Friday, August 14, 2015

IC awareness month.

Although I have acquired many other related conditions and disorders throughout the last few years (or discovered ones I already had and didn't know about), Interstitial Cystitis is the one that started it all.  (By the way, I love when they are referred to as acquired conditions -- like someone walked up to you carrying a big ole' box with a red bow on top... "Congratulations!  You've been selected to acquire fibromyalgia! Woohoo!!")  To say that it is a complex condition is an understatement.  It doesn't present itself the same way in any given case, it doesn't respond to treatment the same way even day-to-day or person-to-person, and it is constantly changing and progressing.  Talk about trying to wrangle a beast. Since September has been IC Awareness Month (which is sadly coming to a close!) and because I have had a few friends ask me about what I personally do in my own life to combat my IC flares and deal with my IC on a daily basis, I thought I would write this blog post to share some of those things with you.

Teal is the awareness ribbon color for IC Awareness.

For those of you who aren't aware of what IC is (lucky you!), in the simplest terms, it is an inflammation of the lining of your bladder.  That's the easy part.  Where it gets complex is why your bladder lining is inflamed -- some people have ulcers in the lining that cause it to be irritated, some people are inflamed due to another major trauma that happened in their body (such as a surgery or infection), some believe it is caused by an autoimmune disorder that starts attacking your bladder, some get it seemingly due to repeated Urinary Tract Infections, and some seem to just spontaneously get it with some tremendously horrible bad luck.

This is what a bladder with IC looks like.  A normal bladder is just smooth and pink, with normal, non-irritated tissue, like the insides of your cheeks.

Obviously, as with other parts of your body, inflammation causes pain and discomfort.  I explain the feeling of IC in your body like having a scraped knee, because that's what our bladders look like and what they feel like.  They are irritated and raw, and just like a scraped knee they hurt whenever you move and if you push too much pressure on it.  In the bladder, it also causes the feeling of needing to go to the bathroom all the time, whether you truly do or not.  Depending on how long you've had IC, many people develop scar tissue in their bladder, which physically shrinks the surface area of the bladder so that it can't stretch like a normal one, and you feel like you have to go at a much lower level of liquid than a normal person (for example, a normal person can hold 700 cc's before they have to go, while I can only hold about 250-300 cc's).

Needless to say, having such a fundamental building block of life messed up affects all areas of your life, and there are many different tips, tricks, and just general information that I've learned throughout the years that I wanted to share in a blog post to help those of you that also suffer from IC.  I am definitely not a doctor, and these are only my personal opinions, but these are things that I've found about how my IC works and what helps me.

During the summer when the weather is warm, my IC gets substantially better.  I live in upstate NY, so this "summer" I talk about is really only about 3 months out of the year (if that), but that is my reprieve.  It's the few blissful months that I can almost forget about my IC and the terrible pain that I experience the other 9 months of the year.  In the summertime, my IC is so good that I sometimes forget I even have it.  Sure, I have painful days here and there and sometimes a flare if I eat spicy food, but for the most part, I can eat well and enjoy myself.

Swimming doesn't bother me like it bothers others (which I am so thankful for), but I do make sure that as soon as I am done swimming, I wipe myself with Summers Eve Sensitive Skin pH Balanced Cleansing Cloths.  The sensitive skin kind aren't scented and they are pH balanced, so they will help with any bacteria that gets caught down there from whether you are swimming in a lake or a pool.  They come in a little pouch and also come in individually wrapped packets, so you can take them anywhere with you.  If I make sure to wipe as soon as I get out, I don't get an infection and don't get a flare.  Even though swimming doesn't usually bother me, I still treat it like it potentially could so that I don't take any chances and end up with an infection.  I also make it a priority not to sit around in wet clothes, because they harbor bacteria and can make us get a flare in an instant.  An excellent article that gives more in-depth information about swimming in both pools and lakes/ponds can be found on the IC Network here.

When I'm feeling better, it's a great time to get outside and do a lot of outdoor activities to take advantage of the beautiful weather and my body cooperating for once.  I love going hiking with my dogs, going fishing, taking them to the dog park, kayaking, or just sitting outside on a nice day.  It's best to move around when you can because it helps your body stay healthy and prepared to fight the bad guys in your bladder when it needs to.  I think of the summer as my time to build up the defenses in my body to prepare for the winter.  Like how a bear stashes all of the food he will need for winter in preparation for his hibernation, I am getting in my exercise and trying to build up my body for the terrible winter ahead so that I at least have some reserve towards the fight.

One of the most important ways that I think we can fight IC is through our diet.  Because IC is inside our body, it is affected by everything we put into our body.  Think of it like an open wound (because it pretty much is, especially those who have ulcers in their bladder lining) -- pouring hot, spicy, aggravating things on it isn't going to make it much better, is it?  But if you put things on it that have nourishing ingredients that promote growth and contain a lot of vitamins, it will help it get better.  That's how I look at what I eat.

Summer is the easiest time to both eat healthy in general and eat bladder friendly, because so many foods are fresh and in season.  Fresh vegetables such as corn, peppers, cucumbers, beans, peas, and squash are all ready and waiting to be grilled for your dinner.  Grilling is wonderful because it adds flavor without having to add a lot of marinade or sauce, many of which can be vinegar based and therefore, not IC friendly.  Two main summer protein staples for me are chicken and salmon.  I also like to have beef about once a week in the form of a kabob or something similar, to fulfill my craving without having too much.  Chicken is a wonderful and very versatile protein for us ICers, because you can do just about anything with it.  (A side note is that I read in a magazine that because of the hormones injected into chicken, it's not necessarily safe for those of us with immune/female problems to touch.  Because of this, I always make sure to never touch raw chicken, either squeezing it out of the package or using tongs only.  Its up to you, but that is what I personally do.)  My go-to summer meal is grilled chicken, vegetables, and some brown rice with butter.  Yum!  I also eat lots of sweet potatoes and add garlic to anything I can, both of which are strong anti-inflammatory foods.

Ice cream is always an IC-friendly food... Lucky for us!!

For those times that you are at a barbecue and things look so tempting that you just can't resist, don't worry.  Not everything is off limits.  I do like to follow the IC Diet as a guideline to what will and won't irritate my bladder, because it was an enormous help when I was first diagnosed. It helped me see that some surprising foods that I thought were okay really weren't -- like that foods including any sort of red dye in them are harmful for our bladder -- and as soon as I started following the diet, my pain and symptoms lessened enormously.  But it is just that -- a guideline.  I have found foods on the "avoid" list that don't bother me at all, and foods that should be okay that send me right into a flare.  The best way to determine it is to use an exclusion diet, where you set up a baseline for yourself and then slowly introduce the food to see if that is what is making you flare.  If it does make you flare but you just can't resist it (come on, we're only human!), there is always the miracle product of Prelief.  Prelief is an acid-reduction pill that you take when you are eating food that you know will bother your bladder (like spicy foods, acidic foods, etc).  I usually take four pills halfway through the meal, and I swear it works like magic.  It almost always stops me from having any sort of a flare from that food at all.  Who doesn't love that?!

Ahh, the dreaded season change.  I love fall, it's my favorite season.  But since I got sick, I dread it coming more and more... because I know that with fall comes the days when I will be racked with flare after flare, pain so bad that I literally can't leave my bed.  Sigh.  Living in oblivion is nice for a few months until I am smacked in the face with the realization that I have to go through it all over again for months and months before I get back to lovely summer again!  Fall and winter are the times that I have come up with the most things to help me, because they are the times when I have my most flares.  Of course, you may be different and get most of your flares in the summer, but I think that overall, a lot of these products would work in either season.

The main product that I depend on every single day are my lidocaine patches.  Mine are prescribed by my doctor primarily for my fibromyalgia, but they are super useful for my bladder as well.  When I'm having a flare, I cut them in half and place them right above my pubic bone under my underwear.  I can wear them for 12 hours at a time (they're recommended for use 12 hours on, 12 off) and they aren't noticeable under clothes but can easily be worn anywhere.  The pain relief kicks in within about an hour, and helps even the worst flares.  I highly recommend asking your doctor for a prescription for these -- they have been a lifesaver for me in so many instances.

Another similar product to the patches are these ThermaCare Heat Wraps.  They are like little heating pads to go!  When I'm in the car or somewhere that I can't take my heating pad (which, really, is pretty much anywhere outside my house), I put one of these babies on my pelvic area and the heat helps to relax my bladder muscles and offers relief akin to a hot bath.  Now, I know this sounds silly because they do make Menstrual-sized ones, but I have found that the Neck-sized ones work best for the pelvic area.  The Menstrual ones are just kind of oddly shaped, while the Neck ones have two little dips that mimic the anatomy of our bladder and ureters and helps give more relief (in my opinion).  If I'm at home, I alternate between using a regular heating pad and a bag of frozen peas on both my upper pelvic area and my lower genital area.  This helps with not only bladder pain, but also pain in the urethra, which we also have from our frequent urination.  Trust me -- if you've only been heating/icing your pelvic area and have been skipping the urethra, try it.  You will feel SO MUCH better after icing that area, too.  And if you need help finding your urethra, check out this image.

Because we go to the bathroom very frequently and since most of us suffer from co-conditions such as Irritable Bowel Syndrome, we wipe a lot.  I don't know about you, but the softest bear in the world couldn't find a toilet paper that would be gentle enough on my ass after wipe #104.  So, the next best thing is something called Balneol.  It is a hygienic cleansing lotion that you put on your toilet paper when you are wiping for the trillionth time, to clean without having to wipe so hard with the paper and without having to use a washcloth.  It also doesn't sting, which is a plus!  I have also used it as a soothing lotion right before going to bed on any cuts or lesions from wiping that I had, and when I woke up in the morning they felt much, much better.  The only retail store I have been able to find this lotion at is Walgreens.  I ordered mine on Amazon because it was not only cheaper, but also because Walgreens only offers the small bottle for sale, while on Amazon you can also find individual packets that you can buy in a box, which are obviously much more convenient and discreet to take in your purse than a bottle.  (Is that a bottle of Balneol in your pocket or are you just happy to see me?!)

If this was what my bathroom looked like, I would never leave.  Ever.

Going along with cleaning, I also take a bath every night.  I have since I was a little kid, but now that I am sick, I also find it to not only be relaxing and comforting but also to help with my daily aches and pains.  On days when I am feeling especially bad, I add a few scoops of Epsom Salts to my bath (I get the plain kind because I hate that scent, but it is calming for most people) and it helps with muscle aches (including your bladder spasms) and can also help with constipation, if you suffer from that thanks to your IC.  Another important thing to remember is that anything with a fragrance or dye can trigger our IC, even if it's only used on the outside of our body, because of how sensitive we are.  Sadly, this means saying no to the majority of bath products, especially all the fancy ones on the market right now from great stores like Lush and The Body Shop.  The only place I use body washes or scrubs is in the shower and I wash myself with soap both before and after thoroughly to make sure no residue is left behind that could trigger a yeast or bacterial infection.  The everyday soap that I have found to be the least aggravating to our delicate bodies is the Dove Sensitive Skin Unscented Beauty Bar.  You can buy it in a two pack or multi pack at any drugstore or retail store like Target, WalMart, etc.  Like the name says, it is for sensitive skin (that's us!) and it is unscented so it doesn't trigger a flare.  It is also very moisturizing and doesn't leave me with dry skin, which is very important because in the winter my skin is extremely dry.  This soap doesn't leave residue on your skin but also nourishes you enough that you don't have to use cream afterwards if you don't wish to.

Like I said earlier, winter is the time that everything kind of goes downhill for me, so I make sure that my diet is in great condition for a solid building block in my body's fight against IC.  There are many articles out there about foods that fight inflammation and it's important to pay attention to those articles because they are very true.  Foods with lots of antioxidants can help fight inflammation in our body and since our bladders are all inflamed-up, why not start chucking food in your mouth that can help stop that?  Although I don't get much out of the exercise portions of them, I subscribe to magazines like Women's Health, Self, and Fitness, because they have excellent articles about keeping our body free from harmful things, great tips on what foods benefit us the most, ways to stay healthy, recipes for new foods that are usually easy to substitute, suggestions on boosting our immune health through means other than exercise, and occasionally they even have yoga-type exercises that I can do without too much struggle.  But every month, I learn new things about ways to stay healthy through food and adjustments I can make in my lifestyle.  I definitely recommend picking up an issue or two to browse through in addition to altering your diet.

I start every day in the winter with scrambled eggs.  Despite the hype of years past, you should eat the entire egg.  Eating only egg whites takes away essential vitamins and minerals that are found in the yolks and that are good for our bodies.  Eggs are a great source of protein in the morning and keep you full throughout the start of your day, and they are wonderful in fighting inflammation.  I notice a different on how my joints move on days when I skip eggs, so I can't help but think of the great work they must be doing for my bladder, too.  You can cook them any way you like, but I prefer to scramble mine with a little bit of fat-free milk, a pinch of salt and pepper (since pepper can be very bad on our bladder, I really mean only a pinch), and I add some shredded cheddar cheese on top.  (Cheddar cheese is a "try it" food on the list -- it may or may not agree with you.)

Turning scrambled eggs into omelet cups is a great way to make breakfast more fun, and an easy & fast way to make it portable if you have kids to feed! Simply use a muffin pan with cupcake liners and add any ingredients you want to the liners, followed by the egg mixture.  Bake for 18-20 at 350 degrees until the oven until a fork comes out clean.

This is also a great time to load up on your veggies if you wish to make your eggs into an omelet -- mushrooms, spinach, feta cheese, sweet peppers (except for green), and cooked onions can all be added to boost up your omelet.  You can also pair your eggs with an avocado (a healthy fat), or spread it on toast if you are choosing that as one of your other breakfast components.

This is the granola I choose for my breakfast.  It also comes in Honey Almond flavor.

I don't like to have the same exact breakfast every day, so there are a few variations I choose from to pair with my eggs.  I like to have whole grain waffles with sugar-free syrup (regular pancake syrup is an almost immediate trigger for me), warm whole grain apple cinnamon granola (studies show that people who eat granola/oatmeal for breakfast eat less calories throughout the day), a multi grain English muffin with peanut butter, or if I'm in a hurry, I will have a gluten-free fruit and nut bar that has a good protein value (at least 5g).

Yogurt is a must-have for breakfast as well.  I choose to have 100 calorie Greek yogurt in IC-friendly flavors (vanilla, blueberry, apple cinnamon, etc.) and add almonds (a great inflammation fighter) and fresh or frozen blueberries if I have them (another great anti-inflammation food).  Yogurt can be a "try it" food as well, but has so many good properties to help your body fight itself.  I also take a daily probiotic to boost the good bacteria not only in my gut for my IBS, but also in my bladder to keep any bad UTI bacteria at bay.

Fresh fruit can be difficult to find in the winter, and since I live in New York, it is very difficult to find.  Because of that, I rely on fresh frozen fruit.  Fresh frozen fruit is fruit that was picked fresh and then very quickly flash frozen to seal its flavor and freshness.  It doesn't get the freezer burn that other products might and retains both its taste and nutritional value.  I buy this fruit in bulk during the winter and keep it in my freezer for adding to yogurt, on top of pancakes or waffles, and adding to a smoothie with Kefir, a great probiotic drink that comes in lots of flavors.  I have also found that fresh frozen fruit allows me to tolerate many fruits that normally bother my bladder when fresh, such as mango, cherries, and pineapple.  Adding them into a smoothie with other fruits that you can tolerate lessens their impact on your bladder while also letting you reap their benefits (cherries are super high in antioxidants)!

Other winter foods that I rely on are rice (especially jasmine and basmati), vegetable soup, chamomile tea for soothing my bladder, pumpkin (even canned is IC friendly), and squash.  Almost any food that you are used to cooking can be tweaked to become an IC-friendly food.  I scour Pinterest all the time for new recipes for delicious fall and winter foods -- there are so many varieties out there that you're sure to find something that tickles your tastebuds!  If there is an ingredient that you can't tolerate, it can usually easily be swapped out, such as using almond flour in place of regular white flour that sometimes bothers some people, and replacing canned ingredients with fresh to avoid any preservatives that irritate the bladder.  Many message boards, such as the IC Network also offer an entire board dedicated to IC Diet Recipes, and include common replacements in recipes to make a food you're craving tolerable to your bladder.

While I don't particularly enjoy winter weather and would much rather have the temperatures be higher all year round, my favorite part about this chillier time of year is the clothes.  Fall and winter clothes are by far my favorite.  I love scarves, beanies, cardigans, chunky sweaters, sweatshirts, jeans, boots, jackets.. you name it!  As soon as I can, I'm mixing in a beanie with a tshirt, adding on a cozy sweater layer, choosing boots instead of flip-flops, anything to get my favorite clothes back into rotation!

However, a frustrating thing that I have noticed since getting sick is how sensitive my body's temperature can be.  I used to be pretty even-temperatured, not too hot or too cold and able to easily adjust when the air around me did.  Now it is very much the opposite.  It's hard for me to cool myself down once I get hot and even harder to get warm once I find myself with a chill, which is not a good reaction for your body when it is doing its best to stay healthy and fight off any invaders.  As soon as the temperatures start dipping, I make sure to be on top of my sweater game at all times, making sure to bring a cardigan with me when I am out past dark just in case I get chilly.  Maintaining a consistent body temperature means that your body is able to fend off any additional injuries or traumas to it, and able to use its energy towards fighting the infections or diseases already at work inside of your body, instead of potentially welcoming a new one by becoming too cold.

Another important thing is to be comfortable!  Who wants to lounge around the house in jeans and a blazer?  Anyone?  (...Bueller?)  I have tried my fair share of sweat- and lounge- clothes over the years, and have come up with my staples, which I included below in a handy diagram, with their direct links under the picture.  Pajamas are at the top of my list, but they have to be ones that are warm (but not hot) and that have a loose waist so that it doesn't press on my bladder.  The ones below (1 & 6) are from Victoria's Secret and are flannel and thermal, respectively.  They come in sizes small to extra large, and three varying inseams for us taller gals.  They DO NOT shrink in the wash (a rare thing to find in pajama pants!!) and get softer with each wash.  I usually wear them to bed and then stay in them around the house the next day because they are just that comfy.

The next is keeping our footsies warm.  I live in an old house, so the floor is always cold.  Even before living in an old house, my feet were always cold (dysautonomia hollaaa!)  Wearing fuzzy socks (4) or an adorable, fur- or fleece-lined pair of slipper booties (3 & 5) are a great alternative to trying to keep your feet warm by wrapping them in blankets.  Plus, you look tres chic!

1  2  3  4  5  6  7  8

Sweatshirts are a great layering piece for around the house or for running errands.  I like American Eagle's sweatshirts (2) because they are soft, roomy, and they are good quality.  They usually have a fleece layer inside, which makes them warm without being too hot, so I'm not doing the hot flash dance every twenty minutes ripping it off and then pulling it desperately back on.  They're reasonably priced, come in tons of colors, and have a front pocket for your phone, chapstick, or the snacks you hide for later (I just hide mine where they fall down my shirt.)

Long camisoles/tank tops (8) seem like kind of a strange staple item but hear me out.  One of the things I hate is when you are all bundled up, nice and cozy, and you bend over or you pull your legs up and your lower back gets exposed to the freezing cold air.  I hate that.  Your whole body gets a chill and all the hard work you did getting warm goes out the window!  Long camis go under anything, and they keep your lower back and bum warm so that you don't get a cold gap.  I buy mine from Forever21, because they are inexpensive but long, they last a long time, and come in a huge range of colors.

The last (and probably most important) staple is boyshort underwear (7).  I have tried so many freaking pairs of underwear, and this particular pair are the ones I always come back to.  They are the Lace Waist Shortie Panties from Victoria's Secret.  There are a few reasons that I like them so much.  First, the lace waistband is very stretchy, so it doesn't push into your bladder at all -- you almost can't even feel it on your groin.  Secondly, the higher cut on the front and side keeps any patches in place that I'm using, such as the ThermaCare patches or Lidocaine patches.  Sometimes, especially if you are sleeping with them on, the Lidocaine patches' edges can roll up and start to peel away, but with these underwear, it completely covers the whole patch so that they don't get caught at all.  With the ThermaCare patch, it creates a nice little pouch for it to sit in the front and keep it in place against your bladder.  Last but not least, they are cotton and breathable!  Having an all-cotton panel is a top priority for those of us who have IC, because our nether regions need to be able to breathe and have air flow, which these provide.  The lace on the legs is also very stretchy so it doesn't dig into your thighs, and they are comfortable under most, if not all, clothing.

I also find leggings to be a staple of my winter/fall wardrobe since they don't take a lot of effort, can be dressed up or down depending on the print or material, are easy to make up an outfit by just throwing on a pair with a chunky sweater, a pendant necklace, and some boots, and most importantly... they're pretty much sweatpants.  I get most of mine from Forever21 because they have a large selection in both regular and plus sizes but you can find leggings basically anywhere you shop.

Why yes, I really am made up of leopard spots & glitter!

Although I have only been diagnosed for two and a half years, my IC is so severe that right away, I wanted to try every possible treatment available to try and fix myself because I knew I didn't want to live at this level of pain longer than I had to.  (After going through a lot of these, however, I have realized that it's not always a good idea to push your body through so much at once.  More on that later.)  The first thing I started on immediately leaving the doctors office was the common three-drug medication regimen of Elmiron, Atarax (generic name hydroxyzine), and Elavil (generic name amitriptyline).  I have been on that since the day I walked out of my urologist's office, although my dosages have changed slightly.  I currently take 200mg of Elmiron twice a day, 25 mg of hydroxyzine at bedtime, and 50 mg of amitriptyline at bedtime.  These three medications taken together are the standard "cocktail" of drugs for IC patients.  Although they are considered a second line treatment according to the American Urological Association IC Treatment Chart, many doctors prescribe the pills right away because Elmiron typically takes six months to one year before any relief is noticed.  Because of such a long waiting period with the medication, doctors prefer to start their patients on it while continuing other first line treatments (see chart).  It took me about eight months before I started noticing any relief from the Elmiron, and it was pretty gradual, not sudden.  However, I did notice fairly quick pain relief from the Elavil & Atarax within about two weeks.  It wasn't a complete dissipation of my pain, but it was a significant decrease.  Along with these three medicines, I also take Toviaz at night to help with my urgency and frequency at night.  Before I started this medication, I was getting up to go to the bathroom around 8-15 times per night, but with the Toviaz I go once.  I am not a doctor, but if you are interested in any of these medicines, I strongly suggest doing research online and talking with your doctor to see if they would be a good fit for you.

The next treatment option I tried was bladder instillations.  For six consecutive weeks, I went every Wednesday to have a mixture of Lidocaine (a numbing agent) and Heparin (a blood coagulant that is believed to help heal the lining of the bladder) inserted into my bladder through a catheter (after all urine was drained from my bladder).  I held the mixture as long as I could in my bladder, with a minimum being 20 minutes, and then went to the bathroom as normal.  I personally did not notice any help from the instillations and in fact they made me very, very worse.  I started peeing chunks of blood and tissue when I was done with my instillations, and the pain in my bladder was excruciating. I had the instillation on Wednesday and would literally not be able to get out of bed until late Sunday night or early Monday morning because I was in so much pain and having to go to the bathroom so frequently (about every 15 minutes).  I quit after the sixth week with my doctor's approval and I haven't tried anything like that since.

Another therapy I have tried is physical therapy for my pelvic floor dysfunction.  Many of us who suffer from IC and/or its related conditions (Irritable Bowel Syndrome, for one) also have problems with pelvic floor dysfunction but may not know it.  The pelvic floor supports all of your lower internal organs, including your bladder, uterus, colon, rectum, pelvis, and hip joints.  Because of this, tightness or pain in any part of the pelvic floor can carry over into other parts of the muscles and affect the whole area.  This is especially true in how it affects your bladder.  If your pelvic floor muscles are tight or painful, they can prevent you from being able to fully relax your bladder to completely empty all the urine you have inside, and can contribute to any painful bladder spasms you have.  For a while, I went to physical therapy twice a week where I learned full body relaxation techniques that helped relax my muscles, received manual stimulation of my muscles in my lower back and hip area to help break up any muscle knots and promote relaxation, and used a TENS unit to stimulate my nerves.

While the therapy initially helped, as time went by it seemed to actually be making my muscle pain worse, like it was being over-stimulated, so I stopped going.  This doesn't mean it won't work for you, though.  I definitely encourage you to look into pelvic floor dysfunction if you are experiencing the symptoms and perhaps into physical therapy as a means of treatment.  The most important thing that I took away from my therapy was to not push your pee out when going to the bathroom.  Often times when we sit down to go, we are in a rush, someone is waiting on us, or we are just embarrassed that it takes so long for us to go.  We can get stage fright and just sit there for a long time waiting to go, and just get frustrated and push it out.  That is very bad for your pelvic floor muscles.  Every time you push to pee, it tightens your muscles even more.  Every time your muscles are tightened, it causes feedback to your organs that your floor is uneven and not supporting them well, which in turn causes pain and the inability to relax those muscles.  Being in pain and not able to relax your bladder prevents you from peeing.  See how it's a never ending cycle?  As difficult as it is sometimes, the best thing you can do is to NOT push your pee out.  Trust me, it's hard sometimes!  But it has made a huge difference with me.  If I sit there and feel like I have to go but can't and I really need to, I simply rock my upper body back and forth on the toilet a few times, like I'm milking my bladder.

Usually that's enough to push the pee down and I can "start my stream," as my urologist always says. Sometimes I also turn the faucet on to help me go, think of Niagara Falls (it really works!), or leave the bathroom and walk around for a few minutes before I try again.  Any of those tricks are enough for me to be able to go the next time I sit down.

The next treatment I tried was one that I hesitate to talk about, because I don't want to scare people away from what may be something that benefits them greatly.  I was referred to a doctor for an in-office cystoscopy to "confirm" that I had Interstitial Cystitis, despite the fact that I have all the symptoms, plus peeing blood, chunks of tissue, and there are no signs that I don't have it.  Anyway, I went to the doctor and had a rigid cystoscopy without any anesthetic. 

Firstly, most cystoscopies are done in the operating room under a light anesthetic, or "twilight".  You receive a medicine that makes you alert but forgetful, so that you can move from your stretcher to the operating table, but afterwards you don't remember any of it and therefore aren't in any pain during the procedure.  Many IC patients have in-office cystoscopies though, because anesthesia actually makes our IC much worse.  Anesthesia dries out the lining of our organs, and since our bladder lining is already aggravated and bleeding in some cases, receiving anesthesia can make it significantly worse and actually make our case of IC more severe.  Because of this, it was decided I would have the cystoscopy in-office without any anesthetic.  The urologist was supposed to use a flexible cystoscope which, as the name suggests, has a flexible tip that is like a really thin rubber hose that can be bent and move around.  Not only is it more comfortable when inserted into the patient, the tip of it is controlled by a device so that it can bend 90 degrees and the urologist can see around in the bladder without physically moving the scope around inside.

When I arrived at the office, they hadn't gotten the correct cystoscope in the night before and only a rigid one was available.  It is a thicker shafted scope that does not move at all.  The only way for the urologist to see around in the bladder is to physically move the scope within your urethral opening.  It was the most excruciating experience of my life.  I felt like someone was ripping me apart from the inside out, and the staff was not sympathetic at all.  I have a high pain tolerance and have had many painful medical procedures in the past, but this was by far the worst.  I was in hysterical tears because it hurt so bad and nobody was very nice at all, they just finished the procedure, handed me some tissues, told me I could get dressed and left.

This is what the inside of my bladder looked like from the pictures taken during the cystoscopy.  That particular doctor told me he didn't believe I had IC.

I don't want my bad cystoscopy experience to scare everyone away from it.  Many people don't have much pain from it because they have good doctors and nurses who use the right equipment and are sympathetic and nice.  That particular doctor tried to tell me he didn't even think I had IC, when clearly I do, based on my symptoms and even what the pictures of my bladder looked like.  I never went to him again.  Many people struggle with going to multiple doctors before getting a correct diagnosis, and for some, a cystoscopy can be what finally confirms what they've been feeling all along -- that they have IC.   So please don't take my story and not have a cysto just because of that.  Everyone's experiences are different, and yours might be great! It's just another treatment option.

There are other homeopathic remedies that I do use and many people find great success using only homeopathic remedies.  These are the ones that I have found work the best for me.

Marshmallow root can be found both in capsule form to take as a daily supplement or in tea form to drink when you are having a flare.  I also break open the capsules and add the powder to any smoothies I make and you can't even taste the slight flavor.  Drinking the tea can help soothe your bladder and flush out any toxins, especially when you are having a bad flare, and many believe that Marshmallow root helps heal the lining of your bladder as well.  I haven't noticed any good or bad from the capsules myself, so I just keep adding them to my smoothies because I figure I can use as much help as I can get.  Many other people have wonderful results with the tea however and swear by it -- some go as far as drinking it all day, every day, and get really great results from it.

Who would have ever thought that those beautiful flowers could help us fend off a nasty cold?!  But that's just what Echinacea helps do.  Echinacea, found in a capsule for what I am using it for (be careful to get just Echinacea, not "Echinacea Goldenseal"), is a natural herb used to fight infections, especially the common cold.  As most people with IC will tell you, our bodies react very strongly to any kind of over the counter cold or flu medicine.  In my personal experience, I tried one single dose of a cough and cold medicine shortly after getting sick and within an hour of taking it, I was in an excruciating flare that lasted days.  They are very harsh on our bodies and because of that, we are basically out of luck if we get a viral based cold.  Due to the fact that we can't take any medicine for it, I do anything I can to avoid germs that would give me a cold, including avoiding contact with people I know are sick or even feel the slightest bit sick, loading up on antibacterial hand wash and soap, and strengthening my body on a daily basis with plenty of rest and antioxidant based foods (see above).  If I am starting to feel my body weaken or feel sick, I immediately start taking Echinacea.  I take one capsule in the morning and one capsule at night.  Although it can be beneficial, it can also be harmful to take too much, so I make sure that I only take one week's worth of pills at a time.  Usually after about two days of morning and night pills I feel much better and my body feels strong again, but if it's right in the middle of cold and flu season, it can take a few days longer.  Not everyone agrees that Echinacea is an effective tool for fighting off colds, but in the two and a half years I've been taking it, I have yet to get a cold or any viral based illness.

Vitamin D is something that can be found in most people's favorite mood-booster: sunshine.  Unfortunately for those of us living with chronic illness (or those of us living in the bowels of the Northeast), we don't always get to see a lot of sunlight.  Because of that, we can become Vitamin D deficient.  Being Vitamin D deficient can affect our bone strength, but it is also very detrimental to our immune system if we don't have enough in our bodies.  Your doctor can order a blood test to determine if you are Vitamin D deficient and can then determine if you need to take a daily supplement, and what dose you need to take.  Vitamin D can be found in a soft gel in any of the IU available dosages at most pharmacies or drugstores.  I take a 5,000 IU dose every day, and when I started taking it, I noticed quite a change in my energy level and the pain in my joints.

These AZO pills (also known as pyridium) were my lifesavers when I was first experiencing my IC symptoms and while I was waiting for my Elmiron to start working.  They come in a pill form that you can buy at most drugstores and come in packs of multiple pills, usually 30 tablets.  (Be careful not to buy the ones that come with cranberry added, as cranberry is very acidic and not good for IC.)  Essentially, these pills act as a numbing agent to go through your urinary system and provide relief when you are having a flare.  As soon as you begin experiencing pain or burning, you take a few pills and some water (I typically drank as much water as I possibly could stand, sometimes up to a liter, because the more water you drink, the faster you pee and therefore the quicker the pills work) and wait for the pills to work.  I did experience some nausea and headache when taking these pills but the relief you get from the burning and peeing-shards-of-glass sensation was totally worth any headache or nausea, in my opinion.

One warning on these pills is that they turn your pee bright reddish-orange.  I'm talking.. bright.

Yes, that bright.

Don't be alarmed, you're not dying or peeing blood.  It's just the pills.  (Yeah, I freaked out the first time too.)  Make sure that you flush a few times so that it doesn't stain your toilet, and wear a pad or panty liner in your underwear that it doesn't stain those, because it WILL stain if you don't.  I promise.  The color does fade each time you pee, but the pills last about eight hours in your system (ahhhh, relief), so it takes a while.  Your doctor can write you a prescription for pyridium, which is a stronger dose of the AZO pills (I was literally buying three boxes of AZO at a time because the more you use it, the more pills you end up having to take to get relief and the dosage is pretty low) and a lot more cost effective.  The side effects of the coloring and headache/nausea are still the same, but it's better than buying the AZO boxes all the time.

IC can take over every single aspect of your life.  It can take everything away from your life that you once loved and turned every task into a miserable thing that you hate.  If you let it.  It bothers me to no end when people say "Oh, if you just stopped thinking about it, it wouldn't bother you so much."  That's not true.  That's not what I mean when I post this quote.  I post this quote as an inspiration, and as a helpful tool to use to get through a situation, not over it, because we can't just "get over" IC.  Do people really think if we could just "get over" IC we would still be sitting here suffering from it?!  Anyway.. I think about this a lot when I'm lying in bed, feeling like I sort of maybe have to pee.  The more I think about it, wondering if I should get up, the more I feel like I have to go.  The slightest twinge of IC tapping me on the bladder ends up turning into the IC Monster banging on my bladder, using my ureters for cymbals, yelling at me that I have to go.  So, sighing, I throw back my covers and get out of my warm cocoon, shuffle to the bathroom and pee... 2 ounces.  Now my bladder is burning, I feel like crying, and I'm miserable.

This is where this quote comes in.  Can we control our IC?  No.  But, instead of thinking about my pee like I used to and ending up in a pain cycle, I don't.  It takes a lot of practice, believe me.  But now, when I feel that twinge I think, "well, if I have to go, I'll wake up in a few hours with the urge and then I'll go."  It sounds so simple and easy... Right?  We all know that it's not.  Because thinking through a situation where you feel like if you don't go then you'll pee your pants is not an easy thing to do.  But I have taught myself to do it by thinking mind over matter.  This IC will not control me.  I will not let it get me out of bed to pee, when I know that in doing so, it will feel like flames shooting out and I will cry and be miserable.  No.  I will deep breathe, I will read, I will do my best to ignore it, and if I still have to go when I wake up in a few hours, I will go.... And guess what?  Almost every time, I pee more than a few ounces, it doesn't hurt, and I can get right back to sleep.  You can do it.

This is something I struggled with for a long time and something I know a lot of you struggle with, especially those of you that are moms.  When we feel like IC has robbed us of so much already, the last thing we want to do is let it take away our sense of pride in the things that we use to identify ourselves as a person -- mom, worker, wife.  We hate to admit that we can't do something anymore, we can't work, we can't play like we used to.  They are hard, bitter, terrible pills to swallow.  I've been there and I still struggle with it day to day.  Nobody likes to admit they can't do something.  But our bodies can't heal unless they get adequate rest, and denying your body rest doesn't help anyone else in the long run if you are only making yourself sicker.  Take care of yourself first.  It doesn't make you selfish, it means that you are taking care of yourself now so that you can take care of them later.

Blue is a soothing color, what a great choice for a bathroom.

I used to hate going to the bathroom.  All it did was remind me of how sick I was and how it seemed like I spend the majority of my life in this pitiful room.  Then I read an article online about how making your bathroom into your sanctuary actually helps you face your IC in a more positive light.  I thought it was full of crap (I mean, we are talking about a bathroom), but I did it anyways because, let's face it, I have nothing to fill my days with now.  And it worked!  Going to the bathroom doesn't seem like such a chore when you like what you're looking at it, whether it be fancy décor or pretty pictures on the walls.  Having an organized bathroom decreases your stress when you're sitting on the toilet, already stressed out.  Having nice magazines to look through distracts you and helps to relax you while you're trying to pee, as do nice-smelling candles in scents you can enjoy that you can't use in body scrubs or washes anymore.  Plush bath mats are nice to run your toes through and help your bathroom look nice and pulled together.  Give it a shot!  There are tons of ideas on Pinterest for upgrading your bathroom in inexpensive ways, and it really does make a difference.

Choose candles in scents that you used to use in the bath so you don't feel like you're missing out on so much.

Storing bathroom essentials in inexpensive clear jars from stores like Target makes your bathroom look fancy and more put-together.

The most important thing I have learned through this journey is to just breathe.  Some days I look back and it feels like just yesterday that I was diagnosed, and some days it feels like I've been dealing with this for ten years.  I still struggle with all the same issues that you do, no matter what stage of the journey you're in.  Some I have learned to deal with better, and some I still just can't wrap my head around (work is probably the worst).  There is a reason that this disease is placed on the same level of those suffering with cancer of kidney dialysis -- it cripples our life in so many ways and takes over our minds.  I have good days and bad days and I certainly don't know everything, but I hope that you learned some things from reading this post that you didn't know before.  All we can hope is that by banding together, we can learn from each other and improve our quality of life so that we have more good days than bad.  Having September be IC Awareness Month is a great place to start, but we need to keep educating people on what IC is an how it affects us so that we reach out to more and more people and help them understand what we go through.  And hopefully one day there will be a cure for us and I can delete this post!  :)

Please leave any thoughts or comments you have about anything, but especially about your IC journey and how you deal with it.  I would love any new ideas or what you think of the ones I have talked about here. I hope to hear from you!


  1. Inspirational blog, it's a shame you have that condition it really does suck, your blog should be more noticed as it's really helpful!

    1. Thank you so much! I really appreciate that. :)


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