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View Full Version : RE: How to Pick Best Rescue Instillation


klassdg
08-17-2006, 10:12 PM
:help: I had been seeing my Urologist and got him to teach me instillation.
The formula is:
Heparin 10,000 units
Gentamicin 2 - 80 mg vials
Sodium Bicarb 8.4% solution 50 cc
Sodium Chloride 0.9% solution 100 ml Bottle
Oxybutine (Ditripan) 2 - 5 mg tabs mashed up

Found out from his notes sent to another Dr, that he uses Solu Cortef
in house, but didn't write me script for this.

Went to one of the biggest IC research Docs at Univ of MD for consult.
He taught me how to do an instillation using his formula.

His formula was much easier, less volume, less time consuming:
20 cc Lidocaine
20 cc Marcaine
5cc Kenlog- 40

A pelvic pain Doc I go to for my Vulvadynia & vestibulitis uses:
Marcaine
Lidocaine
Kenlog-40
Heparin - 10,000 units (says it helps any bleeding).

My Question: My biggest complaint is PAIN, not frequency, urgency,
but PAIN. So I was excited by the Marcaine & Lidocaine.
He even said I could use Solu Cortef if Kenalog
too expensive for me.

My concern - he seems to use 2 times the amount of Lidocaine and
Marcaine than any other Drs on here.

When they did the Instillation at the Univ of MD - they didn't instruct me
to "empty my bladder" before leaving, as my original Urologist had done
in the past.

In the past, I have been physically unable to Urinate the Sodium Bicarb,
Sodium Chloride, Gentamicin, etc out of my bladder after 30 minutes.
It is as if my bladder is FROZEN.

My 1st Urologist insists that I NOT leave his office without having the
INSTILLATION cathed out of me - As he says it is not safe for me to
be keeping it in for so long.

Down at Univ of MD - with the Lidocaine, MArcaine, and Kenalog-40 -
it was such a small amount - I didn't even think about my prior "problem".
And the Nurse who taught me, never mentioned how long I was to hold it in.

It ended up that I lost the ability to feel the need to Urinate at all.
It was 15 FIFTEEN hours later at 3 AM that I then felt the need to go.
My bladder wouldn't release a thing. Like it was frozen.

So I had to Cath myself.
I had to go an hr later - still couldn't go. Had to call the Univ of MD
Urology ER - they wanted me to come down to insert FOLEY cath.

I promised to cath myself every 4 -6 hrs. They called me next day.
I was slowly getting my bladder back - but it took a whole week.
They did a bladder ultrasound.

Did using LIDOCAINE, MARCAINE, and KENOLOG-40 for the 1st time
do this to me??
Or was it because I have to Cath the instillation out immediately after
30 minutes??

The Dr. was angry - "I have never had a patient who didn't urinate it out
before.

I am confused on what formula to use.
The 1st one has been working - but recently has been giving me wicked
yeast infections a day after instillation - he gives me gentamicin shot into
the bladder besides using gentamicin in the instillation so I get yeast.

Can anyone help me = was the 15 hours just a fluke? If I try it again,
and cath it out after 30 minutes shouldn't I be OK?

Thanks,
Diane from Baltimore

ICNDonna
08-18-2006, 03:19 AM
Each of us can react differently to instillations of different kinds. You will have to determine which "mix" works best for you --- which makes you feel better --- and go for it.

Warm hugs,
Donna

chris0710sct
12-13-2006, 02:14 PM
I use elmiron sodium bicarb and lidocaine does anyone else use this more than three times a week I don't get much help from my Doc he is kinda of cold I have been in severe pain for months he would not give me any pain meds until last appoinment i brought my husband he then gave in and he only gave me 15 which is fine I guess but it makes me sick Vicodin But the instruction the nurse sent home said I could do every day if needed after the first two weeks but when I called there he said no only 3 times a week??? I have a hard time finding where I post If anyone wants to e-mail me it is chris0710sct@gmail.com . My name is Christine I am 33 years old I am having a hard time. I find almost everyday to be diffucult and it is hard to work but I do.

ihurttoo
12-13-2006, 04:17 PM
My main problem is also pain, unless I am flaring, and then I also have urgency and frequency. I also do rescue instills at home. I use Lidocaine usually, but sometimes Marcaine instead, and Heparin, and Sodium Bicarbonate. Like you, if I dont cath it out, it sometimes works TOO well, and I wont urinate for a LONG time, (and yes, my Dr. said that is not good either!) He said that the Heparin is the bad thing being in there too long. If I dont go on my own after 30 min, he has me cath it out. (Since I am doing them at home, I just leave the cath in, capped off, and hold it up, until I am ready to empty now.)

I bet you and I have this problem since urgency and frequency isnt usually a problem for us. But, I am just guessing.

Anyway, I hope this helps! Hugs, Amy

kadi
12-13-2006, 04:26 PM
I don't know if this helps, but when I instill Heparin/Marcaine/Sodium Bicarbonate, I also mix 30cc sterile water in the cocktail. This increases the volume enough that I can void it comfortably after an hour. If I don't include enough sterile water, I can't void the solution and I have really unpleasant burning.

funinsun18
12-23-2006, 12:24 PM
I have not done the instills at home yet.I went to the drug store yesterday for 3 hrs trying to find every thing I need for it.I went 3 times a week for two weeks in the hospital.I used 10,000 units of Heprin that is a blood thinner.My doctors don't know why I would use this.I don't know either.I also use 0.5% 20 cc Marcaine,100 mg of Hydrocordison and Sodium Bicarb.
I also have problems going after.When I try to push I can get some out.It burns when I do.The water sounds like a good idea

Lishypaz
12-27-2006, 01:18 PM
I'm also using lidocaine, sodiumbicarb and elmiron. I use it as often as I need to, right now, every other day. My uro prescribed the max the insurance company would allow per month, so I can't od it more than every other day because of cost and insurance, but my uro said I could do this several times a day during very bad flares. He also told me that the longer I keep it in, the better. On Christmas day, I had the feeling that my bladder was frozen as well and was going to self-cath after five hours but I was able to go. The relief lasted much longer that day because I held it in for so long. I am not pain free ever anymore, but the relief that day was tremendous! I only had to take a pain killer once that day and its amazing! I've never been offered any other combos so I can't reply to that, but I seem to respond to this combo.

Good luck!

Dixiefireball
12-27-2006, 02:30 PM
I've been using the installments at home now for a little over two years. I use marciane, heparin, sterile water. each Dr. has their own different way of mixer for their installments they like to use on their patients. If one isn't working for you. You can ask the Dr. to change it around a bit. I do agree that was a huge amount of numbing medicine.
I've taken gentamicin a lot of times, but is always been because of a real UTI one that couldn't be treated by month. I've never had an anti put in my installment. Gentamicin is a powerful anti.

I wish you the best and pray to God that doesn't never happen to you again!!
flute or not if my bladder froze up on me after an installment went in, and wouldn't come out. I would never allow that mixer to go back in!! just my opinion.

sending you hugs and prayers.
Rhonda

**Angie**
01-01-2007, 10:36 PM
How long has it taken everyone to get used to doing these installs to the point of relieving pain?? I've tried Dmso for 1 1/2yrs (painful,but helped for a couple of days), Elmiron instills for 2 mos (very painful) and now I'm doing Heparin, Marcaine, and Sodium Bicarb about 3 mos (killing me)--I'm forcing myself to at least do them once a week. I am in ER pain after everyone (2 days). I think it's the Sodium Bicarb that sets me off because that was used in the Elmiron instill too. The combo between the Heparin and Sodium B. is the killer. My Dr office said the Heparin instill didn't help their other patients but I insisted I try it. I don't know if I should keep trying to get to the part where they help or stop torchering myself??????
angie

kadi
01-02-2007, 07:14 AM
Angie,
I would not continue to do the installations if they hurt that bad.
You might talk with your doctor about changing the formula, the Heparin/Sod.Bicarb is supposed to be soothing. Some patients have found that it's the preservatives in the solutions that are problematic. You might want to post a thread about preservative free instillation meds & someone will hopefully come on & tell you where they got them. Also have you tried the latex free catheters? That really helped reduce the after-burn of the instillations for me. Also check out some of the formulas on line to see if changing the amount of each item used might be more soothing.

Wishing you better days---