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Unhappy with ileal conduit

4 weeks 10 hours ago #58342 by RByrd
Chris, sorry to hear you are struggling with being okay with the ileal conduit. At the end of six weeks, I also was very, very disappointed with my Ileal. After 6 months it was better and by the end of the first year we were moving along happily. Since the 6 month mark, I have never altered my plans and can do anything I am physically able to do with my 62 year old body. It’s now been 5 years. The first six weeks I listened to stoma nurses and experts from many supplier companies as I experienced gushing leaks. None of it really helped. I even bought adult diapers to forestall whoopsies. But - after your surgical area heals and forms its natural bumps and curves, it will be much easier to find the right product and be comfortable using it. I have an innie, so I found a convex flange and some curved barrier strips and wear a two piece bag with confidence. At this point I would wear a one piece also if necessary, but I’m happier with the two piece. Give yourself some time. Scream at the thing! You will be okay!

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4 months 2 weeks ago #57710 by DPT
Hello,
I am in Cleveland and am looking for a second opinion, may I ask what doctors you are seeing at CCF and If you would recommend them? How long did you have to wait to be seen?
Thank you,
Nancy

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6 months 2 weeks ago #57226 by sara.anne
Just a quick comment.....a choice of which diversion to request is a highly personal one. You may make a choice but when the surgery is underway the urologist may discover that an individual's situation may make that choice impossible, with an ileal conduit being the only possibility.

As many people have posted under other threads, the MOST IMPORTANT THING is the expertise of the surgeon. You should pick one who does many of the procedures a year.....25 to 35 if possible. We have seen many examples where a patient is told that the ileal conduit is the only diversion appropriate for that patient, when the reality is that this is the only one that surgeon is competent to do!! There is a reason that many patients seek second opinions and end up having their surgery "elsewhere."

The Indiana pouch is well and thriving on the West Coast...maybe not at VA Hospitals. I know multiple people who have this diversion and have had no unexpected problems. It does require an experienced surgeon, as does the neobladder which is even more complicated.

Neobladders are great...when they work. For anatomical reasons, they are more problematic in women while men tend to have much more successful results.

So much for my "brief" comments!!:laugh: Crusher, looks as if you have done your homework for the best personal choice for you. Others' mileage may vary.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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6 months 2 weeks ago #57220 by Crusher
Urologists at the VA in Sacramento are telling me that the Indiana pouch procedure is almost extinct in the Western US due to so many valve issues. I have definitely decided to go with the Neo Bladder procedure, get this cancer out of my body and quickly! BCG seems like a long term commitment to never ending procedures and with the constant shortages you never know if it will be available. Hours of research, two Urologist opinions and a good friend that is a cancer researcher have been unanimous in agreement that due to wide spread high grade in situ, this is right for me. I’ll keep posting with updates throughout - this forum has been really valuable to me, thanks for the support and opinions!!

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6 months 2 weeks ago #57218 by sara.anne
Sorry to hear that...had hoped for better

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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6 months 2 weeks ago #57217 by Ange
Agreesive, high grade tumor. Invaded lining but not muscle wall. But afraid it may invade muscle wall, so wants to remove bladder, lump nodes, female organs. And soon

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