4

votes

Please hack Interstitial Cystitis (IC)

Answered on September 12, 2014
Created January 14, 2012 at 7:48 PM

A female friend of mine struggles with IC, extreme bladder/pelvic pain, combined with something like a constant need to pee even when the bladder is empty. I have researched IC in her behalf and am struck by the lack of consensus overall as to cause and cure. Some treatment methods focus on nutrition, others on mechanistic methods of various kinds, and some methods rely on pain medicine with a high risk of addiction. Still other practitioners claim success using what they call Chinese Medicine. In other words, some treatment methods are localized (installations of various kinds) and others purport to be more systemic (diets designed to reduce inflammation). Most IC sufferers are women. The pain is described as awful. The literature refers to some cases of IC lasting for years, and other cases that resolve "spontaneously" with or without treatment. "No cure but symptoms can be relieved" is a constant refrain on mainstream medical websites.

Does anyone here have any particular insight about this condition?

E7efccb0c1da18d4d1c9968561e386c9

on May 08, 2013
at 07:55 PM

Gosh sorry for the typos. Commenting from a phone is a bad idea :-D

6120c989fd5b69f42a0834b69b87955b

(24553)

on January 17, 2012
at 11:31 AM

When I had IC Tylenol 3 was a godsend when my docs would take enough pity on me to prescribe a week's worth here and there. I'm still not sure if they were worried about me getting hooked, or if they just didn't take pain management seriously, but those were the only nights I could sleep lying down for over a year. Anything you can do to advocate for her in regards to managing the pain I'm sure would be rewarded with much gratitude. I remember only being comfortable sitting in a semi curled position in Papasan chair. You could get her a piece of furniture to nest in until she heals.

6120c989fd5b69f42a0834b69b87955b

(24553)

on January 17, 2012
at 11:19 AM

Your answer sheds light on a decades old mystery to me. I was diagnosed with "possible IC" when I was in college and lost over a year of my life to debilitating pain, and almost dropped out of school. I had the variety where the pelvic floor ended up with a lot of inflammation from a UTI that didn't respond to treatment for a long time, but long after the infection was gone the pain stayed. My urologist prescribed a drug normally used for high blood pressure and PTSD, that caused 6+ months of nightmares and bloody noses, but the pain finally started to recede.

Cbb1134f8e93067d1271c97bb2e15ef6

on January 15, 2012
at 01:40 AM

I do not believe the *cause* has anything to do with these foods. But once the bladder lining becomes inflamed and maybe you get Hunners ulcers, specific foods become irritating.

Cbb1134f8e93067d1271c97bb2e15ef6

on January 15, 2012
at 01:39 AM

(continued from above) I had to split the dose - one tab in am and one tab in pm with same water routine. Also, artificial sweetners are big offenders for many. I didn't use them very often, but compeltely eliminated them at that time. Over years, I have been able to carefully return to drinking a couple of 1/2 caff cups of coffee/day, some teas, nuts and some carbonated water. But for a long, long time, I had none of that, and still strongly moderate.

Cbb1134f8e93067d1271c97bb2e15ef6

on January 15, 2012
at 01:35 AM

@Dorado Galore: One sort of "good" thing about IC is that at least in my experience, I found that the response to offending foods was clear and rapid. When feedback is clear, pretty intense and rapid, it can help more quickly with making changes that will work and with reinforcing foods that do not work ---> PAIN. Another thing I neglected to mention is that I took a high quality multi that required two tabs/day. In order to tolerate this in my bladder, i had to get creative - drink like 8 ounces of water before tab and about the same amount with as it irritated my bladder bigtime. And

Medium avatar

(8239)

on January 14, 2012
at 11:27 PM

Wow, what a fantastic success story. I'm so glad I raised this question. Thank you.

Cbb1134f8e93067d1271c97bb2e15ef6

on January 14, 2012
at 09:49 PM

+1 for a question about a very debilitating condition!

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9 Answers

6
Cbb1134f8e93067d1271c97bb2e15ef6

on January 14, 2012
at 09:48 PM

The pain IS awful.

Let's put it this way. I lived through ulcerative colitis at the same time I developed IC. Hands down, if I were told that I had to choose to have one of them, even though ulcerative colitis can have much more dire and truly life threatening outcomes longterm, I would choose UC. The constant pain of IC was beyond the pale for me, not to mention the pain of feeling some 40 times a day that I HAD to void with much of the time there being nothing to void, or a tiny tinkle accompanied by pain I can't even really describe.

For me, very quickly, the IC pain was ever present. Let me be clear: it was never not there. For me, it was gripping, sort of nerve-like pain centered in my bladder area which also frequently caused constant aching pain that radiated into my legs.

What helped? Prior to the IC developing is when I had laid on all my weight over a period of about 3 years. I had also begun to have constant vaginal yeast infections which were very difficult to clear up and would recur within a month.(I was peri-menopausal, in my early and mid-forties at the time.)

Cutting to the chase, I went on a VLC diet. Within less than 6 months or so, this stopped all the vag yeast infections. I went through a long waxing and waning period with the UC, which went into complete remission inside of 3 years, and got much better year by year within this period.The IC also waxed and waned. It was not until I got very serious about a specific IC diet that the IC went into remission. That diet axed what seem now, per some research, to be the BIG offenders for many: coffee, all caffeinated beverages, teas, spicy foods, tomatoes, anything CARBONATED including stuff like "good" carbonated waters, and any alcohol whatsoever. Any choco late and nuts were also problematic then for me, though chocolate was a great rarity. I also stayed away from cured foods. I was basically a non-alcohol drinker anyhow, so that was inconsequential. I also drank LOTS of water constantly and still do. Given that I was low carbing, I wasn't eating citrus anyway. But in the past, prior to diet change, had been a substantial cranberry juice drinker, which most find horribly irritating with IC. There is a long list of foods which can be possible offenders with IC, but starting with the above may be a good first intervention.And the value of "eating clean" goes without saying!

I used Ibuprofen with excellent response. This doesn't mean that the pain went totally away, but, would get down to a level where I could work and get some sleep. I also used benadry and vistaril sometimes along with ibuprofen, at bedtime. I refused opioids as it was clear to me that there isn't enough opioid in the world for IC and that spells high risk for addiction from the get-go with a chronic condtion, even in those who like myself, have no addictive history. That is simply my opinion and I certainly don't lay it on others.

I also took very high quality omega 3 and titrated it up over a year to about 8 grams. It is my opinion that this had a substantial healing effect on both the UC and IC, as well as accompanying depression, but I don't KNOW that, as in I can't prove it. I have continued to take O3 at a 2-3gm/day level since about 02-03, now more often 2 than 3. I also was a very clear cut case of estrogen dominance for many years with severe PMS -->PMDD, and began using progesterone cream on a peri-menopausal schedule, prior to going low carb. How this may or may not have affected the IC/UC, I do not know. I also took DHEA, the dose of which I cannot remember,(under 50mg) for one year in the beginning of dietary change. I was targeting depression and also have no idea of how this may have affected anything else.

There's alot more good info out there on IC now. I like the following link, in particular the "About IC" and "Living with IC" sections which branch off into alot of good stuff.

http://www.ichelp.org/page.aspx?pid=329

My IC has been gone since late 02 or early 03.

IC is rated by WHO or CDC, can't remember which, as producing disability on a level with cancer.

Medium avatar

(8239)

on January 14, 2012
at 11:27 PM

Wow, what a fantastic success story. I'm so glad I raised this question. Thank you.

Cbb1134f8e93067d1271c97bb2e15ef6

on January 15, 2012
at 01:40 AM

I do not believe the *cause* has anything to do with these foods. But once the bladder lining becomes inflamed and maybe you get Hunners ulcers, specific foods become irritating.

Cbb1134f8e93067d1271c97bb2e15ef6

on January 15, 2012
at 01:35 AM

@Dorado Galore: One sort of "good" thing about IC is that at least in my experience, I found that the response to offending foods was clear and rapid. When feedback is clear, pretty intense and rapid, it can help more quickly with making changes that will work and with reinforcing foods that do not work ---> PAIN. Another thing I neglected to mention is that I took a high quality multi that required two tabs/day. In order to tolerate this in my bladder, i had to get creative - drink like 8 ounces of water before tab and about the same amount with as it irritated my bladder bigtime. And

Cbb1134f8e93067d1271c97bb2e15ef6

on January 15, 2012
at 01:39 AM

(continued from above) I had to split the dose - one tab in am and one tab in pm with same water routine. Also, artificial sweetners are big offenders for many. I didn't use them very often, but compeltely eliminated them at that time. Over years, I have been able to carefully return to drinking a couple of 1/2 caff cups of coffee/day, some teas, nuts and some carbonated water. But for a long, long time, I had none of that, and still strongly moderate.

1
131fa38ebb54307ab4e38b677f39644f

on January 16, 2012
at 08:33 PM

Great question and it's important to understand that we now believe that there are several "subsets" or "phenotypes" with a diagnosis of IC. Some patients have "Hunner's Ulcers" while others have no visible bladder wall damage. Some patients have pain, while others just struggle with frequency/urgency. Some patients have concomitant pelvic floor muscle tension and dysfunction that contributes to pelvic pain, while others don't. Quite a few patients have IC, IBS, vulvodynia (or prostatodynia) and other related conditions... while others simply have just bladder symptoms. Thus, we now strongly suspect that IC is indeed probably a couple of different conditions.

In the case of your response to diet, that strongly suggests that you have the dominant "bladder wall" trauma/wounding/irritation form of IC... because when you stop irritating the wounds in the bladder through diet, symptoms improve. Diet modification, on the otherhand, would not be helpful to someone whose primary problem is muscle tension.

So glad to hear that you are doing better. I, too, respond very well to diet and want to add to your list that multivitamins, VitaminC and Vitamin B6 are notorious for causing bladder wall irritation. The same is true for drinking overly filtered water, such as through a Brita water filter, that produces more acidic, thus irritating, water.

The IC Network will be releasing their new 2012 IC Food List next month, along with a new iphone app that you might find helpful.

As to books, a couple of recommendations

For overall IC info and insight into traditional treatments - IC Survival Guide (Robert Moldwin MD)

For pelvic floor dysfunction patients - Ending Female Pain (Isa Herrera) or Help Pelvic Pain (Amy Stein)

For alternative strategies - The Better Bladder Book (Wendy Cohen RN) or IC Naturally (Diana Brady CNC)

For IC diet information - A Taste of the Good Life: A Cookbook for an IC Diet (B Laumann), Confident Choices: Customizing the IC Diet (J. Beyer RD). Confident Choices: A Cookbook for an IC Diet (J Beyer RD), The Happy Bladder Cookbook (Mia Eliot), The Happy Bladder Christmas Cookbook (Mia Eliot)

You can also find much more information on diet, treatments, pain care, as well as some nice videos on the IC Network website - http://www.ic-network.com

6120c989fd5b69f42a0834b69b87955b

(24553)

on January 17, 2012
at 11:19 AM

Your answer sheds light on a decades old mystery to me. I was diagnosed with "possible IC" when I was in college and lost over a year of my life to debilitating pain, and almost dropped out of school. I had the variety where the pelvic floor ended up with a lot of inflammation from a UTI that didn't respond to treatment for a long time, but long after the infection was gone the pain stayed. My urologist prescribed a drug normally used for high blood pressure and PTSD, that caused 6+ months of nightmares and bloody noses, but the pain finally started to recede.

1
E532db32a9aa9c1b37fda35d1c72c074

(220)

on January 14, 2012
at 09:35 PM

my fianc?? has IC and we went through the similar frustrations to those you are describing--the lack of concrete dietary advice, etc. i don't know if his approach will work for your friend, but here's what worked for him: we found a list of foods that were bad for IC and cut them out for 1 month and then added them back in one by one (arbitrarily/in the order that he missed them). we discovered that he is extremely sensitive to potassium--even to the point that he had to switch multivitamins to one without potassium in it. after this experiment his symptoms are very well controlled. he also takes a daily medication and one when he has symptom flares. hope this helps!

0
57646c6a7df51657e2af4cec5d30e43d

on August 08, 2013
at 05:56 PM

I'm an acupuncturist and practitioner of "Chinese Medicine." The patients I have seen with IC have benefited from different things. Here is a short summary.

-28 year old female with IC urination frequency and pain with sex was cured through acupuncture and physical therapy from a specialist who treats "pelvic floor syndrome." My understanding of pelvic floor syndrome is simply spasming of the muscles and tendons in the pelvis and anus.

-42 year old female with IC and frequent UTI's. 95% of her symptoms went away after using D-mannose for the UTI's and probiotics to repopulate bacteria after multiple rounds of antibiotics.

-32 Year old female. Dx of IC. All symptoms stopped when she discontinued use of the birth control pill.

That's what I've seen. Good luck.

0
8f7567dbcc67ae85182122bc7a777de0

on August 08, 2013
at 05:09 PM

Definitely check out the link for the IC Network that Jill Osborne posted. Lots of good info can be found there. Diet is so important and also finding finding physical activities that don't hurt your bladder.

I strongly suggest you see a physical therapist who specializes in IC and pelvic floor dysfunction. It can help a lot. The body-mind connection is really important so if she suggests listening to CDs to help you relax then please do it. She has found that people who poo poo the body-mind connection find little, if any, relief from PT. My URO-GYN referred me to the PT and I am so glad that he did!

Also, I have a friend who developed IC many years ago. Someone in a health food store suggested she drink Adzuki bean tea to strengthen her bladder. Long story short, she drank the tea every time it started to act up and has not had symptoms for several years, can pretty much eat anything she wants. You can find the recipe online.

Good luck!

0
E7efccb0c1da18d4d1c9968561e386c9

on May 08, 2013
at 07:54 PM

Ive had ic for 8 years it was horrible at first but though diet I all but cured myself. No tomatoes black pepper or bananas for me. Since going paleo ive noticed that most nightshade family memebers trigger me to varying degrees including paprika. I also started to suspect kombucha in high doses as a trigger which is a huge bummer for me lol. Good news is once you find and avoid trigger food your bladder may heal and you can have a little bit of the trigger foods once in a blue moon so for me that means the occasional glass of wine with friends. Gluten is a huge trigger for me, makes sence since it is an inflamotory agent.

A MUST HAVE. Is an antacid called prelief... it takes the acid out of the food you eat not your stomach and is a life saver while traveling or during flare ups. On the bright side ic forces you to eat very healthy... bonus :-D

I think the worst part about ic is how painful sex can be and the mental side effects of that. It can really screw up your libido due to negative reinforcement.

E7efccb0c1da18d4d1c9968561e386c9

on May 08, 2013
at 07:55 PM

Gosh sorry for the typos. Commenting from a phone is a bad idea :-D

0
A4337ab6880fcbaba08f1faaac1618a9

on March 25, 2013
at 09:12 PM

I'm suffering from what I'm pretty sure is mild IC - occasional bouts of frequency/urgency, sort of unspecific urethral pain, pressure, and each "flare" seems directly correlated to acidic food consumption. I've been paleo for around a year now - my 10-20% includes dark chocolate, rare gluten-free baked good, or homemade ice cream with raw grassfed dairy. Also copious amounts of coffee and/or tea.

For several years, I thought I just had odd bathroom habits - I could urinate fairly well, and then sit there and...trickle...a minute later...trickle...for awhile until I felt my bladder was totally empty. No pain, just annoying.

It wasn't until recently that foods/drinks started bothering me, and my first flare was awful.

I'm still not sure that it wasn't some sort of pelvic floor issue coupled with that straining that eventually progressed into something that could be irritated by acidic substances. I used to be very active, but a wrist and knee injury set me back and it's taken more than a year to recuperate enough to do much.

Paleo diet didn't really seem to do much, but in response to a recent worse flare (mild by IC standards, and I can still count the number I've had on one hand), I'm trying to stick to the IC diet and paleo...so, meat and veg and fat. So far it seems to be dying down, but I'm hoping for something long term.

I have been taking aloe pills (the ones with the GI-irritating substance removed) and have found those useful.

0
13c5a9f1678d75b93f269cdcf69f14d5

(2339)

on January 15, 2012
at 04:57 PM

I found the better bladder book to be helpful.

0
Bad3a78e228c67a7513c28f17c36b3cf

(1387)

on January 14, 2012
at 10:19 PM

I read this book recently http://www.amazon.com/Miracle-MSM-Natural-Solution-Pain/dp/0425172651/ref=cm_cr_pr_product_top. due to my current interest in sulfur. I'm not familiar with the condition, but I believe it was one successfully treated with high dose msm in the author's practice.

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