Home Forums All Categories Muscle Invasive Bladder Cancer brand of outside pouch

  • rah

    Member
    August 31, 2007 at 2:39 pm

    Thanks for the tip Texan.
    When I start jogging and bike riding, if I start having sweat induced leaks I will remember the Surgical Adhesive Spray.
    Heck, for that matter any consistent leak I will remember your tip.

    Six Year Survivor – what a battler :D
    Rick

  • Texan

    Member
    August 30, 2007 at 10:13 pm

    Re: Leaks
    Once my husband recovered from the surgery and was working again, he had frequent leaks. He’s a farmer and works outdoors a lot and the sweat would make the wafer come unstuck. To solve the problem I bought some Surgical Adhesive Spray and that fixed the problem completely You’ll also need to get some Unisolve pads to remove the adhesive residue when you change wafers.

    The cancer had an aggressive profile and the doctor said we’d know within two years if he was cured. Thanks to God, so far so good. My husband is a six year survivor. My best to all fighting this battle.

  • rah

    Member
    August 30, 2007 at 9:02 pm

    I appreciate the well wishes.
    I had read about having the Chemo before surgery and knew that statistics for survival are increase with pre Chemo (I keep telling myself not to look at stats). My doctor did two TURBS and both biopsies showed that the cancer was not in the muscle wall yet. But those dang cells figured a way in the two weeks before last TURB and surgery to get not only into the muscle but outside the muscle.

  • New2This

    Member
    August 30, 2007 at 8:10 pm

    To Martha – I have sent off for a Cymed sample, so he will try it out.

    Rick, best of luck on your chemo. If things go as planned, my husband will be having his in Sept too. I’m wishing/praying for you both to have no bad side effects!

  • mike

    Member
    August 30, 2007 at 7:57 pm

    Rick I wish you luck with your chemo I thought you already had that done. This is where I was glad I went with my surgeon since the cancer was contained in the bladder to do the pre-op chemo first then the surgery and now I am done with it. It seems to be Week6 where the chemo kicks in and starts taking its toll. I was told this from my Oncolo’s nurse and she was about right on the button. you really just don’t realize how it really wipes you out I was more tired then anything and I could live with that better then being nauseous all the time but there too I had my days and the competzine worked ok for me there are others like Zofran but they cost $35 a pill and my Ins Co (Keystone65 ). would only give me 6 a month so I saved them for the real bad times. But b4 you know bingo your done and just hope the chemo did its job good luck. Joe

  • rah

    Member
    August 30, 2007 at 7:37 pm

    Paula,
    Your husband’s surgery sounds very similar to mine. In for a NeoBladder out with an urostomy bag. My surgery and recovery went smooth. Now I get to start my Chemo in September. I am hoping the butt kicking isn’t a part of it. If it does start kicking my butt, I will rely on input on how discomforts were minimized.

    Anyone going back to a work wearing a Urostomy bag my suggestion is to have a plan in case there is a leak. Not only do you have to worry about the wet showing, you have to worry about the smell, and a comfortable place to change.
    I only had one day when I leaked at work. I work for this big aerospace company in the Seattle area. I bring a change of clothes and all the ‘stuff” I needed for a urostomy change in my trunk. Only thing is that there really wasn’t a place to change in comfort. Since I needed to shave, I ended up going home (25 minute drive each way). I am coordinating with my management to work with the company medical facility to see if I can use one of their rooms if I need a quick change.
    Rick

  • Bens_paula

    Member
    August 30, 2007 at 6:54 pm

    my husband was sent home from hosp. with hollister brand, and we called all the other companies and got free samples of all sorts..he still uses the hollister, but is beginning to have leaks frequently. his ostomy is only 2 months new, and changes shape and size almost daily! he uses the 2 piece systems too, and only has to change wafer about every 4 days and changes pouch every 3 days. he went into surgery expecting a neo-bladder, but when they saw the nodes full of cancer, gave him the ostomy instead and is now undergoing chemo. he recovered fairly quickly from the operation, it lasted 7 hours, but the chemo is kicking his butt!! he is very anemic at the moment, but getting a transfusion in the morning, so i expect he will feel much better then…
    good luck and God bless!!
    paula

  • martha

    Member
    August 30, 2007 at 11:47 am

    Have you tried the Cymed Microskin pouches? I tried nearly every brand after my surgery in October 2006. While I was inactive, the Convatec and Hollister seemed to work but, the more active I became, the less they stayed in place. Cymed is easy to apply and stays on really well. Have only had two leaks since I have been using them and those were due to application error. They are a little more expensive but well worth it to me.
    Martha

  • New2This

    Member
    August 29, 2007 at 4:37 pm

    Thanks Rick, I’ll print this out for my husband.

  • rah

    Member
    August 29, 2007 at 3:28 pm

    I went through ten different types of Hollister skin barriers and only two pouches.
    I found three types that I really like (I chose the one that was the least expensive to my insurance company and myself). I use the two piece. I press down on the skin barrier to insure a seal before I connect the bag.
    My skin barrier last 4-6 days. I now change them after 4 days because the hair growth starts to itch real bad after day four.

    For me besides the sticking of the skin barrier, there are two other factors that were important to me: 1. how big the skin barrier surface is. I personally like the smaller pads. The larger surface covering barriers causes me to shave more area (this provides more area for itching as the hairs grow back), and overlaps into my belly button. 2. The fuzzy surface on the outside of the skin barrier. I lightly scratch, especially at night, the soft outside surface of some pads create this fuzz. It bugs me.
    The bag I chose has soft surface on the back, but soft plastic surface on the front (so no fuzz produced). Since I found what I like from Hollister, I didn’t need to go to any other company.

    I called Hollister and talked to one of their people. This was a great help. Now if I have any questions, I (really now it is my wife that calls) we talk to the person that is familiar with my case. Hollister sent me three samples of every kind because I asked.
    I went to my Urostomy Nurse three times after surgery to test fit the barriers. What we found is since I was loosing weight, one type that didn’t leak for the first couple of weeks now leaked.
    Good Testing – Rick

  • New2This

    Member
    August 29, 2007 at 1:47 pm

    Thanks for the info and we will check it out.

  • clur

    Member
    August 29, 2007 at 12:26 pm

    hi
    After a bit of trial and error I get on really well with Convatec esteem.I use their one piece system its a bit less bulky and seems to stick really well.Most supliers will send you free samples to try and I must admit to trying just about everything on the market before settling with this.
    My advice would be to get on the websites of the various manufacturers and to have a play about to find out whats best for your husband.Lots of them have great free support lines which I found really helpful.
    Good luck and try and stay patient there will be the right system there some where
    Love Claire x

  • wendy

    Member
    August 29, 2007 at 12:03 pm

    Hi,
    From my understanding a good bit of trial and error are necessary to find the correct fit. Convatec is the other big distributor aside from Hollister in the US, check their websites out for ideas. Maybe a follow up with a stoma nurse could help, too. Hopefully you get more ideas here, but if not you could consider joining our email group, there’s been a lot of discussion about pouches lately.
    Wendy

Sign In to reply.