Dr. Parsons formula

[Dianne]

I really don't have anything left to try. I've read the 94% success rate with hep/bicarb/lido but what I'm reading here doesn't sound like that. I read that people have urethritis after they void it out which was my experience and then a terrible flare. I'm also seeing many different recipes as to the amounts with hep/bicarb/lido. I really don't know if I'd be willing to try this again or not. I also see 40K units of heparin listed in the handbook section for Dr. Parsons. I about died with 10K in sterile water so I don't know if adding bicarb would change that or not. Cathing doesn't flare me but anything passing through the urethra after does. So I get the cath in and then get upside down to instill and lie in a 45degree angle leaving the cath in and plugged, then roll over onto my knees and drain out so any med. doesn't make much contact with the neck of the bladder when I get upright. Is there anyone here who burns and flares from lido/heparin that was able to tolerate it after adding bicarb? Has anyone else tried this formula with bypassing the urethra by leaving the cath in?

[pottywoman]

The bicarb made my pain worse. The heparin/lido helps. I had pain with voiding after instills in the beginning but with time that went away. Do they put lido in your eurethra first before doing the cath? I know without doing it that way there is no way I could have the instills done.

[kadi]

http://www.ic-network.com/images/presidentsaward2006.jpg
I burned with lidocaine/heparin/sodiumbicarbonate/sterile water, til my doctor & I made the following adjustments.
1. Non-latex caths really really helped. I didn't have any indication of latex allergy, but thought it might be worth a try & the nonlatex ones burn much less!

2. Surprisingly, increasing the size of cath to 12Fr instead of the pediatric 8Fr helped because it moved less & irritated the urethra less.
Also, the liquid passed through it faster, so I had less time with the catheter in. I think for me, leaving the catheter in would be far more irritating.

3. I couldn't understand why the DMSO instills I had burned less than these rescue instills. The only explanation I could come up with was that I used Marcaine with the DMSO's, so my doctor agreed to let me try Marcaine instead of Lidocaine, even though he didn't think it would work. BUT it did work, Marcaine is much better for me.

4. I only held the instills 20 minutes for the first few months on the treatments (even though my doctor insisted EVERYONE was ok at an hour), then I gradually increased the time to about 50 minutes - and that works fine for me.

5. Also discovered that one of the reasons the instills burned at first was because I was refrigerating the sterile water, thinking b/c it had no preservatives, I should. Uh, no, my bladder REALLY didn't like the cold bath I was giving it. When I thought of it and asked the nurse, she was shocked that I'd had it in the fridge, told me to just keep it at room temperature & I was sooo much more comfortable after that.

6. I shower before the instill, rinsing really well, but don't use soap, because every single soap I tried irritated the vulva so much, I burned all night. The doctor told me to stop using soap, but to rinse really really well with warm water. The warm shower also relaxes my muscles, so inserting the cath is easier.

7. After the instill I rinse well with a bottle of warm water, and then rinse again after voiding the solution. If I have any external burning, I pat dry & use lidocaine gel on the outside only.

Hope you find some things that work for you!
These instills have dramatically reduced my pain, pressure & frequency!

[Dianne]

Early on I did 4 months of heparin with no results at all. Red latex caths don't hurt me and I don't have any trouble with cathing or after as long as the medicine doesn't pass through the urethra. I just use water to lubricate it. Can't tolerate any sort of lido in my urethra. That absolutely kills me. It's almost like I developed an allergy because it wasn't always that way. I thought previously that the bicarb had made me worse too but not totally sure on that part. What I can't figure out is if the lido is too aciditic and the bicarb would tone it down or if it's an allergy thing now. And I have to be willing to get a whopper of a flare in order to test the theory and haven't been willing to do that yet. I hate this disease.

[kadi]

The lidocaine in the cocktail burned me horribly, but the Marcaine doesn't. Maybe you would be willing to try that?

I just wanted to list everything that had helped me because it took a fair amount of fine tuning to get the rescue instillations to work for me and thought perhaps with all the people reading this, you or someone else might find one or more ideas to make it ok for them... If I had just given up at first when these didn't work right, I'd still be in pain today, so it was worth it for me to tinker & record how each change affected me... I know everyone is different though.

I know how frustrating this is. These treatments were the last option for me besides clinical trials, so I "get it". Sending a hug & a prayer that you have better days soon--

[Dianne]

Thank you. Yes, I tried Marcaine when you or someone mentioned that. Also tried the preservative free ones and even the urojets. I couldn't tolerate any of them. I was able to tolerate a urojet the first few times then it started burning me too like the others. But thank you. I don't know what else to do except keep posting and reading. Right now the only thing that gives me relief is lasix and no one knows why exactly.

[ICLori]

I'm so sorry this doesn't help you :( I know you've tried so many things and been disappointed :(

I hope so much that the Lasix continues to help you (I hope it helps you more and more the longer you use it) and that your miracle happens soon.

Blessings,
Lori

[Dianne]

Thank you. I tried lasix 20mg. at 4p yesterday. By 7p I was mostly pain free. I slept from 12-7am, pottied and slept another hour! I was even dreaming which never happens. This is phenomenal. Day before yesterday I skipped the lasix and all the pain came back 100-fold so it's not the hydro. I'm going to experiment a little like maybe halving the lasix and taking 10 mg. twice/day and see if I can cover it the whole day or if it takes 20mg. to get whatever it is that it does for me. On 20mg. I don't get that horrible washed out feeling either so no need to use 40mg. It's 10am now and still almost pain free from the 4p lasix 20 mg. yesterday. I know it'll come back in the next couple hours thus I'm wondering if I take 10mg. in the a.m. if I can avoid the 12p-4p pain before I take it again. Just thinking out loud here.

[rosesitty]

kadi - have you tried Cetaphil bar soap (not the antibacterial kind)? It's very mild and works well for me. I use the liquid on my face too.

Also, just thought I'd share - I asked my uro to use marcaine instead of lidocaine (because it's supposed to last longer) and she gave me some lame excuse that they only got it in in small amounts and they wouldn't be using that for instills. What the???? ???? :hmm:

[dminton]

Dianne,

Lasix!? Any ideas why? I'm curious!

Diana.

[Dianne]

I don't. Best guess is either it washes out of my system whatever it is in our urine that burns us. Or maybe it lowers the sodium/potassium and potassium is a known irritant. If Jill sees this, any idea? 20 mg. about 4p is giving me way better nights. It starts to come back about 1p the next day. I also have to take a Cipro every 3 days. No idea on that either. Day 4 I am miserable if I don't and increasing it makes it worse too. But one every 3 days helps a lot. Can't explain that one either. But it's the first couple of nights sleep in ages. Discovered the lasix thing accidentally.

[dminton]

Dianne,

That is so amazing! I am happy that something is looking promising for you. I will have to ponder this one. I'm sure you are too!

Diana.

[icnmgrjill]

Got me on the lasix. We'll have to research that. I LOVE everyones suggestions on making it more comfortable! Kadi, your list was awesome!

Jill :)

[Dianne]

Here's another weird component. There's never a time I don't have ulcerations in my mouth, like tongue, inner cheeks. It's not gum disease. I've only had 3 cavities in my life. I have great teeth, etc. But these ulcerations are the worst my dermo has ever seen. If I swish with alum every hour it helps stop that one in it's tracks but I always continued to get more. Sometimes up to 10 or more at once. I've noticed since I started the lasix that they've suddenly dwindled off to almost nothing. It seems if I had some bizarre syndrome with excess sodium though in my body that burns mucous membrane, that I would have a high sodium on electrolytes and never have had that. I am totally baffled by this.

[emilyrose197377]

Lasix is a diuretic.

[Amyinagony]

My Instillation cocktail is:
Bicarb, Solu Cortef, Lidocaine, and Gentamicin. It used to include heparin, but that's been eliminated because I take Elmiron (400mg/day).
Oral meds include Levsin (for bladder spasms) Prelief 2tabs 4x/day(during a flare to help reduce acid in my body-even when following the IC diet), Elavil, Pyridium (during flares) and my MD also increased my GERD med. Also stopped taking Ibuprofen, now take Cataflam (none acidic). (Many of these medications were suggestions I took from this wonderful-lifesaving website to my MD to try) Including wanting to try some kind of instillation.

At first the instillations seemed to make my pain ten times worse, (my bladder was a BIG mess when I first started instillations-that's what was explained to me) but the more I did them the less painful they were getting and eventually were not painful at all, and helped tremendously. My bladder felt the best (following the instills-and probably along with the oral meds I took) then it had in over 5yrs prior. I've been doing instillations for 4yrs now. I do maintainence instills every week, sometimes every other week. When flaring I do them as much as every single day. I've held the instill for as long as one hour. I use a infant feeding tube for the catheter (no need for lidocaine on the tip or prior).
This seems to be helping me with my IC.
It is so interesting to see the different cocktails, the different medications and all the different things that other people do to treat this disease.
The lasix is interesting. I had to take lasix once after being fluid overloaded while in the hospital to get the excess fluid (60 lbs!) out of me. The peeing never stops (it seems). I can't imagin taking that at 4pm. I hand it to you Dianne that it helps you. I say, whatever it takes to control this disease.