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Unhappy with ileal conduit
New to the forum, male great shape it has been 6 weeks since my surgery, I don’t like my choice I made, I should have gone with a neobladder, but I did not do enough research, I guess I was in shock. I don’t like the ileal conduit or bag. I want to go to Indiana pouch but not sure. Doctor says he can do that after 2 years. the Stoma Nurse being was very against neobladder and kinda scared me. But I wanted to get to my kids and wife as fast as possible, made a bad decision for all the right reasons!!
any input from anyone would be great, if this is the right forum.
Bladder Cancer Very Very aggressive, They think they got it all, CT scan negative now PetScan tomorrow.
Or you can send me to the right forum at a loss right now.
thanks, Chris
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15 Replies
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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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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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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 -
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 -
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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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 -
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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Ange, exactly what were your results?
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator -
I am happy to,read your article. As I am also, new to this. Just had biopsy of my TURN operation. We traveled to Cleveland clinic last week for the surgery, 5 hours away. Today’s results were not good. I also need my bladder removed. I do not want to go with BCG because does not sound good results. I am aggressive and high grade tumors. Just starting to educate myself on the different ways to urine.
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Chris, Bob and Sara;
My first post and also a virgin in the Bladder cancer family. Just received biopsy report after TURBT and it appears I got a two-Fer, Urothelial carcinoma and high grade in situ, not in the muscle (so non-invasive). Thanks for your initial post Chris, I am making that same choice added to immunotherapy (BCG) possibility and like you, I am pretty active and intend to stay that way, skiing – boating – golfing. 62 yrs. young and VA Sacramento (Mather) is my primary care provider. Urologist that did the TURBT suggested the “play book” said Early Cystectomy but seemed enthusiastic about BCG now that some is available. With the high recurrence rate of this cancer and the prospect of multiple regiments of BCG I am leaning towards getting the cancers out asap and trusting UC Davis to whip up a nice neo bladder for me. Not crazy about the idea of removing original equipment organs from my body but I have seen too much cancer in my life to really want to mess with it. The exact issues you raised are my concerns about conduit and/or pouches. I assume the doctors involved in your care understood your activity level? Is there any creativity/customization that surgeons are willing to do in the industry or is it pretty standardized? Participating in a forum like this is new to me so forgive any faux paux on my part. -
Thanks for all your info chris. Very helpful. I am 79 and just got the pouch/stoma. Hoping to find a new normal.
Bob -
Pando40,
I don’t like the constant pull, on your stomach, the changing of the bag, the leaks,
Can’t sleep on my stomach. The pouch is made inside your body but you still have to drain it, that has leaks too.. for me being so active and movement. Neobladder is made inside your body, you teach yourself when to go, that has leaks too but you go normal, I rather wear depends until trained. For men who are in good shape and like their bodies, I think it’s the best. Just do your homework. You can go from neobladder to bag but not the other way. I should have bet on myself and surgeon..but It just been 2months running and hitting the weights and just being me with an extra piece of clothing. Think about how much products you need for each type ileal conduit, pouch or Neobladder.
Chris -
Whet is an Indiana pouch? Why are you unhappy with your choice? You did not mention
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Sara,
Thank you for responding….!!
Chris
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Hello, Chris! First, you may notice that I moved your post to its own thread, in a place where more people may see it. Second, congratulations on the news that it appears that they got it all!
So sorry to hear that you ended up with a diversion that you feel does not suit you. It seems that in many cases the urologists do not do their best to match the diversion to the patient.
Please remember that we are not doctors here, so take our advice accordingly. If you are really convinced that you need to change your diversion, you should seek out a major center that specializes in bladder cancer diversions and request a second opinion. This would be complicated surgery and you want a place that handles such cases. Not knowing where you are located, I would just suggest as examples the University of Chicago, USC, Stanford, MDAnderson, Johns Hopkins and Memorial Sloan Kettering. There are others…..you might want to inquire via telephone conference or email to get started.
Good luck
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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