need info--fast! :)

[Briza]

I've been discussing doing rescue instills with my gyn. He's never done them before but is willing.

I sent him some of the lit from the patient handbook here about the lidocaine, sodium bicarbonate, and heparin instills. He doesn't carry sodium bicarb or heparin, but said he could order some. I know many of you do these at home and/or get Rxs for the meds and then mix them yourself or have them compounded at the drs office before instillation. Since my generic meds are free, I was thinking it best that I get the meds myself and have them compounded at his office before instillation, might save me some money???

I've seen some of you mention that sterile water is sometimes a part of your "cocktail." Is this the norm, and how much water is used?

Also, if I get rxs for the meds, how many vials or whatever they come in of each should I get? Are they for one time use, or multiple uses?

Also, if you have any links to other literature or studies about rescue instills that would be great, please post or pm them to me so I can send the info on to my dr.

Many thanks!
Bri

[kadi]

Tons of information, maybe more than you wanted to know

HI Brigette,
The complete list of supplies I order & have on hand...

60cc syringes catheter tip
30cc syringes 18G needle tip for measuring medicines
12Fr. non latex catheters (the intern at the hospital gave me a bunch of catheters varying sizes & tips so I could see which one I liked best, & then they prescribed me that one)
1 sterile cup (rinsed & reused) to measure solution into
500cc sterile water
box of 25 vials of 10,000 units of heparin each
50cc bottle of Marcaine
50cc bottle of Sodium Bicarbonate
Alcohol wipes (to clean tops of bottles only)
Baby wipes
KY jelly to lubricate catheters
Makeup mirror with stand to set up in bathtub to see where catheter is going
(I do my home instills sitting on the edge of the bathtub-much less messy!)
Plain low-lint paper towels

"Standard order"
1 box Heparin (25 vials)=25 instillations
5 bottles Marcaine = 25 instillations
3 bottles Sodium Bicarbonate=30 instillations
2 bottles x500cc each Sterile Water= 33 instillations
1 box catheters = 50 instillations
8 60cc syringes = 8 weeks of treatments (use for about a week, rinsing & drying well)
8 30cc syringes =8 weeks of treatments (use for about a week, rinsing & drying well)
1 sterile urine cup (use til measurements on side wear off, rinse & dry well to reuse)

As you can see, it's hard to order things so some things don't run out before others. Now that I know these work for me, I try to order enough stuff for 50 treatments at a time & adjust a bit each time. My script is written for "3x a week, up to daily if flaring", so I've not been restricted on quantity. And I get a better price buying in "bulk". For you, starting out, might be better to just get the minimum of each thing to see if you like them first or if adjustments are necessary. Like for me, I didn't do well with Lidocaine, so we ended up using Marcaine.

I order my supplies from Western Medical Drug by phone & they FED-EX them to me usually 1-2 days later. The important thing is to get your "durable medical" items and medicines from a contract provider pharmacy/medical supply per your insurance company. It will cost a fraction of what it will cost you through a non-contract provider.

My actual formula of what I use per each instillation:

30cc sterile water (not everyone needs this much, but I can't void the solution without straining unless I have this much sterile water to create volume; it also reduces burning)
10cc Marcaine 0.5%
5cc Sodium Bicarbonate 8.4%
1 vial (10,000 units) of Heparin Sodium

I mix these medicines myself right before instilling, so they do not need to be refrigerated. I instill the medicine, then hold it for up to an hour before voiding. Some patients can hold it longer, but I get a nasty "afterburn" if I do that. I do this right before bedtime, so I usually do the instillation first, then all the regular getting ready for bed stuff, void the solution & sleep well.

Brigette, I am going to pray these work for you as well as they have for me. It is now May 19th & thanks to these instillations, I have only lost 4.5 teaching days due to IC this year. (The other 5 sick days I lost were due to a head cold, migraine & menstrual cramps) There have been days I've woken up flaring that I would have "lost", but I did an instillation, drove to school, voided the solution, and then felt just fine to work the day. No one had any idea my day had started out badly & a few hours later I'd even forgotten.

I only had one done in the urologist's office & that was when they taught me to do them myself. All of them since then have been at home. (Much less hassle than scheduling appts!)

Here's an article I wrote on my experience with rescue instills-
http://www.ic-network.com/handbook/selfhelp0206.html

Sending a hug, let's talk again soon-
Kadi