Instill Ingredients Question (and a warning!)

[Taramc]

Hi all,

I depend almost entirely on instills to help rescue me from everything I eat, even though I stick to the diet. I do them as needed, sometimes 3 times in a day if I accidentally miss a preservative. But my symptoms continue to worsen and I'm wondering - what else can be instilled into the bladder?

I use MARCAINE, HEPARIN, SODIUM BICARB, and emptied ELMIRON pills. I have some DMSO but honestly it hurts a little.

ALSO, I'm not prone to bladder infections - my IC started with a strange first-time viral or fungal UTI from a hot tub at age 36. But I just got my first bacterial UTI this week. I looked up the organism found in the culture and it lives in poop. So...everyone... you've been told this before and I'll tell it again... USE those little disinfecting wipes EVERY TIME! No matter how tired or ****** off you are

[sailawaygrl]

Most uti's are caused by e-coli, which yes does live in our waste. Some people can do everything right and still end up with infections. It is a good reminder though. I am a lucky one and don't get uti's very often. Some people it seems that no matter what they do they get them all the time, I feel so bad for those people. The few utis I have had with IC hurt horribly. I hope your's clears up quickly.

[amaranthe]

I am sorry you are feeling so poorly right now. Just wondering if you are continuing to do instills even though you have an infection? If so, is your Dr. aware of this? I also do instills at home, but my Dr. has warned me to never do instills while I have any infection, but ESPECIALLY a UTI. He said this is because doing an instill at this time can actually push the infection even higher up the urinary tract and can actually cause a UTI to become a kidney infection which is even more serious (and painful) than a UTI. So, if you have an infection please contact your Dr. immediately before you do any more instills. (I cant remember if I had to finish the abx before I could do another instill, or if it was okay after I had been on the abx for a few days. But, you DEFINATELY need to check with your Dr. about this!)

It is also helpful to buy some of those AZO home UTI test strips to make sure you dont have an infection before you do an instill, (especially if UTI's and bad IC flares feel the same to you, as they do to many patients.)

To answer your question regarding things that can be instilled, I know some patients use Lidocaine instead of Marcaine. Although alot of patients feel that Marcaine is stronger and works better for them, there are some patients who prefer Lidocaine. Also, some Drs. r/x low-dose, antibiotic to be instilled with the rest of the mixture for to help prevent UTI's.

Although I do my regular instills at home myself, when I have a really stubborn flare, my Dr. has me come into his office and he does an instill himself (after checking for a UTI). Once he has confirmed it is a flare, and not an actual infection, then he uses the same ingrediants that I use at home except he also adds a steroid, (it used to be Kennalog (I think), but he has switched to a different one, but I cant think of the name of it right now.

Regarding DMSO, there are different schools of thought regarding it. Some Drs. vehemently oppose it, and some highly regard it. Personally, I think the call has to be made on a case by case basis. But, I would definately want a 2nd opinion about it.

Also, since you aren't getting any better (and in fact are getting worse), I think you should definately schedule an appt with your Uro to reevaluate your treatment plan and go over current meds. It sounds like it is time to make some changes somewhere.

One other thing that struck me in your post. You mentioned that you often do instills 3 x a day even though you are sticking to the diet, just in case you might have missed a preservative or something somewhere. If you were being very strict about the diet, you probobly wouldnt be accidentaly ingesting a preservative 3 x a day, (or even thinking that you might be.) So, I suggest you go back to the basics and try doing the elimination diet all over again, only this time, keep a strict food diary. If it goes in your mouth, it goes in the diary. I realize it's a pain in the butt to do this, but, the pay-off will be worth it big time as soon as you learn to recognize your trigger foods and avoid those instead of trying to damage control after you have eaten. Also, keep a pain, sleep, and voiding diary in the same journal. Rate your pain before and after meals, and also any time you flare up during the day. WRite down what you were doing when the pain started and/or makes it worse (walking sitting bending, excersizing, eating, sex, etc.) and what (if anything) made it better (resting, eating, urinating, taking meds and which meds, doing an instill, heating pad, ice, gettin in the tub, etc. Does your period make it worse? Does the pain start on the day of your period or a few days before? Does it hurt worse when you ovulate? Also, keep track of how often you void, and whether voiding helps your pain, makes it worse, or doesnt change it, etc. Also, keep track of sleep (did you sleep thru the night or did pain wake you up? If so, how often? How long did you sleep total? What time did you go to bed and wake up each am/pm? When was the last time you had fluids before bedtime? ETC. Describe the pain, Is it burning, stinging, pulling, tugging, searing, crampy, stabbing, shooting, mild, severe, does it come and go, does the intensity wax and wane?

If you give this a try, and keep really good records for at least a month, you should start to notice some patterns. Also, if you take these records with you to your Dr. he/she will notice patterns, and will be able to r/x meds that will help you much sooner and more acurately. It will be much easier for your Dr. to determine if you have any frequently co-existing conditions that could be factors that are contributing to your symptoms and/or pain, (like Fibromyalgia, Vulvadynia, Vulvar Vestibulitis, Pelvic floor dysfuction, Endo, Lupus Pelvic adhesions, etc.)

I wish you luck and hope you get some answers soon and start to feel better soon!

Hugs,
Amaranthe

P.S. Dont forget to call your Dr to ask about whether or not you should continue doing instills while you have an infection. Make sure you do this before you do another one!

[Taramc]

My IC is weird...

....I have no problems with frequency and urgency. JUST FLARES, nerve pains, and now migraines. And I am so extremely food sensitive or prone to stress that I end up in some kind of flare every day.

I only do the instills when I'm in pain. It's because I don't want to become addicted to painkillers. When it's 3x/day it is generally because I scraped MOST of the onions off a burger, but missed some. Or I ate a cereal that most ICers say is safe, but it had some trisodium phosphate or some other crap in it.

Thanks so much about the information regarding infections! The last time I had a flare so bad I sat around popping percocet and instilling every time I peed the previous one out... it just so happened it was a bacterial infection (my first). But I'm so dumb I went to the doctor and only mentioned a vaginal infection, figuring the vaginosis and bladder irritation were from the same bug.

One round of antibiotics later, the bug came back and my doctor did cultures on both. I guess you can have vaginosis and a UTI at the same time, from completely different bacterias.

Anyway, nobody can stop me from rescuing myself with instills no matter the risks or warnings. If not for the instills, the only website I'd be visiting is final exit dot org. But I will TRY not to instill while I do this next round of antibiotics. Thanks so much for your advice!

[amaranthe]

It is interesting to me that your primary issue is pain and that you also get bad migraines. Pain is also my primary issue (although I do go thru cycles of freq/urg too.) But, I also used to get very bad migraines. They almost always happened around my period and ovulation. But, after I had a total hysterectomy and began taking hormones (Estrogel), I havent had any more migraines. So, at least in my case, I definately think there was some sort of hormonal component to my migraines. Hormones are also sometimes responsible for bad IC flares.

I also have recurring bacterial vaginosis. Prior to menopause, (often during perimenopause, a few years before menopause), hormone levels begin to drop. These fluctuations can cause the vaginal walls to become thin and weak. This can cause tiny tears during intercourse. These small tears are prime targets for baterial infections like vaginosis. After menopause, if you take HRT, then they often result in extra vaginal secretions. This warm, damp enviornment makes a prime breeding ground for yeast infections as well as bacterial vaginosis. So it is hard to fight it. If you are interested, put "hormones relate to bacterial vaginois" into a search engine. You will be amazed by what you find! (I am not sure how old you are, but if I were a betting person, I would bet that you are around 40. That's approximately when the hormone fluctuations start for most women.)

So, if I were you, I would make an appt with my Dr. to have your hormone levels checked. I wouldnt be at all surprised if they were out of whack. If so, you might get alot of relief by having your levels adjusted. But, even if they turn out to be normal, at least then you will have a baseline reading to go by for when you go thru menopause, (in case you decide to take a hormones at that time.)

[Taramc]

Migraines - nerve pains

ALL HORMONES NORMAL as of September 2010. All my tests show are elevated ANA levels. Thyroid checks out, too.

My MIGRAINES started in my 4th year as just ONE MORE NERVE PAIN. I feel so isolated from everyone in here because it seems nobody else gets the ongoing, widespread nerve pains. DOES ANYBODY KNOW WHY THOSE HAPPEN?

I got nerve pains when I first started taking Levaquin, around the 3rd week of the infection that caused my IC. They started in my back, pelvis, and knees. Then my legs, feet, toes. Then my arms, elbows. Then my fingers, face. Then I had muscles or nerves twitching ALL THE TIME, every time I ate.

THEN came the nerve pains in my eyebrows, temples, cheeks - my neurologist said 'oh we call those ice pick pains.' OH, REALLY? Well now those ice pick pains stay in my head for weeks at a time, becoming serious Migraines! So let me take a moment to thank the universe and any omnipotent being involved. I had enough problems BEFORE IC! Aaaah!

[amaranthe]

Oh, those "ice pick pains" are HORRIBLE! Yes, I get those too. Alot of ICers have that as well. I dont think you are alone in that at all. I take Lyrica for the nerve pain. I am not sure why so many of us have that. But, my own theory is that so many of us went so long without having pain meds that our nervous systems just went haywire, throwing us into this horrible nerve pain.

I can definately relate and sympathize with you. What meds are you taking? Do any of them help you?

I hope your system calms down soon and you feel better.

[amaranthe]

I also had positive Anti-nuclear antibodies. My Dr. referred me to a Rhematologist . The first one told me it was because I had Fibro. I knew there was more going on than that. So I got a 2nd and 3rd opinion. The other 2 Drs said it was Fibro AND Lupus. But, they all said that positive ANA's can also be other auto-immune diseases.

Did your Dr. refer you to a Rhematologist about your positive ANAs?

[Taramc]

Rheumatologist, NERVE PAINS!

Yes my doctor referred me to a rheumatologist, who diagnosed fibromyalgia. I've been on Lyrica for the pains, but wasn't put on it until I'd had them 8 months and they had spread to EVERY part of my body.

And I mean EVERY part. Beyond my bladder, arms and legs I get them in my ear, up my butt, tips of my fingers, under my toenails, up my nose, and hell I even got one that felt like a bee-sting on the tip of my tongue. They linger, stab, shoot, etc and my neurologist just dropped me for lack of evidence. He said maybe it's muscles.. which baffled me later that night as I endured an hour of nerve pains IN MY TEETH.

I finally quit my job last year due to headaches, dizziness, blurred vision, fatigue, and loss of short term memory. I filed for disability in July 2010 and was denied December 2010. I filed my appeal in January and they will turn me down again in April, I suppose. But that's beside the point.

TELL ME ABOUT YOUR NERVE PAINS! ANYONE OUT THERE WHO GETS THEM! I HAVE ASKED ON THIS FORUM DOZENS OF TIMES AND NOBODY GETS THEM BUT ME!!!!!!

I have started to blame Levaquin. Seriously - go to levaquin dot com and it warns about "•Nerve problems (tingling, burning or numbness of an arm, leg, or foot)." My urologist started me on Levaquin on my first visit after the primary care doctor and ER gave up. The back pain started 3 days later, then the nerve pains followed. Quinilone Antibiotics are apparently NOT JUST ANTIBIOTICS!