Interstitial Cystitis Advice

Hi Claudia,

Though I permitted this post at the time, I felt then - as I do now - that there may be something spammish about it. In other words I'm not 100% convinced that the poster really has IC or that they're not just trying to make a quick buck. I say this because "Sherry" posted the same comment multiple times across the site, but I deleted the other ones and also wrote to her about it. I did not receive a reply back around the time of her posts, so I'm afraid you might not get one now.

There are rarely "quick" or miraculous fixes when it comes to IC, so it is always wise to proceed cautiously with anyone or any site that claims to have found an awesome cure for IC. Instead going through traditional medical channels, adopting an IC-friendly diet, and perhaps trying well established IC supplements is a safer route, which hopefully will not leave you feeling like you've been sold snake oil.

If I can be of any further help to you in this matter, please don't hesitate to let me know.

Yours in IC,
Jessica

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Jessica Cangiano: ICadvice.com creator and administrator

I have IC, but IC doesn't have me!

Hi Annie,

A warm welcome to ICadvice.com!

My apologies for not getting to your message sooner, I'm having a rough time health wise at the moment (though it's not IC that's keeping me from the computer, it's an entirely different condition) and just saw your message now. First off, I'm very sorry to hear about the difficulties that you've been encountering and the strain that IC is putting on your life. Thank you for posting your question here, I'm going to take a stab at answering and hope that other site members will jump in and provide their thoughts as well.

Are you suffering from an UTI (urinary tract infection) on top of your IC? I just ask because Ciprofloxacin is an antibiotic, not a drug that stands to help IC (though many misinformed doctors continue to prescribe antibiotics for IC, especially prior to a formal IC diagnosis, even when urnie tests come back negative for infection). IC has not been found to be an infection and thus very few ICers find that antibiotics alliterate or help with their Interstitial Cystitis symptoms. If you do not have an infection (bladder related or otherwise), you may want to discuss stopping the use of Ciprofloxacin and trying more IC appropriate medications such as Elmiron, antispasmodics (e.g. Ditropan), Antihistamines (e.g. Atarax), Tricyclic Antidepressants, which are used to help combat IC symptoms not per se as antidepressants (e.g. Tofranil and Elavil), or any of a number of other medications that have, in some cases, proven useful in the treatment of IC.

I'm afraid that I that my IC simply does not tolerate any alcohol of any type whatsoever, so while I can't personally recommend a wine that's worked for me, perhaps you'll find the following suggestions of some help. Wine is a tough liquid for our bladders to handle, in addition to being acidic, wine contains substances such as sulfites, histamine, and tyramine which are well established bladder irritants. In terms of combating the acidity factor, you can definitely try using (the over-the-counter acid reducer) Prelief. Though Prelief is not designed to help lessen the affects of the other substances in wine (and other foods) that can upset our bladders, it can help with the acidity factor. I think that you're on the right track in terms of looking for a wine that's low acid (make sure it's one that truly has a lower acid level, as opposed to one that's merely described as tasting less acidic on the tongue). In general I've heard other ICers report that they find white wines and sweet dessert wines to be more tolerable than red wines (which is not surprising, as red wine has more histamine -and tannins, another known bladder irritant - than white). Some ICs also find that clear hard liquors like gin or vodka (while still very acidic), in small quantities, are easier on their bladders than beer or wine, as some types lack some of the irritants found in wine (and beer).

Eating for IC can definitely be challenging and take some getting used to. The most important step is to identify which foods are your main triggers (in other words, which foods upset your bladder the most and cause your pain levels and/or other symptoms such as frequency to flare up). Though this can be done by trial and error, that's a rather slapdash approach in the sense that it can be harder to pin down which foods bother your bladder if you're not testing them one at a time (for example if in the course of a given day you ate ten separate foods and at night your bladder was flaring, you might think that the tomatoes in your salad at lunch were to blame, but that's not an absolute given, it could have been the onions in your pasta or the strawberry jam you had at breakfast - or all of those foods!). The more thorough approach is to start with a relatively simple diet of foods that you are as sure as possible do not bother you (and/or which are well established as being IC friendly, like oatmeal, plain rice, carrots, potatoes, plainly cooked chicken/turkey, rice cakes, and water) and to then try introducing "new" foods in one at a time. Give your body at least 24-48 to see how it responds to each "new" food (for example, a fresh peach or a store bought breakfast cereal), before moving onto another "new" food. I highly recommend that while going through this elimination diet process you keep a journal (on the computer or on paper) of how your bladder responded to each food (whether it was a negative or a positive response). If your symptoms really flare when you try, for example, cola, than it may simply be a food, that at least for the time being, you'll want to cut out of your diet (I say for the time being, as sometimes your bladder will respond to foods differently when you're taking certain IC meds or with the use of an acid reducer like Prelief). However if you try leeks and only feel a little spike in your IC symptoms, leeks may be a food that, in moderation and when combined with other foods that do not upset your bladder, you may be able to eat. If you try a food and feel fine (aka, your day-to-day IC symptoms didn't increase), there's a decent chance that it's a "safe" food for you. To be doubly certain, you can always try it again at a later date. It's a good idea to remember that sometimes it's a combination of foods, as opposed to single ingredients, that can do your bladder in. If you can eat bananas and you can eat artichokes on their own, but find that when you eat them both on the same day, your bladder flares, you may simply have to avoid consuming both of them within a day or two of each other.

I speak from experience when recommending that you give an elimination diet a go, I did it myself for IC (and for a gastrointestinal condition that I have, IBS, as well, before I had developed IC) and though it can take a few months to work through (of course no one can ever try all foods, but you'll find that once you work through the most common every day items, you should have a much better understanding of what your triggers are, and then, later on, when a new food that you want to try comes along, simply try it as you did with all the other items, ensuring that on the day you sample it, the rest of your diet is as IC friendly as possible), in the long run it makes managing your IC significantly easier, in my opinion.

I'm married myself and understand what you mean about trying to provide meals that work for both of you. The simple truth is, I usually cook two meals/snacks or elements of two meals/snacks (for example a red pasta sauce for hubby and a white one for myself, or green tea for him and peppermint tea [technically a "tisane"] for myself, in the first case we can share the same pasta and in the second, the kettle of boiling water). This doesn't necessarily have to be much more time consuming than just preparing one meal, so long as you plan ahead a bit and try aim to cook foods that take about the same amount of prep and cooking time (it may cost a little more in terms of your grocery bill, but I feel that a happier bladder is worth a few dollars for sure!). Also remember that your spouse can make his own meals - at least once in a while! Or all the more better, he can cook for both of you and give you a much deserved break from the kitchen.

In terms of meals that work well for both people (and/or whoever else you may find at your table) and that are IC friendly, I've had success with roast chickens and chicken pieces (omit the use of wine and/or lemon juice, and opt for fresh herbs and, if your bladder is fine with it, garlic, instead), baked/grilled/pan cooked/poached fish (again, omit anything acidic, lemon wedge can always be provided at the table, or use two pans and cook your portion without lemon), potato dishes (everything from a nice mash to scalloped potatoes), rice/grain dishes (skip those with tomatoes, alcohol, hot spices and any cheeses that you know upset your bladder and instead focus on the inclusion of IC friendly veggies, herbs, mild spices and stocks such as chicken or vegetable), and IC friendly soups. Due to IBS, I'm not able to eat red meat (beef, lamp, pork, game, etc), but again, provided you are able to eat these foods, cook them without bladder irritants and the meal should go down a treat. For breakfasts things like pancakes, waffles, toast (made from bakery fresh bread, which tend to have less preservatives than than their "don't expire for two weeks", "live in a plastic bag" counterparts do), oatmeal, oatcakes, homemade granola, eggs (why not try an IC friendly omelet made with mozzarella cheese, fresh basil and bell peppers?), French toast, homemade hashbrown potatoes, or even (bladder friendly) rice pudding.

You're right, Annie, IC can suddenly take up centre stage in your life - and goodness, it can be frustrating at times! - but I think that simply by asking questions, looking for IC websites and trying to eat for IC, you're taking big (and very important) steps towards helping yourself regain some of the control that you may feel IC has over your life. As with any major life change, the development and acceptance of a chronic medical problem takes time. I encourage you to read through this site, check out the recipe section and post your questions on this forum. Seek out fellow ICers (whether here or elsewhere, I'm not sure where you live, but some large cities around the world have IC support groups), and try to speak to your doctor about trying IC appropriate medications, and if you don't have one already, getting referred to a urologist, who may (should! but there are few givens in this world) have a better understanding of IC than your GP.

Please feel to post anything you like on this forum, we're here to help. And remember, you are not alone in your battling with IC.

Support and healing wishes,
Jessica

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Jessica Cangiano: ICadvice.com creator and administrator

I have IC, but IC doesn't have me!