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Can you tell me about Bladder replacement options

9 years 8 months ago #36160 by Patricia
same with me Sara....i even have to put the non-latex bandaids on at different angles each time as even that bothers my skin. One reason i did not choose the ileal.
pat
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9 years 8 months ago #36153 by sara.anne
I am a long way from needing a bag of any kind (FINGERS CROSSED) but something that has happened in the last few months brought to mind a question. Does anyone with an ileal conduit have a problem with adhesives?

I have had several small foot and dermatological procedures lately and seem to have developed a real reaction to any kind of adhesive, including plain band aids. After about 24 hours the whole area goes to blisters.

What would happen if this occured when you had to use adhesive for a bag?

Just wondering....

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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9 years 8 months ago #36142 by Babsiebob
Mike
Do you know about the eakin seals for your wafer? With them you don't have to worry about leaks at all. They are great. I am 71 and had my surgery at 69, I did not find it easy, I guess because I had a lot of complications but I wouldn't trade my bag for either of the other options. Glad you are doing better now.
Barbara

Dx 4-28-08
pT3a no mo
Rc with Ileal Conduit on 6-09-08
2nd surgery on 6-27-09 for ureter leak
Renal failure on 7-01-09 nephy tube and then stent on 7-09-09
so far so good
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9 years 8 months ago #36139 by motomike
Alan
Rayn
You are right to ask questions here now and then your questions to your surgeon will be better and more to the point. We know things even your surgeon does not. I did not discover this wonderful site until I stumbled around in post surgery darkness. I just didn’t know what questions to ask my surgeon. I did not know for instance that the bag (ileal conduit) would not stay stuck to my skin for 2 weeks. HA! This was what I was trying but of course it leaked. I started lurking here and a guy named Jeff said he changed his bag twice a week. His simple statement created a whole new and vastly more secure world for me. Leaks immediately became very rare.

The ileal conduit (IC) is one of the simplest approaches to urine diversion and I understand the surgery is easiest on older folks. I’m only 70. The penis is not used and I’m sure that is why it is not popular with younger males who still have their prostrate. I have a Stoma that peaks thru my stomach wall just to the right of the belly button. The stoma is red and looks much like a small strawberry. The small plastic bag sticks to the skin (like a post-it note) over the stoma and collects urine. Have your surgeon show you a bag (called an appliance). I’m retired so empty my bag often via a small facet at the bottom of the bag. I was sort of kidding about writing my name in the snow but if need be I can! The fact is of course the penis is not used at all. This takes a bit of mental adjustment and probably varies from one person to another.

My surgeon was puzzled that I had no problem accepting months of keymo and then radical surgery but resisted a simple stick-on bag. I am only now (8 months after surgery) able to ignore it for long periods of time. I guess that I had been blessed with a very healthy life so dealing with something medical daily was difficult for me.

I'm 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010
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9 years 8 months ago #36122 by Babsiebob
Hi Alanjay
My pouch is to the right of my belly button. It has no effect on my clothes at all. I can even tuck my blouses in if I want to. I do wear a light panty girdle just for support. I use coloplast wafers and pouches and I get them from Edgepark. They tell you how many you are allowed at one ordering. I change my wafer and pouch twice a week. You do not have to reuse them. I empty the pouch when it is about half full. There is a plug at the bottom that you open and drain it in the toilet. At night I use a night drainage bag, like a foley cathater, and I don't have to get up at all. I hope this is helpful to you

Dx 4-28-08
pT3a no mo
Rc with Ileal Conduit on 6-09-08
2nd surgery on 6-27-09 for ureter leak
Renal failure on 7-01-09 nephy tube and then stent on 7-09-09
so far so good
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9 years 8 months ago #36119 by BillM
Hello alanjay!

Glad to see you’re digging in and getting more information. Maybe you can check with your insurance on supplies? I’m guessing it would be asking for coverage on catheters and/or ostomy bags. Maybe some that use these can chime in with better descriptions and brands for supplies. Early on, my doctor went over all three diversions and where stoma’s were wanted because there were no guarantees until the surgery and she could see everything. And for you guys out there with the ileal, what kind of surgery and recovery times?

Bill

5.24.10 Final staging T2G3 7.28.10 Started Gemcitabine, Cisplatin neoadjunctive chemotherapy
11.2.10 RC with NEO 11.18.11 First year CT shows possible liver tumor
12.8.11 Confirmation of TCC BC mets to the liver 6.27.12 Final round of Dose Dense MVAC
7.26.12 Final scans showed no tumor or no...
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