What Exactly IS a Rescue Instillation?

[donnadb40]

I have never heard of this procedure. Could someone start at the very beginning by explaining "what" a rescue instill is?? How long does it last? etc..

Thanks!
Donna

[Freckles]

Hi Donna,
A rescue instillation is basically a combination of medications instilled directly into your bladder. I do them at home now but started at the doctors office. My instillations are Heparin, Bicarbanate of soda, and lidocaine. The lidocaine numbs the bladder. This has been very helful to me and so far (crossing my fingers) I haven't gotten an infection from doing them. My catheters are too big and hurt me and my current urologist will not prescribe smaller ones because he is an asshole. I have to see if my gyno will give me some on Monday. The rescue instillations should help you if it is your bladder that is inflamed and not just muscle tension. When I do an instillation I am almost pain free for up to 4 hours. It's wonderful. Unfortunately because of the catheters I then have many more hours of irritation so for now I'm not doing them. They are helpful at least to me. I can't wait until I can do another one. Unfortunately I have a doctor that doesn't care if I suffer. I hope you are luckier than I am in finding a good doctor. That's the hardes part of this disease.
Karen

[icnmgrjill]

Check out our chapter on rescue instillations in the ICN Patient Handbook!

http://www.ic-network.com/handbook/

Jill

[MakinIT]

Wow Freckles I don't get why your doctor wont prescribe smaller caths for you. Yes...in my docs office I get a size 10 non latex lo fric cath. But size 10 on myself is just TOOOO Big. I have an 8. What a jerk. Who is he to say how hard it is for you to stand there and put the medication in after trying to find a tiny hole and inserting a huge straw. Man that hurts. I had rescue meds for a while but my insurance company had their heads up their rears about how to get my meds to me and how to bill me. they send me what a trained nurse would get in an IV bag. Holy crap. I had no idea what to do with it.When they trained me in the office, they just measured out a few cc's from a bottle, put it in a beaker and put the liquid in a funnel that fed down the cathedar. I could get that...I majored in bio/chem. What the heck was with these bags and clips and expensive doohickeys. so , I stopped them after the first delivery (I did figure it out but it was such a pain) and I go in twice a month for installations. I can't pee after so I need the cathedars for about 6 hours later and they always give me an antibiotic or I walk away with a UTI.


I'd ask your doc to stick one of those caths, well, I won't be gross, but I would get in his face and ask what is the difference between writing 10 and 12 (Or whatever) it doesn't. He is just pulling a power play on you and you need to let him know it hurts you. unlike a male, you can't see the opening to your urethra. Jerk.

Positive thoughts...I have to keep telling myself that.

[Freckles]

Yes, he is a jerk. I remember one time when my pain doctor switched me from neurontin to lyrica saying that lyrica was more effective for the burning type of pain that I have. When I told my urologist this he again exploded and complained why do I have two people treating my pain. Well, stupid I have a pain specialist because you wouldn't give me anything for pain. It's obvious this man has an ego issue. I have enough problems to deal with his short stature issues. He's really a joke. I'm going to start a thread today and get some reactions from you guys and write this guy a letter and include them. I want to see what response if any he'll have. I hope you will see it and write this post in it again. Thanks for the support.
Karen

[brianna81]

I was wondering is this the same as what my doctors office calls a bladder wash? I also want to know how you got to do them at home? does your doctor premix them or do you? you should ask your doctor for a premie cath.
I can not use any thing else. You should demand it and in every office there is a sign that says to make complaints to a special group or asociation. the premie cath is real small the only drawback is slow todrain your urine and to put stuff in. I hope you get what you need it is an essential part to treatment.

brianna

[Jen27]

. My catheters are too big and hurt me and my current urologist will not prescribe smaller ones because he is an asshole.


Love the bluntless/honesty...the truth sucks sometimes. I hope you can get a nicer one!!! :pray:

[MakinIT]

Um...Bladder wash is I think a preventative measure so you don't have to have a rescue treatment. My doc thinks I should always have some on hand but as stated, My insurance company doesnt' think I can mix up the 3 chems that calm it right away and give me a huge IV bag to mess with. And I don't get it...(yes...when I first got IC i used the IV bag b/c pain was awful but I *****ed so much at my next appt the doc was very confused about what they did. So we schedule the bi monthly treatments which are much more expensive b/c they come out on the codes as a surgical procedure...30 secs max...) Depending on the person they use different chems for washes. My cocktail of choice is Marcaine (to numb...last time the nurse put that in last go figure...I was writhing aroung the table in misery b/c she put the others in first....) a steroid, and heparin. about 6-8 hours later I have this horid pain down low and remember I have to pee so I have to cath because I can't go yet. The marcaine is like novacaine,lidacaine...whateveracaine...it numbs you...but it lasts a long time. Darn glad they don't use that stuff when they fill a cavity. You'll drool all day. Normally I have to go every 100 or so cc'ss. With that stuff in, I've measured 500. Ouch. bout to the point they get me under anastetia, but not quite. Many people do it at home but I think their INS/Clinics have the system figured better. I know my uro was surprised they couldn't just give me what she ordered and that was that (3 small amounts of chemical, a syringe...maybe 2, and caths/gooey stuff) I got 4 huge boxes of needles and syringes and heparin locks (like they put on your IV tubing) IV tubing, full IVs, IV opening thingys...luer locks..they close the end of the tube when you aren't using it...I had to have their pharmicist walk me through every step of how work the thing ...that alone took me an hour. Crazy. Then my Fridge was filled with IV Bags.

Hope that helps. I think my experience was a solo b/c the uro knew what she wanted for me and had prescribed and taught it before. I told her I almost could get a nursing degree by the time I was done. (except I just can't put the needle in someone's vein....I can watch...no problem but..oy...makes the room spin thinking about it.

Tracey

[purpleviolet]

My docs office told me if I want to do instills at home I could, but I haven't gone that route yet (though I did do dmso a lonf time ago at home). This doc does heparin,lidocaine and sodium bicarbonate.

[Hammie]

Freckles you can get them online. I get a box of 50 for about 45 dollars. I use the 12 FR 16 inch Easy-Cath. The company I get them from is ALLEGROMEDICAL.COM. And they only took a couple for days for me to get them. I use Sodium Bicarb. Heparin, Marcaine and Dexamethasone. Too bad they don't last forever. Wouldn't that be great? Anyway you don't have to wait for your stinkin Dr. Just get them yourself. They have really skinny ones and pediatric ones too. I think that 10 is even smalller. Maybe I will get that size next time, but 12 doesn't bother me. Fits right in--LOL. Good luck to you.

[Hammie]

I don't get it Makin it. You mean the lower the number the bigger the catheter is? wow I better not get a size 10 then. Because the pharmacist gave me a 14 and it looked huge. I have to find out now from the company. I am going to give them a call and find out what is correct. I would like a little smaller but 12 is about the size of the hole. I hate to say that but it's true.

[ihurttoo]

I don't get it Makin it. You mean the lower the number the bigger the catheter is? wow I better not get a size 10 then. Because the pharmacist gave me a 14 and it looked huge. I have to find out now from the company. I am going to give them a call and find out what is correct. I would like a little smaller but 12 is about the size of the hole. I hate to say that but it's true.
The smaller the number, the smaller the diameter of the cath. I use a 5 French, which is the smallest that I know of. They also use this size for infant feeding tubes for premies.

I think it is insane he wont give you a script for smaller ones!! However, like the others pointed out, you dont need a script to buy caths. The only thing is, most insurance wont cover them without a script. I buy mine at the Clinic pharmacy without a script. (Ins wont cover mine, or my injectibles used for the instills.) Mine cost $2 each. I sterilize them and reuse them.

I hope you get some smaller ones soon. I would DIE with that size too!!

Hugs,
Amy

[MakinIT]

What I said, and I'm sorry if I confused you, was that my doc uses a 10 cath. I can't do that by myself. I am so sorry if that confused you, when I go to the restroom and have to cath myself I have to use an 8 because I can't get a bigger size in (cause I just can't see, hit the right spot, and not bang up the entrance to the urethra as I do it..as you bang it up, it swells, making the target that much harder to hit. Ouch.) Um, so, the doc/nurse can see it...I can't. That's what makes it hard. And I'm glad to know I can just call to get caths because I'm running low. AND I will forget to mention it.

Good luck...and sorry again to confuse you.

[Hammie]

Thank you I Hurt too. Now I think I will order a # 10. That should be good. I get a box of 50 at a time. Insurance does not pay for it but they are only about 45 dollars, which I don't think is too bad. I wil pray for you and everyone here too. I don't know everyone's name but God does. Hugs, Marlies aka Hammie

[ihurttoo]

Thank you I Hurt too. Now I think I will order a # 10. That should be good. I get a box of 50 at a time. Insurance does not pay for it but they are only about 45 dollars, which I don't think is too bad. I wil pray for you and everyone here too. I don't know everyone's name but God does. Hugs, Marlies aka Hammie
You are welcome. Glad to have helped you! However, if the #10s still hurt, try the smaller sizes such as the #8 or #5.
By the way, in case anyone is wondering why EVERYONE doesnt just immediately order the very smallest, it is because some people actually find the slightly larger ones (like the #10) more comfortable since there is less room in the urethra for it to move around. Personally, I have tried the larger and much prefer the smallest, but we are all different, so it is important to experiament to find the right size for you.

For those new to cathing, try buying one cath at a time of several sizes at first to see which is best for you, instead of buying a box, (in case the size is too big or small).

Best of luck to all! And to Marlies, thank you for the thank you! Hugs, Amy

[Hammie]

Thank you Amy for those helpful hints. I didnt sleep all night. Think I have yet another bladder infection. Did two instills in a row, Mon. and Tues. but maybe it was an infection all the time. Do you get alot of infections from your instillations? I try to be so careful with my body and with the equipment and sterilize everything, yet I still get infections. Maybe you can tell me what you think as to why I get so many UTI's? I also got Hep C from a blood transfusion after I almost died from a tubular pregnancy in 85. So all these antibiotics are bad for my liver. It's and endless, evil cycle. I wish there was another way to get rid of this crap. I am going to my old Dr. Seems like he popped up on my insurance plan again and he was the best. Maybe he can think of something better, like laser surgery, although I don't think they like to do that. But I am at the end of my rope with all this peeing and sleeplisness. And I think I have firbro too. Any feedback would be appreciated. ((((((Amy)))))) Hugs, from Marlies aka "Hamlie"

[ihurttoo]

Thank you Amy for those helpful hints. I didnt sleep all night. Think I have yet another bladder infection. Did two instills in a row, Mon. and Tues. but maybe it was an infection all the time. Do you get alot of infections from your instillations? I try to be so careful with my body and with the equipment and sterilize everything, yet I still get infections. Maybe you can tell me what you think as to why I get so many UTI's? I also got Hep C from a blood transfusion after I almost died from a tubular pregnancy in 85. So all these antibiotics are bad for my liver. It's and endless, evil cycle. I wish there was another way to get rid of this crap. I am going to my old Dr. Seems like he popped up on my insurance plan again and he was the best. Maybe he can think of something better, like laser surgery, although I don't think they like to do that. But I am at the end of my rope with all this peeing and sleeplisness. And I think I have firbro too. Any feedback would be appreciated. ((((((Amy)))))) Hugs, from Marlies aka "Hamlie"

Gosh, I am really sorry you've been up in pain all night! As for the infections, I got them all the time last year (10 in all last year!), but every since my Dr. put me on a low dose of daily antibiotics, I have only gotten 1 this year. I take 100mg Macrobid a day. It has helped alot. You might ask your Dr. about trying it.

One thing that concerns me with your post is that you did a rescue instill even though you werent sure if it was a UTI or a flare. This isnt good. When I was still going to the Dr for my instills, they would NEVER do one when I was flaring without testing my urine first for infection, and if there was infection, they wouldnt do one until it was all cleared up. He said that it is b/c the heparin thins the walls of the bladder to help the Lidocaine or Marcaine absorb better into the walls to give longer acting relief. The problem with doing the instills during an infection is that when the walls are thinned temporarily with the Heparin, the bacteria from the infection could get through and go to the bloodstream causing sepsis.. which is VERY serious.

So, now that I do these at home, I bought some Urine test strips online and always check my urine if I am symptomatic. I think they sell these in the ICN shop, if I am not mistaken.

Anyway, I am sorry you are hurting. :( I hope you are able to get into your Dr. this morning and get your urine checked. I also hope you get to feeling better soon. Hugs, AMy

[Hammie]

Thanks Amy. I didn't know that doing an Installation while you have a bladder infection could be that dangerous. I don't really know how to read those strips. They are really weird. One side was always showing an infection even though i didn't have one.

[Hammie]

Your welcome Amy. That's a good idea to buy one of a few different sizes. You can do that online too. It seems like I get bladder infections so quick, and I sterilize everything and use a new catheter each time. Now after I catheterize I take an anitboitic after and one in the morning. I don't want to get immune to them because before I was diagnosed the Dr's were giving me one antibiotic after another. Plus my liver is not that great and they are hard on the liver. Good news is my very best Dr. that first gave me the rescue installation is on my insurance plan again. I am going to tell him, that I have been doing this installation for almost two years since I left him. Maybe he will change the formula or give my something. I have nothing for pain, and I hope he will give me something. I will let you all know what happened Wed the 13th when I see him. I heard he has a female Dr. on his staff now. A new friend I made has IC and she went to see her and said she was very sympathetic. Wish me luck girls.

[chris0710sct]

Hi I just started the installations and when I went to the medical supply store they let me get smaller ones he said it did not matter.

[L. Thomas]

I was wondering is this the same as what my doctors office calls a bladder wash? I also want to know how you got to do them at home? does your doctor premix them or do you? you should ask your doctor for a premie cath.
I can not use any thing else. You should demand it and in every office there is a sign that says to make complaints to a special group or asociation. the premie cath is real small the only drawback is slow todrain your urine and to put stuff in. I hope you get what you need it is an essential part to treatment.

brianna

I am not sure but it sounds like it might be the same as a bladder wash

Bur it is called a rescue because it can rescue you...immediately..any where..any time..as often as you need. (if they work for you)
I live so far (100 miles) from my urogyn he said it would be easier on me if I wanted to do them at home.
I mix them at home
I use a 8fr which is a pediatric feeding tube..
Works for me

[chris0710sct]

dOES ANYBODY DO THE INTILLS MORE THAN THREE TIMES A WEEK? i CAN RELATE TO THE STORIES ABOUT THE URO i HAVE BEEN IN SO MUCH PAIN WHEN i ASKED HIM FOR SOMETHING HE SAID NO i DECIDED TO BRING MY HUSBAND TO THE LAST APPOINTMENT JUST TO HAVE SOMEONE WITH ME i REPEATED i HAVE BEEN IN PAIN AND MY HUSBAND MADE A FEW COMMENTS IT WAS ONLY THEN HE TALKED ABOUT INSTALLATIONS AND GAVE ME A SCRIPT FOR PAIN WHICH I TRIED BUT IT MAKES ME SICK vICODIN.

[curlycue]

WOW you ladies are AWSOME. Thaking responsabiliti for your own health.YOU GO GIRLs.

I am currently doing the instills myself. I also do the heparin, sodium, lidocaine. its worked great for me the only thing that sucks is that I started doing them 3 times a week and I am now up to 5 times a week. No matter what anyone says "oh you get use to doing it" I will never, but it works so I do it. Good Luck to all.