Help with instills please....

[SandyRN]

My uro told me that since I was the only patient he has with IC bad enough to do instills that we would set up the protocol together to do this. Well, I've waited long enough and really want to get the ball rolling on this.

I wrote him a long letter and explained that I don't want to start with DMSO (thanks to you guys for helping me decide that) and that I want to begin with the Heparin/Lidocaine/Sodium Bicarb..my question is what dose of each med do you use, where do you get your meds, and how often do you do the home instill?

I also want to do elmiron since I can not take it by mouth (stomach problems and hair falls out taking it orally)........how much and how often?

I want to get this letter out to him today so hopefully we can get going on this before the end of next week....I'm tired of having so much pain and spasms....its affecting every single aspect of my life.

Thanks in advance for your help!!!
:help:

ps...I will probably send him a copy of this thread, so anything you guys can tell me to help will also help a great doctor who is trying to help me. :)

[Sarojini]

My instill recipe is:

10ml 2% Lidocaine
5ml 4.2% sodium bicarb
40,000 U heparin (2 vials of 20,000U each)

This is from Dr. Robert Evans up here and is a slight change from what I used to use (it used to be 8ml 1% lidocaine, 3ml 8.4% bicarb, and still 40,000 U of heparin) but I find it works better for me.

As for getting the supplies, usually places like Walgreens will tell you they don't have it and can't get it, which I don't understand since I am quite sure they can order it and are just lazy ;) Usually, the best place to get the stuff is a family-owned compounding pharmacy or a medical supply store -- they are usually willing to order it for you; that is, if they don't have the stuff in stock already. Usually, I just give them a call and 24 hours later I have the stuff.

As for how often -- I do it two to three times a week, usually. Sometimes more, as a rescue instill when I'm really hurting. It is safe to do this instill every day if you want, and actually Dr. C. Lowell Parsons at UCSD recommends doing it 3 TIMES A DAY -- I think that's a bit much for me as I don't have time to mix and cath that often, and find the 2-3 times a week schedule (with occasional extras) works well for me.

Hope this helps. :)

[SandyRN]

Thanks so much Jen. I'm going to copy and paste your post directly to the letter I'm writing to the uro. I really appreciate that you put the doctor's names down where you got your information as well. I think that since I'm the first patient my uro is starting on the instills I will have a big impact on the rest of his IC patients--and having names for him to refer to will help him in his practice.

Thanks!

Can anyone tell me about the Elmiron instills?

[Imustpee]

My cocktail is:

2 - 3 Elmiron caps open
8cc sodium bicarb
3-4 cc lidocaine

[SandyRN]

Thank you Imustpee! How often do you do the Elmiron instills?

[Imustpee]

It depends on what type of day my bladder is allowing me to have...I have done as many as 2 per day. Mostly tho just a couple times a week..

[SandyRN]

Thank you thank you thank you!! :)

[kadi]

10,000 units of Heparin
10cc Marcaine
5cc Sodium Bicarbonate
30cc sterile water

Hold for 20-30 minutes, then void.
Use non-latex catheter, size 12 French.

I started out with Lidocaine, but it burned, so we switched to Marcaine, which works just fine. Also, if I don't use the sterile water, I can't void the solution & it burns, so we added that in. The regular red catheters burned too, so we switched to the non-latex clear catheters. The moral of the story is that if at first you have problems, talk to the doctor about your symptoms & maybe there's an alternative or a way to "adjust" the formula to you.

Good luck! These have helped me feel 95% normal! I haven't felt this good since I got IC, these instills are a miracle to me.

[SandyRN]

Thanks so much Kadi! I think I can put all of this together and get my letter in the mail to him tomorrow.......and hopefully start the instills by the beginning of next week.....I WANT THEM SOOOOOOOOOOO BAD!

Hugs!!

[IcyAngel23]

My cocktail is
4ml heparin 40,000 units
8cc of lidocaine
4cc sodium bicarbonate
I use Lofric Catheters (10french) I use 8' but they have longer ones too. they are awesome. i don't even feel the cath. going in. I hold for as lond as I can then void. I was introduced to Lofric and I'll never go back to the others
I found the heparin hard to find so my dr called his distrubtor and we worked it out that way. the other stuff walgreen ordered. I got it the nest day.
I guess every dr is different with the mixture. Good luck to you.

Kristin

[SandyRN]

Kristin,

Thank you so much! Where did you get the catheters? Walgreens? I'll have to ask my uro about them. When they ordered caths for me to use when I have severe retention they ordered these huge red things that scare me to even look at them. I've used one once or twice because I was desperate!

To do instills as often as I think I'm going to I REALLY want a smaller, kinder catheter!

Thanks again!

[Sarojini]

It's doubtful Walgreens will get your catheters for you. I know Walgreens in Memphis and here in Winston-Salem will not do it. Again, the best place to go is a medical supply store, or go online. There, you just request the size and brand of catheter you want (as long as you have a prescription) and they will have it for you either immediately or within 24 hours.

The LoFric are pretty good, very slippery... however they were TOO slick for me; my bladder has a tendency to spasm during cathing, and it would just push the LoFric right back out!! I use either the long red rubber caths from Bardia or the non-latex ones from Mentor (long clear ones with green funnel end). You can request anything from an 8 French to like a 16 French... I use a 12.

Also, sometimes if you still have trouble even with the tiny 8 French, you can get your doctor to give you a pediatric feeding tube -- that's even smaller and some self-cathers swear by them. I've never tried.

:)

[SandyRN]

Thank you Jen. I copied all of this information down and wrote my doctor a 2 page letter, and included another page full of the recipes, caths, etc, that you guys gave me here and what I've read on the board.

Cant tell you how much I appreciate the help.....now if only my doctor will just call me back....if I dont hear from his within a few days (he should have gotten the letter today at the latest) I'm going to call Dr. Evan's office and try to get in there....I love my doctor but I need someone who can help me with treatments that I can do myself, so I'm not running to his office 2x a month or so for help that he really can't give me.

Thanks so much for the help....now it's in the hands of my uro!

[Dixiefireball]

Mine is one vial of 10,000 ML heparin
two vials of 10 ML of marcaine
20 cc of sterail water.
mixed in a cup
then I use anti bateria soap wash well downstairs
I use a child size 10 french cath latex free.
latex free really makes a diff.
then I put it in my bladder. I do this up to four times a Day when needed.
I hope this helps.
Sandy if you need anything you believe i can help you with drop me a p.m or email me.
I will even send you my number if you want to talk. Or I can call you if you want to send me your number.
sending you hugs and prayers
Rhonda

[SandyRN]

Thanks Rhonda!!! How have you been anyway? I havent seen you around much these days!

[Dixiefireball]

I'm very sick with a bladder infection and pyelonephirits in my kidneys. I've been sleeping a lot and believe I'm very close to be admitted in the hosp. Which at this point i don't think that is such a bad idea. and anyone knows me knows i hate the thought of being there overnight.
I do believe in spite of the anti. im not getting no better. :(

[SandyRN]

Rhonda,

How long has that been going on?? Seems like months now!! Maybe you ought to get yourself checked into the hospital, asap! I don't like being in the hospital either but if I feel bad enough, which it sounds like you do, then I'm willing to go to get better! Take care of yourself, ya hear me?!?

And don't you be worrying about me and my instills...we can talk when you feel better!

[Kimchi]

New to the board, old to IC. Was diagnosed about 10 yrs ago but just in the past year have been getting good help. I take the instillations almost everyday consisting of 5 cc of sod bicarb, 10 lidocain and 1 open Elmiron pill. I could not take them by mouth because of severe stomach upset. The instillations really help but it's only temp. I take Ultram 2 BID and then Norco for breakthru but my pain Dr is sort of a hard ass and won't give me anything stronger and some days, like today, are really bad. I also have an electrical stimulator that helps some. :)

[SandyRN]

:welcome: to the board Kimchi. I can't take elmiron by mouth either because of my GERD and I'm prone to ulcers---the elmiron made me sick and my hair started falling out. So I'm hoping to do instill of it as well as the sodium bicarb, lido, etc...

What kind of electrical stimulator do you have? Is it like a tens unit?

Thank you for your reply. I really appreciate the information!

Sandy

[Kimchi]

Yeah, it's a TEN's. I think it helps but more of a diversion thing. God knows I am having one of the worst flares today. I hate this b/c nothing helps. Nothing.

[curlycue]

I think its great that you are taking action and want to get the ball rolling. Good Luck with the instills.

[Kimchi]

Hey Sandy, I also have to use the 5 french catheters b/c the usual size hurts sooooo bad. My wonderful hubbie gives me the treatments. I have never been able to master them myself. Either him or my gyno gives them to me. Good look with the instillations. They are my lifesaver but I wished my pain Dr would let me try something stronger for pain.

[SandyRN]

Thank you Ruth. I'm still waiting, impatiently I might add, on my uro to call me back. I'm thinking he could have at LEAST called me to say that he got the letter, and they're working on setting things up......grrrrrr

Kimchi, you have a great hubby to do that for you. I think my bf might do them for me, we're not squeamish or embarassed by things like that, but I think he'd be afraid he'd hurt me. Good for your hubby!! :) Do you have an actual pain management doctor? It's amazing to me that doctor's who specialize in pain do not give their patients adequate treatment!

[Kimchi]

I have a pain mgt Dr. But what I understand is, because their treatment options are so limited for IC patients, they really have to be careful. Their main patients are bone or muscles and there are a lot of treatments out there for them like epidurals and what not. A lot of pain Drs won't even take IC patients. I had a time with this one and literally begged. I finally got his wife on the phone (by accident) and pled my case and she finally made me an appt. So..... I struggle. I think if I could get adequate pain relief, I would be more happy. Right now, I get 30 Norcos a month and I have to use them very sparingly. During a bad flare, I could use that up in 1 week sometimes and then I am just left w/ the Ultram.

[SandyRN]

Geez! I hate to hear that. I take norco, and my doctor fills mine for 120 pills a month (4 times a day) and I use every one of them, easily...plus I am on oxycontin 2 x a day.

It's just not right the way IC patients are treated...it's like we are discriminated against, because most of IC patients are women, and you know how hysterical WE can become...ha. I'm only hysterical when my pain isnt under control.

Do you mind telling where you live? There might be someone on the board that can help you find a different pain mgmt doctor.

[Kimchi]

I live in Macon GA. We have maybe 3 groups of pain management doctors in our area. Not a very big city.

[SandyRN]

I lived in Atlanta for 31 years....Macon is a bit of a drive from Atlanta, but not that bad, like a little over an hour? Dont know what kind of insurance you have or what your options are, but maybe to get some help you could drive a bit. I know there have been many times in the past that I've considered driving as much as 2 hours away to get some help. It shouldn't have to be that way, and I'm sorry you're going through that. It all just makes me angry :(

[Kimchi]

Do you live in Atlanta now? My IC Dr is in Cartersville which is about 3 hours away so Atlanta is not that bad. My insurance is BCBS PPO and my pain Dr is out of network now. Do you see a pain Dr in Atlanta?

[SandyRN]

I live in Charlotte NC now...havent lived in Atlanta in 10 years. I was just throwing that out as an option for you. I'm sure if you called Blue Cross you could get a list of docs that you could see in the southern Atlanta area, and maybe make your drive a bit easier---handling Atlanta traffic when you feel great is not a fun thing to do, I cant imagine doing it with IC problems.

[curlycue]

SandyRN,
Your welcome and hope you feel better. Good Luck

[Sarojini]

Hey Sandy, Heard anything from the uro yet? If not, give him a day or two... the one thing I've learned by working in the neuro-oncology clinic is that sometimes, when it feels like the doc is taking forever, he's actually doing a ton of research and analyzing your case and trying to make an informed decision. Now, if it goes beyond three or so days, then you have a right to be REALLY po'd. Also, I know that the docs I work with call patients back the same day they receive an email, letter, or a call even if they don't have the answer yet... so I just do NOT get why some docs don't even call to say they received the letter.

Soooo... I can see it from both sides... but if it gets to be about 3 days, and you still haven''t heard anything, call and be a pest ;)

I hope you can get the instill issue straightened out. I know you're having a tough time with catheter selection -- I'm one of the odd ones that likes a 12 or 14 French because I find that the smaller ones fall out mid-instill-- the smaller ones go flying right out as soon as I cath because of bladder spasms, and the larger ones are held in place with muscle tone for me. OF course, I use a TON of lube and preceed the instill with a Pyridium Plus, but that's what works for me... plus much of my IC is true bladder stuff rather than urethral (although I have my urethral pain days too).

I think I can relate to your urethral pain though... I have a Hunner's Ulcer right on the top of my bladder, right where a catheter would come in if inserted properly... so, if I'm not as careful as I should be, I can put the stupid cath in too far and poke that ulcer and GEEEEEEEEZEEEEEEEE.... I call it "firework pain." It starts as this intense pain in the one spot and then spurts out in all directions like an exploding firework!!!!

[SandyRN]

Thanks Jen,

I am losing my patience....he should have had that letter by Friday...Monday if the mail running a few miles across the city was REALLLLL SLOW...which it's not.

Just a phone call to say "yes, I'm working on it" from his nurse would have made me happy.

He's such a kind man...now I'm wondering what in the world is going on in his mind. I found a site that lists his special interests...and guess what THEY are?! vasectomy, vasectomy reversal, BPH, erection dysfunction, and as an afterthought, kidney stones.

Obviously his expertise lies in men's health, and I'm beginning to think he's just too nice to tell me that he doesn't know how to help me and for me to find a doctor.

Never thought I'd say this, but I'd rather have a slightly rude (just slightly) doctor that knows how to deal with my insane bladder. To be told you are the worst IC case that he has is NOT reassuring....and to be told nobody else is sick enough to need instills isnt good either.

I'm losing hope in all of this.....and fearing a 90 minute drive to see Dr. Evans....btw, I'm assuming I would need a referral to see him?

Thanks so much for your help and understanding. It's especially kind to me today because the spasms are coming back this morning after a few day respite.

Hugs, Sandy

[Kimchi]

Thanks Sandy for all your advise. I see my IC Dr tomorrow so maybe he can give me some help!

[mela414]

Hi Sandy,

just caught this thread. I hope that you are doing OK. how did it go with the dr?
I am doing instills with 15 ml marcaine, 15 ml bicarb, 15 ml sterile water, 1 ampule of solu-cortef.
Today I finally ordered the heparin and will add that in as well. I was skeptical in ordering it before for fear of reacting to it but.....I got one that is preservative free.

I use a pharmacy in Philadelphia next to the hospital that Dr Kristine Whitmore treats patients. She also adds gentamycin to this cocktail when she does it in the office.

When I had the instillations done at the hospital in her office they would burn like crazy!! Then there was internal hospital restructuring and I had to bring in my own meds. I got them from Lobard Apothecary which is right next to the hospital. When she instilled me with my meds....same mixture....I did not react. I called the pharmacy and they said that they used preservative free whenever they could. So now I order only form them. I'm guessing that when the hospital pharmacy sent the meds up to her office they might have contained some preservatives that I reacted to.
so far, I am adding on eingredient at a time and doing OK.

I started doing the instillations about a month or so ago and use it as a rescue treatment. Depending on how I feel I can do up to 3 a week. If I could afford more I guess I would but it gets to be costly!

I also use a size 10 french catheter.

let us know how it went with the dr.
Take care of yourself,
:)

[SandyRN]

Mel,

Somewhere on this board I wrote a post "Letter from Uro" and it explains what my doctor's ideas were.......so I am going to Dr.Evans, who's somewhere between 60-90 minutes away from my home, to get some real help. Hopefully I will walk out of there with everything I need to get these instills going at home, and maybe I'll get to have one in his office that day---sure would be nice!

Thanks for the reply :)

[Kimchi]

Let us know how that goes Sandy.

[mela414]

good luck and please keep us posted as to what he has to say!
I hope that it all works out for you!

[mela414]

Hey Sandy........
how is it going?

[SandyRN]

Hi Mel,

I wrote a post somewhere about my uro appointment with Dr. Evans. It details everything including the instills he's starting me on....and I have a just venting post too.

Thank you so much for asking about me, it means a lot to me.

Hugs, Sandy