Unhappy with ileal conduit

2 years 2 months ago #57226 by sara.anne
Replied by sara.anne on topic Unhappy with ileal conduit
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
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2 years 2 weeks ago #57710 by DPT
Replied by DPT on topic Unhappy with ileal conduit
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,

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1 year 8 months ago #58342 by RByrd
Replied by RByrd on topic Unhappy with ileal conduit
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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1 month 4 days ago #60756 by RByrd
Replied by RByrd on topic Unhappy with ileal conduit
I also was unhappy with my ideal conduit for the first few months.  The surgery site is fussy and doesn’t conform to all the waxes, strips, barrier creams, etc.  I lad leaks,, bags not staying on, afraid to go anywhere.  Then my urologist referred me to a stoma nurse at UNC-chapel Hill.  She saved my sanity and maybe my life.  She looked at my innie and immediately pulled out a convex one piece bag.  She also introduced me to curved barrier strips.  The convex attachment works perfectly with my stoma.  The company makes bags specific to innie and outie stomas.  I still have once in a great while leaks, but it’s usually because I didn’t empty my bag before it got full and it weakened the seal so that later on I will spring a leak.

Believe me.  I would rather have my bladder.  But I don’t want the cancer so I have accepted the fact that the bag is my friend for life.  I even asked my doctor about an option to attach a catheter to my stoma and let it flow straight to a bag.  Urologists are terrific at performing the life saving surgery we need.  Unfortunately they are not experts on adjusting to and living with the bag.  All hospitals that have surgeons performing these surgeries should be required to have at least one full time knowledgeable stoma nurse.  

So . . . Hang in there!   This break-in phase will pass!

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