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About the bag v. the pouch...

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  • About the bag v. the pouch...

    I am not about to get either, but after a year and a half of constant discomfort and almost every conceivable failed therapy I need to have an end point, at least psychologically. And when I weigh these options in my head my inclination- even though I'm young (32), physically active, etc.- is to go with the external bag, as it seems least likely to cause more problems. And at this point in my life, the last thing I need is more problems.

    My main concerns about both options are as follows (although keep in mind I am leaning toward the external bag):

    1. The external bag- My main concern is the obvious one: body image, hassle factor, clothing, etc. I tried to look at images on the internet but couldn't bring up anything concrete. I am also wondering about sleeping at night, as well as possible complications. Part of my grand strategy, considering my young age, is to get the bag for a decade or so to hold me over until the growing of new bladders from your own cells becomes available (the technology has been in place for a long time, but the process has to be FDA approved before we can access it). Again, my overall guiding strategy is to avoid further damage to my body, and impact other systems the least.

    2. Internal pouch (either neobladder or catheterizable)- My main concerns here are the impact on the digestive system (considering the amount of bowel tissue they need to use to construct the pouch) as well as the deficiencies in calcium and vitamin B12 that frequently occur in those who have undergone this procedure. I had anorexia as a teenager (which puts me at a higher risk for osteoporosis), so the calcium deficiency is most problematic for me me.

    Any insight or advice that anyone has on any of this would be GREATLY appreciated. Thank you! Be well!


  • #2
    external pouch

    lola; i had my bladder removed in 2000.i have the external dr. recommended tis one. back the i didnt have the internet so i was pretty lucky can do all sorts of research and ask questions on here..i was 44 and very active also.i had no problem excepting the bag asmy nxt best friend. to be honest. it did change the way i dressed. i know some it doesnt but i could not wear my tight jeans ect any more with out being self i just changed my became so natural for me after awhile.i forget it is even there unless it get too full before i can emty it..its a breeze now..and my medicare now lets m ordermore bags so i can take showers more often and not worry about leaks..thats one worry i guess internal doesnt have is taking baths and swimming when they want?id just really do is asa very very last resort..if you at all can hang in here ..there r more new meds oming out every day to help with the pain ect..and as ine did..some timesthe pain comes back..
    dx'd i.c in 96,too many treatments and meds to remember before badder removed in 2000.pain returned..has since been on roller coster of narcs ad other things..3 suicial att..went into hosp to withdrawl from sooo many narcs and wt. got down to 85lbs....came out eating small amounts ad keeping them down..the only pain med was ultram 50mg q 6 hrs..and gabapintien sorry..can spell..600 mg q 6 2003..nowin 2006-ive had mesh pulled from myvaginal walls 3 timesso pain is severe again but also in rectum now..had to add hydro/app q 4 hrs.!!!but i still pray there is hope..i just need o find it.


    • #3
      Lola, I have had both types. I started off with the ileal conduit- the external type and for me it was not easier. I had lots of infections with it. As for night time sleeping you need to hook yourself up to night drainage which involves hooking the pouch up to tubing that then feeds into a bottle on the floor by the bed so you can sleep through the night without the pouch getting too full and bursting. You should also know that once you get it done there really is no going back- it is not a temporary thing. It is an easier op for the surgeons to perform and the recovery time is usually less.
      I have had my internal pouch now since 1992 and I love it. It is less expensive to care for, I don't get as many infections. It is also easy to care for- I have fewer problems with my skin around the opening. I do not have to hook up at night and I sleep through the night.
      The main thing is to let your surgeon decide when he/she does the surgery what will be best for you. I had my bladder removal done in 1986 and I was 30 at the time.