So lost on rescue needs...

[GypZAlin]

My OBGYN diagnosed me last year.
I take Elmiron and Elavil.
I woke up in the middle of the night on Friday in pain and discomfort, I went in first thing this morning and recieved a Rescue treatment. I do not feel better, I am still uncomfortable and achey...but I feel it may be from the cath. I had a spasm during the install and it hurts in the same spot as it did then....
My question is how many treatments should I get to reline or recoat my bladder? How many do I need for this pain to end?

[curlycue]

What is a rescue treatment? is it a Heparin/sodium barb/lidocaine cocktail? I am on that and have been on it since June of this year, Dr parsons in san diego started me on it and at first he said it would only be a couple of months so I started to do it at home self cath and its been great, when I went to go see him last week he said that I will probably be on it for the rest of my life. At first I was not trilled but at least it helps me live my life and be there for my family. Good Luck

[mela414]

Ruth,

how often do you do those instillations? I have been doing them a lot lately and then actually had a little relief where I didnt need to do them for about a week. this morning the pain started up so before it got worse I gave myself a treatment.

[curlycue]

Mel I do them 3 times a week, but if I am flaring I do them more often, are you on Elmiron as well cuz I am.

[mela414]

I can't take elmiron orally but I use it in the instillations and I think it is helping. I use 2 caps with marcaine, sterile water and bicarb and also do it about 3 times a week.
If i have a bad flare then I do an instillation with solucortef. The dr used to use heparin in the office and I have some here but haven't used it yet in my rescue instillations. I reacted to soemthing when she did it in the office with terrible pain so I am a little leary of adding the heparin. I will probably use it in my next recue instillation with marcaine, bicarb, water and solucortef. I was told that when you use elmiron you don't use heparin.
thanks for sharing your treatment with me.

[Dixiefireball]

I will be honest I done them three times a day for a year (I DON'T USE ELIMRON) my bladder looks so much better almost like a normal looking bladder again minis the fact I still have hunners and minis the fact i still have a small bladder.
elimron and heparin treatments (i hope that is what your talking about when you say rescue treatments because that is what i know rescue treatments as.) kind of work like the elimron does yet two diff. drugs they work a lot a like. heparin however in the studies in my doctor office to help the bladder quicker then the elimron that is whey most uro give four to eight weeks worth of heparin or some type of dmso in hopes to boost the elimron.
you only need to hold the treatments for 20 Min's you can also find this information in the ICN handbook its at www.ic-network.com/handbook but some doctor tell there pat. hours.
which i think is mean. you shouldn't hold the treatment no longer then your bladder will allow by doing so you can cause more pain.
I hope this helps if you have any question you think i may be able to help with please feel free to PM me
Rhonda

[mela414]

Thanks for the info Rhonda.
How many instillations are you doing a week now? Do you still have daily bladder pain or did it sort of put you in remission.
I continue to watch my diet and although I can't say I feel great I can certainly say that it feels a little better. I can acutally plan to get out some days without having bladder pain that stops me. Of course I have to continue the treaments.
The other thing that is helping my pelvic pain is keeping the yeast under control. In addition to takine probiotics I NEED to take Nystatin vag tablets 1-2 times a week. If I don't.....even the smallest amount of yeast that comes back causes terrible pain!
Trying to find the right balance takes a lot of work but in the end if it affords us some pain relief it IS worth it.
Thanks for your help and feel well!!!

[bunnykinb]

I went to the uro Tuesday because the previous week I had terrible urethral burning. He sent my urine sample to the lab for culture thinking that I might have a UTI, but I know it is a flare. I had my Elmiron instill 11/10; with my next one at 12/1/05. I mentioned I felt horrible. He said for me to take motrin but that doesn't work. Pyridium and urimax haven't been working like usual. The uro said there wasn't anything else for me to take for burning since I am allergic to sulfa antibiotics. I also take Urocit-K 3 times a day and Atarax 25 mg once a night. I wonder how many IC patients the uro has.

But, reading messages here, there are rescue instills. Why didn't my uro do this? Here I am the day after Thanksgiving and I am in extreme pain with the burning again.
I even had to cry, but all that did was make my nose stuffy. I HATE my bladder. God, I wish this awful thing could get better. I am feeling so depressed.

bunnykinb

[Cheries]

Where did you get the Nystantin Tablets? I know yeast for me is a MAJOR problem and I get a lot of intestinal probs with natural things linke acidopholis etc. I have a major bronchial infection but am afraid to take the keflex because of the yeast effect even though I have Diflucan.

[Dixiefireball]

I do anywhere from one to four treatments a day depending on how my bladder feels. I did go into remission for eighteen mths with these treatments. (i had to work my self up to four a day i didn't jump into this with both feet in the water so to speak and did this under my doctor care)
I've been out of remission for about a year now. I had other female problems that had to be taken care of many uti I had a cancer scare and had to have a hy., but these treatments did give me my life back for a while and I feel like once we figure out where all these uti are coming from (i know its not the treatments because i stopped them for two mths to see if it was coming from the caths i was using but nope I still got those painful suckers.)
I also have hunner uclers on my bladder walls. My doctor explains to me like my bladder is velcro so when normally bat. would come out the bat. is sticking to my bladder walls causing UTIs. I honestly believe once these infection are under control then i will go back into remission again. My heparin and marcaine treatments help numb my bladder. If i'm not stressed out i may go many days even weeks before my bladder hurts, but I always have the back pain. My uro says my flairs are in my lower back this has happen to many icers.
I hope they help you and you feel better soon. If you have any other question please feel free to p.m me so i want miss your post.
Sending you hugs and prayers for better days ahead.
Rhonda

[mela414]

Cheries,
I get the prescription for the Nystain Vag tablets from the gyn. I tell him that I can't take any creams as I am allergic to the added ingredients and preservatives. the nystatin tabs comes 15 in a box and is meant to be take for a longer time but I use them now at least 2 or 3 times a week. I am meeting with a new nutritionist this week who is going to help me address the candida. Any info that I get I will pass along. When I wrote that post I was feeling better with my bladder but now it's acting up again! Anything I eat or drink is burning and causing such pain! So, bunnykinb I know what you mean when you say that all you can do is cry. I am finding it so hard to do things but always find myself pushing in spite of the pain because I feel bad for my hubby. I guess if I were alone I just would'nt go out!
As for the probitiotcs and candida....the ones that I was taking were only 2 strains. the nutritionist told me that I need to get one that has at least 7 or 8 strains.
Rhonda, thanks for all the info. I pray for the day that I go into remission! I will email you if I have any other questions.
Thanks!

[Cheries]

Thanks for the info! I am definately going to ask my gyn about the nystantin. I feel like the diflucan doesn't cut it, especially since I am already on estrogen which can predispose me to additonal problems,but at least keeps the infections (vag) away. I am also like you when it comes to meds and added ingredients. It is SO frustrating! I hope you are feeling better soon. Can you take pyridium? That helps me a little in a flare. What about pain meds?