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Finding info sources for new ostomates.

I am likely to be facing a cystectomy in the coming weeks. I've been reading here and elsewhere a few of the threads, but I have questions about certain details that I'm not seeing online. Foremost, is it standard procedure for the Dr or hospital to counsel patients prior to making that decision, or does everyone have to do their own research?? Several specific questions come to mind: (1) do you somehow get accustomed to sleeping with a hose tangled around your legs? (2) Are certain sleeping positions not permitted? (3) Do bags come in different sizes and shapes to fit the preference of the user -- that is, will I be able to wear jeans or slacks (with or without a belt)? Does the seatbelt in my car run directly over the bag? Thanks for any help!

  1. hi. I am hoping I can help you a littld with your questions. The doctor is responsible for discussing the procedure with you, explaining why it is needed and exactly what happens to allow you to consent to the surgery if you agree to go ahead of it. Additionally you should have a specialist nurse and/or stoma/Ostomy nurse who will explain the more practical side of things such as wearing the bag etc. The night bag is optional. Some people decide to wake up and empty instead. I use a night bag and tubing doesn’t bother me and it allows me to sleep through that night. At first, for approx 3 months, I found I had to sleep on my back, just as was uncomfortable to sleep other ways as I was healing. (I do have two stomas so this did lengthen the recovery.) after that I have sleep back in my side as used to. There is no rules about how you get sleep with a bag. They should before surgery meet with you (Ostomy nurse) to decide where to place the Ostomy depending on how you sit, where clothes sit etc to get the best possible placement. As a female, I do wear pull on slacks as personally I find zips restrict my bag as it fills. You can get support underwear to help keep your bag in place. My seat belt does run over my bay but causes no issues. At first I had a cushion to sit between my bag and seatbelt but was soon not needed. Laura, Moderator, BladderCancer.net

    1. That info is very helpful - thanks! Your comment about no bag at night is very surprising- I thought that draining the kidneys constantly was of prime importance (due to risk of infection). I've been measuring my urine output throughout the day (trying to establish what size bag I might need or how often it would require emptying) and find that 200 ml overnight is typical -- which I assume is typical for a normal bladder. What size are bags? I haven't seen a single description yet that states the capacity - it's so odd! Can most people go two hours (or more) before emptying?

      1. @gnick540 - I am looking at the people who attend our bladder cancer retreat each year and seeing who might be someone who would be a good "fit" for you to speak to. If you are interested I have come up with a couple options. I know them both pretty well. Linda ( moderator. Bladdercancer.net team member)

      2. @gnick540 - Please keep us updated on how things go on Tuesday. We are here for you!! Linda ( moderator, Bladdercancer.net team member)

    2. @gnick540 - Should you have RC/IC, I do have a tip sheet that addresses many of these questions and I would be happy to provide if you message me I personally went to my doctors with many questions concerning the surgery and recovery. I sleep well with a hose as it is flexible and thin. There are several manufacturers of ostomy supplies and they are happy to send you samples and you will have assistance usually from a stoma nurse to help determine what is right for you. Personally I would see what your doctor says first. My best to you. Linda ( moderator, Bladdercancer.net team member)

      1. Can I get a copy of that info? so new to the idea that I don't know what to ask the doctor.
        Many thanks,
        Mark markct63

      2. @Markct63 - absolutely - Please message me with your email and I will send it to you quickly.

    3. Results from my 3rd TURBT two weeks ago are (barely) encouraging. I still have three small high grade tumors but all are non-invasive, so we'll take that as good news. I will likely resume intravesical treatment but not with BCG (since it was only somewhat effective six months ago after six doses). The Dr said I could choose either Keytruda or Gemcitabine. Has anyone tried these? I suppose I could do BCG again, but is that prudent? The Dr said BCG is considered the best choice but may not be the most effective for every patient. I am not confident that anything will eliminate the tumors, but if the treatment merely postpones the inevitable removal of my bladder, I'm happy to live with that.

      1. good you now have the results. You can now start to move forward once you decide on the best option for you. Wishing you well. Laura, Moderator, BladderCancer.net

      2. @gnick540 - Hope one of these works for you. Linda ( moderator, Bladdercancer.net team member)

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