• Alsimons

    Member
    May 23, 2010 at 8:45 pm

    Interesting Jeff. I have to wear long pants at work and wear my leg bag from the knee down. Like you I wear shorts when off duty and empty as needed. At night I connect to the overnight bag and have just recently spent a wonderful 5 hours straight sleeping which I haven’t done in years.

    As I mentioned earlier……I am a happy camper.

    Al

  • Jeff F

    Member
    May 23, 2010 at 8:25 pm

    Yes, I can do an emergency repair in 10 minutes flat now. I am pretty religious about changing within 4 days. Some guys go longer, but that is just me. I drove 4 hours to a meeting, pulled up to the hotel and ‘whooosh’ it bottomed out. It was a scramble, with wife helping, but I made the change in the hotel lot and was ready to go in 10. I have leg bags, but have never tried them. I might on the next trip, except I am usually in shorts and it extends down to my knee.


    BC diagnosed 01/2007
    Cystoscopes and Miomyacin in 2007
    R/C ilial conduit 04/27/2008
  • Alsimons

    Member
    May 23, 2010 at 5:14 pm

    No I have the adominal bag which connects to the leg bag. My job requires me to sit in many meetings. At times they can get rather lengthy and back to back. Since I drink a lot of fluids the leg back gives me greater capacity. Before I started using it my abdominal bag would get full and pull a bit. Also I find the leg bag easier to empty as I do not don’t have to unzip or worry about drips.

    Plus driving to the SW Florida Bladder Cancer Support group which is about 250 miles away means I don’t have to stop….round trip.
    Unless of course the wife is with me. :blink:

    I believe you will find it is personnel preferances as a lot of others don’t use it.

    Al

  • Jillo

    Member
    May 23, 2010 at 4:50 pm

    Al, i’m just curious. Do you wear a leg bag all the time? Is there a reason you don’t wear the abdomen bag?

  • Alsimons

    Member
    May 23, 2010 at 3:04 pm

    Yes Jeff I forgot to add that. I now carry a Man bag around with me that has a everything I need for a emergency change. Did have one accident at work when I went to empty the leg bag and when I pulled down the sock it opened the drain valve. Ugh went home and got clean socks and shoes.

    Al

  • Jeff F

    Member
    May 22, 2010 at 11:51 pm

    It’s been over 2 years and no infections or problems yet. Only problem I have is letting the bag go too long. I keep a change of clothes with me with wipes, new bag and seal, powder, at all times!


    BC diagnosed 01/2007
    Cystoscopes and Miomyacin in 2007
    R/C ilial conduit 04/27/2008
  • Jillo

    Member
    May 22, 2010 at 2:56 pm

    Wow Al, you did all this just 10 weeks after surgery? That is awesome. I like the thought of that. :)

  • Alsimons

    Member
    May 22, 2010 at 2:45 pm

    Jillo;

    Just got back in the house from digging up the yard getting ready to replace some of the sod. Took a quick dip in the pool. I am doing everything that I did pre-rc 10 weeks ago. The Ostomy nurse has been on vacation for the last 3 weeks and will make his last visit today just to watch me change the bag and ensure I am doing everything correctly. I have had no infections and the time I spend making sure the over-night bag and leg bag are kept clean has just become part of the normal routine.

    Wishing you all the best

    Al

  • Jillo

    Member
    May 22, 2010 at 1:39 pm

    Hi Jeff,

    I haven’t ruled out the Ileal conduit yet as it looks like the easiest and fastest recovery time. I don’t like the thought of the complications that I’ve heard with the Indiana and Neobladder plus the time it takes to train and maintain it in the beginning months. I know the Ileal isn’t without complications either, have you experienced any infections or problems?

  • Jeff F

    Member
    May 19, 2010 at 9:00 am

    You might look for Rick, he will probably add his experiences. He is in his early 50s I believe, and runs marathons, et cet very active with his Ilial Conduit system.

    I got my RC with Ilial Conduit 2 years ago. I have adapted to it and though it requires some maintenance, changing every few days and emptying and being hooked up to night bag, I don’t think about it all that much. It is comfortable.

    The good part is no self-cathing like with the neo bladder folks that have problems. At age 64 at the time of my R/C I didnt’ want any complications.

    Otherwise you are the same as everyone else that has an R/C: minus a bladder and minus a prostate.

    Best of luck with that person you are concerned about.


    BC diagnosed 01/2007
    Cystoscopes and Miomyacin in 2007
    R/C ilial conduit 04/27/2008
  • Harleygirl

    Member
    May 7, 2010 at 5:08 pm

    My Dad had his RC at the age of 80 and is now 83 and doing well. I think the doctor that did his surgery only knew how to do the ileal conduit, but due to his age, I’m glad Dad got that type of diversion. I say this because I don’t know what his ability to cath would be if he developed arthritis in his hands. He changes his “appliance” (wafer and pouch) twice a week to help keep down the risk of infection. Actually, my 80-year-old Mom does the changing for him. Dad can, and has, done it for himself, but Mom insists on “helping out”.

    It was rough going at first as Dad had a few leaks, but soon figured out how to prevent this from happening by the use of Eakins seals to fill in any “dips” in the area around his stoma. He uses a Hollister two-piece system and wears an ostomy belt as he feels it helps keep things sealed. He empties his pouch every two hours or so or as needed before it gets more than half full. The more liquid weight, the more it pulls on the wafer.

    You can’t see the pouch under his clothes and he wears suspenders to keep from putting a belt across the stoma area. It is all becoming second nature to him and his “new normal.”

  • Alsimons

    Member
    May 7, 2010 at 12:50 pm

    Jillo

    I may be the first to answer but there are so many others that have more experience than I that will most likely be able to provide better answers. I am now 8 weeks post RC (Ileal conduit) and the last 4 weeks have been the best I have had in 2 years.

    I wear a Hollister 2 piece combined with the Eakin cohesive seals which was recommended by my ostomy nurse after a couple of minor leaks within 5 days of changing. I have now returned to my scheduled changing of 7 days. There are some who I talk with that get up to 12 days between changing. Right now I’m still a little bit new to be testing the water…so to speak. This last Wednesday in our support group I met a 83 year young man who has had his for 30 years and I quote “ I can’t remember any other way to pee.”

    After my surgery my stoma was 41 cm and has now shrunk to 29 cm but looks like a football so based on urging from my fellow BC friends it is now called Wilson. Due to underlying medical conditions robotic surgery was not recommended and perhaps extended the healing process. None the less I am writing this to you as one happy camper and hope it helps you in some way.

    All the best

    Al

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