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,
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- 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!
Maggie, thanks for the reminder to drink lots of water in the morning. I usually drink one large glass but now I am adding an additional two. I actually warm my water slightly so that I can just chug it down. I tried Four Sigmatic coffee for the first time today. Giving up coffee has been the most difficult aspect of living with IC. This morning I felt like myself for the first time in ages and I am crossing my fingers I can continue using it. No other coffee low acid coffee has worked for me to date. One of my most surprising triggers is cauliflower, strangely enough. I've tried fresh organic and frozen, riced cauliflower and it's always trouble for me. Thanks again for the IC tips.
Jill- so glad I can help! I’m glad the four sigmatic coffee is working out for you!
So far, so good on the coffee!
Sadly, four sigmatic coffee proved to be bothersome after all. However, I discovered Puroast Low Acid Ground Coffee last June and have it every day without any complications.
Maggie
When you say you can't eat yoghurt, banana etc does it flare you or cause frequency etc ?
Thanks x
It causes a flare for me unfortunately
I have had this horrible disease for about 2 years now. I see where drinking lots of water is helpful in most situations. I love water and it is my drink of choice but if I drink a lot I pee so much I can't leave the house. The only way I can have a social life is lay off the water. Not the way I wanted to live my retired lifestyle but what else can you do?I
Hi Trina, I’m sorry to hear you’re struggling. I’ve found that training my bladder to hold my pee actually feels better. I don’t hold it for long but at the first feeling of having to go I don’t go right away and I “distend” my bladder a bit. I’ve read some articles online and on IC Facebook groups about bladder training. It might not be for everyone but it’s worth a shot trying if it can improve your quality of life
Has anyone tried marshmellowroot tea?
This is the 3rd time in 5 years that I have had a flare. The first time it just went away. The second time I changed my diet and it went away after 3 months. Each time I was able to eat and drink anything I wanted when the flare went away. This time I have changed my diet drastically and tried Claritin and nothing seems to help. It has now been 3 months and I’m not sure what else to do. How can I get this to go away. It is ruining my life.
So sorry to hear you are struggling 🙁 hope you find relief soon
Hi Cheryl,
I have experienced the same regarding tolerance level after a recovery. I juice parsley with celery to heal the bladder. I looked for a tea and found parsley tea in Amazon, read the positive reviews and decided to make a juice and it works well for me. Needless to say, I no longer reintroduce coffee, caffeinated teas, carbonated water (the worst for me), spices, strawberries, tomatoes, or fermented foods. I have also reduce the amount of ginger I put in my vegetables juices, still using turmeric.
Be well
Angeles
How are you now!
What is an AZO pill?
I was diagnosed with IC last year and it’s been a rollercoaster ever since. When I’m in a flare up no pain medication other than IV pain medication which you need to go to the hospital for. I’m currently 24 years old. What helped me feel better was 16oz of celery juice every morning on empty stomach followed by a cup of water. It helps cleanse your body and relieved my pain!
Thanks for sharing what works for you! Hopefully it helps others
Thank you so much for telling your story and the suggestions! I was diagnosed in January of this year and my sister has had this for 11 years. It has been nice to talk to her and learn from her, but I am still so worried to try new foods. I stopped all caution foods.... coffee and pizza has been the hardest to live without. I will try the 3 glasses of water and will have more courage to try more foods. Much luck and thanks again!
You're welcome! Hopefully the water helps!
You have written this as it relates to your young life. You have few foods on your elimination list. I can’t even drink bottled water. Filtered well water is all that I can have. I can only consume meat, most vegetables except white potatoes and squashes, pears, rice, almonds, pasta, and some breads, Cereal is not even tolerated except spelt. At 72 years of age it is making me very depressed because six years ago I was normal. I was eating a vegan diet, now I have to eat meat, because beans and soy cause flares! IC flares are not relieved by drinking more water or taking prelief. Bladder installations are limited in their effectiveness as well. Why is there not more research on this dreaded disease?
So sorry you are struggling Linda. Hopefully they will find some sort of relief for us soon.
Have you tried the prescription medication Elmiron? It is the only thing that helped me!
I haven't tried it! I've heARD of it though.
Thank you so much for all the tips! I’ve been dealing with this for a few years and it’s been a struggle. I recently started adding lime juice to my soda water and omg - what a mistake! I never had this reaction from limes and I’m hoping to recover soon! I’m going to try to drink 3 glass of water first thing every morning 🙂 look forward to more post like this!
Thank you for sharing Jen!! Hope the 3 glasses of water first thing is helping!
I was diagnosed 2 yr ago myself. I have found eliminating high acid foods ie tomatoes & anything citrus. Wine is the worse for me & caffeine. I've been on Elmiron & Uribel which helps a lot as long as I don't miss a dose. And drink lots of water. Hope this helps.
How long have you been on Elmiron? Have you had any side effects? I worry about the problems with vision issues and hair loss.
I was recommended half lemon juice in a glass of water first thing in the morning as lemon turns alkaline in your system and makes urine more alkaline. Have you tried this?
I have not tried it.
Did this work for you or have you tried it? I beleive I have CI and started july 2020 along with an UTI, went away and now its here again, I will go off coffee and try the water before meals
How are you now? What worked?
after 3 months of no coffee tomates citrus pickles etc and drinking lots of water most of the day I think I am back to normal I seem to get a flare after a bladder infection when on medication
Years ago my doctor told me if I would eat a Rolaid before I eat or drink anything that might cause me problems with IC it would coat by bladder so I wouldn’t have symptoms
I’ve heard the same! It didn’t work for me, but hopefully it works for you!
What about Prelief? My doctor recommended this. I've also read antihistamines can help?
I tried prelief and it didn’t see to work for me!
Thank you so much for sharing this information. I have just been diagnosed with interstitial cystitis since October. I've already had the bladder hydrodistension, and I'm taking uribel 3x times a day. I've been trying to only have a half a cup of coffee in the mornings and I can still tell it affects me greatly. I'm going to try the low acidic ones you suggested!
Yes! I’ve had great luck with four sigmatic! Drink it every morning and no issues
Hey! I have not been officially diagnosed with IC yet, but they are pretty sure that is what I have. They have already started me on some meds for it before I can get the test for it. I have now been in constant pain for a solid month. I had surgery on the 21st of September for the removal of a kidney stone. That is when things got worse. I am not even able to work right now. I had only been at my job for 3 weeks, and now I am on leave until the 26 but the test for the IC is on the 27th so I don’t know what I am going to do.
Hello Beverly, I am so sorry you are in pain. Hopefully you will get some relief if you do get diagnosed with IC so that you know what's going on. I know that I felt better after I got diagnosed. Brighter days are ahead!
Thank you for sharing your story and advice through this post. I have been struggling with constant and severe abdominal pains and other symptoms for the last three months. After countless doctor visits, tests, and surgical procedures I was finally diagnosed with IC. As a 19 year old student living at a college away from home this health experience has been extremely challenging and stressful. I know that this is merely the beginning of it which is a dreadful and scary thought, but it brings me comfort knowing I’m not fighting and figuring this out on my own. I’m very happy to hear you’re doing well! <3
Hi Jordan, so sorry to hear you are struggling. Hopefully after being diagnosed you can navigate what causes you pain a little easier and eliminate them. Wish you the best! Brighter days are ahead!!
I could not figure out what was causing my recent flare ups. Now I’m thinking it was Greek yogurt. I have been eating that with blueberries and bananas thinking it was such a healthy breakfast... now I’m seeing yogurt is one of your triggers. I bet that’s one of mine too.
Hello Beth, so sorry to hear you are in pain. Bananas are one of my triggers too! Along with yogurt. Best of luck trying to figure out yours. Hoping the pain will subside for you soon <3
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!
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 🙂
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!
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! 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.
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!
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'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!
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 🙂
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 !
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!
I have had IC before anyone knew what it was 1987. Diagnosed in the 90’s and as the years go by inherited lol IBS and my food choices are very limited. My drinks are the hardest to give up. I am praying for a cure of both. Thank you for sharing.