Thursday, October 9, 2008

Bladder Pain & Diet

I recently came across a press release from Northwestern University -- via this really cool automated science search engine, e! Science News -- about research that suggests that the pain of interstitial cystitis (painful bladder syndrome) could be due to an irritated colon.

The way the press release is phrased, it sounds like the researchers concluded that ALL pain associated with interstitial cystitis comes from the colon. I don't know how that can be true if, under close examination, the IC bladder often reveals that it has open wounds in its wall. It seems like in many cases for at least part of the pain, the bladder itself must be involved.

Anyway, I've been wondering for a while if some of my pain couldn't be directly related to how happy my gut is --not only how gluten-free I'm eating, but how at ease things are down there. It's one of those things I wouldn't consider if I didn't live inside my body doing that unwritten chart we all do over time of our lives versus our pain.

The times when I've felt best down netherly -- my two biggies being very low moment-to-moment pain and easy peeing with pain only at the beginning -- are the times when I've stuck to a diet that averaged out to the following: eggs and red-potato hash browns, fish and steamed zucchini, an extra fruit or veggie or two, peanut butter (perhaps melted with some pure maple syrup), orange juice. Maybe it changed around a little bit, but that was the core "idea" of the diet (though "idea" makes it sound intentional when really it was the result of elimination and not wanting to cook much).

So now that I've read about NU's study, I really have to wonder if that diet didn't make me feel so much better because it was easy on my gut. It doesn't include a lot of fiber (I'd need some rice or beans), but it looks pretty gut-soothing overall. I used salt and black pepper but no other spices. Lemon on the fish.

I also have to wonder if the IC diet doesn't help people not because it doesn't harm their bladders, but because it soothes their colons. I mean, no coffee, soda, spices -- wouldn't we all feel better? So I'm thinking maybe I should follow the IC diet for a while -- or at least a little of it -- to see if I notice a change. As I said before, I'm still not sure where the IC/vulvodynia line falls, at least in my body, and maybe my bladder needs some help.

The IC diet includes a list of forbidden foods on which is my favorite food in the whole world: orange juice. I'm doubtful that giving up my OJ will make my pain improve, but I guess I'll try. After this jug is through, I'll switch to juicing pears for a while (not a bad alternative).

The next hardest thing for me to eliminate will be spices. Oh man, I love spicy things. Is black pepper a spicy thing? Because it's my second favorite food, and without it I resort to peanut butter for love. Which, though I don't see it, is probably another IC no-no.

So, yeah, on to the land of simplicity. I'll call it that instead of denial. My parents are out of town; when they get back, I'm going to ask my dad to help me find OTHER THINGS to eat so I don't fall asleep at my plate. (Though confession: I could eat eggs & potatoes every, every, every day and not care.)


  1. thanks for the thoughts! Everything went very well, I'll post soon!

  2. Esther,

    I have vulvodynia/vestibulitis, IC & IBS... plus MANY other illnesses.

    I absolutely believe (from personal experience, experience of women from my endometriosis support group, and from what my pelvic pain specialist has said... that bowel and bladder problems set each other off! It's like a vicious cycle).

    As far as dietary changes, it sometimes becomes a "chicken or the egg" scenario trying to figure out what dietary changes do/don't help.

    I miss acidic foods/drinks like my beloved orange juice to be sure... but I have learned the paybacks for me indulging in orange jiuce are just not worth it for me.

    My IC symptoms started in early 1990s. My IBS symptoms started then too. I don't think this is a coincidence.

    Feel free to read more about my crazy-long medical history on my blog.

    Quick summary: my endometriosis symptoms began at age 13. Diagnosed w/endo at 23. I'm 39 now.

    After being group leader of an endo support group for 7 years, I have met many women with IC, vulvodynia/vestibulitis, IBS, fibromyalgia, etc. (By the way, I have all of the above plus many more illnesses).

    While IC is sometimes diagnosed due to pinpoint hemhorrages on the bladder wall, my understanding is that this isn't always the case.

    I had FOUR cystoscopies (3 negative ones by 3 urologists, 1 positive by my pelvic pain specialist).

    The IC treatments he has me on DO HELP!

    Twelve years of IC suffering and the 4th doc finally got me some relief!

    Anyway, as far as bladder removal that you mentioned... that is a VERY RADICAL step and I would get about 4 opinions b/4 considering that to treat IC! But that's just me.

    Bladder removal for cancer is one thing. Having it because a doctor can't manage an IC patient's symptoms is quite another. I'm NOT trying to play doctor but I worry when I hear such radical ideas.

    I take an oral prescription for IC. I also do bladder instillations. Yes, that means I do self-catheterizations at home (of 2 medications). It took some getting used to but the paybacks are SOOOO worth it.

    This regimen has helped me immensely!! There is hope out there for IC treatment methods that DO help A LOT.

    As far as IBS, my best course is watching what I eat. I've had 3 colonscopies and had a foot of my colon removed in 1996.

    I've had IBS set off IC and vice-versa. I totally believe they do set each other off.

    Hang in there and try to find what works best for you. Everyone is different. It's your body and you know it best. Keeping a food journal can help spot patterns like food allergies and/or intolerances.

    Good luck!


  3. Jeanne, I'm so sorry that you're suffering with so many illnesses! That sounds awful. But I'm glad that some of the IC treatments you've done have helped.

    When I mentioned surgery, I was definitely talking about vestibulectomy, not bladder removal. I don't have an IC diagnosis, and I'm not sure a doctor in the know would give me one.

    I don't know if I have IC or just pain crossing over from the vulvodynia, but I think true IC must be so crazy to deal with, so I'm glad you have found some relief. You seem pretty upbeat about it, too!

    Thanks again for your input! I hope you are doing well.