can hold up to a litre of urine. Mine can. When I was at the BCG clinic and had to drain the urine after treatment, the nurses used a floor bag because I would have more urine than the leg bag could hold. I often had an output of 700-800ml after the two hours was up. I easily hit the 1 litre mark after 8 hours of sleep. I got curious one time and measured my urine output with an old measuring cup.

    Anyhow, glad to know that you are healing and are out and about. I hope that my suggestions are a little bit of help. Take care and continue to be well. Let us know what you find out. (((((HUGS))))

    #21834
    GerryW
    Keymaster

    Hi, Janine
    Welcome to our community. I have found a lot of great support and advice here over the last couple of years. You can see my detailed ‘diary’ in the post ‘My Journey’ back in the “Introduce Yourself’ topic.
    My initial urine flow was well over a litre overnight while in hospital because of my high fluid intake. Once I got home, I consistently produce about 100ml per hour, 600ml overnight. Output is highest in the morning. I drain my pouch about every 3hrs when it is half full. Everyone is different so you might want to check your high urine flow rate with your uro. I only drink a couple of litres over 12hrs. I also have a leg bag to increase drainage capacity if I am on a long car trip.

    I always support my pouch with an adjustable belt. This also helps prevent it from separating from the wafer, and I think that it may also provide some abdominal support to help prevent hernias because I do some lifting at work, cut wood and lots of work around the house.

    http://forum.bladdercancercanada.org/en/discuss/viewthread/26917/

    All the best on your journey!

    Kingston and the 1000 Islands

    #21835
    KIOWA
    Participant

    Hang in there Janine. All this is part of the adjustment to your cancer free life. Virtually everyone does well with an appliance and live very active trouble free lived. It’s still early in the game for you. Your surgery is very recent you have already made substantial progress. You’ll be fine. Give it time.

    Kiowa

    #21885
    georgett@mymts.net
    Participant

    Hi Janine,
    Sounds like we have had the same surgery. I have had my urostomy bag since January 2017. It is definitely an adjustment but I feel that having an active lifestyle before surgery has probably been significant in your recovery. You are doing awesome in being active not so long following your surgery. Keep that up and don’t let any adjustments slow you down!
    I think that output varies with every individual but remember feeling exactly as you did in that I felt I was always having to empty it. Made me realize how much fluid our bladder actually held, pretty amazing.
    I believe it is beneficial to drink lots of fluid so wouldn’t recommend trying to taper off the fluids. I feel that, over time, I have mentally adjusted to this additional need, ie to empty as required and plan accordingly. We are not the same as we were but we are alive and still enjoying activities with family and friends. That in itself is a huge blessing.
    Also, I have found that I cannot wear skinny tight jeans if there is no room for “give” nor any other pant that is really tight. Fortunately, with all the kinds of leggings that are in style that hasn’t been too much of an issue and they provide quite a bit of support for the Ostomy bag. I actually fold and tuck my bag and place it in my panty and that is very supportive. This does require emptying when half full but I find it much more comfortable to wear and be active without feeling the weight of it. Also, if I wear a dress, I just put on a pair of stretchy shorts underneath and this provides additional support with comfort.
    Wishing you continued success with your recovery.
    Georgette

Viewing 6 posts - 1 through 6 (of 6 total)
  • You must be logged in to reply to this topic.
Back To Top