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January 08, 2019

11 Month Update: Healing my Interstitial Cystitis / Chronic Embedded UTI

I have been battling my embedded UTI infection, which was thought to be Interstitial Cystitis, for almost 1 year. From being immobile in a wheelchair from severe bladder pain, to 2 failed attempted suicides because some doctors told me IC had no cure and I would live like this forever, to now having moments of joy and being able to walk again, it's been one wild ride. From literally almost dying to now writing a UTI blog and searching for cures and documenting what I've learned, I've been through hell and back to tell you my story. If you read my backstory, this whole bladder disease started with a regular urinary tract infection in February 2018. It almost got cured by Ciprofloxacin antibiotics, but eventually many antibiotics failed to eradicate the UTI (read the story if you want to know what happened). So my never-ending UTI was thought to be many things by many doctors. Interstitial Cystitis, bladder inflammation, bladder pain syndrome, some auto-immune disease, blah blah blah. If you read through my DNA next generation stories, my adventures there have proven that my Interstitial Cystitis was, in fact, an infection!

Most Frequently Asked Questions I get on Email:

1. How recovered are you now?
I am NOT fully healed, but I am well on my way to a recovery as I am now hovering at about 65% - 70% better. If you remember my most painful time from June to August, my bladder pain was so severe that I was in a wheelchair because it felt like someone was hitting my bladder 24 hours a day with a hammer. Then before that, from February to April, I was constantly weeing razor blade urine. May was my "ureka! moment" when I discovered that food had a huge effect on the bladder. So yes, this huge mess was caused by a UTI that never resolved. Over 10 standard urine tests picked up nothing and could not find anything. I knew deep down inside, if it was caused by a UTI, and it reacted to some antibiotics, there had to be an infection! I couldn't have gotten some random Interstitial Cystitis or bladder disease out of nowhere. Like Medical Medium says, "If you have an illness that has been labeled as an autoimmune disease, your body truly is attacking something, but it is not attacking itself. When you are sick and have mysterious symptoms, it means there is an invader in your body. The theory about the body attacking itself has become law inside the minds of well-intentioned doctors and health professionals. No one is willing to question it because they have come to believe it is the truth, even though there is no evidence backing it." Fast forward 11 months later to today, I am about 65% - 70% better on my good days as long as I stick to my clean diet (outlined below). On my super good days, I'm about 75% better. On the occasional bad day, I will hover back to 50% and be feeling like I need to wee every 20 minutes if I ate something bad (that is, acidic), like a rotisserie chicken with mystery sauce, a lamb, turkey with mystery turkey stuffing, sugary foods, dairy, and yes even Vitamin C. 

2. What is the diet you currently eat?
I try to eat sugar-free, gluten-free, dairy-free, and red meat-free. So this is the diet I'm eating at month 11, in January 2019:
  • I drink only FIJI bottled water because it is neutral PH (7+). Tap water in metro Vancouver BC is acidic 5 something. The Vancouver website says that tap water in our city is alkaline, but trust me, it's not. I tested Vancouver's tap water with PH strips and it is acidic. I had friends test it out too and Vancouver BC's tap water is definitely not neutral or alkaline.
  • I drink these teas: cornsilk, slippery elm, marshmallow leaf, chamomile (all organic)
  • no sugar: that means no honey, no sugar, no artificial sugar and I try to keep fruit to a minimum
  • the only fruits I eat are blueberries, pears and watermelons as my bladder is still sensitive to fruits
  • vegetables except tomatoes, mushrooms and soy
  • white rice boiled in neutral PH spring water
  • baked potatoes (I didn't do potatoes for a long time but have started including them from time-to-time because my weight was so dangerously low)
  • once in a while, I will do gluten-free pizzas and I do NOT need prelief for this clean pizza: crust is made of rice flour, light pesto instead of tomato sauce, goat cheese (ok this is dairy, I know I know, but I need cheese on my pizza, haha), roasted garlic, red bell peppers (some ICers flare from nightshade plants so take caution), mushrooms (skip this if you are on the Candida diet -- I was doing mushrooms for a while but stopped because my TCM doctor said no mushrooms while I have this UTI), and baby spinach. So my pizza is almost vegan EXCEPT for the goat cheese. I wanted to do vegan cheese but all the vegan cheese I have seen have soy in it and soy kills my bladder. I can make this myself, or I can order it from Panago.com
Anyway my diet changes every few months. As my bladder is tolerating more foods, I am adding more foods in slowly and I also adjust it depending on my weight and cravings too. I was losing way too much weight on the raw vegan diet, but that was what substantially healed my bladder. Unfortunately, when I was on the raw vegan diet, I fell to 79 lbs because I was too scared to eat anything back then. I am now 95 lbs and gaining my weight back. My goal is to hit 110 - 115 lbs at my healthy normal weight. My diet has changed over the months, ranging from raw vegan to vegetarian to 80% veggies/20% meats to the Candida diet etc. Other ICers go on the IC diet, Candida diet, Paleo diet, or GAPS diet. I find that the IC diet is not enough to heal the bladder. You have to go stricter than that. My diet changes as my symptoms change, but I try to keep it as alkaline as possible and as close to the earth as possible. This means I do not buy or eat pre-packaged or processed food at all. Everything is raw veggies or home-cooked meals. I noticed that if I ate acidic foods like dairy, red meats, more meats, grains, my symptoms would be worse and constantly stay bad. I noticed my bladder began to heal slowly if I stuck to mostly eating vegetarian.
There are so many Interstitial Cystitis patients I meet who tell me diet doesn't work for them and they aren't healing, then they talk about what cheesecakes or pizza or pasta they ate and I'm just flabbergasted. Of course they're not going to heal eating that garbage with their Prelief medicine. They're just maintaining a vicious cycle and not allowing their bladder a chance to heal at all. That's all processed food with loads of ingredients that will irritate a sensitive bladder. They're repeatedly assaulting their bladder while crying about how diet doesn't work for them. There was one girl who typed an angry message at me that the diet did absolutely nothing for her and told me that "IC is incurable!" She wrote her message in caps lock, because caps lock means yelling. Curious at who this girl was, I went to her Instagram and saw that it showed photos of steak, cakes, apple juice, tomatoes and many foods that hurt sensitive bladders. Okay, so not only was she rude, she was also not very bright.

This is not her, this is a random photo

Then I meet others who told me they ate raw vegan for 1 whole week or even 1 whole month and didn't feel a difference, so they went back to eating normal. A lot of these "I did the diet for a month but it didn't work" emailed me that they haven't healed their IC in over 5, 10, 20 years and how they are now so far gone with lesions and ulcers that diet won't make a difference. I don't know how to respond to that because I am not an IC practitioner nor expert. I am only writing from my experience and sharing what I'm doing.

Ok, but think about it. I ate literally almost vegan for the past 11 months (sometimes even raw vegan) and I am now only just beginning to heal at over the halfway mark. That's almost 1 year of sticking to a strict diet plan of eating food that I don't like.... boring bland food...  This isn't a quick fix, this is a slow healing process since the bladder is one of the slowest organs to heal! This is a painstakingly slooooow healing process that requires the patience of a sloth. We must walk the path of the tortoise, not the hare. Jessica Parks (the YouTube girl who healed from her Interstitial Cystitis) literally ate like 5 or 6 foods for the first half year of her IC. I followed that same plan. This was pure torture for me, because I'm a foodie who loves meat, dairy and sweets. I was never Vegan or Vegetarian to begin with. But because I stuck to that plan, my bladder began to heal, slowly but surely. So for those who have very advanced bladder damage, diet may or may not work, I wouldn't know, because I haven't gotten to that stage, my bladder was shown to be okay in the cystoscopy. However, if you're looking for a diet that helps with IC bladders that are really damaged, I remember Montreal Healthy Girl on Youtube had lesions or ulcers on her bladder and she healed it in 4 years. She would be a really good source to check out.

The first month was noticeably better when I switched to a raw vegan diet, but there was still so much incredible pain over the next few months that I felt very hopeless and suicidal. I was suicidal throughout months 3 to 6. We chucked soo many antibiotics at this. Anyway, I had seeked a lot of help and fixed the majority of my bladder before I saw Ruth Kriz by month 8. I was still suffering when I saw her and still very symptomatic. She said it was good that I had been proactive working on finding cures and doing the clean diet so early on in my prognosis. She said if I had not eaten clean for the bladder, I could possibly one day have ended up with wounds or lesions on the bladder in a few years down the road! 

I could have healed my bladder faster maybe, but in October, I was doing so well that I got too excited and ate cookies, pasta and dairy in November. I was also doing antibiotics and Interfase Plus (a biofilm disrupter). Everything went backwards in my progress and all my symptoms got worse again. I took another DNA next generation urine test and it showed my e-coli tripled. I do them once a month via MicroGen DX and my urologist, naturopath or IC specialist signs the requisitions. So whether it was the food or the antibiotics or the biofilm disrupter or a combination of all of them.... it took a while to reverse the damage. I am now back on track but I wasted almost 2 months just trying to patch up the damage. So if you ever fall into temptation craving sweets or junk food, DON'T DO IT.

3. What are your Cooking Methods?
I mostly eat steamed or boiled. I do the occasional bake but I notice my bladder starts to feel worse. Grilling, frying, and stir-frying is a huge no-no. Cooking changes the food chemistry, even the most akaline foods change to acidic when they get heated. The acidity increases even moreso if you bake, grill and fry. I learned this from a TCM (Traditional Chinese Medicine) doctor. I tested that theory. If I eat baked, grilled, or fried foods, I would be weeing constantly. When I eat veggies that are raw, steamed or boiled, my bladder does just fine.

4. Do you believe Interstitial Cystitis is an infection?
Personally, I do not believe that all interstitial cystitis situations are infectious, but I do believe the ones that started with a UTI are related to that UTI and are infections. An infectious disease doctor from UBC told me that "Interstitial Cystitis is just a term for MANY possible bladder situations, it is not a diagnosis!" Well, said. Anyway, if your standard urine tests tell you that you have no infection, don't totally believe them. I would say you start reading at LiveUTIFree.com. It will totally open your eyes to details about why standard urine tests fail. 

5. What medications do you take?
If you have been following my old posts, I do not take any bladder pain nor urinary pain meds. No uribel, no pyridium, no elmiron, no gabapentin, no mybetriq, no toviaz blah blah blah. I have tried many antibiotics but that's about it for pharma meds. I didn't want to cover up or mask any pain, because I wanted to get to the root of the problem and see if I was actually healing. But don't listen to me on this, you do what's best and most helpful for your body in terms of pain. If you have to go to work, you're going to need pain meds to help get you through, right? Do what you feel gets you through the day. I don't work so I'm able to experiment around and let my body take the full brunt of any pain. I will continue to try different antibiotics or anti-fungals, and I took a lot of supplements which you can view on my Vancouver UTI Girl YouTube. (I now no longer take this many supplements, I have weaned down to just a core few, which I will release on my YouTube in the future).

6. What is the level of your bladder pain? How frequent are you weeing?
I have no bladder pain at the time of this writing. Woohoo! I was back to walking by October 2018. I have eradicated all bladder pain by December 2018. I can even jog a little now (not like real jogging, but running across the road because I'm a horrid jaywalker trying not to get run over by cars). My specialists couldn't believe I was the same suicidal crying girl in a wheelchair back in the summer. I was like "Hey 'sup? I can walk now" when I strolled into their clinics this November and December. My weeing went from every 5 minutes of razor-blade drips to now 'almost-regular' streams. I say 'almost', because once or a few times a week, I might get a "hot" or mildly stinging wee if I don't drink enough water. If you want to know how I got to healing up to this stage, it was a lot of work, a lot of practitioners, and a lot of things I tried -- it's all detailed on the blog.

7. How much did you spend?
To this date, I'm a little over the $10,000.00 Canadian mark and the bills will continue to climb. So sad how a UTI gone wrong would end up costing over 10 grand of experimenting around with various methods. The medical system is a fail when it comes to chronic UTIs, embedded biofilm UTIs and Interstitial Cystitis. I have no idea why it's so under-researched or unknown. Only very few doctors are into it.

8. When do you launch YouTube?
My YouTube "Vancouver UTI Girl" has been up since October or November! I'm working on new content that I will be releasing soon, because I get so many emails asking what I eat and how I prep my food. It is just way too time-consuming to reply to each email on what I eat or how I cook, so I will start showing what I make on YouTube that has been helping my bladder recover.

9. How did you get to recovering up to 70% in 11 months?
If you want to read about everything I've tried, dig through this blog and read my long journey in detail. You can also check out my Instagram and the comments where I have conversations with others on my healing journey. I dislike it when people email, "So how did you heal?" They want me to compress all the posts I made on my healing journey into 1 email because they are too lazy to read the blog. I ignore those emails. I spent countless hours researching and then documenting everything on this blog on what worked, what failed, and what partially worked for my bladder. Read through it if you really truly sincerely want to know what I did.

10. Can we chat / Can we be friends / Can we be email buddies?
I'm sorry but no, we cannot. I get overwhelmed by messages and emails so I have stopped replying to emails from readers. I block incoming private messages on my Facebook because I do not use it for chatting, I use it to access private groups. As for emails and chats, I don't have the physical time or the mental energy for it or I would be on my computer 24/7. I have my own family and I need to eat, sleep, research, and focus on my own healing too. I also have anxiety and mental anguishes like you over this bladder saga, so I need a lot of downtime away from the internet! However, on the right hand side of this blog, the bottom of this blog, and on my Contact page, I list awesome people and wonderful support groups who have helped me (or who I have heard of from other IC & UTI patients). Join their forums, FB groups, instagrams, call them, email them --- they will be an amazing pot of wisdom and guidance for you on your journey.

11. Who are your doctors? How much are their fees? How do I see them? Who is the best? Who do you like better?
I am under the care of so many doctors right now, but the main helpful ones are on the right side of my blog. Contact them to ask about becoming a patient. Don't ask me about their fees or schedules, I am not a medical secretary. As for who is the best, it is up to you to make that judgement on who you feel would have the best method or chemistry for you. Do your legwork and come up with important questions to ask the specialists, so you can choose.

12. Can we meet in person? I am near you / can drive to you / fly to you.
This depends. I have met 1 chronic UTI patient in person, and had a few phone calls and Skypes with others. At this point in time, probably not. If you happen to be in Vancouver BC, maybe... but I am really picky about who I meet. I prefer people who are quiet, calm, and gentle. Loud talkers with erratic emotions would make me very uncomfortable, so it would depend if we are compatible personality types.

Disclaimer: Everyone is different. This is only what is working for me, and is NOT intended to be medical advice.

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Key Terms

UTI (urinary tract infection)
Urinary tract infections are caused by microbes such as bacteria affecting the kidneys, bladder and the tubes that run between them. It is accompanied by pain with urination, increased urinary frequency and/or urgency.

IC (interstitial cystitis)
Interstitial cystitis, also known as bladder pain syndrome, is a type of chronic pain that affects the bladder. Symptoms include feeling the need to urinate right away, needing to urinate often, and pain with sex. IC is associated with depression and lower quality of life. The cause of IC is unknown. Doctors say there is no cure for IC, but I'm finding recovered IC'ers on Inspire and Instagram!

BPS (bladder pain syndrome) Also known as Interstitial Cystitis, it is a chronic inflammatory condition of the bladder, which unlike bacterial cystitis; it is not caused by common bacteria, and does not respond to traditional antibiotic treatment.

PFD (pelvic floor dysfunction) A term for a variety of disorders that occur when pelvic floor muscles and ligaments are impaired. Symptoms include pelvic pain, pressure, pain during sex, incontinence, incomplete emptying, and visible organ protrusion.