Need Advise on How to Keep Pouch From Twisting

13 years 6 months ago #33717 by mmc
That's a good point too. I forgot to mention that I buy 18" extension hoses to use with my night time catheter bag. That way I can just toss the bag on the floor instead of trying to hook it beds or night stands. Most weeks of the year I travel on business so I never know what the hotel room will look like. The extra hose gives me more room to move without problems (most of the time).

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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13 years 6 months ago #33712 by harleygirl
Replied by harleygirl on topic Need Advise on How to Keep Pouch From Twisting
Would it work better if the hose that attaches to the night bag were longer? I think you can get a longer hose. My Dad uses a night bottle with a long hose attachment and puts it at the foot of the bed. This allows him to toss and turn.

There is a great group at www.uoaa.org who might be able to help with this issue. You can sign up for free and post your question. Be aware that it is an ostomy site and there are lots of folks with ileostomies and colostomies there in addition to urostomates.

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13 years 6 months ago - 13 years 6 months ago #33708 by mmc
I remember reading where someone with the Indiana Pouch mentioned that they use some tape to tape the catheter hose to their tummy.

I have a neobladder so I don't know first hand. I'm sure others with pouch will let you know their secrets for this because it sure sounds like a common occurence.

I do wear a condom catheter at night with my neo and I have had a few times where the tip of the condom part where it connects to the catheter bag hose gets twisted. That kinda sucks as it causes the condom part to start filling with urine until it eventually starts leaking all over the place before it wakes me up. Doesn't happen often enough to mess with tape as I don't get along well with tape adhesives on my skin generally. I know it's a whole different problem, but it is similar. If it happened to me a lot (more than once every 4 months or so) then I'd research tape adhesives that would work for me, shave my upper thigh and tape the hose to my leg to avoid the problem.

I do use a washable mattress pad under the sheets though just in case and you may want to do that also to handle any accidents.


By the way, welcome to the site. Glad you made it here and you posted a great question. It is one of those that will certainly help others (when we get some answers from other IP folks).

Mike

P.S. Feel free to share your experiences adjusting to the pouch. The more of that type of information that gets shared, the better. It helps others learn. :)

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

Please Log in or Create an account to join the conversation.

13 years 6 months ago #33702 by baseballfan
I am a new member here and have gotten some very helpful information here. I had my surgery on July 19 and am doing well. I have a very supportive husband and family. The problem we can't seem to solve is that when I attach the night bag to the pouch, it twists around when I turn. Needless to say, not much sleep. I have tried the leg band to hold it in place, but that doesn't work either. The bag is a BARD, and the pouch is a Hollister, and an adapter has to be used with the bag. Hopefully, someone here has a suggestion as to how I might be able to solve this problem.
Thank you for any suggestions, and have a blessed day. :)

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