Dom asked me back with two other lovely MS-having humans to discuss bladder and bowel issues in MS. Did we forget to mention UTIs? Yes! Role of diet? Yes! But if you want some candid talk about what MS can do to your excretory functions *and* what you can do about it, this is well worth your time.
For those of you tuning in late, here are parts one and two.
During my first two years self-catherizing, my urologist tweaked my medications multiple times to further reduce the frequency of my urination–and to eliminate my nocturia, which is a fancy way of saying “the need to get up in the middle of the night to pee.” Vesicare was rejected because it made me so thirsty I drank enough to offset any positive effects it might have. Oxybutynin was replaced with a higher dosage of Doxazosin, which was eventually revealed to be the cause of my leakiness. So long, Doxazosin! Then Myrbetriq came along and put the rest to shame. Effective with no side effects (for me, at least), it was a godsend. A very expensive godsend ($60/month copay if memory serves) but a godsend nonetheless.
Still, I almost never peed the mere six times a day that self-catherization initially promised. It was time to try something new. In the summer of 2015, my neurologist suggested a urogynocologist with a compulsive nervous laugh and a penchant for quizzing me on Shakespeare while examining my ladyparts. What she lacked in bedside manner, she made up for in action: it was time for Botox at last!
My first appointment was delayed due to insurance issues and then a UTI (something that’s no longer an issue since my doctors now prescribe a week of antibiotics prior to the procedure), but on January 19, 2016 I happily wrote the following to my family:
After months of anticipation I received my first dose of bladder Botox today. As I (over)shared on Facebook, my nurse’s running narration of the prep included her referring to my urethrea, which did not make me feel I was in the best hands. Still, she did her work well enough (filling me with numbing liquid and gel) that the needles didn’t hurt much going in, even in the inexperienced hands of a urogyno fellow. I continue to find the office lacking in efficiency and am tiring of having to discuss Shakespeare with my legs akimbo. If this works, though, it will all be worth it.
It was totally worth it! With Botox working with MS to almost entirely immobilize my bladder muscles, I reached the magical six pees a day goal and even slept through the night. The effects usually last nine to twelve months. I initially received Botox again in early 2017 and then was scheduled for a second treatment the following September when I ran into prior authorization issues. Not familiar with prior authorization? It’s a fun thing insurance companies do where they receive a prescription from your doctor and then say, “Are you sure? Please fill out additional paperwork to prove it.” Because I also receive Botox injections in my neck, it takes some administrative finesse to juggle my authorizations since (also fun) you cannot have two prior authorizations for the same medication simultaneously. It took 40+ calls to my doctors, the pharmacy, and the drug company to straighten everything out. After a lot of stress and even more tears, I finally got my Botox in February of this year.
I also got a new urologist, one who laughs at appropriate times and has a helpful, responsive staff. She administered my latest set of Botox injections this week. Curious about the procedure itself? Lucky for you I took notes.
- First I stripped from the waist down (in prior visits, a hospital gown was involved) and lay on a table with my knees up (no stirrups, which felt more dignified than previous procedures).
- The nurse swabbed my urethra with iodine and then used a large, needleless syringe to inject my bladder with lidocaine jelly.
- A catheter was then inserted to transfer lidocaine liquid into the bladder.
- Lidocaine is a numbing agent, by the way, and it takes a while to do its stuff. To ensure it covered all of my bladder walls, I lay on my back for ten minutes and on each side for five. (This was much better than being told to “move your hips around,” which is what the urethrea nurse suggested.)
- I received another swabbing and then another squirt of lidocaine jelly for good measure.
- A new catheter was used to empty my bladder into a big cylinder,
- Then it was time for the main event. An itty bitty lighted scope was inserted through my urethra, et voila! The inside of my bladder appeared on a screen to my left. Next thing I knew, I saw the needle within the scope puncturing my bladder walls, leaving behind a bright red trail of blood each time it exited. The sensation is tough to describe . . . it’s a sort of pressure followed by a light sting. After a few minutes of discomfort, the twenty injections were done. I was given an antibiotic and sent on my merry way.
Something awful happened at work today. I have already blogged about its horrors (and, wow, are they horrible), so there’s no need to rehash. I kept my shit together (*rim shot*) enough to gather my things and uber home. Once there I threw myself a pity party featuring a long bath with a fancy Australian sachet I’ve been saving for nearly a year, two Cokes, and a lot of ugly crying to This Is Us, which is ridiculously emotionally manipulative and just what the doctor ordered today.
It’s been ages since this sort of thing happened to me, and I’m shaken. I’m also tired, angry, and frustrated. But I’m going to do my core workout, make dinner, and remember the message of Lily’s Purple Plastic Purse.
As many of you know, Neal and I used to run a trivia night on Capitol Hill. Its original incarnation was at the Pour House, a Pittsburgh-themed bar that was a very doable half mile walk from our home. A dear friend was in town visiting, and I was thrilled to share my local celebrity status with her (oh how they used to cheer when Neal said, “Helping me, as always, is the lovely and talented Score Babe, Rebecca!”). We delighted our guest with music selections and trivia tailored to her interests. The three of us stuck around for an extra round of Yuengling after the game was done. A good time was had by all.
There were blessings to count. 1) I was with two people who had proven their unconditional love for me many times over and would be nothing but kind about the incident for years to come. 2) No one else was around. 3) We were a short walk away from a hot bath and a change of clothes.
There is no need to go into detail about the physical horrors of the experience. We are all familiar with excrement and its qualities. I hope you are not and never will be familiar with being an adult who has lost control of her bowels in a public place. For all of the physical unpleasantness, the mental toll is much, much worse. When the last, increasingly uncomfortable steps brought us to the house, I rushed straight to our downstairs half bath, locked myself in, and sobbed uncontrollably. Was this my life now? Was I going to live in constant fear of the next pants-shitting? Would I need to limit my diet to cheese and other binding agents to ensure this never, ever happened again?*
Pajamas were brought from upstairs; soiled clothes were bagged and put in the trash outside. My sweet husband was convinced we could save the jeans, but I was having none of it. My well-meaning house guest told me about the time the same thing happened to her when she was younger and had the stomach flu. In spite of the impulse to do so, I did not scream, “STOMACH FLU DOESN’T COUNT!!!” I was too demoralized to do much but sniffle and nod. When I eventually shared my experience with other close friends, they too were empathetic and a little tone deaf, sharing stories of drunken GI mishaps. Didn’t they understand? A drunk college kid shitting their pants is hilarious. A moderately tipsy young woman doing so is tragic.
*This joke did NOT occur to me until many years later. Tragedy + time = comedy.