If you’re living with interstitial cystitis (IC), dealing with the pain can be tough. Here are some tips and resources for dealing with IC
Update 12/23/17: After I wrote this post, I got a second opinion from a urologist who determined that I don’t have interstitial cystitis.
- Read up on the posts about my health journey (in order by date):
- Living with IC: Finding hope through the pain (December 2015)
- Interstitial Cystitis Resources and Helpful Tips (this post) (December 2015)
- Misdiagnoses, Hormone Imbalance, and Life (February 2017)
- Hope for Healing: Health Update and IC Diet (July 2017)
- Mona Lisa and a New Diagnosis (January 2018)
- Adenomyosis and Surgeries (November 2018)
Hey friends, how are you doing today? I hope you’re enjoying your day so far! Today’s post is a follow-up to my last post. If you read my latest post, then you’ve gotten to know me a little better and found out about my struggles with Interstitial Cystitis.
Since I believe that hope is a powerful tool for recovery during any health struggle, I didn’t want to leave anyone hanging! Today’s post is all about tips, info, and resources, that I have discovered that have helped ease my symptoms of IC.
If you are struggling with IC or you are close to someone who has this, read on and pass it along so more people can grab on to a little hope! This post is a long one, but there is so much good information here, so read through it and hopefully you will find some good resources, tips, and products to use if you have IC.
Basic IC Diet Tips
- Drink, Drink, Drink! Stay hydrated: dilute urine doesn’t cause as much pain in an irritated bladder
- Avoid high acid foods
- Avoid spicy foods
- Avoid allergens: If you have food allergies, those can also trigger IC flares so be vigilant with food allergies and intolerances
- Balance diets: If you have IBS too, try to balance your IC diet with a low-FODMAP diet and try to embrace variety within both. I’m not super strict with either diet: I am flexible with both diets otherwise I would go nuts haha 😉
- Avoid “cheating” so your bladder has a chance to heal: It’s tempting to cheat and have a little bit of things that cause bladder pain, but the ultimate goal is to allow your bladder a chance to heal, and that’s hard to do when you continue to have triggers. I have to remind myself of this all the time! It’s tough but worth it
- Try Prelief to help reduce acid in foods: some people recommend baking soda and water to reduce acid in your foods and in your urine, but Prelief works the same way without the sodium and it’s easier to take
- pH test papers: these are handy if you’re curious about how acidic your favorite drinks or foods are. They aren’t super accurate, but it will give you an idea of the acidity of certain foods and whether you should cut back or avoid them
IC diet resources:
- Diet tips for Managing IC (Elmiron website)
- IC Diet and Food List (IC-Diet.com)
- IC/PBS Master Diet Reference Guide (ICHelp.org)
- IC Network Food List (IC Network)
Electrolyte drinks and drink mixes have been a hit and miss for me. I discovered that the drinks and mixes that contain fructose really bother my IBS (FODMAPs), but the ones without fructose often have citric acid in it that irritate my bladder. I need to watch my acid intake because of my IC, so I try not to drink too much with citric acid in it.
There is conflicting information regarding potassium and IC: some research has shown that potassium seems to bother people with IC and some people say it doesn’t bother them at all. You really do need potassium to stay healthy, so consider getting potassium from natural, whole-food sources. I personally have found that potassium in high quantities in electrolyte tablets and drinks seem to bother my IC.
Here are a few of the things I have found that work good for electrolytes:
- Propel electrolyte water and Glaceau Smart Water: This is what I’m currently using now for electrolytes. No added sweeteners or citric acid so it’s been a safe bet for me. I usually mix these two waters together since the Propel water doesn’t taste fabulous. Also the Propel water has sodium but the Smart water doesn’t, but the Smart Water has magnesium and the Propel water doesn’t, so mixing them together gives me a better electrolyte profile than just one alone.
- Ultima Replenisher: this has no fructose, but it does have citric acid so use wisely. I never had an issue with this until our long bike ride. During our ride I used the packets of Lemonade Ultima with us. That probably had more acid in it than the other flavors and wasn’t a great choice for me – I think that was partly why I had a big flare besides the bike riding (along with the caffeine in the chews and gels I ate). If you’re not guzzling this, you should be alright, but experiment a little to see what works.
- Hammer Endurloytes: if you still can’t find an electrolyte drink or drink mix that works for you, try electrolyte tablets. The ones from Hammer are pretty good, although I have had some issues while using this. I do think the potassium concentration in these bothers my bladder a bit, so I don’t use these often.
- Coconut water: this is only good if you are not on a low-FODMAP diet. If you are on a low-FODMAP diet, you should probably skip this or only have this occasionally. Coconut water is a good source of electrolytes, but it is high in polyols and oligo-fructans so if you have IBS I wouldn’t drink this every day. Coconut water didn’t seem to bother my IC or my reflux, but I did have to stop drinking it daily because of my IBS.
Coffee, Tea, & Alcohol
After my big IC flare back in August, I couldn’t get much relief until I guzzled water and completely cut out coffee and caffeine. It was tough going without coffee and caffeine the first couple weeks but after getting over the initial hump, things got better. I like to have a cup of coffee once a week or so as a treat, but I have found that it needs to be decaf or I get quite a bit of bladder pain.
When I was making changes to get improve my IC flare, I did a little experiment to see what was bothering me in the coffee: was it the caffeine, the acid, or the coffee itself? I bought some decaf and low acid coffees to see what I could tolerate. Low acid coffee still bothers me, and supplements with caffeine cause me bladder pain too, so I know it’s partly the coffee, less so the acid in the coffee, but it’s mostly the caffeine.
Some people have good luck with organic and low acid coffee, but even the low-acid coffee and decaf coffee seemed to bother me so I think I may have developed an intolerance to coffee and caffeine. But everyone is different, so you can experiment and see what works for you.
As for alcohol, I don’t even bother drinking alcohol because of my acid reflux, IBS, IC, and yeast-intolerance. Too many issues there to even bother with alcohol! I have never been a big drinker, so I don’t miss it. I’ll take small sips of my husband’s drinks sometimes for a taste, but that’s about it.
HINT: if you want to reduce the acid in your coffee, some have suggested adding a bit of baking soda to it. I find that this ruined the taste of my coffee (back when I was still drinking it), but a dash of salt is better and less noticeable. Salt helps neutralize bitterness and acid better than most things and doesn’t affect the taste much if you don’t add copious amounts (a dash or pinch is fine). I have heard that this is also how French people prepare their coffee as well, and Alton Brown swears by this. It has worked for me!
- Puroast coffee: low acid coffee and they have decaf varieties in regular and organic. The Puroast Organic coffee doesn’t taste too bad. It is different tasting than regular coffee since acid gives coffee some of it’s flavor, but it tastes pretty good.
- Other low acid coffees I haven’t tried: Healthwise, NGN Coffee, and Hevla. There are others out there, but probably too many to list here. These ones have pretty good reviews and ratings
- Teechino: if you have to swear off coffee completely, then this might be the way to go. It’s naturally decaf and it comes in different flavors. Some do have gluten in them from the roasted barley, but they do have some gluten-free flavors available
- Decaf teas and herbal teas: I love tea anyway, so switching to decaf tea isn’t so bad, and you can always find wonderful herbal tea blends to drink!
Keeping liquids moving through your body is key for reducing bladder pain in IC. Water retention is the last thing you want when you have an IC flare: if you can’t keep your urine diluted, you will be hurting!
You can drink some natural herbal teas as a mild diuretic to ensure that water is moving through your system like it should. Don’t go for any strong diuretics or that can actually bother your IC. Here are a few mild diuretics that help:
- Dandelion tea: reduces water retention and keeps liquids moving through your urinary tract system
- Cornsilk tea: this is probably your best choice since it not only is a very mild diuretic, but it is also supposed to help heal the bladder as well
- Water, water, water: Don’t be afraid to drink lots of plain water! This will help keep your urine diluted and less acidic, helping a bit to ease IB bladder pain
- Hibiscus: I haven’t used this a whole lot recently, but hibiscus is a mild diuretic. I have found that hibiscus tea might be a little bit acidic, though, so keep tabs on that.
Diuretics to avoid:
- Caffeine: caffeine can be irritating to a lot of people with IC, so this is something you really should avoid.
- B-Vitamins: too many B-vitamins can be diuretic but also very irritating to your bladder if you are having an IC flare. Be very cautious with B-vitamin supplements: the dose tends to be way too high (well above the recommended daily dose) and they can dehydrate you quickly if you’re not increasing your water intake. This is not to say you should avoid B-vitamins altogether, but be cautious of b-vitamin supplements and over-doing it with the B-Vitamins.
- Natural Remedies for IC (TreeLite.com)
- Living with Interstitial Cystitis (Women to Women)
- Interstitial Cystitis (some alternative treatment options) (Beth Israel Deaconess Medical Center)
Chocolate is one of those things that triggers my IC flares like nothing else! I can have tiny bits once a week or so, but if I start eating more chocolate more frequently then I start to have bad bladder pain like clockwork. I started having issues with chocolate well before my IC got worse: I noticed a few years ago that chocolate causes bad acne for me, so I think I developed an intolerance to it.
If you think that chocolate and acne is an old wives tale (plenty of people have told me that), check out this new research on the topic. The study done just last spring showed that pure chocolate can trigger acne flares in people who already have acne.
Chocolate is actually a trigger food for most people with IC, and it’s a tough one to replace since it’s so delicious! Here are a few things I have used to replace chocolate:
- Carob chips: these aren’t low-FODMAP (carob is high FODMAP), but I still use them as a replacement for chocolate. It’s not quite the same as chocolate, but when you have it mixed with other things, like trail mix or protein bites, it masks the flavor difference. So far I have tried the Chatfield’s vegan carob chips and the Sunspire Vegan carob chips. The Sunspire chips are less sweet than the Chatfields chips, but Chatfield’s carob chips hold their shape when you bake with them.
- Chocolate flavored Stevia drops: this has been a life saver! When I want a little hint of chocolate taste in protein shakes or protein bites, I add some Chocolate Stevia
- Missy J’s Carob Candy: if you are low-FODMAP, then carob isn’t something you should eat all the time, but when you’re craving something sweet that kinda resembles chocolate, Missy J’s treats are yummy! They are dairy-free, too, so that’s a bonus, plus they taste good.
P.S. The Missy J’s treats would make a thoughtful Christmas gift or stocking stuffer for someone in your life if they have IC or chocolate intolerance!
The Chatfield Carob chips are vegan, nut-free, dairy, and gluten-free
In some ways, this can be the most stressful part of having IC beyond the pain. Bladder pain can cause irritation all over down there, so it can be a real kill joy when it comes to intimacy.
I have heard some holistic folks recommend putting cloves of garlic in your vagina, but that seems a little bit sketchy and I wouldn’t recommend that. Since IC is completely different than a UTI or a vaginal infection, it should be treated differently and garlic inserted vaginally won’t help the source of IC pain. I would just say no to that one!
- Change lubricants: if you use a big brand lubricant (like KY or Astroglide), consider switching to an all-natural brand like Sliquid or Coconu. If you have irritation and sensitivity then those chemicals in regular lubricants can make irritation worse. If you have IC and you’re not even using lubrication, you consider starting!
- Frozen coconut oil: this is something I have tried a few times when I have had irritation and this seems to help soothe irritated tissues. Take a bit of coconut oil and shape it into a small ball (maybe 1/4 to 1/2-inch across) quickly before it starts to melt. Make a few of these then put them in a plastic container and freeze them. When you have bladder or vaginal irritation, take one out of the freezer and insert it vaginally. It will melt quickly and provides some soothing lubrication. Coconut oil is also a natural anti-fungal so it’s good for that too. If you want to try this, consider wearing a panty liner to save your underwear from getting stained by the coconut oil, and make sure you’re using high-quality and clean coconut oil (organic if possible). This isn’t a cure-all, but it provides some relief! You can read what the experts say about using coconut oil vaginally on Women’s Health.
- Ice packs: I have heard of some people sitting on ice packs or heating pads after sex if they have a lot of irritation and inflammation. I haven’t tried this myself, but it’s worth a shot!
This one is a struggle for me mostly because I feel that sometimes high-impact exercise bothers my bladder a bit, but I haven’t given up my running or other exercise habits. In general, low impact exercise is better for people with IC (yoga, elliptical, etc.), so it’s a good idea to find what you enjoy and what works for you.
Bike riding does seem to be an issue for people with IC and I can attest to this personally. This is a tough one since bike riding is something I enjoy doing with my husband since he loves to bike. I haven’t given up on my favorite exercises yet (though I haven’t done much bike riding since August to avoid another big flare) and I’m hoping that I can heal my body enough that exercise won’t bother me.
I do have to re-evaluate my goals, though. I had hoped to eventually be able to run a half-marathon or marathon, and I had hoped to ride again this summer, but that will all depend on where I’m at with my IC. I’ll keep taking my medication, watch my diet, hydrate like crazy, be smart about my exercise choices, and pray!
A Few Things to Avoid or use with Caution:
- Lots of citrus: I have heard of people recommending drinking lemon water for IC but I actually think that is a bad recommendation. As much as people say it is alkalizing, drinking citrus water probably isn’t a great idea if you have IC.
- Cranberry juice: this is good for people with UTIs, but not good for people with IC since it has so much acid in it
- Sitting too much: if you have a desk job, get up and move regularly and consider using a standing desk.
- Tight clothing
- Thong underwear: I have found that this can cause irritation if I’m having IC flares, so I try avoid these as much as possible
Disclaimer: this post is for informational purposes only and is not intended to replace medical advice from a qualified healthcare provider. Always use common sense and seek medical attention when needed
Food allergy mom and healthy living blogger! Sarah is also an ACSM Certified Personal Trainer, ACE Certified Health Coach, and an ACE Certified Fitness Nutrition Specialist