Interstitial Cystitis

Many of you (those who happen to still stop by and read this anyway) have probably never heard of this disease. It's a disease of the bladder, affecting the lining.
In simple terms, imagine your bladder as a balloon. The smaller it is (empty), the thicker the balloon. As it fills, the rubber balloon gets thinner. Now, imagine the rubber of the empty balloon being very thin. When it fills up it gets even thinner and tears, allowing air (urine) to permeate through and into the bladder walls. This causes severe pain, especially when the urine is extremely acidic. Think salt on open wound! After a few years of this, the balloon (bladder) doesn't know what it feels like to be full anymore because it's not allowed more than a little teeny tiny bit of contents before being emptied due to the pain caused by the stretching as it fills. So anytime it begins to fill, it must be emptied right away or cause pain. And if it fills too much, causing pain all the while, and isn't emptied, the knot that holds the balloon closed will not be able to hold itself because the pain is so unbearable and the balloon can't hold any more!
Paint a good enough picture?! haha

This is what Josh goes through every single day. Supposedly, his back pain is not associated with IC but his back pain gets worse when he's held it or is having a 'flare up' (caused by something he ate, not getting to a bathroom fast enough, etc). But his back pain has been so bad that it's sent him to the ground, curled in the fetal position on many occasions!

The frequency and urgency is something we've learned to cope with after nearly 3 years of dealing with it. Think of life with a potty training toddler - always having to know where the bathrooms are and being able to drop everything to go. That is our life. I say OUR because except for his time at work, we are all affected by this. Road trips take almost twice as long. Our diets are affected (low acid). I can't be gone for extended periods of time with the kids at home because if Liam gets fussy and Josh has got to go, he can't with the stress of baby crying in the background. Crowded places where there is a chance of there being a line for the bathroom (like Zoo Boo), he can't go. Going for a walk with me, nope.
It affects a lot more than people initially realize.

What is worse is this disease primarily affects women! Granted, many cases aren't confirmed by a cystoscopy, so it's hard to get REAL numbers, but only 10% of all cases affect men. IC is a disease of exclusion. They have to rule out bladder cancer, bacterial infections (UTI), prostatitis, prostate cancer, etc. and can usually be confirmed by distending (filling up the bladder to max capacity) and looking for blood vessels popping (due to that thin lining) and/or Hunners ulcers. Josh has had this done FOUR times and we've heard things like "There was A LOT of blood!", "You most definitely have IC...I've never seen that much blood" and "No denying it's IC". Every time he's had this procedure done, it helps his frequency/urgency symptoms temporarily but send his back pain through the roof! Three of the four cysto's were done while he was in the Navy, first to diagnose his problem and two more times to confirm it (the third done at the Naval hosp in Pensacola. Apparently, the two civilian doctors weren't good enough?). Fourth was done by the VA because they needed their own I guess. So yeah, there is no denying that he has Interstital Cystitis.

The problem is nobody know what causes it. Not knowing what causes it makes it hard to fix it. There are a lot of theories out there and lots of drugs to take. Josh has tried them all. Well, except the one they just prescribed him because it's not intended for long term use and is potentially carcinogenic (cancer causing). We've found the diet does help - avoiding tomatoes and pasta (which SUCKS for me!), coffee, pineapple, spicy foods, etc. But like I said, the frequency and urgency, we've learned to deal with. It's a major inconvenience and has led to some major changes in our lives but it's dealt with. It affects Josh and his work, not being able to get too involved in a project knowing his concentration will be broken every 20-40 minutes (give or take) to take a potty break! But it's the back pain that nobody knows anything about. Don't know where it's coming from, whats causing it, etc. They give him meds to numb the pain, block the pain...not fix the pain! Then they say they're done with the meds, afraid they're creating a junkie! Like he really wants to destroy his stomach and liver taking pain meds the rest of his life!? Ugh!
We don't just want a mask...we would like a solution!!!
We don't want to just block the pain, we want his back to NOT be in pain. We want him to be able to play with Leila again...to jump on the trampoline with her...to hold Liam for more than a few seconds...to ride in an airplane...to go to the zoo with us...to sleep through the night, etc.

Unfortunately, with the economy taking a plunge, so too has research funding for rare diseases such as IC. So, we've hit a wall. Josh is left to just deal with it. He's finally taken the plunge to quit smoking, which should help. But not seeing a light at the end of the tunnel is kinda of...sucky!
We make the best of it though. We have to. We remind ourselves how fortunate we are that it's not something worse but at the same time wonder if it is (since so much is still unknown about it). It's just frustrating...for him, for all of us!