My Angry Bladder, Part One

Well, I’ve procrastinated writing anything else after my last posting, because what do you follow up your blessings with? I couldn’t think of anything that sounded as great as what I am thankful for, but today by bladder is in spasm and it really hurts, so I’m going to write about that (lucky you, my dear reader!).

Interstitial Cystitis, which is one of my many diagnoses, means that I have one very angry bladder. While no one knows exactly what causes this problem, or the best way to treat it (I’m sooo comforted my these realities!), the current theory is that IC is a wearing down, or eroding of the bladder’s protective lining over time. This possibly allows the very acidic urine to come in contact with or aggravate surrounding nerves which are used to being shielded from this abuse by the bladder’s protective liner. The nerve aggravation is believed to cause incredible irritation to the bladder and possibly surrounding areas, leaving the IC patient in sometimes excruciating pain, with frequent and incredibly strong urges to urinate. Some IC patients urinate over 50 times a day!! Prior to treatment, I was probably averaging 20 times a day, which really interferes with one’s life since I am peeing almost once an hour every day! Right now, I average 13-15 times a day, which is still far higher than the normal bladder’s voiding 5-7 times a day.

While Dr. E doesn’t know how this problem began for me, I strongly suspect that it has roots in my childhood. When I was a kid, we had two bathrooms, one in my parent’s room and one downstairs. I learned very quickly that it was a horrible idea to wake my dad up and it was a long, scary walk downstairs at night. This meant I often held my need to pee all night, or all night until I wet the bed (which I did until an age far older than I care to admit). This stress on my bladder, along with other traumas and life events, as well as the endless mantras to “hold it just a little bit longer” and road trips where I forced myself to hold my urine for hours longer than I should have, are probably strong contenders in the reasons why I now have IC, and may possibly have it for the rest of my life.

In Dr. E.’s opinion, it was most important and most practical to start treating my Interstitial Cystitis right away since he could treat me in his office at a reduced rate while we waited to see if I would be able to afford any other forms of medicine and physical therapy. He also thought this was the most important issue to address because I have likely had untreated bladder problems since I was at least 5 years young and 27 years of an untreated problem is a tremendously long time to be ignored!

I chose today to write about this because apparently my bladder is in currently in spasm, the nurse may have used another word for what is happening, but that is what my bladder feels like to me! The current cause of the bladder spasms, which started three days ago, are probably the weekly bladder instillations I’ve been getting since November 4th.

If you’ve never had a bladder instillation, or treatment as they call them at my mom’s place, you are really missing out in life! In addition to all the medication I take, once a week, for at least nine weeks, I get my bladder pumped full of medicine too. Now, there are only a few ways to get medicine into one’s bladder, and I do two of those ways, one of which is by orally taking medication. The other way of getting medicine into my bladder is far less pleasant!

A bladder instillation, in Dr. E’s office consists of meeting with a nurse once a week. At the beginning of my appointment she asks me how I am doing, triages any problems that I am having and adjusts, changes or adds any medications as needed and tries to answer my plethora of questions. Either before or after this discussion, I go to the bathroom in an attempt to empty my bladder, even though I’ve already peed less than 40 minutes ago before I left my house. At some point the nurse leaves the room and I get half naked from the waist down. As I await her return, I try to make myself comfortable as I sit cold and cross-legged on the examining table with the giant scratchy tissue looking thing covering my nude bits.

When the nurse comes back, I maneuver my body down the table and put my feet in the stirrups as she sits on a low stool with her face between my very unshaven legs. I don’t really think this is a comfortable thing for either one of us, no matter how many times she’s done this. It certainly isn’t comfortable for me, no matter how many times I do this! Then, while talking about something or other, she will either use a giant Q-tip to lightly examine my latest problem (the Lichen Schlerosis , the tear in my anus, the Vestibulitis…whatever) or she will gently apply Lidocaine to my urethra (can you figure out where this is going?). The Lidocaine stings and burns in an attempt to numb my urethra for the child size catheter she is about to insert.

Ever have anything inserted into your urethra? I firmly consider that orifice to be an “exit only” hole, and this procedure sure as hell violates that rule!

When “Susan” is my nurse, she is very gentle as she guides the catheter through the bumps and ridges and whatever else is inside my urethra. When Dr. E. does it (which thank god was only once!) he was not nearly as patient or gentle! Once the catheter is in place, my bladder spews forth more urine, even though I swear I just emptied it, and it is caught in a pink plastic something or other. I never actually see this part since I am covered with a giant tissue, but the first time it happened I was mortified! I thought, not very rationally, that I was peeing in my nurse’s face! When she didn’t say anything about her golden shower, I was left trying to figure out why the hell I still was peeing when I literally went to the bathroom 5 minutes ago! When I finally got up the courage to ask, Susan told me I, A) am not peeing on her face or any other body part and B) it is because my bladder and the pelvic floor muscles supporting my bladder are, and have been, in spasm for so long it is just about impossible for me to truly empty my bladder right now. Evidently the catheter which is scorching holes in my urethra is going to help me fully empty my bladder once a week.

After my bladder is drained, it is filled with a mixture of Elmiron pre-dissolved in (I believe) bi sodium carbonate, water and something else I always forget. Several treatments later, I no longer feel the medicine being pushed through a big needle looking thing into the catheter and finally deep into my bladder, but the catheter still burns and its insertion always makes me feel a terrible urge to urinate (despite the fact that I just did before I got half naked and that my bladder was drained even further when the catheter was initially inserted! How much pee can one person have?) When I’m good and full, of what, realistically is probably two or three inches of liquid, even if it sometimes feels like 40 gallons, the catheter is withdrawn. The procedure is over, and unless I’ve asked a few questions or we have a good conversation going, the entire process takes fewer than five minutes. Sometimes we talk while Susan’s face is still between my hairy legs. Sometimes I scoot back on the table and have the conversation in a more “normal” position. Eventually Susan leaves the room, I get dressed and she generally comes back with whatever new ‘scrips I need or to follow-up with any other questions I might have. She is a brave woman to come back into the room, as I always have more questions to ask!

Finally, I am given instructions to try my best not to urinate for an hour and a half and I am free to go (after I pay, of course!). An hour and a friggin’ half??!! To someone with IC, that is almost akin to asking me to never pee again! The only times I ever go that long without peeing are if I’m asleep (and up until recently I was lucky to sleep more than two hours without needing to get up and pee) or if I deliberately dehydrate myself because I know I am going out and I don’t know where the bathrooms are, if there are any or, if I try mightily to ignore the increasing pressure and painful need to pee, like on long road trips to Massachusetts. Telling me not to pee for an hour and a half is torture sometimes. I might ordinarily be able to hold it that long if no one told me not to pee, but once that edict is given, my bladder pounds at the door of mercy, begging for a bathroom, threatening to saturate my clothes and publicly embarrass me if I don’t release my urine right this very minute!