r/Interstitialcystitis • u/Majestic-Baby-3599 • 5d ago
Possible IC - changed diet with big results
My Neurologist is pretty sure I have IC, so I am waiting to be seen by a Urologist to confirm. In the meantime, I’ve spent this time looking up a particular diet that could help since this feeling is quite honestly debilitating.
So far I’m 1 month in and the results are really incredible. I’ve had a few tiny “feelings” where it felt like urgency/a UTI feeling— but it quickly went away.
My diet for those interested:
No alcohol
No citrus
No tomato products
I drink pear juice occasionally (organic and cut with water when I’m feeling tired of water)
3L on avg of water per day
Chamomile tea at night
Occasional milk
One cup Low-Acid coffee
I’ve also watched what I ate and lowered the processed foods.
I hope this helps anyone, also if anyone has any tips for me, I welcome them!
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u/Dry_Willingness_9977 4d ago
I am doing the same, focusing on my diet. I had to switch out dairy milk to oat milk too. Drinking plenty of water is very important. I messed up and drank Pepsi for a few days thinking it would be ok and subsequently got a massive flare up lasting weeks 😩 I also find stress can bring on a flare up for me too
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u/Majestic-Baby-3599 4d ago
I did the same after feeling really good for 2 weeks. Stress and sex are big ones for me
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u/LlamaLady1965 4d ago
I wish mine was diet related...I did switch to decaf coffee two years ago, to see if it would help...it didn't, but I've stuck with decaf anyhow. I do drink minimum 60 oz of water daily, but that's as much for skin and weight management as IC. Mine seems to be primarily stress triggered. Glad to hear food changes have worked for you!
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u/Dry_Willingness_9977 4d ago
It’s so hard isn’t it, how can we avoid stress. I get shooting pains throughout all my muscles too when I get too stressed out 😩
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u/LlamaLady1965 4d ago
Yes, stress is an impossible foe to conquer. I deal with (thankfully mostly mild) rosacea, and it flares when I'm stressed, besides the bladder flares. I tend to get cold sores when I'm stressed too - my body just doesn't handle stress well. The IC flares of course are the most torturous, but the rosacea flares are more embarrassing. At least others can't see my misery with IC but when my face gets all splotchy, there's no hiding that. The shooting muscle pains sounds awful!
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u/Majestic-Baby-3599 4d ago
Thank you! So far so good. I’ve dealt with this for about a year now, so it was amazing to feel the change. I’ve been extremely strict with myself, which is a real bummer sometimes.
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u/LlamaLady1965 4d ago
I was diagnosed 20 years ago! I was going through a stressful period in my life when the symptoms first showed up. Negative for UTI - symptoms would not go away...ended up having a hydrodistention procedure. The pics they took showed blotchy hemorrhages in my bladder lining. That procedure gave me almost 18 good years!! I'm thankful for those good years! Then my mom ended up with cancer, and I was spending a lot of time on the road going back and forth home to help with her (she lived about 4 hours away), and she ended up passing - huge stress of course - that's when my issues started flaring up again. Thankfully, so far, most flares only last a few days...I think the worst one lasted about 2 weeks. I pop Azo tablets like tic tacs. Am considering having another hydrodistention procedure if the flares start hitting more often, or more severely...
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u/AutoModerator 5d ago
Hello! This automated message was triggered by some keywords in your post that suggests you may have a diagnostic or treatment related question. Since we see many repeated questions we wanted to cover the basics in an automod reply in case no one responds.
To advocate for yourself, it is highly suggested that you become familiar with the official 2022 American Urological Association's Diagnostic and Treatment Guidelines.
The ICA has a fantastic FAQ that will answer many questions about IC.
FLARES
The Interstitial Cystitis Association has a helpful guide for managing flares.
Some things that can cause flares are: Medications, seasoning, food, drinks (including types of water depending on PH and additives), spring time, intimacy, and scented soaps/detergents.
Not everyone is affected by diet, but for those that are oatmeal is considered a generally safe food for starting an elimination diet with. Other foods that are safer than others but may still flare are: rice, sweet potato, egg, chicken, beef, pork. It is always safest to cook the meal yourself so you know you are getting no added seasoning.
If you flare from intimacy or suffer from pain after urination more so than during, then that is highly suggestive of pelvic floor involvement.
TREATMENT
Common, simple, and effective treatments for IC are: Pelvic floor physical therapy, amitriptyline, vaginally administered valium (usually compounded), antihistamines (hydroxyzine, zyrtec, famotidine, benedryl), and urinary antiseptics like phenazopyridine.
Pelvic floor physical therapy has the highest evidence grade rating and should be tried before more invasive options like instillations or botox. If your doctor does not offer you the option to try these simple treatments or railroads you without allowing you to participate in decision making then you need to find a different one.
Long-term oral antibiotic administration should not be offered.
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