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Callie Krajcir is a registered dietitian living with interstitial cystitis, a chronic illness that affects the bladder and is commonly mistaken for a UTI. After experiencing much of her youth in silent pain and discomfort, Callie learned to advocate for herself in the medical system, and acquired the necessary knowledge and skills to manage IC and the pelvic floor dysfunction (PFD) symptoms that stem from IC. Callie now works with her clients through specific diets designed to heal inflammation, reduce symptoms of IC, and improve quality of life with the power of nutrition.
Nyssa's Mia Clarke chatted with Callie about interstitial cystitis and how her personal experience has given her the ability to guide others on a similar path.
MC: You’ve suffered from interstitial cystitis (IC) and pelvic floor dysfunction (PFD) for much of your life. Can you explain what each is, and how the two conditions impact one another?
CK: Yes! Interstitial Cystitis is a condition of the bladder that has no known cause or cure, making it a chronic illness. IC affects millions of people of both genders around the world. Symptoms of IC mimic those of a urinary tract infection (frequency, urgency, painful urination, pain with sex), but there isn’t an active infection on the urinalysis. There are many theories as to the root causes of IC but none have been proven in research studies.
The Cleveland Clinic defines PFD as a "condition where you’re unable to correctly relax and coordinate the muscles in your pelvic floor to urinate or to have a bowel movement”. This article is a great resource to explain how the two conditions are related. (Note that since the article was written, a cystoscopy is now not technically “required” to diagnose IC.)
MC: Can you describe what a typical day is like for you as you work to manage both conditions?
CK: I used to struggle with daily pain when I was living with the worst of my symptoms about 6 years ago. But currently, I am grateful that I have my symptoms managed and only flare once in a while, usually from stress. Stress is my biggest trigger for both conditions and is something I’ve been working to minimize through going to therapy, doing guided breathing exercises, and other exercises to down-regulate my nervous system. I make sure to stay hydrated each day and not go overboard on any of my diet triggers, although now I can eat almost anything in moderation! I go to pelvic floor physical therapy once per month and strive to fuel my body with nutritious foods, exercise 4-5 days per week, and give my body the rest it needs when it’s asking for it!
MC: What was your diagnosis journey like? What were the first signs that there might be an issue and how long did it take for your personal concern to be accurately diagnosed?
CK: I’ve suffered from painful urination my whole life, or at least as far back as I can remember. I actually believed it was normal to have pain when urinating. I didn’t talk about it with anyone and just pushed through it through my childhood and teenage years. When things didn’t improve, I did some Googling at around age 18 and came across the term “interstitial cystitis” that seemed the closest to an explanation for my pain as I could find. This began my journey to diagnosis and I soon started the process of trial and error with many invasive treatment options over the next 5 years. To listen to my full story, click here.
IC is a diagnosis of exclusion, meaning your doctor will want to rule out all other causes of your symptoms. It takes people years to be diagnosed with IC because it is quite a lengthy process. Unfortunately, many people deal with medical gaslighting along the way and are told their symptoms are “all in their head”. To anyone looking to pursue an IC diagnosis, I’d recommend looking for a urogynecologist or a urologist who is comfortable diagnosing and treating IC.
MC: The exact causes of IC are unknown, unlike other terms of urinary/bladder infections. How does the ‘foggy’ medical understanding around this condition impact the way you feel about it and approach your own treatment plans?
CK: Since everyone with IC is a little different in their “root cause”, triggers, response to treatment, and other medical conditions, I realize there is not a one-size-fits-all approach to IC, especially when it comes to diet. There’s a diet called the IC diet that categorizes foods into “most bothersome” and “least bothersome”, which is meant to be used to guide an elimination diet. I help my clients navigate the elimination diet to learn which foods and beverages they are uniquely sensitive to, if any, and help them gain confidence back with eating. I also help them identify other non-diet triggers such as hormones, allergies, and PFD. The bottom line is the treatment for IC needs to be an individualized approach and I’d recommend building a medical team you trust with a physician, pelvic floor physical therapist, Registered Dietitian, psychotherapist (if appropriate), and any other medical professional you feel you need on your team.
MC: As a registered dietitian, can you share a bit about the foods you try to have, and stay away from, to support greater health and comfort when dealing with IC?
CK: Yes, so in the previous question, I mentioned the IC diet. The foods this diet recommends people avoid include: alcohol, caffeine, carbonated beverages, tomatoes, citrus, spicy foods, chocolate, soy, artificial sweeteners, and MSG. The biggest misconception the IC community has is they need to avoid all of these foods forever when in reality the IC diet was created by researchers to guide an elimination diet. The majority of people I’ve worked with only have a handful of triggers at most, and some don’t have any at all. That being said, I also recommend trying to eat a more anti-inflammatory diet to decrease inflammation and stay hydrated.
MC: Are there any other major lifestyle changes that have helped you manage your symptoms and discomfort?
CK: Minimizing stress is HUGE! This means finding a way to cope with stress that works for YOU. Activities like meditation, body scans, yoga, therapy, and/or a light walk could be great methods to minimize stress. People with IC can try supplements like aloe vera (Desert Harvest is the best), Quercetin, and pumpkin seed oil to name a few (always consult your doctor before starting a new supplement). You could also try herbal teas like marshmallow root, chamomile, and peppermint to keep you hydrated and give you a few added health benefits like relaxation or pain relief. Lastly, stretching on a daily basis (I learned stretches that work for me at pelvic floor PT) is a really helpful activity to include in your daily regimen. If you are unable to get examined by a PT, you can try researching stretches you can do at home.
MC: Does this advice differ for more straightforward UTIs?
CK: Yes. UTIs need to be treated with antibiotics. IC flare-ups are different from UTIs (lack of bacteria on the urinalysis), but if you’re finding it difficult to differentiate then the safe option is to get tested. Some doctors will even write you a script for a urinalysis that you can complete as needed (helps you skip a bit of the headache of needing to see a doctor).
MC: Can Pelvic Floor Therapy help with PFD? What advice is there for someone just starting out on their PFD management journey?
CK: Yes, Pelvic Floor Physical Therapy is the top recommendation for working through PFD. I’d tell someone who is just starting out on their PFD journey to speak with a trusted medical doctor (primary care, urologist, gynecologist) about getting a referral to PT.
MC: With complex conditions such as IC and PFD, it’s not always easy to advocate for oneself with medical providers. This is true of UTIs too, which can become serious if not treated early. Do you have any tips you can share in terms of self-advocacy and gaining greater knowledge around these topics?
CK: Know that what you’re feeling isn’t in your head. You need to surround yourself with supportive people who believe you and will help you fight for the best care possible. Getting skilled at self-advocating comes with practice, and you likely won’t be perfect on your first try. But never stop advocating for yourself! You’ll never find the solution to what I like to call your “IC puzzle” by not pushing for answers! I actually included a class on self-advocacy in my Intro To Interstitial Cystitis Mini-Course.
MC: IC and PFD are still relatively unknown conditions, despite millions suffering from them in the U.S. alone. What would you most like to see change in the next couple of years when it comes to research, awareness, treatment etc?
CK: I love this question. These conditions are a bit of a taboo topic because it’s not easy having conversations about your bladder, pelvic floor, or reproductive organs. We need more people suffering from these conditions to speak up because without us talking about it we will struggle to get the word out, raise awareness, and lobby for more funding for research.
artwork by hilma af klint
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