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What don’t you like about your bag, neo, or pouch???
We give alot of advice when it comes to what to choose for your diversion. It occurred to me that with the positives the negatives are also an issue. So for those who have their diversions now how do you feel about it??? While going for a walk in a natural perserve with my husband I said to him, do you grieve for your not having a bladder? Sounds weird but he answered yes, I have a bag now and it is permanent, I can’t take it off. Are you sorry you have the bag? Not at all, but sometimes I get the feeling I have to go, I just ignore it. Its the absence of something I had that I miss. Its a sense of loss.I do miss having the urge and doing what I always did to take care of it. Makes me sad for him, because again its he who had b/c. I thought it might be helpful to just say what you found hard to accept in your experience, or what you felt was different than what you expected. What do you miss the most? And be sure to mention your choice of diversion. Would you have done anything different? Ginger
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24 Replies
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So sorry i missed that countryside pee fest…its a wonder you didn’t have a 5 car pile up!!…anyway as for writing your name in the snow…you will find at some point that you can actually control some of those abdominal muscles and they will put force on the pouch to push it out…at least i can with the navel stoma…
Glad i have a short name! Pat -
OK…had to get in on this one. Restrooms…in my area, usually the grocery stores have the dirtiest ones…YUCK ! And why should that be? ??? I like going to Walmarts for that reason, there are two restrooms and I always take the Handicap stall so I have plenty of room and since I pick the restroom in the back part of the store, it is less used and I don’t have to fret that I might be creating a problem for someone who needs wheelchair access. I just admit, however, that one day I was in a stall and a very elderly lady came in and put out such a pee with gusto…well, I was jealous. And I agree, the gas stations usually are in decent condition.
As for the spaces where someone can see in…well, first off it is rude if they are staring but hey let em have a look if they want to get educated…I guess after standing outside a major hospital in Seattle a couple of months back with no hair, no make up, no bra, no underpants, only a thin jumper and T-shirt on, wearing flip flops and my bag of urine next to me….well, after that, I frankly have no sense of embarrasement left. I would even show off my lovely stoma, “RoseBud” if anyone wanted to see. Just for fun one day, I stopped on the way home from shopping, along side a country road and whip open both car doors on the road side and stood there emptying just for the experience of it. Cathng in the great outdoors is good as long as the insects leave me alone. For some reason, maybe it is the weight loss of 17 lbs. but it is now very difficult for me to empty sitting down so I stand…I just wish I could pee with more force…would be more fun and that way we gals could write our names in the snow come winter time. :) Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. WrightOkay I am writing this all down,,,Starbucks, nice gas stations, they don’t have Bladder bags in the dispenser do they??? WHY NOT!!!We are going gambling two hours away, Detroits speed limit is 75, we will get there fast not having to stop.Gotta plan plan plan!!!!!Ginger
aha…the tricks of the trade are coming out!! About bathrooms i have found that the cleanest ones around are in Starbucks…and lord knows they’re everywhere..at least around here…and they’re huge. (I also have Georges mentality)…Love the water bottle trick but never have had that happen to me but good to know!!! Pat
One thing that I have done is that I am becoming like George on Seinfeld where I know every single washroom in my city. George used to be able to name them all, that is a funny Seinfeld episode. I have found for myself that the key is to try and find the private washrooms and many times I use the wheelchair washroom because they are usually single private washrooms, if you have an accident or leakage etc then sometimes you can find a wheelchair washroom and be by yourself, every gas station usually has a private washroom and they are not as bad as you think they are! I have been quite amazed at times. But I find if I know ahead of time and can get the layout then that helps to allay my stress of what I would do in an accident, leak. My nephew has an illeostomy and he brings lots of medical tape and then he can tape things on and get home quick. In the beginning I used to carry a water bottle and if I sprung a leak then I would also spill water on myself, amazing cover up and not a soul ever thinks anything because they all think you don’t pee out of your stomach area.
Standing is especially convenient when one is traveling and the bathroom is none too clean. I found it to be a godsend last summer when I visited Greece and Turkey.
Well that is a great idea Pat, I don’t stand up to go but I just might start standing for the sheer fun of it.
Alanna…when you come out of one of those peek thru stalls…go into your deepest voice and say “Sorry Girls”….the looks are precious as they’ve seen you in there standing with your feet towards the toilet!!!..(I do have a warped sense of humor)….Pat
What would i have done differently…thats an easy one…not PANICKED. When one is presented with gross hematura and i do mean gross at 2 A.M. and a trip to the E.R. and subsequent CT which showed a tumor. No time to think…heads in a whirl…i trusted the urologist my internist sent me to immediately. The TURB followed within 4 days…whatever that was…had to look it up. Pathology came back T2 Grade 2..invasive into the muscle. Brain cells started to function at that point..my thinking if i was to survive this i was going to go to a top cancer facility and a top surgeon. I hit the internet and every major Cancer facility and hit every urological surgeon to find the ones who specialized in bladder cancer….i was able to narrow down quickly as the majority were prostate cancer. I called Memorial Sloan and got an appointment the next week with Dr. Harry Herr. He took one look at my slides and CT scans and scheduled me for his own TURB. He saved my life. He got the margins the other urologist left in there and got all of the cancer out of the muscle which was just starting to invade. I was free of any cancer cells in the urine at that time but Dr. Herr a bit like Arnold Swartzenagger said, “It’ll Be Back”. He advised Cystectomy and wanted to do a neobladder on me. OK more research…at that time the neobladder with success with women wasn’t that great plus he couldn’t give me one woman he’d done that was a success. He equated the Indiana Pouch with the ilial conduit. OK i need to talk to some other people. I specifically then went on a search for surgeons who dealt with BC in WOMEN..and a lot of women and thanks to Delta’s getaway weekends (Wed thru Tues if you want) i very economically traveled all over the place in very short order. I talked to Dr. Mark Schoenberg by phone and he was so very helpful and kind..he even directed me to specific surgeons…he’s a specialist in neobladders and nerve sparing for men..so i saw Dr. John Stein at USC/Norris whom i loved(a long ways to go)..Dr. Birhle and Koch at Indiana U.Medical Center (where they invented the Indiana)..i even checked out bladder sparing at Mass. General with Dr. Shipley and then by reading a post here on the storyboard i found out about a Dr. Inderbir Gill at The Cleveland Clinic who just happened to be the only surgeon in the world at the time to do a cystectomy laproscopically so i went to see him. I would not have gone wrong with any of these surgeons. I, of course, went the Diva route plus it was closer to home should there be any complications and went with Dr. Gill. He’s a world class transplant surgeon and head of the division at Cleveland.
One question i wish i had known to ask and somehow missed with all the information out there on the internet..most of which did not apply to me or scared the hell out of me and i quit reading..
1. why can’t they save some part of the ilium so that we won’t have Vitamin Bl2 defeciency down the line. Thats were we absorb Bl2…the only place we can absorb it…i want my ileum back as i now have to get shots..tho they now have a sublinqual tablet that dissolves under the tongue.
Would i have done something different if this forum was in place…i don’t know…lord knows i would have gotten tons of feedback. At the time there was just the storyboard and Wendy put me in touch with a couple of mentors including herself and one Karen Greene who was such a tremendous source of support and caring and she carried me through it all and we are still writing and i consider her one of my best friends though we’ve never met in person.
This is kind of a long reply for what would i have done differently…have you stopped reading…go back to the beginning…..DON’T PANIC ..search out the best facility and the best surgeon for what you need to have done. Don’t be afraid to ask any question…there are no dumb questions…. Hugs Pag
Hello
I am now 4 and a half years post surgery with the Indiana Pouch as well. I miss the peace of mind I used to have in regards to being able to run out the door or plan an event or going to a conference for work and not thinking twice about where the toilets are or if I will need to empty the pouch. Last week I was at a conference and there were 2 toilets and 200 people and everyone stands outside the washroom waiting for you and it does take a little longer than slipping in and having a quick pee. I find that frustrating. Being totally honest I also hate it when these bathrooms have large gaps between the door and the wall and everyone can basically see in through the gaps and I feel like they are all watching and wondering what the heck that person is doing, that might sound like a bizarre statement but it has happened to me so many times it is ridiculous, I figure if I can see out perfectly through those large gaps then they can see in and when they are lined up waiting someone probably sees something – maybe that sounds ridiculous but its true for me. I always quote that line “there is no reality, only perception!” Right now I have stones (calcifications) in the stoma canal, I have had stones removed from the pouch twice before, it is a simple procedure, they put you out for it, but I hate them messing around in there because I am always afraid they will affect the continence of the pouch. My surgeon did a great job, but I wish the pouch was a bit higher up because I find that when I am in a sitting position it can squeeze the pouch more and leads to leaking. Maybe I am wrong on that one, I don’t really know. Lastly I wish that there were people in my area in Ontario that had pouches but I have not met one. About 6 months after my surgery the stoma nurse at the hospital told me that she had a woman who had moved into the area who had an Indiana Pouch who was wanting to meet someone else for support. I had clearly told the stoma nurse on many occasions that I would love to support anyone else in this position and yet she had totally forgotten about me and did not give the woman my name and number that I had left with the stoma nurse for such an occasion. Blew my mind but such is life! I promise I won’t write so long again, I only write every now and then so hopefully you can forgive me. Overall, I had 2 boys 6 and 12 when I got cancer and I am cancer free for 4 and a half years , and they could hang bags and pouches from my ears if they wanted if it meant I was around to see them grow up!
I am too blessed to be stressed..
[quote author=Gene Beane link=topic=1345.msg9692#msg9692 date=1193844904]
What do you miss the most?
Would you have done anything different?
[/quote]Well, a ‘real’ bladder would certainly be preferable to my neobladder – but not by much.
Sleeping the night thru is a fond memory, though I get up only once nightly to pee.
And it seems I’m one of the fortunate ones when it comes to sex as nerve sparing actually worked, so though it is a bit different, I’m happy as a clam in that arena.
And I have no problems peeing.As far as doing anything different, I wished I’d had my RC surgery done sooner, given my high grade cancer diagnosis, that I’d found USC/Norris sooner – just to be on the ‘safer’ side.
I certainly wish I hadn’t started eating solid foods so soon after surgery, so as to have avoided the bowel obstruction (that sucked big time).
I wish I had eaten a better diet throughout as a youngster, maybe (just maybe, though probably wishful thinking) it would have prevented my blc.But these are nits, really small nits. Fifty years ago, I’d probably be dead by now, 2 1/2 years after surgery. So I’m not complaining.
Dx 7/04, CIS + T1G3, Age 50
2 TURBTs
12 BCGs
Cystectomy 8/05 USC/Norris
So far, so good (kow)
Patricia, it is a real blessing to have some veterans on these boards. Your experiences and advice are tremendously helpful. I make it a point to read every one of your posts.
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. GingerI 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, GenePS..I am free of the depends, I don’t miss them at all!
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