instill ingredients?

[mimi1027]

I have had two instills.

I had my first one at my gyno's office. I know it had lidocaine in it, but do not know any of the other ingredients. It only lasted 12 hours - no pain, it was wonderful!! (The nurse was shocked to hear it only lasted 12 hours.)

The second instill did nothing for me. It was performed at my uro's office and I have no idea what was in it. I wanted to give it a try thinking it may last longer than the first.

I was wondering if it made a difference on what was put in the instills. I thought if I found out what was in them, maybe someone would have some suggestions for me to discuss with my doctor.

It seems nothing I do helps to eliminate all my symptoms. I am on Elmiron, Atarax, Sanctura, and Prelief. I feel like I am on a roller coaster. One day, my pain and symptoms are very minimum and then the next all I can do is sit on the toilet. Seems like so many have relief from the instills, so does anyone have any idea on what meds are the most beneficial from instills? thanks!

[L. Thomas]

There are 100's of recipes for instills. My instill is a fairly standard mixture. Keep in mind that instills are not the "cure all" for everyone. If it was everyone would be doing them.

I am shocked that the nurse was shocked that the instill only lasted 12 hours. That doesn't mean it will always last just 12 hours though. Everyone is different. Some people don't get any relief at all until after several instills. Others, like me get instant and total relief and they keep on working.

At first I needed an instill every day. Now I don't even know how often I do an instill. I really don't even think about it. When I have symptoms cropping up I do an instill. It is not always every 4 days. It may be a couple of weeks but during allergy season I need one at least every 3 days.

[5andi]

My urologist's office has two versions.

First
marcaine (anesthetic)
kenalog (steroid)
heprin

Second
marcaine (anesthetic)
sodium bicarbonate
elimron

I've had some relief from the first mixture, but the doctor won't allow me to have more than three at a time, a week between each. Then he makes me wait for several more weeks. The relief has never lasted more than four or five days.

I read somewhere, maybe "The Interstitial Cystitis Survival Guide", that sodium bicarbonate increases the absorption of the anesthetic. I'm trying the second version starting Friday to see if the relief last longer.

Sandi

[justice4j]

I don't understand limiting instillations that way. I do mine at home and my uro is a world renowned uro who was a principal researcher of Elmiron.

That really surprised me.

[5andi]

He won't buge on rescue instill frequency. He thinks I should have immediately and complete relief from the first treatment and definitely completely better after 3 in 3 weeks. I had to beg to try the second type since he think they don't work for me since I didn't get the response he expected.

Another Dr. in the group did my cystoscopy/hydrodistention that diagnosed me two months ago. I finally asked for a copy of the report and I better understood why I haven't been able to control my IC since.

He did the cystoscopy and followed by dilating my urethra to 30 Fr. because he thought it was stenotic (although I never had any symptoms of a obstructed or narrowed urethra); then did then hydrodistention and quote "there was mucosal cracking, punctate and hemorrhages, and bleeding consistent with moderate interstitial cystitist." He then emptied my bladder and instilled DMSO with instruction in the recovery room for it to remain in my bladder 40 minutes.

He told my husband the name of IC (which he couldn't remember later). That I was to have no more tomatoes, coffee, chocolate, orange juice, cranberry juice or vitamin C. He also claimed I should be feeling a whole lot better in a couple days and for me to make an appointment to see him in a month!

I woke up in the recovery room in screaming agony and I've been worse than before the procedure ever since. He never asked if I wanted to try DMSO, just instilled it while I was unconscious with a newly cracked and hemorrhaging mucosal layer and a freshly dilated urethra - no wonder I was in agony.

My insurance only covers this group of drs. in my area, in fact almost all the drs. in the area are in this group and there's no way to find out if any of them are any good with IC.

Sandi

[leelee88]

I am using:

Sodium Bicarb
Lidocaine
Kenalog

And I want to start the heparin when it is off recall. My clinic still cannot get it.

[L. Thomas]

I don't understand limiting instillations that way. I do mine at home and my uro is a world renowned uro who was a principal researcher of Elmiron.

That really surprised me.

My urogyne is also an IC specialist and does research on Elmiron. I can do instills as frequently as I need them. I haven't been able to get lidocane since the Baxter recall and he has substituted Elmiron.

The heparin is more effective than Elmiron for me. I contacted Baxter and it doesn't sound like they will have heparin avaliable any time soon.
Louann

[Taramc]

Wow Sandi I can't believe they didn't tell you what they were doing and what was going on. WHY on earth would they tell your husband and not you? With a diagnosis like that?

And those food warnings - that's just PART of it. Orange juice and tomatoes are OBVIOUS, but there are a LOT OF FOODS THAT HURT US! My symptoms go completely out of control with the slightest diet mistake.

Mimi, I've been experimenting with various instill recipes and the one that helps me the most so far is:

10cc Marcaine (I assume Lidocaine would also do just as well)
5cc Heparin (I'm told that covers microscopic holes in the bladder wall)
5cc Sodium Bicarbonate 8.4% (thanks for telling me what that does!)
2 Emptied Elmiron capsules (that was my idea - success!)

After going 18 months with no fruit at all, other than Gerber Baby Pear Juice, I was able to eat blueberries again with no flare after about 15 of these instills. And raspberries after about 25 of them.