What don't you like about your bag, neo, or pouch???

Pat,
The veterans are the ones who we really need as well as they have gained so much knowledge. 4 and 1/2 years, wow, I read your post in 2002,now I know all you went through, thats why I wrote this post, to see what is different now where you are in this time-wise, and where some others in there journey, and what you would do different. Ginger

I guess i'm one of the few veterans around having had my pouch for 4 l/2 plus years..I no longer have to worry about when to empty...Hal will pretty much go for as long as i want him to...i try not to test him to much but 4 to 5 hrs is the usual and i sleep 8 hrs at night...If i'm going out to dinner or a party or the theatre i empty before i go and usually don't have to even think about it until i'm home again. A few things make him grumpy but i know what they are by now and avoid them if i'm not going to be home. Thats one of the reasons i came back to the forum to help people making their transitions but more importantly to guide them to the right facilities and right surgeons. Pat

Genes answer to my question... I would use the same Doctors, same facility,
Cleveland Clinic, I would have moved into the private section where you get one on one with the nurses, What I miss is being intimate with my wife, taking a long pee, and with that, feeling the urge. I would still select the bag as my diversion, and have the bladder removed laproscopically by Dr. Gill, no big incision to deal with, I would have told the Doctor who did the first turb to tell the results to both of us at the same time rather than tell my wife after the procedure, as she kept it to herself until he could see us together, she was afraid to tell me, for 4 days. I am 66, I would not change that as the memories have been laid in gold in my mind, and I would not change my caregiver as she is my world. I couldn't have done it without her..in my own words, Gene

PS..I am free of the depends, I don't miss them at all!

Good question to ask but since the recovery time is so flippin' slow...I agree with Pat, that in fairness to ourselves and others, we need six months or more to really determine all the pros and cons.

My husband thinks I am doing very well considering the person I am and what I have been through since my initial diagnosis in March. But as usual, my expectations are too high and so I have been disappointed with some of my recovery efforts. I have loved my dear "Rosebud", my stoma since first meeting her, but I don't love having to search and explore for pockets of urine and having to contort into all sorts of positions at times to empty...and I miss terribly the feeling of relief from having a good pee. When I empty, no matter how full I am, I never have a sense of relief...unless I have been having cramps. I don't like how I often feel
"raw" inside and wonder why some days I feel OK and other days, like today, kinda crampy, even after getting empty...but maybe that is not the Indiana pouch but just me. ???

I don't like the idea that during the day I can't predict if I will need to empty in 90 mins. or 3 hrs. but I love the idea that I am now able to sleep for 5 or 6 hrs. at night and I can roll over to sleep comfortably on either side. So I think there will always be plus and minus to each diversion. As for that question....My spouse asked me two weeks ago if he came down with BC, would I recommend chemo and surgery to him. I said, "no, right now I would not because the pain is too fresh in my mind and I still have the after effects that present me with plenty of challenges...however, I added, "ask me one year after the surgery. I know things will change and along with that, my opinion. Melodie

Jean, I am going to be completely honest here other than our walk bringing this up, when laying in bed next to him,(he was asleep) I had a sad moment, I layed there looking at him wondering how he must feel, without his bladder,and how the bag is permanent,and what does he miss about that. Sex of course is a concern for all, men and women, but looking at him the whole summer past thru my mind of what he had been through and now he lays there, cancer free, thank God, even without the sex we seem to be finding emotional reasons to be the couple we once were when we were 20 and 26....glad to have each other. But I ask others, what bothers you the most or would you have done something different? Ginger

Ginger, You come up with the neatest questions. Really makes you think.
I posted before but I don't know what happened to it. Guess it's flying around cyperspace somewhere. This whole computer things amazes me anyway seeing I remember manual typewriters and carbon paper.
I think Gene saying it is "permanent" says a great deal in that one word. All of a sudden you think...this is it. I have this thing for life. It's not like the neobladder or the pouch where once you heal there is nothing hanging off you.
I could not have a neobladder because of the location of my cancer and my local urologist, the surgeon and his wise nurse of 14 years all said because of my age do the bag and because of my age and wondering what my dexterity would be 10 years from now if I am lucky to be a "survivor" and what would happen if I got really sick and someone had to take care of me, I decided on the bag.
It has it's issues but like Pat said, you adjust and you accept because it sure beats the alternative and a good attitude really helps.
Blessings...Jean