An epiphany: IC is not a bladder condition

I haven’t posted for a while because I’ve been feeling pretty good (actually compared to the last few years, really very good, with a pain level averaging maybe only a 2/10 for the past few months) and I haven’t wanted to write about or even think much about Interstitial Cystitis. I’ve realized this is a phenomenon in the IC community. When we’re suffering intensely it’s all we can think about and thoughts of our bladders and our pain pervade our every waking moment. What we want most, therefore, is to connect with others going through the same thing, to reach out for moral support and advice and sometimes just to vent. And then when we’re having good days/weeks/months it’s nice to take a break from the conversation and maybe even try to live a normal life that doesn’t include a lot of time and energy directed towards our chronic pain or other symptoms. So here’s my takeaway from this phenomenon:

Thinking about IC leads to more bladder symptoms and more bladder symptoms leads to thinking more about IC. 

Maybe this seems obvious, but then again, maybe read that sentence one more time, close your eyes and ponder it for a minute. And if we can accept it’s deep truth, here’s the next logical conclusion: Interstitial Cystitis is a mind-body problem of the highest order. It typifies a mind-body condition, in fact. What’s happening on the mental plane (thoughts and emotions) affects the physical plane, the body (especially the weakest link, whatever that may be, which for us is obviously the bladder). And whatever is happening with the physical body necessarily affects the mind. If you have a broken arm, being stressed doesn’t make the break any worse, and neither does feeling happy make it any better. You still have a broken arm, regardless of your mental state. But with IC, well, we all know how stress can cause a flare, and how feeling relaxed and peaceful can dramatically improve bladder symptoms. This might not sound like news to you, but have you really (and I mean REALLY) taken some time to engage with this idea and see how it fits into your life and your state of health, and how this has changed the course of your condition over time?

Let’s consider health in a general way, first of all.

“Healing is not something which happens and which can then be forgotten. Wholeness is a way of living.” This is from the book Paradox and Healing: Medicine, Mythology, and Transformation, by Dr. Michael Greenwood and Dr. Peter Nunn, two physicians who recognized as early as 1992 the inherent flaw in Western medicine, which wants to cure and fix simply with pills and surgeries, rather than in a holistic way. That quote resonated with me – I highly recommend the book, which I recently stumbled across for 50 cents at a garage sale – and I think it’s got to be understood that IC is a systemic condition and needs to be treated as such. Seeing a urologist who focuses only on the bladder as an isolated organ without considering the whole person is ridiculous when you really think about it. It’s like trying to solve the world’s air pollution problem by reducing carbon emissions in only one tiny African country. It doesn’t make sense to think about the body as disconnected parts that can be isolated and “fixed” independent of every other part. And the very interesting and important thing to note here is that this doesn’t just include the physical body, but also the mind (and even soul). What affects one affects all. IC is a systemic condition. What we eat, how we feel, whether or not we’ve had enough sleep, whether or not we’re on vacation or working on a project deadline, and what the state of our romantic or social life is, will all impact our bladder symptoms. You know this. I know this. Health is a holistic thing, no doubt about it.

When we recognize disease as a balancing factor, as the part of our wholeness which has been denied, we are empowered to seek healing through expanding our awareness and looking for alternate concepts and we can simultaneously abandon the effort to eradicate the illness through conventional treatment. Such a total reversal of our approach to illness amounts to what we call a “transformation” of personal philosophy, and the change in attitude is the key element which activates our intrinsic healing system. – p. 40, Paradox and Healing

How has this affected me? Well, here’s an interesting situation to note: for the past few weeks, maybe a month or so, I’ve been having increased lower back pain, and in the last maybe two weeks, annoying acid reflux, but my bladder pain has gone way down. It’s like my body has decided to swap out the bladder pain for other pain and physical symptoms, just substituting one for the other. Does this resonate with you? Have you ever experienced fewer bladder symptoms at times when you’ve had another health crisis (say, a serious bout of flu, or a badly sprained ankle)? Weird, huh? Dr. John Sarno, a medical specialist dealing in rehabilitation, who was a pioneer in the field of mind-body medicine, has written several books about a condition he termed Tension Myositis Syndrome. My bet is that you and I fit the bill pretty well for this condition, which essentially suggests that your ability to recognize, accept, process, and express your emotions is pretty stunted, and so your psyche deals with this by manifesting the pent-up mental energy in a physical manner – any physical manner, and the symptoms can change. (Common ones manifest as Irritable Bowel Syndrome, Fibromyalgia, and IC and other conditions that have no clear cause or cure). So, if you’re resentful towards your boss but you don’t want to deal with trying to communicate your frustration, you perhaps get intense lower back pain. Interesting, too, that self-help author Louise Hay suggests, in her book You Can Heal Your Life, that each organ and body part, when causing problems, gives a clear message of some kind, and in the case of the bladder, it’s that we’re “pissed off.” Pretty clever, our mind-bodies, aren’t they?

So what can you do, today, to start to move towards freedom from this vicious cycle of thoughts = symptoms = thoughts = symptoms?

First, I would recommend doing a bit of research on the mind-body connection so you really understand what’s going on for you. Get your hands on Dr. Sarno’s books, particularly The MindBody Prescription, as well as Gabor Maté’s When the Body Says No, and after giving those a read, listen to Abigail Steidly’s podcasts. She had IC and she’s in remission now, so she’s obviously done something right. The basic idea with these resources is to start to make yourself understand that while IC causes real symptoms, those symptoms are caused in large part by our minds, which can be worked on to stop the vicious cycle of stress and anxiety related to your physical symptoms. Change your thoughts, change your life.

Second – and THIS IS THE MOST IMPORTANT – I would suggest taking some significant steps in your life to lower your stress levels, both acute and chronic, and get your mind to a state of regular calm. This might mean leaving a job that’s got you at your wit’s end, or even ending a relationship that has become toxic. It also might mean recognizing where you need to say no (to social engagements, extra work projects, volunteer events, or household chores that could be delegated). Maybe it means taking a vacation or staycation to re-set your soul to a more peaceful place. It definitely means a regular mindfulness meditation practice (which could just be a matter of remembering to breath deeply a couple of times per day, to begin with). Basically just figure out where in your life you’re feeling a lot of anxiety and actively look for ways to mitigate this. Maybe start journalling to note what state of mind you’re in on a daily basis, and see if you can start to recalibrate your general mental state towards being more positive and peaceful.

Third is to start taking great care of your body, which directly affects your mind, which in turn affects your body… you get the point. Sleep is essential. Not just enough, but at the right hours. I’ve learned in my psychology studies that getting to sleep before 10:30 pm can afford the most restorative sleep because it’s in the earlier hours that our cells are most efficiently repaired. It also allows for more time in REM sleep later in the night, which is ultimately the most important stage of sleep. If you wake up to an alarm and struggle to get out of bed, if you need a nap during the day, or coffee to stay awake, you’re not getting enough or good enough sleep. Next is exercise. You already know, so I won’t go on about why it’s so important to health, but let me just say from experience that getting out into the woods for a hike at least once a week, and doing yoga at least twice a week, has made a world of difference for me, both in keeping me grounded and lowering my stress levels (and also helping me to sleep more deeply). And the third pillar in the foundation of health of course is diet…

So fourth, of course, is consider carefully, BUT DON’T OBSESS about what you eat. Obsessing about your diet leads to more stress. I really believe a big reason my bladder has calmed down a lot in the last few months is because I (mostly) avoid trigger foods, like alcohol and caffeine, vinegar, tomatoes, spicy foods, etc. but I don’t totally cut them out or go around in a constant state of vigilance and obsess about what I’m eating and not eating. Here’s why: last summer I fasted on an elimination diet for 10 days, eating NOTHING BUT lettuce and steel cut oats, and my pain remained at an all-time high. I think the reason is that being so stressed out by my food obsession, and feeling so hungry and deprived and sorry for myself only increased my stress, and it’s STRESS, more than diet, that I truly believe is the problem with the IC bladder. Sure, we almost all have trigger foods, and I’m in no way saying diet isn’t important, but it’s so much less important to avoid bad foods as it is to eat the RIGHT STUFF to improve health. Eating alkaline and getting the proper nutrients is the foundation of health, regardless of whether you’re near death and need to make a change, or in the peak of health and want to stay there.

Fifth, and finally, I would suggest you do some soul-searching, to get at any underlying issues that may be causing some blockage in your mindbodysoul. I know it might sound corny, but I really believe IC (and actually all disease) is a spiritual issue. I believe our physical bodies are a physical manifestation of our hearts, minds, and souls, and if we’re suffering with a chronic condition, we’re suffering on all these levels. (I saw an acupuncturist last autumn who said I need to heal my heart. She hardly knows me but could see right through to the core of my spiritual issue.) See a therapist, do some journalling, talk to a close friend, go on a vision quest, or just take an afternoon to sit quietly and contemplate where you’re at in your life and what might be causing any anxiety or unrest or even total existential angst. I really believe our bladders are like the tip of the iceberg, and that if we go deep into ourselves we will find that our bodies as a whole are unwell, and more than that, our hearts, minds, and souls are also in pain. If we can address our issues on all these planes we will inevitably come to a state of total wellness, because of course “healthy” is synonymous with being “whole.”

I am currently seeing a therapist who is helping me take great strides towards recognizing areas of my life and of myself that are causing me grief, and I believe in dealing with my emotions, I am helping myself to get out of pain in every sense of the word. It’s not easy, and I’m sure I will backtrack at some point, but I’m also confident I’m heading in the right direction. I hope you can get to the same place on your journey, and I wish you well. 

 

 

Another IC success story

Need some inspiration for healing? Layla Wehr, who blogs at Bladder-Help.com, recently shared with me her story of recovery from the worst of her IC symptoms. Check it out – Layla in her own words…

 

I first experienced bladder issues as a child, when I regularly developed bladder infections. One time, my mum took me to the hospital where I had a cystoscopy under anaesthesia to check for any abnormalities. Nothing was found. After that, I don’t remember having much trouble, apart from being prone to increased urgency when feeling cold or stressed.

Chronic urinary tract infections

The real trouble begun when I moved to Thailand where it was extremely hot and humid – I developed a bladder infection that quickly turned into a kidney infection. I had been dehydrated. Without knowing much about it, I went to the hospital and was given both intravenous and oral antibiotics and painkillers. It took over two weeks to clear the infection in which I experienced a lot of side-effects from the antibiotics.

A few months later I developed my second kidney infection. This time I saw a different doctor and the infection cleared on the first course of antibiotics. After that, I was left with chronic bladder infections, which only cleared when I moved back to Europe a year later. Apart from one minor bladder infection, I remained symptom free for a few years, although I had developed more digestive issues and food intolerances.

Interstitial cystitis

What I later started to call ‘my demise’ began when I lived in student accommodation that was cold, draughty, and mouldy. Along with my sub-optimal living conditions came a traumatic break-up, graduation stress, lots of traveling and partying and a decline in my previously fairly healthy diet. I went on a winter-holiday to Switzerland where it was extremely cold. The first morning I woke up with my (up to that day) worst bladder infection and spent the whole night on the toilet. As I failed to seek treatment, the infection quickly spread to my kidneys, too. Back home I went to see a GP and one more time it took two courses of different antibiotics to clear the infection. A few weeks later I had the next infection and went through another course of antibiotics.

This is when the constant bladder pain started.

I went back to the GP’s, and because of a ‘probable infection’ I received more antibiotics (which I took), but the test results came back negative. Taking these antibiotics is one of my biggest regrets as the pain instantly got worse. The next doctor I saw took an ultrasound and tested for an infection and similar diseases. But when nothing showed up she declared that there was nothing wrong with me and that I should just ‘try drinking some cranberry juice’… I had a break-down. I remember sitting on the floor, crying and not knowing how I got to this dark place and how I would get back out of it. The issue had started to severely affect the quality of my life. Then, I decided to find an answer on my own.

My journey to freedom from cystitis

My first step was to read Angela Kilmartin’s book The Patient’s Encyclopaedia of Cystitis, Sexual Cystitis, Interstitial Cystitis, and implemented her ‘bottle-washing’ technique. This prevented further bouts of bladder infections from occurring. 

Although I had decided to be a vegetarian as a child and was raised by a mother who had studied TCM nutrition and prepared meals for us every day, I had never really given much thought to nutrition. But when I started searching for my symptoms, I came across forum entries in which women linked their symptoms to a fungal ‘candida’ infection. Not wanting to see a doctor again I found out about anti-candida diets and decided to try one.

For some reason I got convinced that a raw vegan diet was the answer to all problems, whilst also taking a lot of natural anti-fungals. Six months later my bladder symptoms were worse and my gut was on fire. I spoke to a therapist at one of the companies that sold anti-fungal supplements and he said to me “stop what you’re doing! You have interstitial cystitis!” This was the first time I had really considered that it was in fact interstitial cystitis that I was suffering from. I have never officially been diagnosed with the condition but all my symptoms fit exactly into its definition. I followed the therapist’s recommendations, stopped the anti-fungals, took lactoferrin and colostrum supplements, and introduced fermented foods into my diet. The turning point came when I read the wonderful book Nourishing Traditions by Sally Fallon and not much later Gut and Psychology Syndrome by Natasha Campbell-McBride. Both books recommend a traditional, real-food based diet including bone broth, fermented foods, and animal fats.

After over 20 years as a vegetarian I slowly started introducing animal foods back into my diet and a while later went on the GAPS diet. My body started going through a lot of changes. The journey was tough, but six months later my interstitial cystitis was gone.

My health today

To this day I have not had another urinary tract infection and the symptoms of interstitial cystitis are gone. I only have flare-ups of bladder pain on very rare occasions when I’ve overeaten or eaten something that doesn’t agree with me. But they never last long.

The changes I’ve made to my life have had additional benefits such as increased energy and fitness. However, I still have some digestive issues that I keep on trying to resolve. But overall, I’ve come a long way!

The Truth About Coffee and Caffeine (via Montreal Healthy Girl)

Give up my morning dark roast? Are you crazy?

One of the hardest parts of having IC for most of us is having to cut out foods or beverages that we love, that we crave, that are a seemingly integral part of our lives. Unfortunately, cutting out common trigger foods and ingredients, caffeine being a big one, is also one of the most important steps for the vast majority of us in moving from constant pain and inflammation towards healing our bladders. In a great video from Montreal Healthy Girl, Brittany Auerbach gives a summary of the downsides to consuming caffeine, not least of which it disrupts optimal absorption of nutrients your body needs and craves to thrive, right down to the cellular level.

“If you feel so tired that you feel compelled to drink coffee or tea, or have caffeinated, stimulating beverages to feel awake or vibrant in the mornings, then that’s obviously a sign that your body isn’t getting what it needs.” – Montreal Healthy Girl

Okay, so if you’re going to cut caffeine from your diet, that means you’re going to need to give up coffee (yes, even decaf, which isn’t 100% caffeine-free), tea (except for herbal tisane), colas, energy drinks, and chocolate. It also means you’re likely going to have to go through some short-term physical and long-term psychological withdrawals, and you’re going to have to re-frame your thoughts around coffee and tea. Does it really make you feel as good as you imagine it does? Or does it sometimes or often give you the sweats, the shakes, maybe a headache, and a crash once your blood sugar level drops suddenly if you’ve had a cuppa joe instead of a real meal… not to mention a burning bladder and urethra later when you pee?

Why is coffee so bad for you?

1. Coffee is highly acidic, and as such, it lowers your body’s pH (acid-alkaline levels), by necessitating the leeching of minerals like calcium and magnesium from your bones to neutralize the acidity and eliminate it via your urine and feces.
2. Caffeine is a diuretic, which means it causes you to pee more to get rid of excess liquid, and with that can mean more bladder pain, even spasms, as your bladder gives off the “I need to go now!” signal. It also simply overburdens your already overburdened bladder with the number of times you’ve got to get to the toilet.
3. There’s potentially a ton of junk in commercial coffee. Do you know where your coffee comes from, how it was grown, how it was processed? With IC, it’s always a good idea to avoid preservatives, additives, and other chemicals that are both toxic and addictive anyway!
4. Caffeine can lead to adrenal fatigue. You want to avoid this at all costs.
5. It’s not just the coffee itself that’s not doing you any favours, but what you might be adding to your brew: sugar, artificial sweetener, whole-fat cream, cow’s milk, and, the worst offender, flavoured coffee creamers.

“Most of us are not putting organic, raw, sprouted, homemade almond milk and a little bit of raw honey in there.” – Montreal Healthy Girl

So how to give it up?

1. Cut it out SLOWLY. If you quit cold turkey and you’re a heavy coffee drinker (more than two or three cups per day) you’ll want to avoid the awful fatigue and tension headaches that a sudden fast from your drug of choice can often cause.
2. Substitute your lovely warm drink with something that as closely as possible approximates the indulgent, comforting, or stimulating aspect of coffee that you crave. Rooibos tea is great with a bit of milk as a naturally caffeine-free substitute for black tea. You could also warm some milk and add a splash of natural organic vanilla, or a pinch of cinnamon. Of course, a fresh-squeezed juice or homemade green smoothie would be the best option to replenish your mineral stores. Check out your local health food store or health food section at the regular grocery store to find some other type of drink you can indulge in that’s naturally caffeine-free. Make it your “thing” and enjoy it!
3. Recognize that caffeine is a drug (a much-loved, but often abused drug) that is a stimulant, and treat it as such, with great respect. If you must have it in your life, think of it as a useful product to use when you need to be alert and focused (like an intense study session or long road trip), or to simply indulge in on special occasions like holidays or birthdays.
4. Remember that caffeine is for the weak. Listen to your body and give it the nutrients, quality sleep, fresh air, and aerobic exercise it needs and you’ll be light years ahead of coffee drinkers in terms of your energy and mood on a daily basis. Unlike the poor saps with dark circles under their eyes who can’t even speak until they’ve had their morning jolt, you’ll wake up refreshed and energized naturally, and enjoy your days without the mid-afternoon slump that for those sad caffeine addicts requires yet another hit of their drug of choice. Smile and treat them kindly, but feel pity for them, knowing in your heart that while they’re stuck in a dark cycle of despair, you’ve  seen the light, and it feels great.

 

Every day is a new change to work towards better health, and every meal is a chance to heal. I “officially” gave up coffee a year ago, and have slipped up many times in the last 12 months (even as recently as last night at Easter dinner), but I’m always thinking of it as a chance to get back on the horse and keep going with my goal of healing. The most important thing to remember is that it’s not so much about depriving yourself of something you love, but letting go of a drug that’s causing you to stay stuck in your pain and your addiction. You can transcend your unhealthy attachment to the bean and re-frame the way you think about it. It’s not evil, but it’s not helpful, especially for you or your bladder. Today I could have had a cup of coffee with cream after breakfast, but I chose not to. I reminded myself that eating something nutritious (and delicious!) was a better option, that wouldn’t cause a crash later, anyway. And I reminded myself of how my heart was racing and how I couldn’t get to sleep last night after having two cups of dark roast after dinner. Besides messing with sleep, coffee has been linked to premature aging skin, anxiety, mood swings, and interferes with the production of cortisol, a stress hormone.

Just in case you need any more reason to give up your Starbucks habit, here are 20 awesome benefits of quitting caffeine.

Here’s to healing in 2016!

At the end of the year I’m thinking about all of us suffering with IC, and hoping and praying for a cure in 2016. Of course, it’s undoubtedly not as simple as that, but then, miracles do happen. I’ve heard of spontaneous healing for various serious chronic conditions, and I’ve often heard of slow, but perhaps more inspiring stories of IC healed through hard work and self-love. As fellow IC Warrior, Wren Elizabeth, posted today on the Healing IC Naturally Facebook page, there are many paths to healing, though it’s a unique and mysterious path for each of us. Sometimes it can be lonely, but with each of these stories I come across, I feel renewed in hope for my own healing. If you’re breathing, there’s always the possibility of healing. Anything is possible. I believe this, and I hope you do, too. So for all of us with Interstitial Cystitis, here’s to a great new year, filled with health, happiness and maybe, just maybe, an end to our symptoms for good. Here’s Wren, in her own amazingly inspiring words:

I am often asked how I have been able to heal my bladder and bring my IC under control/to a bare minimum. I never really know how to exactly answer this question because I want to say so much of my process was mental, yet that isn’t completely true. I do not say my process was mental meaning that my IC was something “in my head” but rather it was mental because I had to first love myself before I could even attempt to follow the healing path. I feel, many times, when I respond to the questions about how I have healed, that I come off as living in “Pwrencess World” and that I’m just a big ray of sunshine la di la di la skipping around and throwing rainbows at everyone. Which is ABSOLUTELY not the case no matter how badly I wish I could live in that world! I SUFFER TOO. I wake up every morning fully aware that I am constantly fighting a battle with my own body. A few years ago, this killed me (literally it almost did). I hated the idea of being chronically ill, I hated having an illness that couldn’t be cured, I hated being in pain, I hated not getting any relief, and the “I hate” went on and on and on. I was so focused on how miserable and how terrible and how much I HATED IC, that I forgot to remember how much I love being me and how much I love reading and writing and playing with my dogs outside and visiting with my mom and all of these other things that are so good for the soul, yet get lost in our lowest times. IT IS HARD. It kicks your ass and tells you that you need to stay down. It kept me down for a long time. Way longer than I would ever like to admit. I let it beat me. I let it win. And then one day, I woke up and I decided that if I couldn’t get rid of it, I was at least going to fight back. At this point, I wasn’t even focused on winning, I couldn’t win at this time in my life, but what I could do was wake up in the morning and say “I’m taking something back today.” And I did. I did something I enjoyed or something that made me feel as if I had accomplished something for the day. It could be as little as washing my face or doing the dishes or something big if I were feeling up to it! I built on this every day. I never allowed myself to wake up in the morning and let IC take everything from me. Even if at the end of the day, IC had still won and worn me out, I still woke up and was determined. I did this for the past year, and it’s a slow process at first, but once you get into the swing of it, your heart begins to grow again and you remember all of the things you love so much and the thins that you really hate (even though they are still there) shrink and do not seem so menacing with the light of your love surrounding it. This is the state I was in when I began to take the measures to heal. Exercise, healthy diet, supplements, taking care of my body. Something I could not even imagine doing a few months earlier. This took some time as well. And let me tell you, it wasn’t easy. I had melt downs. I had horrible days. I had days where life got the best of me. I still have all of this as well, the difference is is that I didn’t let it keep me back! I allowed myself to be tired and rest and heal and cry. But I didn’t let IC take my life away. And I didn’t win every battle that’s for sure. But the craziest part is, I kept training and practicing being healthy and loving myself. And suddenly I realized that I wasn’t just taking back forts anymore, but I was winning the war. And I was TOUGH. A flare that would have brought me to my knees and kept me in bed for days was hardly anything now. I was winning. And now I refuse to quit winning. It feels good!

HAPPY NEW YEAR!!

Stories of hope: “Start with taking care of yourself”

Fellow IC Warrior Kimberly Dumont has found a way to heal her bladder, which she believes will remain healed as long as she continues to look after herself. In a recent email interview, I asked Kimberly about her experience with Interstitial Cystitis and learned about her success with self-healing and what steps she’s taken to recover.

1.     For how long did you suffer with the symptoms of IC (and how did you know it was IC)? 

I first had symptoms of what I thought were frequent UTIs when I was about 20, in 2008. I went to the college wellness center several times, they confirmed UTI and gave me Cipro and AZO. I continued to have symptoms, and in the winter of 2009 when I was home visiting from school break, my mom took me to the ER because I was having blood in my urine, a hard time using the bathroom, and the pain was horrible. They confirmed a UTI, gave me Cipro and AZO, and sent me on my way. I went to a regular family doctor after some time because my symptoms were still pretty regular, and again was told a UTI, given the Cipro and AZO and sent on my way. I was getting tired of allegedly having UTIs all the time, and a lot of pain and discomfort. There were so many days it was so hard for me to even get up and do anything. When I saw the urologist, he told me that I had an abundance of red blood cells in my urine, however I did NOT have a UTI, and he thought I might have IC but wasn’t sure until he did a few more things. He sent me for an ultrasound of my kidneys and bladder, which did not show anything. He then did a scope in his office, where he saw my bladder was actively inflamed, raw and bleeding, and only held about a third of what it should. I got an official diagnosis that day, and I was told to go back for an outpatient procedure at a hospital with him so he could stretch the bladder out. I got the cystoscopy with hydrodistension in the fall of 2011.

2.     Do you consider yourself cured?

I would not say cured. I know if I go back to eating bad foods, having a lot of stress and not enough water, that I will have symptoms again. I want to say that I believe I have healed myself, and will continue to be healed as long as I continue with my current regimen.

3.     What steps did you take towards healing yourself?

I first got the cystoscopy with hydrodistention done, and for about a year I was symptom free (just about). My urologist educated me on the IC diet and said to do stretches or yoga, and informed me there was a medication out called Elmiron, but that people seem to have better results with diet modification and with yoga or relaxation. I followed the IC diet for a while after having the cystoscopy, and for some time I was feeling better. I had urgency still, but it was not painful. At times though I would have a lot of burning and pain, and would take the AZO.

The last few years I have had bouts of some flares, and I would modify my diet. I had been feeling better, so I found myself having more acidic things, more alcohol again, which would bring on more pain. I started doing a lot of research on natural remedies and healing, and came across a healing IC natural group on Facebook, that had a lot of information. I found two popular things, marshmallow root and aloe, that people reported to be helpful. I bought George’s 100% distilled aloe about a week before Halloween of this year. I also did a lot of research of acidic and alkaline foods, as my urine pH has always been very acidic. I started working on having more water constantly and trying to balance my urine pH. I noticed that when my pH was not as acidic, I had less pain and fewer symptoms.

Since I started the aloe, my urine has come back normal. I have not had a normal urine culture since 2008. The most recent urine samples I had in November indicated a presence of white blood cells, and a higher than normal red blood cell count, along with an acidic pH of 5.5. I also had a cystoscopy done about a week ago (December 2, 2015) and my urologist (a different doctor than who I first saw) told me my bladder looks normal, and to keep doing what I have been doing. The urologist I have now, when I asked him a couple of months ago about aloe and other remedies, was dismissive of this and stated that the only things that help IC are Elavil, Elmiron, and the hydrodistention.

4.     Do you have any theories on what causes IC?

I am not really sure what caused my IC. I believe it could be a mixture of a traditional American diet of badly processed foods, and also may be autoimmune. There were periods of time where I drank a lot of alcohol as well, and I feel that too contributed to it.

5.     Any hunch on what might cure the condition?

Treating yourself well. A whole foods, plant based diet. Keep yourself well stretched and relaxed. I firmly believe that aloe also helped heal the rawness and inflammation I had.

6.     Do you think Western medical treatments are helpful (instills, medication, hydro-distention, etc.)?

I believe a lot of these medications only mask the symptoms, they do not work on truly healing the issue. The hydrodistention was helpful for me, but only short term.

7.     What do you believe is the most important step for someone to take who is newly diagnosed with IC?

Do your research. If you have a doctor (like my current one) that says the only things that help IC are medications or the hydrodistention, then ask a lot of questions. Be your own advocate, and if your doctor isn’t listening then find a new one. But keep yourself educated on what has helped others, and don’t settle for something because one doctor told you that was the only thing that could help.

 8.     What do you believe is/are the most important steps(s) towards true healing?

I believe that taking a natural approach, knowing how your body is and trying to make it feel better is the first and (most) important step. Find out if your body is acidic, find out what foods irritate you. Then work on that by journaling your food, logging what bothers you, and eliminating those foods. From there, you can work on healing yourself and even re-introducing foods.

9.     Any recommendations for IC Warriors in terms of useful resources?

YES! Join the healing Interstitial Cystitis Naturally group on Facebook – https://www.facebook.com/groups/181059451933468/

There is a lot of helpful information out there.

Also, the IC network has the IC diet list of what foods are good to consume and what can cause a flare.  However, I believe that dairy and gluten can cause inflammation, and I also encourage people to look into a less acidic, higher alkaline diet, which will also not include some foods such as dairy or gluten that may be listed as okay on the IC food list.

10.  Any other tips or words of advice or encouragement for the IC patient?

It is really hard, and seems like nothing will work, especially when you hear there is no known cause or cure yet. Start with taking care of yourself. Reduce toxins you put in your body. I still consume some dairy and gluten, but I have cut it down a lot. I have not eaten meat in many years, and would encourage people to cut back on this or cut it out totally, as it is very acidic. Also try new things. Try alternative treatments and natural remedies and see what you react well to and do not react well to. Everyone is different, and some things that help one person may flare another. Keep note of what has or has not worked, and keep trying. Best of luck!!

The adrenal fatigue connection

A huge step forward for me this month towards healing: I saw my ND again this week to get the results of my hormone panel test (24-hour urine test), and the results were not surprising to me: I am in the final stage of adrenal fatigue. My adrenal glands have gone beyond the point of producing too much circulating cortisol (due to chronic stress of all kinds) and have basically stopped producing or even storing cortisol at all. I have been exhausted and in pain for so long now, and to know that my hormones have a lot to do with this is good to know so that I have something concrete to work with. There is a HUGE link between cortisol and IC pain. So…

How are your hormone levels?

Adrenal fatigue is something most Western (allopathic) doctors dismiss out of hand, because the standard tests for adrenal function are basically black or white. Either you have adrenals that have stopped working, and therefore have what’s known as Addison’s disease, which is very serious, or you’re fine and you should stop pestering them for tests. This is frustrating, but there’s a way around the problem: see a naturopathic doctor or functional medicine doctor. They can order and decipher the results of tests that are much more nuanced. If you can afford it – unfortunately these non-traditional medical professionals are not covered by universal health care in Canada, and likely not anywhere else in the world either – I recommend highly that you get your hormone levels checked: sex hormones (estrogen, progesterone, testosterone), thyroid (TSH to start), and the stress hormone cortisol.

Is adrenal fatigue what’s flaring or even causing your IC?

If you’re reading this you need to read Wendy Cohen’s The Better Bladder Book. At least the chapter on Fighting Adrenal Fatigue, because the author – a registered nurse who recovered from IC – goes into great detail about the causes and connections of adrenal fatigue and IC, and there are a lot. She also has a lot of good tips on treating and dealing with the problem. It seems most of us with IC have chronically under-functioning adrenals, and this becomes a massive problem if we develop IC because of several factors:

1. The adrenals are responsible for producing cortisol, which is a stress hormone that is released in response to all kinds of stress, both physical and emotional. When the adrenals are overburdened (or simply weak and under-functioning in response to normal stress levels), they pump out a lot of cortisol, but over time they burn out and stop producing much cortisol at all. And when cortisol drops below a certain point, inflammation goes unchecked because cortisol works to keep inflammation from getting out of control throughout the body.
2. Adrenal dysfunction is directly tied to gut symptoms – leaky gut, gluten intolerance, food allergies, etc. – which in turn are directly tied to IC symptoms.
3. Low functioning adrenals can cause chronic fatigue, which certainly doesn’t help in dealing with the chronic pain associated with IC.
4. The adrenals produce not just cortisol but a several different hormones, including estrogen, for which there is a high number of receptor sites in the bladder. If your adrenals are malfunctioning and your sex hormones are out of whack, your bladder may be causing you more pain simply because of an imbalance in your estrogen levels.

It’s unknown whether adrenal fatigue leads to IC, or vice-versa, or perhaps simply that there’s a strong correlation, but the fact is, getting your adrenals back in good shape will undoubtedly lead to fewer or at least less severe bladder symptoms. Do your bladder symptoms ease off when you’re on a vacation? If so, it’s most likely because you’re less stressed, and with less stress, comes less adrenal fatigue. See? It’s all connected.

What to do if you suspect adrenal fatigue

Even if you can’t get your adrenal function tested, it’s probably safe to assume you’ve got overburdened, if not under-functioning adrenals if you’ve got IC. Step one, de-stress. If you need to take a step back from several overwhelming projects at work, do that. If you need to delegate household chores to family members, do that. If you need to take a vacation and get away for a little while to totally switch off, that would be the best thing you could do for your poor body at this point. Meditate. Do deep belly breathing. Make a point of relaxing every day. Also, get more sleep. Take this seriously. If you wake up feeling tired AT ALL, you need more sleep. Ideally, get to sleep early (by 10 p.m.) and stick to a sleep schedule. My ND said I should aim for nine hours a night, and try to take a 20 min nap in the afternoons if I feel sleepy. A prescription to nap! I love her. Exercise, even if it’s as simple as a daily half hour walk, because this does more good things for you and your adrenals than you might realize. (For example, lowering stress, helping to increase quality of sleep, and supporting efficient use of calories.) Yoga is another awesome habit to get into. The next thing is to look at your diet. You MUST give up caffeine, which is like gasoline on a fire when it comes to sending your adrenals into overdrive. They can’t handle it, and even if it perks you up, you’re not doing yourself any favours in the long-run. Try to stay hydrated throughout the day, and eat an alkaline, anti-inflammatory diet. Think heavy on the veggies, with a bit of fresh, pasture-fed meat or wild fish, and some low glycemic carbs, such as brown rice or quinoa. Also, eat at regularly scheduled times to avoid having low blood sugar because the adrenals have to work extra hard if blood sugar spikes and drops constantly. Maintain an even blood sugar level and you’ll be doing a lot to help your adrenals. See an ND or do some research on herbs and other supplements that can help keep you calm and support the adrenal glands. Among many other supplements, I’m taking 800 mg* of magnesium every night, which helps to get me to sleep, keeps me regular, and overall keeps me more calm and feeling at ease.

Top 10 foods to avoid** when healing your adrenal glands

1. Caffeine
2. Alcohol
3. White flour
4. White sugar
5. Chocolate
6. Fast food (low nutritional value)
7. Junk food (additives/preservatives)
8. Hydrogenated fats, oils, and deep-fried foods
9. Any foods to which you have an allergy or sensitivity
10. Foods that have an addictive quality for you

I may need to do a course of bioidentical hormone replacement therapy to get my cortisol levels back up, but that’s something I’ll discuss with my ND when I see her again in about six weeks. For now, I’m doing all of the above and taking a whole slew of herbs and supplements to support my adrenals and bladder and body as a whole. I feel truly optimistic that even if this adrenal piece of the puzzle doesn’t solve my IC issue, it will at least lead to much fewer and less severe IC symptoms. And that, for now, is good enough for me.

*See your ND for best dose for you

**From the Better Bladder Book

Is organic essential?

Photo: diyreiguy.com

When it comes to healing IC, is it really necessary to spend extra money on organic food?

Every time I go to the grocery store I wonder if I should be shelling out the extra money to buy something that supposedly is better for me, while I know there’s a lot of controversy surrounding the subject. The answer isn’t really very simple, but I did a bit of digging (pun intended) and discovered a few things in a local newspaper article and in a couple of online articles that cleared up some of my confusion around organic farming. First…

What does “organic” even mean?

“Organic,” by definition, means produced without the use of synthetic fertilizers or pesticides, genetically engineered organisms, or artificial ingredients.  Foods in Canada that conform to that definition are certified Canadian Organic Standard by third-party inspectors who visit farms and factories to check for things like manure management and pest control methods. In the US, that’s the job of the United States Department of Agriculture (USDA) and in Europe, the European Organic System (EOS) makes sure the crops and meats sold under the label conform to the definition.

Is organic more nutritious?

Simple answer: No. According to a recent article in the Vancouver Sun, Stanford University did a meta-analysis of 237 studies and found “little difference” between conventional and organic produce. However, the Stanford study did find some slight advantages to organics, namely slightly higher anti-oxidant phenols in organic produce, slightly higher Omega-3 fatty acids in organic milk, and less antibiotic-resistant bacteria in organic meats. (I’m not sure what “slightly” constitutes in this article, but I’m guessing it’s negligible.)

Is organic safer?

Simple answer: Not necessarily. Although celebrity nutritionists like Julie Daniluk ardently promote organic because of its lower pesticide residue (11 per cent, compared to 46 per cent of conventional crops), it’s not a clear-cut, black-and-white rule that eating organic means no exposure to toxins. Especially now with mega-grocery stores like Walmart and Costco jumping on the marketing scheme of organic labeling, it’s difficult now to know for sure that foods with the organic label aren’t still contaminated with allowable “natural” pesticides like rotenone, pyrethrum, and copper compounds, especially when, according to Scientific American, “there is nothing safe” about these.

So, ultimately, should someone with IC (or other chronic illness) buy organic?

Simple answer: Yes. If you can buy locally, from a farmer’s market, and actually speak with the farmer who is selling you the produce directly, you’re pretty well ensured the food hasn’t been through chemical hell and hasn’t had to be doused with preservatives in order to get it shipped to you.

But when it comes to your local grocery chain, it probably makes sense to be a bit discriminatory in order to avoid completely blowing your budget.

According to the Environmental Working Group (EWG), not all produce is created (or should I say contaminated?) equal. In tests done on conventional produce, some fruits and vegetables were found to be heavily loaded with pesticides. The worst offender? Apples. Nearly 100 per cent of conventionally-grown apples tested were found to have pesticide residue. The best? Avocados. Only 1 per cent of conventionally-grown avocados had pesticide residue. So it seems it’s most likely a waste of money to buy organic avocados.

Here’s the EWG’s quick list of The Dirty Dozen – the 12 types of produce with the highest pesticide load, and The Clean 15 – 15 types of produce least likely to be pesticide laden.

(Of course, for those of you who are independently wealthy and buy all your groceries and home supplies at Whole Foods, just go organic all the way and don’t even worry about the on-going debate… might as well err on the side of caution if you can!)

What do you think? Is it imperative to buy organic or is it a waste of money? 

Low FODMAP diet to heal a leaky gut

I meant to post every day on this blog to update on my progress with the restricted diet. I feel bad for slagging off, but it’s been for two good reasons: 1) I totally went off the rails 10 days into the diet and ate all kinds of things I shouldn’t have in the last two weeks, which meant nothing good to report in terms of decreased symptoms, and 2) I’ve felt so overwhelmed with all the things I feel I should be doing everyday (meditation, yoga, journalling, walking… not to mention the usual day-to-day things like cooking, cleaning, working) that taking “update blog” off my to do list seemed reasonable considering I’m trying to lower my stress. I will continue to update on my progress in the next few weeks, but it won’t be every day.

However, I do have an update today, and I think it’s positive, so worth sharing.

Went to see my naturopath this afternoon and got the test results from the IgG blood panel. I guess I’m lucky, because it turns out I don’t have any problem at all with candida albicans. No yeast issue in my gut. I also don’t have any problem with gluten or wheat. In fact, all foods on the panel showed no antibody response mounted by my immune system, except for dairy (of all kinds) and soy and all soy derivatives.

After going over all of my latest symptoms – extreme lethargy, low mood, aches and pains, and of course extreme bladder pain and burning – my ND suggested I try the Low FODMAP diet for a month. She said it’s imperative I’m strict with this one in order to see any improvement. The idea is to sooth and heal my leaky gut and digestive system in general. In theory, if I eliminate sugars of all kinds, including fructose, lactose (dairy), and grains, among others, I should see a great improvement in inflammation, and therefore a decrease in pain. (I’m also going to go heavy on the veggies in order to make the diet more alkaline.) This isn’t the first time I’ve heard of the connection between grains/sugars and inflammation. This diet is much less strict than the one I was meant to be on for the past three weeks, but it’s still going to be a challenge. It’s very complicated and not at all intuitive. Some vegetables that seem very similar are okay and others aren’t. Cauliflower is not allowed, but broccoli is, for example. But I am determined to make this work. As I said to my ND today, I don’t really have much choice since diet is the major key to healing IC. 

In a month I will return to my ND to get the results of a 24-hour urine hormone test. Hopefully that will add another piece to this complex IC puzzle. In the meantime, I’m going to be spending a lot of time in the kitchen and at the grocery store.

Why an Alkaline Diet is the Answer

How Long Does it Take to Heal?

I’m almost finished reading Solving the Interstitial Cystitis Puzzle, by Amrit Willis. I’ve realized two things:

1. There is definitely a way to heal IC and it’s with an alkaline diet. 
2. It’s going to take a long time eating an alkaline diet to heal my IC. 

I feel conflicted about this. On the one hand, I am relieved to have a constructive, logical path to take towards getting well and out of pain, but on the other hand, it’s overwhelming to realize that I might have to eat a very, very, very restricted diet for up to several weeks before I might see any improvement, and I might possibly have to stay on this very, very, very restricted diet for up to six months before I can even begin to re-introduce other foods.

Nobody said healing IC was going to be easy, but damn. This is a serious challenge. I love rich, sweet, salty foods, and giving up pretty much everything but vegetables and fish for a good long time seems torturous. I totally fell off the wagon this weekend, being Thanksgiving, and ate pumpkin pie and chocolate after a big turkey dinner. I even had a glass of milk yesterday. I’m all gassy now – no surprise, since I know cow’s milk is an irritant (IgG) for me – and I certainly haven’t seen any improvements in my pain or other bladder symptoms after indulging in several things I’d been avoiding since the beginning of the month. It’s just so frustrating to have been so good for more than a week and not feel any relief from my pain, urgency, frequency, and retention. I know I should be more patient and stick to the diet, but wow, it’s hard. I don’t know how people do it. I don’t know how I’m going to do this for months, let alone weeks, but I’ve got to find a way because alkaline seems to be the only answer to my IC problem.

Why Alkaline is the Answer 

The longer something is out of balance, the longer it will take to bring it back. The longer you’ve been eating an acid-forming diet, and the longer you’ve been unwell, the longer it will take to replenish your stores of alkaline minerals and regenerate the good health and vitality you once had.

For most people with IC, it’s not hard to look back and realize the writing was on the wall a long time before Interstitial Cystitis was even part of our lexicon. I’ve been unwell with IC for more than five years now, and looking back over my life, I realize I’ve been on a steady slope down from good health as far back as my early teen years. Eating an acid-forming diet, enduring all kinds of physical, mental, and emotional stress, not getting enough exercise, and other factors including genetics all contributed to this slow progression away from health towards disease. My weak point has always been my digestive system. First it was indigestion and stomach aches, then a diagnosis of H. Pylori, then of Irritable Bowel Syndrome (IBS), then GERD, then finally IC. And it can all be traced to a diet that’s been slowly but surely contributing to a depletion of essential minerals in my body.

As far as I can understand from Willis’ book, the basic model of eating an alkaline diet works like this: you boost your ratio of alkaline-forming foods to 80% (vegetables) and eat only 20% acid-forming foods (meat, dairy, grains) in order to re-stock your body’s supply of essential minerals like calcium, magnesium, potassium, and sodium, which get used up and excreted when our bodies need these to deal with an overly acidic state.

Got Greens? Your best source of calcium is not milk

According to Willis (and other sources I’ve read recently), it’s not a lack of calcium intake that’s the real issue with diseases such as osteoporosis, but an extreme output of calcium as our bodies use this precious mineral to buffer our cells’ exposure to too much acid. So don’t drink more milk to restore your calcium intake – that would be counter-productive because dairy is acid-forming – but rather get your calcium requirements from dark leafy greens, fortified low-acid orange juice, almonds, and other plant-based sources that are alkaline-forming and don’t put a further acidic burden on your body.

I highly recommend reading Willis’ book. Even though the solution it presents is not an easy path to follow, it offers solid reasoning behind the steps required, as well as scientific evidence through nutritional research to back up the advice. Also, knowing Willis herself is a registered nurse who had IC makes it all the more reliable a source of information to move forward with the healing steps outlined within the book.