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Homepage – Forum Forums Muscle Invasive Bladder Cancer Concerns with the ’acceptance’ of an ileal conduit and bag

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    Well, in about three weeks i will be having the RC.. with an ileal conduit/bag. While I realize that the choice isn’t there to have it or not.. I still have reservations. I am having great difficulty of the idea of something ‘stuck’ on me forever. (I have a deep seated phobia of bandaids/something stuck on me). I know I have to get over it, but man oh man it is not going to be easy!! Even looking at samples of bags, wafers etc on the internet.. i get very nauseous.
    Some have suggested to get one ahead of time and ‘try it out’. Good idea, but the prospect of that makes me turn green (and not with envy). I have had surgeries before and know I will get over that part.. yet the bag is looming over me like a dark cloud. It’s easy for someone else to say ‘just get over it’. All kinds of things run through my mind.. everyone will be able to see it, it will take me 1/2 hour to go to the bathroom, dealing with having no urethra opening, I don’t want to leave the house once home from the hosp… and so forth. I will probably burst out crying if someone calls me a ‘bag lady’ 🙁
    I do plan to talk to the stoma nurse when I go to the pre-admission clinic, and hope she has some coping mechanisms. (or he I guess)
    To some this is not a big deal.. after all, I will be alive and without cancer [crossing fingers], so who cares what I have to do to get to that point. To me.. it IS a big deal.
    Any comments are appreciated… and thank you!
    ‘anxious in calgary’


    Mayre: Phobias tend to be irrational so trying to understand them is not particularly productive, I suspect. However, learning to accept something that causes fear or anxiety is productive – and in this case absolutely imperative. I wonder if you should get in touch with the ostomy nurse now rather than waiting till closer to your surgery. She may be able to dispel some of your concerns and gradually introduce you to a concept that two months from now will be second nature to you.

    I do not have an external bag, but do have an internal one made out of intestine which does not work in the same way as a bladder since it is not a muscle, has no micturition reflex, produces mucus, does not give the sensation of “gotta go”, and so on. Is it perfect? Nope. Is it good? In the circumstances it is excellent. Would I prefer a bladder? Only if it was cancer-free and worked properly.

    You will also develop thick skin – and I mean that symbolically. So when someone “kids” you about being a bag lady you will learn to grin and bear it and not cry or drop them with a left hook. However, you may also learn to laugh at yourself and learn to rely on a good sense of humour to help you through some of the challenges to come. To me, being able to laugh has kept me sane (though some would contend that I was not sane to begin with).

    It’s all a big deal, a very big deal. We get that. We’ve been where you are and have come out the other end as alivers, survivors and thrivers. You will too and will then turn and help someone else. You will because you can. You will, I have found, because you must. It’s what life is all about, making a difference in someone else’s life who is in need. Thanks for sharing. You can do this!


    Hi Greg!
    Yes, i do realize the importance of learning to accept this soon to happen change. I did have a phone call with a nurse from the hospital, to review meds, and told her some of my reservations.. her reply was to wait until the 15th when i go to the pre-admission clinic and tell the nurse then. Yours is a good suggestion and I will call the hospital and see if i can speak with a stoma nurse ahead of time.

    I have never been known to have thick skin.. I can only hope that some form of humor takes over instead of the hurt. Perhaps too, it is that stress and ‘down’ levels are high lately.

    I look forward to being in the ranks of ‘alivers/survivors and thrivers’!

    I can’t thank you enough for your positive comments, will turn them into mantras.. I CAN do this! I WILL do this! and come out the other side of RC with new hope and grace.



    I wanted to extend my empathy/sympathy? for the anxiety you are experiencing while waiting for your surgery.
    For those of us who are some time past our surgeries, I think your pre-surgery feelings remind us of what it was like before.
    When we write those comforting words about how it really is going to be fine, and that recovery, while certainly not easy, does gradually happen; when we write that one day you feel very “normal” again, and very grateful for your new reality, I can imagine that sounds unbelievable. It would have sounded that way to me, for sure. I was more of a “head in the sand” type of patient, though, at the time, haha.
    There is no doubt that this is a very, very big deal – cystectomy and the ileal conduit. One that your mind can’t really accept beforehand, I think. Recovery from this very major surgery, the clumsiness and ineptness that are part of the initial time of dealing with pouches and flanges and night time collection bags and all that stuff – whew. But – one day at a time – it gets easier.
    I do quite clearly recall my first realizations after surgery that I was no longer conscious of having a pouch stuck on my tummy. I don’t remember when it happened, exactly – some months later – but for minutes, then hours, it just “disappeared”. And now … 1 1/2 years later … it really, truly is just another part of me that I am completely at ease with – with some very big perks, too. No more cystoscopies and turbt surgeries, don’t have to sit on toilet seats to urinate (that is a BIG thrill to me, as a woman), and of course, most of all, being cancer free!
    If you want personal contact at any point, you can contact the Calgary Ostomy Society yourself (, or through the ET nurses at the Rockyview. They can arrange for a visitor.
    Best of luck to you, my dear.


    Hi Susan! Thank you very much for your response! I can understand the progression through stages of acceptance, I just so wish that this one particular issue simply wasn’t an issue for me. There are more than enough other things to be concerned and aware of.
    You did make me grin.. your comment about not sitting down to urinate.. I have also seen other comments of the strange looks that will be received when going into a public restroom, and your feet are facing the wall… not the door. How to react to that? Smile wide and keep on truckin’! I also LOVE the fact of having a ‘Can’t Wait’ card on hand for those times when the line-ups are soooo long!
    Thank you also for the url for the Ostomy Society here in Calgary! I will be contacting them as well as Rockyview.

    Warm HUGSSS!



    If I ever need an RC I have already decided on the ileal conduit. Actually you won;t have anything stuck in you. It’s a part of your own body without nerve endings that will be used to pass the urine to the external pouch. The same thing as the urine going through the ureter to the bladder. I know it will take some getting used to bu Just about everyone who has one can do essentially what they did prior. It’s not at all like having a catheter or an IV stuck in you. You won;t even know it’s there just like you don;t think much about your belly button (well, at least I don’t. Greg has an obsession with them I think). You’ll be fine. You will get through an adjustment period, but you will be cancer free.



    Hi Kiowa! Thank you for your comments. I am not concerned with something stuck ‘in’ me… but ‘on’ me. My skin is thin to begin with and susceptible to rashes. That, along with a very real phobia of having something stuck on my body is not an easy thing to overcome. As Greg has said, phobias are irrational. I do still have to get over it.. somehow!



    I have had overcome fears and phobias on this journey too. While not faced with “the Bag” I did have to overcome a very intense fear of catheters and scopes being put up the urethra. I endured those procedures as a young girl because I had to have 3 urological surgeries to correct congenital birth defects. I didn’t realize those fears were there until the time of my first cysto. I literally started to panic laying on the table as the scope for the cysto or the catheter for the BCG was being inserted. I flashed back to being that 6 yr old being pinned down screaming and my legs being forced apart. My son’s former tutor and the BCG nurse recognized it as a form of PTSD. My GP tried to get me in for psychological counselling without success but as time went on and with the support of my new uro I now understand what that was and have learned to handle the “phobia” and accept it. While I still get the jitters a bit I’ve learned to relax during exams and no longer “flash back”. The point I guess I’m trying to make is that we gradually “get it” and our minds turn towards acceptance. In my case I now understand these as just bad memories of a necessary medical procedure not an “assault” as my childhood mind interpreted it to be.

    The same for you… I know that it is easier said than done ( and easy for me to say) but see it as a way as being cancer free will probably go a long way to helping you accept it. Seeing yourself as a victor over cancer versus being a “victim” of a surgical procedure will help too. I’ve had to do that more than once. When you feel ready, talk to others from this site and our group. They will no doubt be your best source of support and inspiration. I notice from your comments that you are starting to see the “humour” (such as being in the ladies stall and your feet will be backwards). The other thing is that it is under your clothes and noone will know it is there until you tell them.

    I hope that we will see you tonight at the meeting. Take care.


    Hi Rusty!
    I truly appreciate your comments and thank you! I did speak with the ostomy society here in Calgary, and they are arranging for someone to come to my home and talk it over with me. That is a good thing, although I am nervous about it. No one ever said emotions were logical.
    Also, going in for the pre-admission on this coming Monday and there is to be an ostomy nurse there as well. Hoping for ‘clear’ results on my recent CT scan.
    I am so thankful for all those here.. the help, support, care, concern, well wishes.. and so much more!
    In some ways, each day as the surgery approaches.. I feel calmer. I do still get the up days and the down days, hopefully the up ones will take over.
    Big Warm HUGS

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