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Indiana Pouch
Hello, I’m new to this site. I’m having an RC on Friday, July 2, with an Indiana Pouch. Is there anyone who has experienced this? Stupid question, right? Although I’ve talked to my surgeon, I would really like to hear from someone who has gone through this. I’m a 59 year old woman and terrified. I hope there’s someone who will share with me what I can expect. Thanks.
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34 Replies
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Linda,
Not sure what they first had me on at hospital but I asked for Ativan…and after I got it, I was much better, and I took it a few times after going home.
So sorry to hear you had a visit with a nurse who treated you so very poorly…and mean spirited….I think when we are sick and upset, sometimes such behavior so surprises us that we don’t immediately respond by yelling back at them…glad to hear the others on the nursing staff were listening to your concerns.
Hang in there; you’re on your way; things improve; stay tuff.
Hugs,
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
Mikes “trip” reminded me that when I was still on the automatic epidural the cartridge ran out before the pharmacy could get another one up so they gave me something called “delauted” sic. Apparently this drug facilitates time travel, cuz it sent me back to the 60’s.
Nursing issues – during one dr visit in hospital the dr. noted my cathetor was blocked and found it was not being cleared regularly by the nursing staff as they had been instructed. Dr. ripped them a “new one” very publicly. Didn’t have a problem with that again. Rule number 1. Never, EVER take crap from the staff.
Pat, you were way, waaaay to nice to that nurse.
Diarhea. Found I would get that on occasion after the hospital. I am assuming that it has to do with the missing bowel. It seems that I could have a perfectly normal movement one minute and then without warning – a waterfall. seems to be related to a magic formula concerning a large amount of fluid being drunk and overeating, in other words, my normal eating pattern. It is like the fluid just passes thru me without being absorbed. Am trying to change that pattern (I will miss that however).
Lee
As I read many of these posts, I am always wondering how to get the knowledge many of you have from experiences into a format that others could use. Pat’s list of expert doctors, other peoples tips on recovery or choices in RC. Your expertise really should be documented somewhere since it goes beyond the normal books. Perhaps an FYI that includes things like Mikes flow chart.
You all truly are so valuable to those just learning and needing some positive support, expert advice, or even humor when needed…. so thanks,
Vi
Dx 10/5 Non Invasive Papillary
Well, there is that… :D
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.Reminds me of the nurse on day 3 after cystectomy that said to me “You’ve got to get your pain under control”……..If slugging her would have been the solution i would have done it. I told her i actually didn’t know that was my job and could she please give me the hourly rate for that and who do i bill?
I was the most popular person on the floor after that. I told my surgeon to get me out of there ASAP before one of them killed me.
You know..my mom was a nurse…and she was a nurse back in the days when there were no aides…she not only took care of patients but cleaned the bathrooms!
Just sucks to get treatment like that.
pat
And Mike..don’t blame the meds..you know you’re an exibitionest :woohoo:
Wow! That nurse sucked! On the bright side, I’m guessing your intestines have awaken. :) While it isn’t fun, I can tell you from personal experience that diarrhea is better than not having them wake up for 12 days. Might not seem like it right now, but you are on your way to recovery.
On the topic of the anti-nausea drugs, apparently I had a big interaction with phergan. My night nurse turned into a centaur. I got all messed up on that stuff and pulled out everything except the foley catheter (NG tube, multiple IV lines) and all of my clothes (if you count a hospital gown as clothes).
It sure was embarrasing when I came out of the delerium and had to call for a nurse to help me get untangled from the tubes, get IV’s back in, and get ‘dressed’ again.
My wife had even warned me and I had even told them I didn’t want phenergan but the nurse said she didn’t have any Zofran or something like that. Said she’d only give me a little phenergan and it shouldn’t cause a problem. NOW I list it as an allergy on my arm band if I am in the hospital.
The part that’s too bad is that it was a different nurse that had to do all the work to get me put back together again. It should have been the nurse that decided phergan was ok to give me. If I wasnt’ wasted on morphine, I think I’d have put up more of a fight when she said she’d just give me a little.
I hope your recovery from this point on improves quickly, the diarrhea gets under control and you’re able to get something to eat soon!
Oh yeah, the correct answer to her statement about crying is “I’m crying because you are an EVIL B*TCH that doesn’t belong in nursing and I’m recovering from surgery and don’t need any of your crapola AND if you think I’m cleaning this up let’s just get the nursing supervisor down here RIGHT NOW so he or she can explain who gets to do the cleanup and how you go about claiming unemployment!”. I haven’t copyrighted that quote so feel free to use it if the need ever arises again. I hope it doesn’t.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Linda,
I also had diarrhea a few days after surgery. Came on so suddenly. I could bearly lift my head never mind make it to the bathroom on time. I was horrified and so embarassed.
A wonderful nurse came in and calmed my tears. She was so assuring and kind. She made all the difference.
I’m so sorry that you had to have this experience. This is when you feel most vulnerable. You make enough noise that this creature never has a chance to do that again to someone! grrr-rr–rr.
You have a better evening.
Gracie
They did send it to the lab. It wasn’t bloody, primarily mucus.I have met with the nursing supervisor, she was very supportive.
Linda
Sure wish i’d been there..i’d kicked her butt waaaay out of that hospital. One would wonder where all that came from?? Was it bloody or coffee grainish? I know you said you had IBS prior to all this. You need to contact your Uro/surgeon and let him know what happened. You need a culture to make sure its not e-coli or some other hospital related infection. You need hydration.
Make as much noise as you want. Tell the nursing supervisor what went on and get this treated right now.
Pat
I’m at day 6 post RC. Last night was a bit of a set back. I ended up with uncontrollable diarrhea. Then to make bad into terrible, I had a nurse who was not at all helpful. Asked me why I didn’t take care of it prior to reaching that point. “Call me when you’re done and cleaning up” and the best yet, “I don’t know why you’re crying, you need to stop b/c we will be working together all evening.” Fortunately my husband has been staying with me. He ran home just prior to all this but took care of me thru the night. When my morning nurse came on, he could see I was upset. Told him what went on, he got the nursing supervisor of the hospital. I have always been an advocate in one form or another and yet I allowed her to walk all over me. We must not allow others to treat us like that. This certainly isn’t something we chose.
the anti-nausea drug they gave me was Phenergan…but they now have Zofran and Ativan also works. The nausea just comes with the territory so go ahead and take what works best for you..it will soon abate. I would have a few periods after i came home that it would strike and i had my script and took them..but by 6 weeks out i didn’t need them.
pat
Linda,
I’m so excited to hear of your recovery; yes, you are making progress altho. it may not seem that way; have to remember it is a major surgery and the healing takes time. I am amazed you found your way to a PC. I was so much in a fog the first week, I was very well sedated and was also unable to keep any food down. They had to re-adjust my meds; I asked them to give me Pat’s remedy…forget now what it is called, but anyway, after that I was able to eat and then get that BM out of the way. I think that was like day 8 or 9 for me…and released on day 10.
I have put several cards in the mail to you so hopefully you have gotten at least one of them. You have been in my thoughts continually.
And Gracie is right…a pillow is a must…be certain to have one or something soft when you leave the hospital for the trip home; to protect the stoma from the seat belt…and if you wish to be really comfy, take one to sit on if the roads have lots of ruts in them.
Take care…get lots of rest….and congratulate yourself on your bravery and strength…you done good!!!!! Hugs,
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
Yes, 2 years out and I still remember. I had the epidural for pain for about 5 days. After they gave me some happy meds that didn’t take me to the movies but swept me away to Martha’s Vineyard! Guess I was having too much fun there because they switched the meds on me.
I would always have a pillow to brace against my abdomen when I went from a sitting to standing position. It helped a lot. Also had the same pillow when I went home to help cushion the seat belt. But taking it slow was the name of the game.
Sleeping helps you heal. Take advantage of this time. Each day you will get stronger. Pat is right – it will get better.
Best,
GracieAh yes the getting up part!!!..Roll…to the side first…and hopefully you have someone to help you get out of the bed. They cut that muscle and OUCH….ahh..the memories!!
Have someone bring you a pack of chewing gum…it helps get the bowels active…just don’t swallow the gum. Nausea happens but is usually well controlled with one of the drugs…i had a script to bring them home with me as it would continue on and off for a couple of weeks but i remember it made me sleepy.
You got the nerve block right? Are they giving you anything else now? Any of those drugs will have you going to the movies…i made many trips apparently!!
It will get better. Promise.
pat
Well, the surgery is complete. I’m four days out. I think I feel sicker today than yesterday. And of course, I haven’t passed any gas. I would love a glass of iced tea. They ask if the pain is manageable. Do we have a choice? I’m feeling a bit of nausea today. They just gave me something for that, hopefully it will kick in soon. What I wasn’t accustomed to was my fuzzy thinking. My son called and asked what I was doing, I said we went to the movies. I don’t know where that came from. Possibly a dream. I sleep an awful lot and yet I have these really large black circles around my eyes. I can walk without any difficulty, that one for the plus side. Now, getting up from laying to sitting is whole different story.
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