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Interstitial Cystitis
July 11, 2005 1:05 PM   Subscribe

Does anyone have any remedies for Interstitial Cystitis?

Any remedies for reducing urinary frequency? Any medications that work
posted by pony to Health & Fitness (7 answers total)
 
This, coincidentally, was in the People's Pharmacy column in our paper today:

No side effects with Prelief?

Q. My doctor told me to use Prelief (calcium glycerophosphate) for interstitial cystitis. It does work. The nurse said it is natural and has no side effects. Do you know of any? That seems too good to be true.

A. Interstitial cystitis is a painful bladder condition that may be aggravated by acidic foods and beverages such as coffee, orange juice and tomato sauce. Prelief reduces acid in such foods to relieve symptoms associated with interstitial cystitis, overactive bladder or heartburn. We know of no side effects, but you can get more information at (800) 994-4711 or www.prelief.com.
posted by SashaPT at 6:39 PM on July 11, 2005


This is one of those times to me in which "perhaps seeing your doctor" might be indicated. It's just that cystitis and frequency may need pathology work and possibly antibiotics. And given that, if there's an infection, without adequate treatment there's always the possibility that the infection could conceivably spread/worsen and maybe even affect the kidneys. An alkaline additive as suggested above might relieve symptoms but my semi-ignorant understanding is that bugs like that environment, if there is an underlying infection.
Well, that's what I'd tell my sister or girlfriend etc if they asked.
Some stuff to read particularly this.
posted by peacay at 12:30 AM on July 12, 2005


A 2nd for see the doctor here - mine cleared up in no time with a shedload of antibiotics. I did the usual drink-lots-of-cranberry juice thing too, but I don't think that would have worked without the drugs. And I'm sure you want it out of the way as soon as possible - it's grim.
posted by handee at 2:17 AM on July 12, 2005


yup, if you do the cranberry and cystitis relief sachet route, that might work - but if you're still in pain after a couple of days, get straight down to the doctor. I didn't, and ended up with a kidney infection (the infection spread up the tubes, and made me very ill).
posted by altolinguistic at 4:01 AM on July 12, 2005


Thanks to melinika for pointing me here...right-o...

I have IC, and it's very different from having a bladder infection (cystitis). It will not clear up with antibiotics (in fact, throwing antibiotics at IC is of the bad as you don't need them and thus you're just taking unnecessary meds and it may make your flares worse) and cranberry juice is the BIGGEST no-no out there. There's variation among IC patients but almost every patient I know is caused huge pain by cranberry juice. The IC bladder is often riddled with cracks and inflammation, and so the acidity will hurt both the bladder itself, and also due to the frequent urination and often difficulty peeing, having acidic urine causes more pain as well.

There can be lots of symptoms for IC, so it's hard to recommend exactly what you should do. A good first step (other than seeing a doctor, more on that later) is to follow what's generally called the IC Diet - this also varies by person, but avoiding acidic foods and drink, caffeine, and alcohol will have a huge impact on your urinary frequency - even more than might seem logical based on the lower intake of diuretics, as to a certain extent your body will be healthier from having to urinate less often. There are also lots of other restrictions that seem to vary hugely based on the patient, so some elimination diet testing might be necessary.

Seeing a doctor to at least get diagnosed is a good idea; it's important to know if you are just having a lot of UTIs or have IC, though it sounds like you might have done that. If you do ever go in for a UTI, make sure they send it to the lab for analysis, not just swab - once I did that is when we got the ball rolling on diagnosis, because swabs showed something and I was in full UTI-mode (really, a flare) but testing showed that there was no actual UTI present. You'll have to see a urologist; be aware that most urologists have no idea about IC or are simply really not equipped to deal with IC patients. I was 24 or 25 at the time, female, and my urologist was a 80 year old man with an office full of old men coming to see him about his prostrate. And I was lucky to get that appointment. This is not meant to put you off seeing a doctor, but just to prepare you for the possibility of disappointment that a lot of IC patients face (I am not seeing any doctor at the moment, trying to manage it myself instead but it's not really a great option at all, as I sit here with bad burning.)

For meds: Prelief is sort of like taking an antacid - you use it if you're going to eat non-IC-friendly food. Elmiron is used as a long-term medicine that helps rebuild the bladder; I know lots of people who have had success with it. I was taking an exclusively overactive bladder med for a while, called Oxybutin, but I didn't find it particularly helpful, though there are several options that address just that aspect (you may still experience pain, though). There are also various painkillers and some natural remedies, including Algonot. Other good alternatives are stress relief remedies, the diet, exercise as possible (i.e. I walk/run, but try not to jostle my bladder too much, and I absolutely can't bike ride - just learn what your body can handle), etc.

I have a livejournal group for this, which is dorky but it's a good group and in the "memories" section is quite a lot of good, useful information. The main page also has links to all the usual suspects for IC - IC Association and IC Network being the two key places (though be aware that in an effort to bring lots of options, there's a bit more selling than I'm personally comfortable with on those sites). The actual LJ community is here; if you don't have an LJ but want to post a question, just let me know (alivii@gmail.com) and I can post it for you.

I'll check in on the thread later to see if you have follow-up questions; hope I covered some of the important stuff already. Probably talked too much as usual. :)
posted by livii at 10:44 AM on July 12, 2005


Livii:
I appreciate your helpful and detailed response. I should have said in the beginning, of course, I have seen a Doctor, have had the tests that diagnosed Interstitial Cystitis, and NOT a Bladder Infection. Thanks also for saying that Cranberry Juice is NOT recommended!
I have no pain. Just frequency. I can get up as often as 8 times a night. I have been unable to relate it to anything but a very spicy 'Pizza' type diet. Caffeine, wine, citrus, seem to have little affect on trips to the bathroom.
I symapthasize to those who live with pain for a condition for which there seems to be no cure. I also sympathaize with those who can not work or go through a normal day, away from the restroom.
Fortunately, this is not me, but none-the-less, I have interrupted sleep.
Please advise and thank you,
posted by pony at 3:49 PM on July 12, 2005


Overactive bladder is my biggest problem with IC as well - when it's bad, I'll get up so many times at night that I'm exhausted in the morning, or I worry about going out because I need to be able to find a place to go pee.

You should consider trying one of the OB-specific drugs, like Oxybutynin (sorry, spelled it wrong in the last post) - which they've now released as a patch in the US (if it comes out like that here in Canada, I might try it again). I'm not sure why it didn't work for me, but I've heard good things about the patch method of application - it's a slow release that way, and apparently it's quite good. There are side effects to the drug - I had wicked bad dry mouth, and it can also cause constipation and you have to be careful not to overheat, but if it works, I think that's probably worth it.

I forgot to mention spicy foods above, but those can definitely have an effect on IC. And with the caffeine, alcohol, and citrus - you might want to try going off all of it for several weeks, your body might need time to adjust. I went off caffeine (thankfully I never was a coffee-drinker) but for a few weeks I was cranky and sleepy and still peeing all the time, but after a while it improved quite a bit and now other than when I flare, my night frequency is tolerable. I still eat a limited amount of citrus, and I drink low acid OJ, for example, but being careful helps.

Glad my response was helpful; I do think your best bet is diet modification and getting some drugs. The overactive bladder meds are not a cure - I think they say you have to take them forever, essentially, but it might have an impact, and it's always possible that your symptoms will change in the future - lots of IC patients go in and out of remission, and my (completely unscientific) observation has been that people who get themselves healthy through diet, drugs, whatever end up with longer remission periods because their body and bladder is healthier.
posted by livii at 6:41 AM on July 13, 2005


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