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Back Home and Lessons Learned from blockages
Wow! That was a lot of hits on the old topic.
I am FINALLY home! Geez, Rudy got his RC and was out in 5 days and it took me 8 days for an intestinal repair.
SO…I learned a new thing to watch out for if you get a foley catheter with a neobladder (may also apply to Indiana Pouch). The night after my surgery, I really tried hard not to push the darn pain button. This is a good thing because I had the wherewithal to realize that nobdy had been dumping my catheter bag and there wasn’t anything in it. I double checked with the nurse to be sure I hadn’t dozed off and someone had in fact dumped it. They had not. I said, let’s pull it out and let me straight cath or rutz it around some and see if it clears.
Of course nurses don’t always have authority to make that call so they did call the doctor who said to pull the foley out.
They got me some 16 French red rubber catheters and I immediately output 1000cc! WOW!!! That was a lot. Then I waited 15 minutes (assuming I must have some kidney backup) and got another 100cc or so. Glad I stayed somewhat coherent so I didn’t explode or something. I would have leaked once I got about 400 cc or so if it hadn’t been plugged by the foley. I mention it because if this situation could apply to any of you for future operations, you may want to mention it and specifically have them doctor get notes into the nursing notes that they check frequently for out (or lack thereof) when the foley is in place.
If you think you are going in the hospital for a fixed amount of time (say 4 days) to have intestinal repair, take that as a finger in the sky estimate. You intestines work when they work. While you can do all the right things, it just may not matter sometimes.
If you want to get an epidural, be sure to tell your doctor ahead of time. If your doctor doesn’t let the anesthiologist know, then you might wind up not having time to get the epidural and a nurse may sneak up and poke you with a shot in the belly that then rules out an epidural for you.
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.21 Replies-
I agree with Mike that an understanding between the nursing/hospital staff and you needs to communicated to the point that they truly understand what this is all about. That said; and I hope this never happens to any of us, if you are incapacitated or unconcious for some reason then like Mike my wife totally understands and communicate what needs to be done. This is also why I have my URO surgeons name as contact on my MedicAlert.
Rudy
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I did quit wearing the bracelet but I do still carry the card.
Pat’s idea sounds good.
My plan is to always make a point of explaining in detail so I can see the comprehension on their faces for myself. A blank stare will get a repeat explanation in a different way until I finally see that they “get it”. Also, my wife knows to tell them all the stuff about foley catheters and straight catheters in case I’m incapacitated.
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.Personally i borrowed my 6 yrs olds washable markers and for my surgery on the 28th i plan on drawing circles around my navel stoma with an arrow and “Cath here”. I may use duct tape in the lower regions with “Don’t even think about it!” written there.
I have the bracelet with Indiana Pouch on it…but that really doesn’t do much good as they think i’m from Indiana and can’t figure out the pouch part.
I’ve asked for a Uro consult prior to surgery…so we’ll see.
Pat
Thanks Rudy,
Sounds like it would be way more effective than just the little note I have pasted to my drivers license — Ill check it out.
KC
Age 59
DX Jan 2006 – T1B G3
RC – Neobladder June 2006
KC and all interested parties: Here is the info you can do it all on line
http://www.medicalert.org
MedicAlert
2323 Colorado Ave
Turlock, CA 95382
1-800-432-5378What I got was the Medic Alert Advantage enrollment for $39.95
and the stell small Emblem braclet for $9.95This is a national organization that all Emergency Service personel and hospitals, doctors etc. use. I know I used to be a cop back in NY.
They will give you an ID which links to your medical information including medications and things like NeoBladder catheterization. Physician contacts and personal contacts like wife or whomever you wish.
You may update the records free of charge. There is an annual renewal fee of which I am not sure of the amount. This may be covered by insurance or is deductable as medical expense, you can check on that.
You get Window sticker for your auto a refrigerator magnet and a wallet card.So there you have it.
Rudy
Rudy,
How much did all that cost? Where did you get it from?
KC
Age 59
DX Jan 2006 – T1B G3
RC – Neobladder June 2006
:cheer: All: while I was in the hospital, for my NEO I was actually given the Medical Alert info and forms. They also advised me to get it. I did, I have a braclet, auto sticker and card for my wallet. They all state that I hve a Neo-bladder which needs to be drained Cathetarized every 4-6 hours. Included in the web link to my info (ID) they have my surgeons name and contact numbers.
I thought this was good advice and followed up on it.
Rudy
Mike,
Glad to hear you are on the mend and hope the rest of your recovery goes smoothly. I am reposting part of one of my posts from another topic because it fits exactly what is being discussed here.Our insurance company paid for home visits from a nurse. That made me feel a little more comfortable, at least until her first visit. She took my vital signs and then said she wanted to check my stoma. I said I didnt have a stoma, I had a neobladder and she asked whats that? I had to explain to her what a neobladder was. When she left she said “thanks, I’ve learned alot today”. We called the insurance company and told them we didnt need any more nurse visits.
I must add that the nurse in question was a STOMA Nurse!
and yet she had never heard of a neobladder.Sled Ed, I just made my own medical alert tag and pasted it on my drivers license, although you can get cards made and of course you can get braclets made, but I have never researched where. I agree with Mike though that most hospital staff probably dont pay as much attention as they should. You really have to make a point of making sure that they understand about neobladders as Mike pointed out.
I still want to have the note attached to my drivers license, just in case I was in an accident and unable to communicate. At least it has a chance of working. Hey maybe I should write with indelible marker, down by my private parts “I HAVE A NEOBLADDER – IF YOU DONT KNOW WHAT THAT IS FIND SOMEONE WHO DOES!”
KC
Age 59
DX Jan 2006 – T1B G3
RC – Neobladder June 2006
I have a medic alert bracelet that says “Neobladder. Catheterize every 4 to 6 hours”. Nobody ever even asked about it when I was in the hospital other times. I guess they figure that if you are awake, you will tell them everything.
I kind of doubt anyone other than a civilian (good Samaritan) or first responder would ever even look for one of the medic alert things (bracelet, necklace, watch).
I quit wearing mine (medic alert)about 6 months ago. I’d be better off if they DON’T try to catheterize me. Figuring that anyone doing so would be using a Foley and not a red rubber straight catheter, if I get overfull without a catheter in, it will just leak out (kind of like a normal bladder). If I get overfull with a foley in, then I’ll either pop the balloon (preferred option) or I’d just explode and take out a few city blocks. So….if I don’t tell them to catheterize me at all, it is the safest bet and I just wind up wet.
My belief is that most people don’t know about neobladders so it is in our best interest to explain them to nurses/doctors. My simple explanation is: “They made a new bladder out of a piece of my small intestine and hooked it up to the all of the original plumbling so it’s like normal.”
For a doctor or nurse, I will now add “….however, since it is a piece of intestine, it creates mucous that can clog a foley catheter. So, with a neobladder, I would need to be straight cathed or wear a condom catheter to avoid a blockage problem.”The KEY part though is that neobladders are highly likely to have issues with foley catheters and MUST be monitored VERY CLOSELY.
That conclusion (paragraph above) is my conclusion based on my experience and what others have said here.
I do know from experience that a foley doesn’t ALWAYS clog. They key is that it must be closely monitored. Either flushing is required or it needs to be a big enough diameter with big enough holes that it doesn’t clog up.
I hope you are OK now Ed. Going to the hospital that way usually isn’t planned. I agree that we should NEVER ASSUME that doctors or nurses understand about neobladders (or any other diversion for that matter). Unless they demostrate they do know based on what they say, I would rather just tell them the relevent information to be sure.
I got my stitches out yesterday and my intestines are working ok now. Next week I will be back on a plane and traveling to client sites. I still have lifting restrictions but I will be able to scuba dive in February. Can’t ski in mid-January but that’s ok. I am very glad I got this taken care of before it got worse. There was stasis due to the kink and an infection had started there in the kinked area. It could have spread and caused much more problem than it had. Now it’s gone and the doc checked every inch of the intestines three times during the surgery. AND…I have a belly button again! Mine had gotten pretty wierd looking due to one of the hernias.
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.
Hi Mike..I’m glad you had the sense to keep your thumb off the “button”! That was quite an experience for you..and a great tip for all readers self inclusive..
I was taken by paramedics from my home on sunday to my local hospital and discovered quickly that 3 1/2 of the 4 nurses/doctor knew very little to nothing of a neo bladder and made me realize that I really need to pay attention.
Glad you are out..are your intestines operating properly?
All the best Mike‘kcnorthstar’ your comments have me thinking your way..are cards like you have suggested available or perhaps a ‘medic alert’ bracelet?
I am certainly happy for the tips over out flow and back flushing.
On a recent trip to the UK when I had to go over my medical history with RC with the consultant in A&E.
The consultant became very curious and wanted to know were my urine bag was. After several times explaining I had an internal neo bladder…he still repeated yes but let me see your bag.
So I began explaining the RC to him that I had and that they had made a new bladder for me with intestine and he was very surprised. His words were…if you had that done here you dont get an option you just get a bag.
Boy was I happy to get ambulanced that evening to a specialist hospital.
These recent posts and personal experiences are keeping me on the ball I tell you.
xxxleigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum
When I was in for my neo and the Uro found the nurses weren’t backflushing and taking care of the foley, he unceremoniously and very publicly ripped into them with absolutely no mercy. That was the last time it happened.
At the time, had I known what was needed, I’d have saved him the trouble and ripped those nurses a new one myself.
Folks, these tales are all inexcusable incompetence. There are no excuses for these types of things.
Lee
Just to add to the corroboration. When I was hospitalized last year they placed a foley and I thought nothing of it. I was pretty out of it because I had just had chemo that day. I remember that I had a lot of pressure, but not thinking of it. About 9 that night I felt a pop and then I had urine leaking everywhere. The nurse came in and said the foley balloon had popped. She had never had that happen before. After reading your story I am betting nothing was coming out and the pressure finally got to much for the foley balloon.
Weird! :blink:
Webs
I had my medical supply place order in a Foley non-latex just so i could see what it looked like……The eyes are exactly the same as the regular 14″ french that i use so you know they are going to get plugged up. I couldn’t figure out the balloon thingy anyway!! So i’m sure if i had to do the placement it would be a disaster not to say they wouldn’t mess it up also!! Well its on my list to ask surgeon in Cleveland this Tuesday!!
Pat
Thanks KC. That sounds like a good idea!
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.Sign In to reply.
