what is the difference

[IcyAngel23]

My dr. calls rescue instill the hep/lidocaine and sodium bi-carb. Are there more than one? What is the difference between instills and rescie instills? I'm not sure I know the diference.


Kristin

[ICNDonna]

A rescue instillation is an instillation. When they say "rescue" instillation, usually it means it contains something that will help with pain very quickly.

Donna

[icsonja]

I read that in my Angel Kit I recieved yesterday about "rescue" instills. It is very apt I must say, the best time of my life is those after lidocaine instills, oh yeah this is the feeling I had forgotten........the no feeling.
Most people never even think about their bladders ,I'm sure it was the same for me pre IC, , no longer though, it is like a beating my head on a wall all day. :headbang: :headbang: . It is a constant, a norm, except for those blessed lidocained numbed times :love: .
It really can be just a chance to catch my breath and enjoy.
And my family knows that bothering me post instills may get you killed, not really killed, but you know....... :loco:

[Dixiefireball]

That is what my treatments are called and believe Me when they call it rescue treatment it does rescue me from the pain.

[saptree]

Do you all get a burning sensation after getting the lidocaine instill? For me it burns! I get it right before the DMSO/heperin cocktail.

[Romans8:28]

It did burn for me until we got the Lidocaine MPF which means preservative free, I have a sensitivity to the preservatives. Now it doesn't burn

[PenguinK]

I went to the Urogyn in serious pain today and she gave me a Lidocaine/Elmiron instill until we could set up for Heprin rescue instills.

These will be 3/week for 3 weeks! They only work M-Th, so it's close to 3 days in a row sometimes. I'm afraid for my Urethra because I suffer from spasms and the Catheter usually leaves me in pain, a different pain, but pain just the same. What do I do?? It's like a trade off!

When I was having DMSO treatments weekly I would be upset because I would just start to feel better when it was time to get it again. I can't imagine having 3 in one week, back to back! :help:

Is there anything they can do for this??? I remember not being able to walk from the Urethral spasms being soooo bad after instills, but I want to heal my bladder too.

On another note, they want to teach me how to do home instills and I'm afraid because my Urethra is apparently like hitting a brick wall when inserting it. I can't imagine being able to get it in and "relax" at the same time!!! :bonk:

:help: KK

[mela414]

I use preservative free marcaine for at home instillations and it doesn't burn.
I've had office instillations that burn but am not sure if there meds were preservative free. Probably not!!!!

[astreifel]

I have had my last instill treatment of heprain,lidocaine and sodium b... today. I seem to be getting worse instead of better. I feel so much pain. Sometimes I wonder how I can go on with this much pain. The pain is so bad that I can't even walk. The dr. said he wants me to go on a three day antibiotic therapy. I don't know what to do anymore. I need some advice. I have been suffering with IC for over 9 months now. I couldn't take elmiron because of dizziness and blurry vision. I felt like that was helping me but I had to discontinue because of my vision problems. Can anyone help me makes some sense of all this. I truly feel like I can't go on like this. The pain is so great. I also have a ovary that is covered in cysts, could this also be causing alot of the pain. My gyno said the cysts won't cause pain though. My mother had cysts also and she said they caused her alot of pain. I am so confused. I just want to feel better. I don't feel I have any kind of life anymore. I miss alot of work and I don't go anywhere or do anything anymore. I am in pain everyday. My life is circled around this pain.

[kadi]

I found that Lidocaine burned, as did the rubber catheters they were using. Non-latex clear catheters don't bother me nearly as much. And we substituted Marcaine for the Lidocaine & that has worked well, with no burn if I void it within 20 min. (And even though I only hold it 20 minutes, I still get to sleep through the night afterwards & feel good for a few days.

It takes some experimenting sometimes.

Astreifel, I hear your pain. I felt so much of what you described until I found these instills. And I felt such despair everytime someone described something working that had failed for me (Atarax, Elmiron, higher doses of Elavil, every antispasmodic out there) These treatments were literally the last thing out there for me, except Interstim or becoming a clinical trial subject. That's probably what made me insist on looking at each element of the instill & trying every logical variation I could get my uro to agree to.

I just want to say that all you need is one thing that works & that could come along any day, so please don't give up hope...

[Romans8:28]

Astreilfel I too understand your pain and frustration!! I suffered for almost two years before we found what work for me! Your cysts could also becausing you pain. They would cause many side/back pain though! A least those eventually, when your done having children could be removed! I also struggle with two kidneys full of stones and chronic infection. Sometimes it is very hard to tell what is causing my pain too and that can be very frustrating.., but don't give up! It wouldn't hurt ot try the anitbiotic. many including me find them very helpful. With IC even a low level bacteria can cause a lot of pain! Hang in there and don't give up, there are answers, through they will vary for each of us. You just have to keep trying!

[Kimchi]

I use the 5 French Cath which is itty bitty and that helps tremendously with the pain of being catheterized. I could not stand that huge garden hose! I also get the burning right after my instill but it goes away after a about 30 seconds.

[icsonja]

:kissing: I am so sorry for you and the pain you are in, I have been at the edge to many times to count, but with alot of help from my friend w/ IC and my family and God I am still here. Please make an appt. and go see a GOOD pain managment DR. if you cant find one let us know and we will help you find one. I have to use morphine, but I don.t get "high" from it, my body is in pain, you don't get that high thing unless you abuse the medications. Really please don't let yourself get so down, it can be hard to get back up agaib and no one wants that for you. we are here to help you in any way. I take pain meds, do instills and have a interstim (which iam replacing with Bion). but it has to be a multiple therapy for me and it takes some time to get it right. But staying in contact with folks who are going thru the same thing will help you more than anything I promise!
Please feel free to email me any time or :grouphug: IM me if you need to talk I am on the regester so look me up and I will be here.
WE will get you better ok Arefiel?

[astreifel]

Thank you so much for the encouragement. I just feel like i can not go on anymore and there is nothing else out there for me. I know that I will find it, it is just hard trying to find the right Doctors. Thank you for your reply and help. It does help me to have faith

Amy

[astreifel]

I thank you for your support. I do not know what Interstim is or Biom. Can you explain that to me? I know I will get better one day but it is hard to think that way at times. My life feels like it is on hold right now and i just need something to make me feel better. I just have to find the right Dr. My Dr has told me that he can not do anything else for me. The last thing I had was the heparin,lanocaine, and biosodium injections in my bladder and it seemed to make it worse. I did try anitbiotics too and had no relief. Maybe i can try a different kind. Thank you for your support and i will keep you updated

Amy

[icsonja]

:grouphug: Dear Amy, I cried as I read your posts, they have been mine, I have written the same feelings of loss and despair ,I also thought I could not do this IC s**t anymore.
I am a true testament to keep on keeping on, two months ago I was so close to the edge, I was in intense non-relenting pain, depressed, feeling like nothing but a bladder with a name. I reached out and told my fellow IC friends here on thes boards how I was REALLY feeling and I got so much love and support back it was amazing. You did that to, you took the huge step of telling how you are really feeling, not the whitewash stuff we tell those who can't understand, but the real struggle just to keep going on.
I obviously don't have a cure for IC(but I can dream of it) but I do have knowledge about it, I have had this for going on 8 yrs now and have tried EVERTHING to treat it. I am currently in the beginning stages of a trial study for a new sort of nerve stimulator called Bion, I have hope that it will help.
So what I want to say to you is this, if you dont like your M.D. lets find you a caring on, we can help with that, the biggest help you will get is from a caring, understanding, informed MD. Second you need pain managment, yes it will help and NO it does NOT make you a addict, you are in pain, there is help for that. Third and maybe most important is do your homework, study all you can about your illness, learn the terms used, be prepared. Any MD or Nurse always treats an informed patient different than one who isn't.
Fourth, it is ok to cry, we all do it, then afterward we will pick up the pieces and move forward, never backward, all the time knowing you have the support of hundreds of women just like you, who are ready to assist anyway we can.
Please email me at icsonja@sbcglobal.net or add me to your Yahoo IM my screenname is icsonja
if you need to phone me email me for my number and I will call you right back.

I am here for you Amy,OK? You are not alone
Your Friend, Sonja :kissing:

[Romans8:28]

Amy,
I am glad you opened up here for support. We have all been there at one time! This is a hard thing to live with!!! I'm sorry your doctor feels he can not help you!
Don't give up. Research here and find options he can try and help you with, or another doctor if you find one! If you tried the bladder instills, I'm quite sure that they were the ones with the preservatives in them. Try the preservative free ones. They may work for you. I personally am amazed at the difference. It has been on those desperate nights, that I have researched here and found many things that turned my IC around! For me that includes diet, MSM and MSM gel, hydroxizine, and preservative free instills. ( I use 1ml solu cortef powder only, 10 ml both lidocaine and marcaine MPF MPF means preservative free and 10ml sodium bicarb.) Unfortunately you really can't just wait for a good doctor, I have a great one but they are overwhelmed! IC is so individual you have to be your own advocate! I guess for me that helps to motivate me through the rough days!!
Pray you find an answer soon! We are all here if you need us!
Shelly

[astreifel]

Shelly,

Thank you for your advice and support. It does truly help me and makes me realize that I need to do some extending research on this. I just have not know what to do and I found this website but I was scared to talk. I am so glad that I did and have spoke to some wonderful people that our here to listen to me. Thanks Again.

Amy

[Romans8:28]

:) :grouphug:

[mela414]

I just read this entire thread and of course I cried too. I was away for a while and missed a lot. everyone here is soooooooo supportive when we need it. Amy, you will find somethng that works for you. You just have to keep trying as we all do and if you need help along the way you can always come here to bounce ideas around. We all have a story or information that we can share with you. You might even need to change doctors and get to someone who really know IC
Let us know how you are doing!:)

[astreifel]

Hey there. I am so glad that I have been able to talk to a few of you. It has really helped me and now i do know that i am not alone and not going crazy. :) You support means alot to me and I am going to a specialist in ATL in Nov so please pray for me and keep your fingers crossed and I pray for yall as well.

[Kimchi]

Hey Astreifal, who are you going to see? I live in Macon.

[astreifel]

It is a lady named Mrs. Foote, do you recommend anyone?

[Kimchi]

I saw Dr. Foote yrs ago and I don't think she specializes in IC. I did not remember her to be very sympathetic to my pain but she was very nice. Here is a listing of the IC Doctors in Atlanta and you might do better to see one of them. I see Dr. Proctor but I have been thinking about changing.
http://www.ic-network.com/md/doctorlistings.html#GA

[HelenC]

Hi, I have the interstim(implanted pacemaker that shocks the nerve that goes to the bladder. It worked good for a year but now I have pain (it helped my frequency). I just started the instillations. I thought I could never insert
a catheter myself (and I work in the medical profession as a pharmacist) but I am slowly getting used to it. It only helps 1/2 of the day and I am supposed to use it once a week but the doctor I go to said some use it twice daily.
I plan to call to find out if I can. I am also on morphine but after a year I need to up the dose (it doesn't make me drowsy anymore) but I have to wait until the doctor (pain specialist) oks that. I good to a urologist,pelvic pain md and have puedendal neuropathy also(vulvodynia). Hopefully a cure/treatment will come from the new research that found the protein that blocks the growth of the lining of the bladder.
good luck
Helen

[astreifel]

well thank you so much for talking to me. i am going to go to a pain management dr as well to see if they can help me b/c i just take so much pain pills all the time and it messes me up but i can not live without them right now....i try to sometimes to see how i feel and how it is feeling but then i can not stand it anymore and i have to take some. thanks for listening!!!

[icsonja]

Amy I am so proud of you, I can hear the glimmer of hope in your last few posts. You can do this and we are here to help you. Please keep us informed as to how you are doing and feel free to ask any (and I do mean ANY) questions or comments, in all the time I have been a member here I have never felt judged by anyone over anything. We are all in this together and together is the only way we will get free from it as well.
Sonja

[mela414]

sonja,

what beautiful caring words!
now...if I could only get my mother to say those words........oh well. At least we have each other and understand one another. :)

[macdaddy]

I had my first intillation last week. I got worse at first, but I think that I have gradually gotten better. I go again next week for my second, and will continue for nine weeks. The only problem I had was keeping the solution in. The lidocane numbed my entire "tube" thus I couldn't control the flow. I needed excessive amount of panty liners to keep from showing that I couldn't control it. :help:

[Romans8:28]

I also struggle with losing so have to lay down right after the treatment, that is harder in the office. Maybe waiting on the table for a few minutes would help.

[icsonja]

I concur with the previuos post, I must lay down to keep my instill from running right out. Plus the lido makes me a little sleepy, not sure why, mu Uro says it shouldnt be penetrating the bladder so it shouldn't make me dizzy, sleepy, but it does and I can taste the lidocaine after too. Does this happpen to anyone else or am I a freak of nature?
Could it be the Hunners let it into my bloodstream? That is the only plausible idea my URO has. Just passing along some questions, too.
But If I lay down and rest post instill I can hold up to two hours, get up within 15 minutes and it runs down my leg. Numbs my urethrea I guess.
Sonja

[Romans8:28]

I get sleepy to, but they say there's nothing in it that shold make me sleepy.., I don't have the Hunner's ulcers. I haven't decided if it's the meds or if I just get relaxed not being in pain????

[astreifel]

Kimichi,

Thank you for the listing of Drs. I will try to see if my Ins covers but I really want to go see Dr Moore but my ins does not cover them....i guess i can try and get a referrel or something like that.

Thanks for everyones kind words and being there for me. I am having a difficult time lately b/c i feel i am at a no end situation but i just try to keep my head up at the same time. i can not even work hardly and that is a bummer b/c i do like my job. oh well i just pray something works for all of us oneday

[pandahbebe]

i was diagnosed with IC with ulcers and spasms a couple of weeks ago.. they gave me these "magical cocktails" that were supposed to help with the pain. 1cc heparin, 9cc sensorcaine, and a 100 mcg tablet of cytotec. i'm allowed to take them up to 3 times a day.. and sad to say the installations aren't helping me at all. i'm just waiting for the physical therapy, and hoping that it will help :)

i understand what you're going through amy.. and i'm actually sitting here in tears right now..just realizing that i'm not crazy.. i'm 17 years old.. and i've had these symptoms for the past 5 years or so and have had to deal with family telling me that i was making things up. the pain is unbelievable.. it makes school almost impossible sometimes.

i know it is hard.. sometimes i don't feel like i can do it either.. but i know you can. and if there is anything i can do for you, please let me know.

[Romans8:28]

Dear Panda
I can't imagine struggling with IC at 17, know many here are! :grouphug:

I know I sound like a broken record but if the instills are working, before you give up.., please try the preservative free meds, they are a life saver to me!
Pray you find your answers soon!
Shelly

[astreifel]

Hi there,

I can not imaging being 17 and going through this. I am so sorry and I know how you feel. Sometimes you just want to run and hide from everything and give up. I have been through those times and still do but then I have to think that "God never puts us through anything we can not handle as long as we beleive". I am 30 yrs old and no children and living with my parents right now b/c i can not afford my place anylonger b/c i am out of work. I strongly beleive that there is something out there that works for us, we just have to find it and be patient. We can not help we got this disease and that it is so new in research....yuck

sometimes i just sit in bed and read love stories or magazines to get my mind of it. i try to do things with my family,friends, and b/f but it is so hard. do not think you are going crazy, i used to think that too. We are not crazy just in alot of pain and some people do not understand b/c they do not know about it and that makes it hard for us as well....

talk to me anytime

[astreifel]

Sonja,

Thanks for everything and i do try and keep my head up at times but it is hard sometimes. I try to do so much at times just to make myself feel useful but then i just get to tired and exhausted and have to sleep for days with all my meds b/c i am in so much pain. i hate those meds they make me so out of it. I know that I have talked about this before and sorry for rambling but it does help me to talk to beautiful people like all of you...

Amy

[icsonja]

Amy, you give more to me than I will ever give to you.I have those days,weeks, when my body rarely is seen outside mt bedroom, this is such an underrated disease, truley, even among health profesionals, they don't have a clue about living with IC.
Panda,my heart goes out to you, you must be an incrediblely strong young woman to endure so much at such a young age,if you were my daughter I would be overcome with pride in your accomplishments.
With that said. I am trying to write letters that can be given to Health professionals, one for government agencies, and one for care giver/ family please read my post on the board under "Great Debates" what causes IC and my thread id called "drafting letter about IC.Need input." Please read it and send me your real feeling, the things you want people to know, the stuff that is so hard to say to people, tell me and together we can make some drafts of letters to help us out in situations where we find ourself trying(in Vain) to explain IC. Thank you all. And Amy and Panda, you rock ladies! Every day you get thru is a huge accomplishment, you are my inspirations!
Love to you all
Sonja

[astreifel]

Sonja,

You have been wonderful to me and helpful. It just makes me feel so better that I can talk to people that understand. So many Drs and friends do not have any idea of what this crazy disease is and it is so hard. I am without pain meds today and the only thing i am taking is Darvocet and that does not work worth a crap. I came home early today b/c I could not stand it anymore. laying down is the only thing I can do these days. I do try to read and it helps calm me just to keep my mind off things. Well we will all get throught this (i keep telling myself that). I have to try and keep a positive attitude but at times it is so hard. i just want to run run run far away sometimes. thank you for listening and talking to me.

Amy