Back Home and Lessons Learned from blockages

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

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

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

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