This month’s nutritional spotlight post is 5 tips for living with interstitial cystitis.
At the beginning of 2017, I was diagnosed with interstitial cystitis (IC). Most of you probably aren’t familiar with the condition, but it is also known as painful bladder syndrome (PBS), bladder pain syndrome (BPS), and chronic pelvic pain. Surprisingly, new research shows that 3-8 million women in the United States may have IC, which equates out to about 3-6% of all women.
According to the Interstitial cystitis association
[IC] is a bladder condition that usually consists of multiple symptoms. Most IC patients have recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, and urinary frequency (needing to go often) and urgency (feeling a strong need to go).
If any of you have had a urinary tract infection (UTI) in the past, I believe the symptoms are very similar. During a “flare up” it essentially feels like you’re living with a UTI, but without the infection present.
The way I was diagnosed with IC was through a scope in which they pushed water into my bladder and took pictures of my bladder walls (cystoscopy). This would enable the physician to tell if it my bladder walls had ulcers (ulcerative IC) or not. Thankfully, mine was non-ulcerative, which makes up of 90% of the IC patients.
This condition came out of left field for me. My physician told me it was common for the on-set to occur for women in their late 20s or for women entering menopause. I want to preface that I had heard of IC prior to my diagnosis, due to the fact that it is encouraged to restrict certain food groups that may be your “trigger foods” that could cause inflammation of your bladder, causing a “flare up.” My physician handed me some handouts on foods that are common triggers, told me that most of her patients go into a “remission” in which they don’t have regular flare ups, or some never again have them by following these particular restrictions.
Now guys to me, at 25 years old, this was the worst thing ever. This list includes a TON of food, soy, alcohol, spices, sauces, and vinegars…the whole nine yards. It is categorized by “Bladder friendly,” “Try it,” and “caution,” all of which I went through an elimination diet to see which foods set me off.
For a foodie like me and my wedding coming up that summer, it was hard for me. Not to mention our honeymoon in Jamaica that would be filled with all the tropical fruits and drinks that should be restricted for IC patients. It was a big adjustment, but I tried to keep reminding myself that other people have it WAY worse than I do.
After being diagnosed, the next few months were trial and error. I reached out to some people who I knew also had it, which gave me hope and helped my sanity. I’ve narrowed it down to a handful of trigger foods that I avoid at all costs. If I do happen to have some of the food on a rare occasion, I immediately chug water (It seems to help with flushing it through).
Some of my trigger foods include:
Yogurt, bananas, tomatoes, strawberries, any citrus fruits such as oranges, pineapple, kiwi, grapefruit, coffee, tea, certain types of alcohol, wine (certain kinds), cranberries, cherries, strong vinegar things (depends), pickled items, citric acid (preservative) and more that I’m discovering as I go.
The reason for this post is to inform you that interstitial cystitis is common and that If you have chronic UTIs (without infection noted) maybe you could be experiencing a “flare up” and I encourage you to speak with your gynecologist or urologist.
I wanted to share a couple helpful tips and tricks that I have learned within the past year and half that I feel like have helped me. I have learned from this process is that everybody is different. Some trigger foods for me might not be the same for others. So keep that in mind if you have IC and are trying out new foods.
5 tips for living with interstitial cystitis
- Drink at least 3 glasses of water before you do anything. This one is probably the most important. I’ve found even if I eat breakfast without drinking water beforehand, my bladder will start to feel sensitive, similar to a flare up coming on. So I make it a habit of doing this, plus it keeps me hydrated and helps to wake me up in the morning. Water will be your best friend if it isn’t already. I always keep a camelbak water bottle on me at all times.
- Find a low-acid coffee to keep you sane. One of my hardest things to give up was coffee. I love the morning ritual of coffee, health benefits and honestly how productive I am after drinking it. A few months after being diagnosed, I decided to venture to some low acidic coffee brands. Here are a couple that I’ve enjoyed,
- Four Sigmatic coffee,which produces a mushroom based coffee. Not only do I love the earthy flavor, I feel really energized without the jitters. I only have 1 cup in the morning, after my water intake and continue to drink water as I drink the coffee. I am an affiliate for four sigmatic, so if you do want to buy something from them you can enter code: Mealswithmag for 20% off.
- Find the perfect alcoholic drink: This one is a continuing learning curve with me. My go-to is a Tito’s or a high end vodka with club soda and absolutely no lime or lemon garnish. I repeat no lime or lemon! I am not a huge beer drinker as is. When I do drink beer I only like the fruity kind, which is sometimes not the best decision since it is almost always made with oranges or strawberries. I’ve read on some forums that low sulfite wine is supposed to be better for your bladder and cause less inflammation, but I’ve bought a couple (granted they were from Trader Joe’s) and they made no difference.
- Buy fresh food and make your own salad dressing: Many processed foods contain soy or citric acid and when I am in a flare-up this is no bueno for me. I also avoid any foods with artificial sweeteners or vitamins, as these can irritate my bladder.
- Live your life and don’t be afraid to eat and try new foods: The first few months I had so much anxiety about trying foods I used to love but wasn’t sure how it was going to sit with me now. And you know what? I flared up then I chugged a few glasses of water took an AZO pill and got through it. It’s all part of growing and learning how my body will respond. Life is too short not to indulge in a glass of wine or two sometimes. I just make sure I hydrate heavily in-between 🙂
Let me conclude by stating that I am no expert in interstitial cystitis, I can only share what I’ve been through. Every trigger can be different from person to person with IC, so best advice is to work with your physician, figure out what is best to help with the pain and try an elimination diet for the list of caution foods.
Do you have IC? What are your trigger foods? I would love to know to help share knowledge and experience!
I was diagnosed with IC in 1995. I keep hoping for a cure!
https://treatinginterstitialcystitis.wordpress.com.
So sorry to hear that, I keep hoping as well! The best I can do is manage my symptoms. I will have to check out your blog!
Thank you for the water and alcohol consumption tips! I was diagnosed a year ago and have been sometimes good, sometimes bad at following the IC diet. Asparagus is the only food I will not touch with a 10 foot pole anymore. Even the smallest amounts can cause pain for me. I read someone’s testimonial about matcha tea having a powerful medicinal effect for them, so that’s my next experiment!
Hey Megan ! I feel like it’s so different for everyone! I can do asparagus but I cannot do tea! Good luck to you with that! It’s a hard journey, hopefully by helping one another we can get a better understanding of IC !
Hey fellow IC friends. I was diagnosed in 2016 after 8 years of not knowing what was happening. At this point, I had so many large lesions in my bladder. The flare ups were like attacks lasting 2-3 hours, almost 3 times a week. For two years, I ate 42 things my nutritionist, mayo clinic, and my uro recommended. It was an extreme clean diet with no seasoning, alcohol, flour, and most things. We stopped traveling. Although, these years sucked. But the attacks were worst. I have flare ups but haven’t had an attack in almost a year. I still stay away from swimming pools, all alcohol, no juices, soda, spices, and vinegar related things. I am an Indian so the indian food (ayurvedic) has helped a ton. Bone broth helped me alot along with an upper cervical chiropractor. My outlook is I eat to survive, not pleasure.
Hope this helps others.
Thank you so much for your input Dipali! I am so sorry for your struggles. The disease affects everyone differently and hopefully this post will help other people too 🙂
Hi, Maggie! I’ve never commented on a blog post before, I’m a seasoned ICer of nearly a decade (was diagnosed around age 20), but I just want you to know how encouraged I’ve been by your post – specifically the part about just pushing through when you flare and not letting it ruin your life for the time being (I tend to rebel once in a while and eat something I KNOW has bothered me consistently in the past and then get really upset and depressed when I inevitably flare soon afterward… This weekend I ate strawberries with my pancakes for the first time in probably a year, and man can I feel a flare coming on! Hence my internet search for comfort and finding your article lol.) Also, I could feel my blood pressure go down just looking at the picture of you and your golden – I had one in high school and LOVED him so much!! God bless you, my friend.
Aww thank you Sarah!! So glad you found my words encouraging and it’s great to know that there are others out there going through the same things 🙂 I’m glad you enjoyed the pancakes, I am a rebel myself too (especially with wine).
And Golden’s are the absolute best!! Thank you for sharing/commenting, take care!
Thank you, Sarah! I have been struggling for years to piece together what foods are triggering my symptoms other than citrus food and juice. I finally realized that there was a particular tea that was the culprit…thus leading to my discovery of citric acid in SO many things! This has been helpful. Thank you for the water advice and for your helpful article period!
Thanks Tami! So glad you found it helpful!
Hi Maggie,
I haven’t been diagnosed but since I’ve had a few UTI’s in my time (I’m now 50) I can feel te difference. I have definitely noticed various foods and drink setting me off and am now going to start keeping a diary.
However, one thing I haven’t seen mentioned here that I read somewhere else is taking a teaspoon of baking soda in a glass of water when you have a flare up. I have been doing this for a while and it really helps me. So might be worth others trying?
Anyway, thanks for the ‘3 glasses of water when you get up’ tip – will start implemenring that tomorrow!
Hi Lynda!
I have tried the baking soda in water trick before, another great tip I forgot to add! Just wished it tasted better!
I know, pretty awful. I keep my tongue stuck to the top of my mouth as much as pos when drinking – reduces the salty taste a bit 😊
Good trick!
Hi! I see where you mentioned the AZO medicine. What type of AZO did you take? I recently bought the Urinary Pain Relief, but I am not sure if that is the right type. Thank you!
Hello! I bought the AZO urinary pain relief, both the regular and maximum strength.
Thank you to Maggie and others who commented. I was laying here in pain and searching for answers on how to remedy my IC. You have all been very helpful. Thank you, Maggie, for sharing.
You’re welcome Janet, so glad you found it helpful and I hope you feel better soon!
Hi Maggie,
I haven’t been officially diagnosed with IC yet, but I strongly suspect it’s what I have. I’m wondering how long it takes after eating a specific food for symptoms to occur? If there are no symptoms after a few hours, would that food be considered safe? Thank you!
Hi there! I am no expert but from my experience it depends on the food. Mostly I can feel like within an hour or two after. When I drink, sometimes I can feel it the next morning. I would say over 80% of the time you know right away if the food doesn’t sit well with you!
Maggie & all IC sufferers,
I am new to IC (it was an unwanted gift for my 50th birthday) and can only eat about twelve foods at this time. I did the elimination diet and am slowly experimenting with adding some foods back in, but my diet is very limited. I only “cheat” on special occasions and whilst on vacation and to do this I take a generic form of phenazopyridine hydrochloride 97.5 mg before I start eating, then I take Prelief with any “bad” food and continue taking phenazopyridine hydrochloride as directed until 24 hours have passed from ingesting the “bad” food. It’s the only way I can eat food that gives me a flare-up without getting a flare-up. Once again, I only do this on rare occasions. Canada sells an item called Cystoplus that I had to use when in Canada because they don’t have the phenazopyridine hydrochloride, and it worked just as well. I think the Cystoplus is very much like drinking the baking soda in water trick but it tastes better. Very pricey, though. Also I was wondering if anybody else is having issues with salt? I changed from table salt to Sea salt and now I’m having a problem with Sea salt and am going to try Pink Himalayan salt. Food without salt is very bland and boring. Thanks for putting your experience out there and giving us IC sufferers a place to communicate with each other.
Kristine, thank you so much for sharing your story! I’m so glad you have this space to communicate with other people living with IC. We can only all help each other! I’ve never had an issue with salt, but maybe someone else in the comment section has. Best of luck to you and thank you for dropping by 🙂
Thank you for the tips, I just had surgery today to have hunners ulcers removed. I was diagnosed just a few weeks ago and am just starting journey.
Best of luck to you! Hopefully the surgery went well!