My New Normal.

Since I've crept back into the world of IC I have been asked regularly about my experience of "getting my bladder removed". It's a touchy subject and I tell different parts of my journey to different people based on where they are at in their own IC saga. However with the anniversary of the beginning of the end of my bladder's life just yesterday I thought maybe I would share my whole story.. The good and the bad, the gross and glorious, the expected and surprising... All of it.

Brace yourself.

Settle in.

Do you need some refreshments?

Okay, ready when you are....

Action.

It all began on a cold, dark morning... Okay that's a little drastic. New beginning.

On December 30, 2013 what started out to be a surprisingly typical day for me ended up being a day that would forever live in infamy.... Maybe a touch too dramatic but let's leave it just for the flare...

I was headed in to the OR once again.. for my 26th surgery. They were going to do a hydrodistention (stretch my bladder by filling it as full as possible with water), inject my bladder with a whole bunch of botox (to keep things tight to help with incontinence), laser off any new hunners ulcers, and remove my two interstims (neurostimulators that were placed in my low back to theoretically help my bladder's dysfunction but hadn't been working for a long time).

It started like any other surgery day... Get to the hospital at 0 dark 30 (I have no idea what that phrase means...), change into a gown, answer a billion questions, confirm my identity and allergies, get an IV in my ridiculously hard veins that have been used and abused over the years, settle into the pre-op bed and then wait for the flurry of nurses and doctors to come get me when they were ready... 

However when the anesthesiologist showed up I could tell something was off... She glanced at my chart, acknowledged my warning about predictable post-op nausea and vomiting then declared I would not be having general anesthetic. She was going to give me a spinal and put me in a "twilight"... I was very concerned.

As a general rule I don't like change... Especially when it comes to certain traumatic topics. One of these such moments came years before when I was actually having one of my interstims revised... The anesthesiologist used a similar technique with this suspicious "twilight" except when I woke up in the recovery room, I remembered so much of what had happened to me in that cold, white room. I remember the feel and smells of my body being sliced open as my doctors casually chatted, I remember them searching for the right spot for my interstim lead to go, I remember my doctor asking what time it was then saying something like "well this will just have to do...", I remember crying, screaming, reaching out for someone to hold my hand... Then it was all dark again...

So needless to say I really just wanted them to fully knock me out this time... I didn't care if they did it road runner style and dropped a bolder on my head, I did not want to remember a single thing.

But on this day in December this young anesthesiologist had something to prove. So despite talking directly to my urologist, the surgeon preforming the surgery, and my desperate pleas... She decided to give me a spinal and some light sedation.

Well... The surgery went fine however after I woke up I was unable to empty my bladder, like at all! Not even a drop. They scanned my bladder and it had over a liter of urine stuck inside but no matter what I did I couldn't get it out.

I was never able to urinate on my own ever again.

I don't know the reason... Maybe it was just a coincidence, maybe too much botox, maybe the spinal, or maybe it was from removing the interstims... I don't know. No one knows.

My urologist and I spent 3 brutal months trying to patch up my bladder to at least the level it had been before that fateful day in December but it was to no avail. It got to the point where I wasn't just fighting for my bladder to work again... I was fighting for my life.

The various substitutions for urinating as God intended were each more horrible than the last... Feel free to read some of my blogs I wrote at the time... 

http://how-ic-it.blogspot.com/2014/01/diary-of-mad-ic-patient.html

http://how-ic-it.blogspot.com/2014/01/hell-cath-not-fury-like-ic-patient.html

http://how-ic-it.blogspot.com/2014/02/super-pubic-to-rescue.html

My beloved urologist who had been by my side since almost the beginning didn't know what else to do for me. My bladder was essentially a dead, useless organ inside a healthy body waiting to live. The only possible option I had left was to remove the diseased sack that had been torturing me for most of my life.

There was no begging, no convincing, no proving, no contemplation... It needed to be taken out before it took me out. 

So I went to the premier oncology urologist in the state at the University of Washington. He told me he did not do diversions at all, they were far too risky, he took bladders out he did not make new ones. He did some research, talked to my urologist, sent me to some other specialists and then he agreed. We had to remove my bladder and my urethra.

In technical terms I had a radical cystectomy with an ileal conduit. He was able to do it robotically through a few small incisions and then a little bit bigger one in the shape of a hook around my belly button that he actually pulled my bladder out of. The doctor couldn't believe how horrible it looked once they got it out, it was truly ruined and diseased and did not belong inside of me anymore.

Once they removed it they needed to create a new way for my body to release urine... So they created a little extension that went straight out of my low abdomen using a piece of small intestines... 

These charts really helped me understand things... I had it done to me and I still can't explain it very well... 

Typical Urinary Tract

Typical Small Intestines 

My new urinary tract. Kidneys, ureters, then ileal conduit, then stoma. 

The recovery was brutal. Here are some of the blogs I wrote during that time...

http://how-ic-it.blogspot.com/2014/06/oh-horror.html
http://how-ic-it.blogspot.com/2014/06/carry-on-baggage.html
http://how-ic-it.blogspot.com/2014/06/i-found-hope.html

As the months passed I grew more frustrated by the debilitating abdominal pain I was still having. Everyone blamed it on surgery side effects but my small town physicians assistant had the wisdom to send me to get a CT scan just to be sure... They found a major obstruction in my small intestines where they borrowed the piece for the conduit.

I spent the next 10 days sicker and in more pain than I had ever been in my life. The blockage was so severe that I was actually vomiting poop because it had no where else to go. They jammed a tube down my nose and into my stomach that was constantly sucking up waste but it couldn't keep up. They put me on strict "bowel rest" which meant no food or water and constant draining from the NG tube until the blockage cleared. The tube was unbelievably uncomfortable and make it impossible to speak or even swallow.

But finally it worked and the blockage was cleared.

However little did we know at the time, we had just fixed the symptoms not the greater problem.

Months later thanks to a no nonsense, straight forward, yet completely lovely and kind surgeon they found a stricture in my small intestines. Which basically means that when they took that piece of intestines out then restitched it back together, they did it too tight so there was a narrowing that things kept getting stuck in.

So in January... A year after this nightmare began they sent me back to the OR and opened me up with a mid line incision (from above my belly button down to my bikini line) and they untangled my gnarled intestines, cut out the narrowed area and then repaired it so it was wide enough for things to easily pass through.

Almost the full incisions after the stitches were removed...

That was another hard recovery.. I was taking around 20 morphine a day and I was still barely functioning from the pain. Eventually, thanks to an awesome pain management, post-op, and physical therapy team I got off the meds and was finally on track for a healthy life!

Then that frilly, dreamy, healthy life came to a screeching halt as nausea, pain and other weird symptoms starting showing up fast and furiously. It didn't take long to find out I had a UTI  (yes you can still get a UTI without a bladder...) that turned into a nasty case of nephritis aka a kidney infection. It took weeks, so many rounds of trial and error, dozens of doctors, several antibiotics, two hospital stays and some out of the box methods to finally tame the infection. 

While I was in the hospital I had some fancy shmancy infectious disease doctor that everyone treated like some world renowned king of the doctors but the only thing royal about him was his jerkiness (I'm so good at insults). He was sure that I was either a drug seeker or a crazy person who was desperate for attention or perhaps it was all in my head. Don't worry... He documented that in my charts. Helpful.

Thankfully, once again my dear physicians assistant saw past the malarkey and trusted me enough to dig deeper into the issue. Dr. McEnroe (the super mean ID doctor's name was similar but I called him that because of the infamously sassy tennis player) was so sure I was wrong about my infection that he took me off of all antibiotics so when my PA tested my urine he actually found out I had two kinds of bacteria in my urine. The problem had been that they would test my urine and it would show e-coli so they would put me on the antibiotic for that but then when it wouldn't get better they would test it again and they would find the enterbacter bacteria and change my antibiotic. Round and a round we would go... Never fully killing the infection before changing to the other antibiotic. So actually if it hadn't been for that dipstick doctor who knows how long it would have taken to figure this out. A blessing in a very good disguise.

My PA put me on two kinds of antibiotics at the same time (one of which I am allergic to and am forced to take Benadryl with to keep from getting covered in hives but it's the only one that works) and FINALLY I felt better! Like totally fine! My PA wanted to check my urine just to see so I happily dropped off what I thought was a perfectly clear urine sample (it didn't smell, didn't have any gross chunks floating around, and was even a lovely light yellow color) but just a few days later I got a call from the nurse telling me that my urine came back positive for bacteria.

I was so confused and frustrated. What in the world did that mean?!? Thankfully I got in to see my PA and he explained things to me... When they introduced the piece of intestines into my urinary tract (the ileal conduit, refer to the chart above) they also introduced bacteria into a usually sterile system (your digestive tract is not sterile while your urinary tract is). So for some reason a whole colony of bacteria decided to take up residence inside my crazy, redneck modified urinary tract. He said this was actually okay and I could live with these bacteria in there as long as they just remained calm and didn't turn into infections.

This is pretty much what I asked him... "So is it like hobos? Like we acknowledge that no matter what we do they are going to be around so we might as well give them a tent city and as long as they live peacefully they're welcome to stay? Controlled chaos basically?" He paused for a moment then in a very respectful way said something like "I don't think I would have ever put it like that but I guess you could say that. Sure."

Good. I had a whole tent city of bacteria and as long as they were happy, I was happy.

They kept their end of the bargain for about two months but then my maintenance of their little village started getting a little lax. They didn't care that it was December and I was busy... They needed rest, hydration and low stress to keep their little society functioning! After a few weeks of not having their demands met they went into full on protesting riots.

In other words. Those happy bacteria multiplied and got serious causing a big time infection. Thankfully we had a plan. After 3 days of serious symptoms I went straight to the pharmacy and picked up the two antibiotics that had neutralized the infection before. After a few days of rest, water, and the almighty antibiotics I started feeling better! Phew! The bacteria tucked themselves back into the confines and all was right in the world of my urinary tract.

Of course nothing worth writing about ends that easily... As instructed I was going to finish my full round of antibiotics even though I was feeling much better. So one night I took my fistful of meds including the antibitoics, Benadryl and my nightly Phenergan to calm my ever present nausea. The next morning I woke up feeling a little tense and my throat felt tight. I assumed it was because of the allergy to the antibiotic so I took another dose of Benadryl as well as another Phenergan.

I thought I would take a nice little nap and wake up just fine so my Mom took my son to school and then was having brunch with a friend when all of a sudden the tension made my toes curl then moved up to my calf muscles and continued until it reached my neck. The next thing I knew every single muscle in my body was clenching and contorting. I had zero control of my body as my head and shoulders thrashed from side to side, my back arched, my legs tucked under me. I picked up my phone with my fingers tensing and releasing like spider legs and clumsily dialed 9-1-1. I calmly told them I was having an allergic reaction. I hung up then called my Mom telling her the ambulance was on it's way.

I had what's called a Dystonic reaction which is kind of like a mix between a seizure and a bad episode of Parkinson's Disease. After a shot from the epi pen, loads of Benadryl, steroids, tons of muscle relaxers and an overnight stay in the hospital to make sure my vitals went back to normal I was released from the hospital with the thought that I was now dangerously allergic to the antibiotic and to not take it again. I asked numerous times if they were sure it wasn't a reaction to phenergan because I had had the exact same reaction to 2 other antinausea medications before but the doctors were insistent. 

I was tense and sore from the hours of thrashing like a beached shark but I mustered up the energy to go to a sing-a-long version of "White Christmas" with some of my favorite ladies then I got home and took my nightly Phenergan and benadryl.

The next morning after the benadryl wore off but the phenergan hadn't the reaction started all over again. This time my Mom and my sweet, terrified baby boy were home to witness it. We went through the exact same motions except this time the ER doctor agreed that it was the Phenergan not the antibiotic. He saw the desperation and experience in my eyes and lovingly sent me home with an anti-seizure med and high dose of valium to continue to take around the clock until the spasms stopped.

The medicine made me crazy but sure enough after the Phenergan was out of my system the spasms stopped and I was back to normal! After it was all over I told my husband I wished I had video of myself during the dystonic reaction and he shook his head and told me I did not want to see that. He said it was like something out of "The Exorcist" and was terrifying to see. After thinking about it I do remember being between "episodes" and my muscles were shaking from sheer exhaustion and I panted as I saw the fear in my Mom's eyes...  Then it would start again so they would inject me with a shot of something and it would stop again... Thankfully I don't remember too much more than that.

Things went back to normal eventually, of course that only lasted a couple weeks... Those pesky homeless bacteria noticed that they didn't get the full anti-riot treatment (because they had me stop them in the hospital when they thought that was causing the reaction) and they weren't having their high demands met so they started up again.

That leads me to today. On day 3 of a really bad version of the same old infection. Flank and abdominal pain, exhaustion, nausea and vomiting (I miss you so much dear Phenergan), the urge to pee (I know it doesn't make sense...), and the rancid smelling and looking urine. I just started the antibiotics and hopefully after a few days of copious amounts of water, rest, and the antibiotics I will be back on track.

In the meantime I'm missing out on family time at the cabin for New Years... I can't believe this whole thing, when my IC went from chronic to life threatening, started 2 years ago! I can't believe that this is the life I lead now... Pampering and maintaining a village of bacteria, always in fear of them flipping out and disrupting my life with infection mode.

Maybe some day we will figure out a better way... Maybe we won't. Some days I can find the thankfulness for the good days that are so much better than the bad ones I've had over the last 2 years. Some days I am just angry. Some days I am scared that eventually these bacteria will stop responding to these antibiotics and the infection will go full blown untreatable nephritis causing kidney failure and who knows what else... Some days I'm just happy to have made it through so much already and still smile every day.   

This is how things look now... I've gained weight who knows why, my incision has healed but is still tender and red, and I always have a bag of pee hanging off of me... (This is nice, uninfected pee by the way!)

                                     

While I was in the hospital for the last dystonic reaction, my body forced me into a tiny ball of tense muscles the nurses took turns stabbing me with shots because they couldn't get an IV in and one of the nurses told me "you can do this. You have gone through so much worse. This is nothing. You are strong. You are a fighter. Keep smiling. Keep laughing." Then she made me tell her about my miraculous, blessing of a son while I fought for control of my tongue that was trying to fold back into my throat. It worked. Well it may have been the innumerable shots into my legs, bottom and arms but either way I got through it. Just like I always do.

This is my life now. I will say it again... It's not better than IC, it's just different. It's scarier and worse when it's bad but it's also better when it's good. I hope I can calm the resident bacteria soon enough to enjoy some family time on this special weekend.

Here's to 2016 and whatever it brings... 

10 things people with IC want you to know!

We moved a few months ago and we've had to had the pleasure of meeting a bunch of new people. It's always so awkward for me because my illness and pain are so much a part of my life but it's all a little too much info for a first introduction… So I do the modest, polite thing and wait until our 2nd meeting. 

Then I started to get to know people better and they must have confused me for someone else or maybe nodded off while I was rambling on and on about the inner workings of my new urinary tract because they actually wanted to get to know me and even become friends. It's very strange. I'm thinking maybe I should write a letter to the mayor about getting the water tested here...

Anyway. These new friends of mine have been wonderful! So loving and accepting of all my weird things- physically and personally. However I have realized I feel the need to recite some warnings and disclaimers at the beginning of these relationships and I thought maybe other people with IC or other chronic pain/ illnesses feel the same. So rather than us constantly reading the rights to these poor, unexpecting friendly people over and over I thought I would put together a list of the 10 things we want others to know about being in any kind of relationship with us… Feel free to share and use for your own people mining. 

10. Please don't mention how we look unless it's ravishing then simply say “you look ravishing”.

Definitely do not say “wow you don't look very  good” OR EVEN “you don't look sick!” Although IC is often described as an “invisible disease” and people love to point out how not sick we look, we hate that. We push ourselves to remain cheerful amongst the highest level of pain and when people happily diminish that based on our smiling faces it makes us want to never smile again. After we punch YOU in the face. 

Look at me. In the hospital, super sick with a kidney infection smiling and throwing the V for Victory... Even though our beloved USC Trojans lost that game... 

Of course sometimes we’re exhausted and miserable making us clearly look sick, no need to point that out either. 

What a lovely example of me looking sick... And also like I murdered an entire nest of baby birds and enjoyed it. 

As far as clothes… We want to dress cute and normal but our whole entire pelvic area is so sensitive that anything even slightly tight or stiff is unbearable. Leggings becoming trendy was an exciting fashion time for those of us who feel like belted snowmen after a fresh snow storm if we wear jeans. We are pretty much left with sweats, yoga pants, leggings, and dresses. 

Don't question the level of formality based on our outfits. Ever. Sometimes we’re in so much pain that even baggy husband sweats are too much pressure and we are forced to wear dresses. No we're not going anywhere. Yes we clean up nice. We know. Thank you. On the flip side sometimes we wear sweats to a party because that's all that we can manage. We know we look like a scrub (I can't think of the last time I used that word and I'm just downright nostalgic about it now.) but just be happy we're out of bed. Thank you. 

This is me. In pajama pants with tiny martinis on them, oversized sweatshirt and my hubbys boots. At Walgreens. 

In a dress. At the river. 

Also, we rarely wear makeup or do our hair. It's hard enough to just get out of bed and maybe even, but not guaranteed, shower. Unless it's an occasion where gifts are exchanged or luxurious food is consumed don't expect much. Yes, I make most important decisions based on food alone. 

Which leads me to… 

9. Most of us with chronic illnesses, especially IC, are on strict diets. Don't push us to “splurge” or “treat ourselves”. 

We're not trying to lose weight (more on that topic next), we mean our irate bladders cannot handle any added acidity. If you truly care then take the time to study the IC diet list and memorize it but I always like to say if you wouldn't want it to drip into an open wound then we probably can't eat or drink it… Tomatoes, citrus, alcohol, spicy foods, etc… Don't take offense if we don't eat your bountifully fresh caprese salad or do a shot of tequila with you at your bachelorette party.(Some of us, including me, are exceptions to this rule but it's a big one for the majority of us!) (I mean the entire diet point not specifically the tequila…) (I feel like I didn't make this clear... After my cystectomy I was allowed to eat whatever I wanted, including but not limited to tequila.)

My first legal orange!

Oh one more thing on that topic… FOR THE LOVE OF GRAVITY PLEASE STOP TELLING US TO DRINK CRANBERRY JUICE. It not only doesn't help, it's a huge trigger for us! Thank you. 

8. We are fat, skinny, swollen, starving, sickly, plump… It's not our fault! 

We've all struggled with weight in different ways thanks to our disease. Most of the medications prescribed for IC, and other chronic conditions, have the ever frustrating side effect of weight gain and increased hunger but if we find something that helps we'd rather have thighs that look like the gelatinous goop that is carved off of a cold, fatty slab of beef stuffed into patty hose (hello visual…) than any symptom that could be otherwise controlled. We will always choose a medication that helps symptoms long before the hope of a svelte figure. Sometimes our weight gain in simply caused by being stuck in bed with only ice cream and Cheez Its as our companions. Either way. Our increased weight is not at fault for our miseries. I would strongly urge you to consider how much you would like to be tied to the back of a car and forced to run behind it before ever mentioning that exercise or weight loss might help our symptoms. We get real revengey when people say stuff they know nothing about. 

This is to simply prove how much I love you all. Ehhem... I happen to be in the weight gain side of things right now. That beef fat analogy had to come from somewhere... Oh and the ice cream and Cheez It's as your only companion might be from experience. 

On the flip side, sometimes the disease, symptoms or medications can cause us to lose weight. Of course this is typically a pleasant side effect but sometimes it just makes us look sickly and unfed. You're welcome to compliment us when we've lost a normal amount of weight but I really urge you to think about being forced fed figgy pudding like the poor Grinch before you say we've lost too much weight or we need to eat a cheeseburger. Again, revengey. 

This was when I was on the sickly side... But Titus hunting for Easter eggs and my Grandparents are adorable!

Basically our weight is like a defiant teenager that does whatever it wants and really likes extremes. We hate it. Moving on. 

7. Being sick is our full time job. 

Except we don't get lunch breaks, weekends off, or ya know… Paid. So excuse us if all we talk about is our pain and symptoms or tell tales of doctor appointments and surgeries. We don't mean to offend you with using words like urethra or regular mentions of pee. It's just like you coming home from your desk job and telling everyone about arguing with Linda from accounting over the last stack of post it notes. 

Basically everyone's face when I talk about being sick. Again.

6. We are flakeyer than a day old croissant. 

We never know how we're going to feel in advance, even 10 minutes in advance. We really want to get out of our sick box so we will make plans and more often than not we will cancel at the last minute. Don't be mad or rude about it, we'd give anything to feel up to going. Don't assume we're not pushing ourselves… just the act of making the plans was pushing ourselves. Sometimes we can manage to muster up enough energy to have you over but sometimes the idea of putting on pants and being out of our bed limiting our usage of the word urethra is too daunting. 

So sometimes all we do is this.... 

But other times we get to get out and LIVE! 

Which brings us to… 

5. Guilt is just as much of a symptom of IC, or any chronic illness, as the pain. 

No matter how much you all say you understand and just want us to take care of ourselves we feel guilty when we cancel plans. We feel guilty when people have to juggle their busy schedules so they can take care of our kids while we sleep or drive us to dr appointments when we're curled up into a ball of agony. We feel guilty when we're sleeping during the day, we feel guilty when our husbands have to work overtime just to pay rent because we can’t work, we feel guilty when our kids ask if the medicine we take will make our owies better so we can sit on the hard floor to do puzzles, we feel guilty when we push to do something fun but then are too exhausted to do chores. We feel guilty when we see our parents crying over seeing their baby so sick for the millionth time and when our kids have to watch movies in bed with us to spend time with us. I could literally make an entire blog with a never ending list of things we feel guilty for. Just so you know, you're not condemning or judging us for anything we haven't already ripped ourselves apart about. 

I'm so incredibly thankful for my Mom and how much she does for us, especially when I'm sick but I always feel guilty when I can't do things no matter how much I know that they have fun together.

Which goes along with...

4. We are not lazy, we are sick. 

We would give anything to be able to play with our kids, work at a job, clean our houses, cook for our families, help others that have helped us, be attentive spouses, do the hard work AND the fun stuff! Whether it's from sheer exhaustion, increased pain, or just too groggy and weird from necessary pain meds... We simply can't. 

We hate being stuck in bed or the bath or wherever, just miserable. We would much rather be doing something productive. Our houses are messy, our hair is unwashed, our cars are untuned… We can't do life when we're just struggling to live… Take what you can get from us. Be thankful when we do make dinner or do a load of laundry, it probably took as much energy for us as most people use up after a day of living busy life. 

The excitement when I feel good enough to not only do laundry but organize proves that it's not laziness! 

(Sorry that got a little punchy… This particular misconception really jingles my bells…) 

3. We already have doctors so we don't need one with a degree from webmd. 

We so appreciate how much you care about us and want to help find a solution. However. We're 1,000 times more desperate for answers. We've done way more research, we've read even more articles about studies and new holistic treatments, and we've probably tried them all.

Please don't claim that your brother neighbor's niece’s cat sitter struggled with our disease and is now symptom free after going on an all natural beef jerky diet. (Now that's a diet I could get behind…) 

Don't tell us to try acupuncture or ask “if they can do heart transplants why can't they do bladder transplants?” 

Nope they can't do transplants. If your IC is end stage and you have no choice but to have your bladder removed you get a bag. Full of pee. That you wear. For the rest. Of. Your. Life.

We don't need you to fix us. We just need you to love us, listen to us, support us, and hate what we have to go through. 

2. WE ARE NOT ADDICTS EVEN IF WE'RE DEPENDENT. 

We have serious pain that is regularly compared to that of a cancer patient. Our doctors determine our needs and prescribe narcotics accordingly. That should be enough said but as we all know, it's physically impossible for me to keep anything short so I'll continue...

I've never heard of an IC patient that enjoys the high of pain meds because we're using them for real pain. We hate the side effects of the drugs but find it a necessary evil to be a part of society or just to breathe normally. Most of us will trudge through the scary forest of withdrawals regularly because we refuse to take them unless they're needed. 

It's important that you understand that our bodies can become dependent and throw a grand tantrum when not fed but that doesn't mean we are addicted. Our tolerance does shift as the years and pain goes by so yes we will need to increase the dosage and it will vary dramatically. 

The excitement when I'm off of meds and feeling good... I even get to drive! 

So unless you have some good, concrete evidence that someone is abusing the drugs then assume we have it under control, we respect the drug and acknowledge its power, and we're using it as it’s meant to be used.

Most of all…

1, Unless there is a miraculous intervention or medical discovery, we will never be healed of this disease. 

I am a perfect example of this. I had crippling endometriosis and interstitial cystitis so I have my uterus, ovaries, and cervix removed then I had my bladder and urethra removed. You would probably think I am well now? You would be wrong. You can take the disease out of the body but you can't take the body out of the disease. 

There will be days when we feel good, maybe even great! Let us enjoy those days without the assumption that it means we're cured. Our pain and symptoms will vary. We may even go into remission but we will always have these diseases lurking around in hidden caves of our body waiting to strike. 

Please just love us when we're sick and love us when we're well… Don't put more pressure on us or make us feel like you would like us more if we were better. 

If all of this seems doable then welcome! Thank you for your friendship and for walking this journey with us… We will be loyal friends and incredibly grateful for your love but we will also cancel plans, talk too much when we're on meds, and show up looking as unkempt as a hobo. Thank you for reminding us we have something to offer and have worth of our own. 

Jump in! The water's fine! 

10 things people with IC want you to know!

We moved a few months ago and joined a new community group at our church so we've had to had the pleasure of meeting a bunch of new people. It's always so awkward for me because my illness and pain are so much a part of my life but it's all a little too much info for a first introduction… So I do the modest, polite thing and wait until our 2nd meeting. 

Then I started to get to know people better and they must have confused me for someone else or maybe nodded off while I was rambling on and on about the inner workings of my new urinary tract because they actually wanted to get to know me and even become friends. It's very strange. I'm thinking maybe I should write a letter to the mayor about getting the water tested here...

Anyway. These new friends of mine have been wonderful! So loving and accepting of all my weird things- physically and personally. However I have realized I feel the need to recite some warnings and disclaimers at the beginning of these relationships and I thought maybe other people with IC or other chronic pain/ illnesses feel the same. So rather than us constantly reading the rights to these poor, unexpecting friendly people over and over I thought I would put together a list of the 10 things we want others to know about being in any kind of relationship with us… Feel free to share and use for your own people mining. 

10. Please don't mention how we look unless it's ravishing then simply say “you look ravishing”.

Definitely do not say “wow you don't look very  good” OR EVEN “you don't look sick!” Although IC is often described as an “invisible disease” and people love to point out how not sick we look, we hate that. We push ourselves to remain cheerful amongst the highest level of pain and when people happily diminish that based on our smiling faces it makes us want to never smile again. After we punch YOU in the face. 

Look at me. In the hospital, super sick with a kidney infection smiling and throwing the V for Victory... Even though our beloved USC Trojans lost that game... 

Of course sometimes we’re exhausted and miserable making us clearly look sick, no need to point that out either. 

What a lovely example of me looking sick... And also like I murdered an entire nest of baby birds and enjoyed it. 

As far as clothes… We want to dress cute and normal but our whole entire pelvic area is so sensitive that anything even slightly tight or stiff is unbearable. Leggings becoming trendy was an exciting fashion time for those of us who feel like belted snowmen after a fresh snow storm if we wear jeans. We are pretty much left with sweats, yoga pants, leggings, and dresses. 

Don't question the level of formality based on our outfits. Ever. Sometimes we’re in so much pain that even baggy husband sweats are too much pressure and we are forced to wear dresses. No we're not going anywhere. Yes we clean up nice. We know. Thank you. On the flip side sometimes we wear sweats to a party because that's all that we can manage. We know we look like a scrub (I can't think of the last time I used that word and I'm just downright nostalgic about it now.) but just be happy we're out of bed. Thank you. 

This is me. In pajama pants with tiny martinis on them, oversized sweatshirt and my hubbys boots. At Walgreens. 

In a dress. At the river. 

Also, we rarely wear makeup or do our hair. It's hard enough to just get out of bed and maybe even, but not guaranteed, shower. Unless it's an occasion where gifts are exchanged or luxurious food is consumed don't expect much. Yes, I make most important decisions based on food alone. 

Which leads me to… 

9. Most of us with chronic illnesses, especially IC, are on strict diets. Don't push us to “splurge” or “treat ourselves”. 

We're not trying to lose weight (more on that topic next), we mean our irate bladders cannot handle any added acidity. If you truly care then take the time to study the IC diet list and memorize it but I always like to say if you wouldn't want it to drip into an open wound then we probably can't eat or drink it… Tomatoes, citrus, alcohol, spicy foods, etc… Don't take offense if we don't eat your bountifully fresh caprese salad or do a shot of tequila with you at your bachelorette party.(Some of us, including me, are exceptions to this rule but it's a big one for the majority of us!) (I mean the entire diet point not specifically the tequila…) (I feel like I didn't make this clear... After my cystectomy I was allowed to eat whatever I wanted, including but not limited to tequila.)

My first legal orange!

Oh one more thing on that topic… FOR THE LOVE OF GRAVITY PLEASE STOP TELLING US TO DRINK CRANBERRY JUICE. It not only doesn't help, it's a huge trigger for us! Thank you. 

8. We are fat, skinny, swollen, starving, sickly, plump… It's not our fault! 

We've all struggled with weight in different ways thanks to our disease. Most of the medications prescribed for IC, and other chronic conditions, have the ever frustrating side effect of weight gain and increased hunger but if we find something that helps we'd rather have thighs that look like the gelatinous goop that is carved off of a cold, fatty slab of beef stuffed into patty hose (hello visual…) than any symptom that could be otherwise controlled. We will always choose a medication that helps symptoms long before the hope of a svelte figure. Sometimes our weight gain in simply caused by being stuck in bed with only ice cream and Cheez Its as our companions. Either way. Our increased weight is not at fault for our miseries. I would strongly urge you to consider how much you would like to be tied to the back of a car and forced to run behind it before ever mentioning that exercise or weight loss might help our symptoms. We get real revengey when people say stuff they know nothing about. 

This is to simply prove how much I love you all. Ehhem... I happen to be in the weight gain side of things right now. That beef fat analogy had to come from somewhere... Oh and the ice cream and Cheez It's as your only companion might be from experience. 

On the flip side, sometimes the disease, symptoms or medications can cause us to lose weight. Of course this is typically a pleasant side effect but sometimes it just makes us look sickly and unfed. You're welcome to compliment us when we've lost a normal amount of weight but I really urge you to think about being forced fed figgy pudding like the poor Grinch before you say we've lost too much weight or we need to eat a cheeseburger. Again, revengey. 

This was when I was on the sickly side... But Titus hunting for Easter eggs and my Grandparents are adorable!

Basically our weight is like a defiant teenager that does whatever it wants and really likes extremes. We hate it. Moving on. 

7. Being sick is our full time job. 

Except we don't get lunch breaks, weekends off, or ya know… Paid. So excuse us if all we talk about is our pain and symptoms or tell tales of doctor appointments and surgeries. We don't mean to offend you with using words like urethra or regular mentions of pee. It's just like you coming home from your desk job and telling everyone about arguing with Linda from accounting over the last stack of post it notes. 

Basically everyone's face when I talk about being sick. Again.

6. We are flakeyer than a day old croissant. 

We never know how we're going to feel in advance, even 10 minutes in advance. We really want to get out of our sick box so we will make plans and more often than not we will cancel at the last minute. Don't be mad or rude about it, we'd give anything to feel up to going. Don't assume we're not pushing ourselves… just the act of making the plans was pushing ourselves. Sometimes we can manage to muster up enough energy to have you over but sometimes the idea of putting on pants and being out of our bed limiting our usage of the word urethra is too daunting. 

So sometimes all we do is this.... 

But other times we get to get out and LIVE! 

Which brings us to… 

5. Guilt is just as much of a symptom of IC, or any chronic illness, as the pain. 

No matter how much you all say you understand and just want us to take care of ourselves we feel guilty when we cancel plans. We feel guilty when people have to juggle their busy schedules so they can take care of our kids while we sleep or drive us to dr appointments when we're curled up into a ball of agony. We feel guilty when we're sleeping during the day, we feel guilty when our husbands have to work overtime just to pay rent because we can’t work, we feel guilty when our kids ask if the medicine we take will make our owies better so we can sit on the hard floor to do puzzles, we feel guilty when we push to do something fun but then are too exhausted to do chores. We feel guilty when we see our parents crying over seeing their baby so sick for the millionth time and when our kids have to watch movies in bed with us to spend time with us. I could literally make an entire blog with a never ending list of things we feel guilty for. Just so you know, you're not condemning or judging us for anything we haven't already ripped ourselves apart about. 

I'm so incredibly thankful for my Mom and how much she does for us, especially when I'm sick but I always feel guilty when I can't do things no matter how much I know that they have fun together.

Which goes along with...

4. We are not lazy, we are sick. 

We would give anything to be able to play with our kids, work at a job, clean our houses, cook for our families, help others that have helped us, be attentive spouses, do the hard work AND the fun stuff! Whether it's from sheer exhaustion, increased pain, or just too groggy and weird from necessary pain meds... We simply can't. 

We hate being stuck in bed or the bath or wherever, just miserable. We would much rather be doing something productive. Our houses are messy, our hair is unwashed, our cars are untuned… We can't do life when we're just struggling to live… Take what you can get from us. Be thankful when we do make dinner or do a load of laundry, it probably took as much energy for us as most people use up after a day of living busy life. 

The excitement when I feel good enough to not only do laundry but organize proves that it's not laziness! 

(Sorry that got a little punchy… This particular misconception really jingles my bells…) 

3. We already have doctors so we don't need one with a degree from webmd. 

We so appreciate how much you care about us and want to help find a solution. However. We're 1,000 times more desperate for answers. We've done way more research, we've read even more articles about studies and new holistic treatments, and we've probably tried them all.

Please don't claim that your brother neighbor's niece’s cat sitter struggled with our disease and is now symptom free after going on an all natural beef jerky diet. (Now that's a diet I could get behind…) 

Don't tell us to try acupuncture or ask “if they can do heart transplants why can't they do bladder transplants?” 

Nope they can't do transplants. If your IC is end stage and you have no choice but to have your bladder removed you get a bag. Full of pee. That you wear. For the rest. Of. Your. Life.

We don't need you to fix us. We just need you to love us, listen to us, support us, and hate what we have to go through. 

2. WE ARE NOT ADDICTS EVEN IF WE'RE DEPENDENT. 

We have serious pain that is regularly compared to that of a cancer patient. Our doctors determine our needs and prescribe narcotics accordingly. That should be enough said but as we all know, it's physically impossible for me to keep anything short so I'll continue...

I've never heard of an IC patient that enjoys the high of pain meds because we're using them for real pain. We hate the side effects of the drugs but find it a necessary evil to be a part of society or just to breathe normally. Most of us will trudge through the scary forest of withdrawals regularly because we refuse to take them unless they're needed. 

It's important that you understand that our bodies can become dependent and throw a grand tantrum when not fed but that doesn't mean we are addicted. Our tolerance does shift as the years and pain goes by so yes we will need to increase the dosage and it will vary dramatically. 

The excitement when I'm off of meds and feeling good... I even get to drive! 

So unless you have some good, concrete evidence that someone is abusing the drugs then assume we have it under control, we respect the drug and acknowledge its power, and we're using it as it’s meant to be used.

Most of all…

1, Unless there is a miraculous intervention or medical discovery, we will never be healed of this disease. 

I am a perfect example of this. I had crippling endometriosis and interstitial cystitis so I have my uterus, ovaries, and cervix removed then I had my bladder and urethra removed. You would probably think I am well now? You would be wrong. You can take the disease out of the body but you can't take the body out of the disease. 

There will be days when we feel good, maybe even great! Let us enjoy those days without the assumption that it means we're cured. Our pain and symptoms will vary. We may even go into remission but we will always have these diseases lurking around in hidden caves of our body waiting to strike. 

Please just love us when we're sick and love us when we're well… Don't put more pressure on us or make us feel like you would like us more if we were better. 

If all of this seems doable then welcome! Thank you for your friendship and for walking this journey with us… We will be loyal friends and incredibly grateful for your love but we will also cancel plans, talk too much when we're on meds, and show up looking as unkempt as a hobo. Thank you for reminding us we have something to offer and have worth of our own. 

Jump in! The water's fine! 

Better.

What does the word better mean to you? The first two things I think of is Doc McStuffins and that weird wannabe butter stuff. Let us dissect that...

My kid has a disabled mom so we watch cartoons slightly more often than I would prefer but we try to pick educational shows and pat ourselves on the back when he spouts out the difference between a crocodile and an alligator or the definition of empathy. I've seen them all so many times that now I delve further into episodes and create deeper plots within plots. I have some written down... In Daniel Tiger I'm pretty sure X the Owl and Mrs. Pussycat are having an affair... Opposites attract, living in the same tree, single parents... I get it. Then in paw patrol, what's up with Alex? Where are his parents? I think if they were around more he wouldn't be making such poor choices all the time. Of course there is the age old questions about Mickey Mouse, why is Pluto like a real dog and Goofy can speak and wear clothes? Speaking of which... Why doesn't Donald Duck wear pants unless he's swimming? 

Doc McStuffins is kind of a mystery to me. Admittedly my child has an extreme aversion to "girly" things which would include Doc McStuffins in his mind so I haven't had time to analyze it fully, I'm sure there is some hidden plot in there somewhere. 

For those of you who don't have tiny humans controlling the remote, Doc McStuffins is a little girl who fixes toys... At the end she and the speaking toys (obviously) sing a song that goes "I feel better, so much better, thank you doc for taking all my ouchies away, I didn't feel so good until you fixed me up like I knew that you would." It's catchy. Anyway. She fixes the toys and they're better... Moving on. 

If you know me you know I love to cook and I love to eat. Both of which I love to do with butter. Real butter! Don't even try to give me margarine or any cheap oil based "replacement". Ew. I would rather have no butter than fake butter... Any time "butter" comes in a tub it's not butter and it's definitely not better than butter. The only, and I mean the ONLY, thing that's even worth mentioning about it is that it spreads nicely even if it's been in the fridge. 

So there is 1 teeny advantage of this suspicious substitute. It spreads while cold. Whoop de doo. Now... If someone on team butter replacement and I were debating which is better they would have 1 valid point. In one way it is slightly better but then I would rebuttals that if left out for just a while or even microwaved for a few seconds butter is also spreadable. It's also more delicious. Which always wins. 

So would the butter judge think that the one slight advantage is worthy of considering? I like to think not, but that weird guy that apparently spends his life defending butter replacements could still walk away saying that his weird non-solid, non-liquid substance is better than butter. Without me there advocating for the pure delight that is butter maybe he could convince those that are uninformed and undecided. 

He would be right. It is "better" than butter in one relatively inconsequential way so he could just say it's better without specifying it's only better in one way or talking about all the ways it's simply not better. 

Now that I've gone down a dark trail of distraction... Which was not the first or last time that will happen about butter... Let me get to my point. 

My UTI/ kidney infection is gone! Hooray! Also, I'm completely off pain meds! Hooray! Both are huge feats and way more exciting than straight out of the fridge spreadability. 

However... I'm still not better. I mean I'm better in two huge categories but you don't just get "better" in a couple weeks after being sick for most of your life. So I guess that's the question if the word better means you're doing less worse than you were or if it means you're totally normal now. I don't know. 

Here's what I do know.... I was able to drive myself to target the other day! But I was so weak and dizzy that I almost passed out in the baking isle. I was able to go to church and have my whole family over but I was so sore and exhausted for days. Each day has it progress and its setbacks. I am completely off narcotics once again but the withdrawals were heavy and thick for days. 

My muscles are very angry with me... My heart and mind are telling me I'm feeling "better" so I should get up and do life but then my muscles are like whoa where's the hurry?! I'm also exhausted all the time, no matter how much I sleep. Which reminds me, my sleep schedule is still all wonky from having to wake up super early in the morning to take meds. 

I would say worst of all my stomach is still so cranky! I don't know why! I really don't... Tuesday I was debilitatingly nauseated all day. My nausea patch had worn off so maybe it was that but it was not a good day, I didn't feel better. It just felt different than the last issue.  I'm also still having sweat inducing cramping and all over abdominal pain. 

Also. Have I mentioned I have a hernia under my biggest incision? So far nothing important has been trapped in there so we're just leaving it alone but it hurts when I use the muscles in that area to sit up or whatever.

  Aren't you glad you chose to read this?

So to answer the burning question... Yes, I feel better but still far from best. God has, and continues to, bless my family and me abundantly amidst the most tumultuous trials and tribulations but I'm still sick. I have a Urostomy, my body has been severely deconditioned, I have a very short ileum, and I've been sick for 15 years. Antibiotics are great but not magic... I still have some issues. 

However, I think God planted a seed of acceptance and I've started to accept that this is my life, some day it may change but for now we forge on with the idea that my body won't be well and perfect until it's renewed in Heaven. 

If you're a friend or family please be patient with me and understand that "better" is a lot different than "well". If you're an IC'er, empower yourself to be honest when people genuinely ask how you are and explain that even when you're doing better IC will never be gone. Lastly... Don't forget that I had my bladder removed and I'm still struggling with so many things. Please don't consider a cystectomy as an easy out! 

In other news... Happy Halloween from the Jovanovich Family! (Another example of excellent TV education, Wild Kratts and panda power!)

                       Panda Power!!

                      Our inspiration. 

Hostile Hospital

You'd think I'd be used to being in the hospital considering I can't even calculate how many days I've spent there, especially throughout the last 2 years... But I'm not used to it, I hope I never get used to it. 

Some experiences have been better than others but none have been great. I've realized it's more like being locked in a pastel painted prison than it is like staying in a sterile hotel room. 

The doctor is the warden and the nurses are his correctional officers. There are some gems out there that really do care and take the time to make their patients feel as such but for the most part they tend to take the easy road of no compassion. It's easier to pretend like the patients are just their assignments, not real people whose lives matter. So they dole out instructions and are quick to share their judgement on your choices all while leaving a sense of superiority in their wake. 

As a patient I have become a dependent of "the system". I'm told what and when to eat, when to shower, how much I need to walk, how much I should drink, what medications to take and what dosage, and even what to wear! They test my body as if they're searching for signs of drugs in my system.They document my every move, I'm known by my patient number and date of birth, and openly talked about like I'm a project to handoff at shift change. They poke and prod me thoroughly as if they're searched for contraband while asking if it hurts. Why yes, yes it does!  To complete the juxtaposition of feeling like an inmate working for my prison guard they put an alarm on my bed because they didn't want me walking around without assistance while my blood pressure was low.

However! None of that compares to the interrogation... I'm not sure if there truly are people out there who go to extensive lengths to try to convince doctors that they're horribly ill and in need of the doctors self proclaimed precious attention! I can't speak for those whack jobs but I can tell you that the LAST thing I want to be doing right now is lying in a hospital bed, draped in overly starchy sheets, exhausted from being woken up all night, full of compliance insuring drugs and missing my family and my life. So when they treat me like they're going to catch me in a lie and find out that I am actually healthy my blood starts to simmer. 

They all ask the same questions over and over, they clarify past test results, list the symptoms that I'm lacking, belittle the symptoms I do have, and question my misleading chipper attitude. 

Then they bumble around trying to find a reason to pawn me off on another doctor... Who then starts the process all over again. 

I spent 5 days in the hospital last week and I was worked over and over. The whole reason I went there to begin with was as directed by my doctors to get some IV antibiotics and smash this kidney infection that I've been battling for the good part of 2 months. 

After the hospital doctor tried and failed to find an antibiotic that would work he called in some pretentious infectious disease doctor who declared that not only was I not allergic to most of the meds on my allergy list I also did not have a kidney infection... Despite the white blood cells and bacteria in my urine, the extreme pain and nausea, the rank smelling urine and feeling just overwhelmingly sick. 

       My sad hives from the medicine I was clearly not allergic to... 

His basis of this conclusion was that when he thumped around my back it was painful in a broader area than just where my kidney was and because the antibiotics weren't working. He was very clear that that was his conclusion and I should trust it and move on. 

So there I sat. In so much pain and incredibly nauseous, with no antibiotics or other treatment plans underway. They were treating my symptoms but with the same meds I had at home... 

I spent most of my time resting, analyzing my symptoms, venting and complaining that I was in a hospital that only has UNsalted saltines... I pretty much concluded that only a moron who hated life and wanted others to be miserable as well would have created an unsalted saltine. It's textbook sadistic narcissist behavior! Why would they do that to the much beloved food mascot of hospitals worldwide?. I think it slanders the honorable title of the saltine because truly what is a saltine without salt

Anyway! After a 5 days in the hospital the doctor declared there was nothing more he could do for me and to follow up with my pain management doctor. I gave up, I surrendered to the system. They said I wasn't sick and they didn't want to deal with me anymore so I was vanquished. 

I have to tell you... I was in a real dark place there for a while. Being so miserable and then blatantly told that there's nothing wrong with you is just about the most confusing thing. I was humiliated and angry, I was questioning myself, I was so incredibly discouraged.

I just laid in my bed for a couple days in so much physical and emotional strife. One minute I was so scared that this was going to be my new norm. Then I was afraid that maybe I was so stuck in a world where everything was acute that I mistook the symptoms for something more severe. Minutes later I would be overwhelmingly angry that I was doubting myself. Then I would yell at my beloved family. Then I would cry. 

I had never been so miserable with absolutely no reason why and no possible treatment, I couldn't accept it. So I decided to go to my primary care PA. He knew me, he had treated me for bad infections in the past. 

I was surprisingly nervous as I waited to see him but the moment he came in and started talking I knew he was on my side and that's all I cared about. 

He had read the reports from the hospital which blatantly said it was either all in my head or I was just there for drugs. That crushed me for a minute. I felt the red hot sear of humiliation and anger. 

Thankfully he knows me well enough to know that's just hooey! He also looked at my urine culture, which the hospital doctors didn't even bother to read because they thought it wasn't valid for someone who has an ileal conduit (a piece of intestines as a part of the urinary tract), and discovered I actually had two kinds of bacteria in there! 

So what had been happening was that I would get my urine tested then they would start me on one antibiotic which would kill the one bug then when I wasn't getting better they would test it again and see another kind of bug so they would stop the original antibiotic and start me on a new one... They went back and forth for 2 months never finding both kinds of bacteria at the same time! 

So when that dipstick infectious disease doctor was so sure that it wasn't an infection and took me off all antibiotics my urine test finally showed both bugs!!! 

My amazing pcp felt sure that a big round of a mix of two kinds of antibiotics would do the trick! Of course I'm allergic to one of them so I have to take Benadryl and I'm drowsy but what's 10 days of sleepiness if it means healing! 

I'm only in the middle of day 3 of this course of antibiotics and so far I'm just feeling the tummy troubles of taking a bucket full of antibiotics but I should start seeing a difference soon!! 

If not, there is a plan b... An aggressive round of antibiotics that would be a shot a day for a week which are apparently pretty unpleasant. 

Then after I'm feeling better and I finish either treatments he wants to test my urine again and if it's negative for bacteria then we will know we can trust cultures in the future, if it's positive we will know to trust my symptoms. 

Sheesh... What an ordeal! I'm so thankful to be on this side of things... I don't think anything has ever affected me quite so fiercely emotionally. I was in a really dark place for a few days... 

So my advice for the day... When in doubt, trust your instinct and get a second, third or fourth opinion until someone at least respects and acknowledges you and what you're going through. 

Oh and to end on a happy note... I just got our family photos that we did a month ago and isn't my child one of the most adorable creatures that ever lived?! (Oh and... Isn't it impressive how healthy I can look when I'm so sick!)