Lately a lot of people have been asking about the relatively new treatments using Botox for interstitial cystitis. I'm sure there are lots of people out there who have success with it but a sweet IC friend and I have been two of the biggest Botox advocates.
So we are both frequently asked questions and are sharing our input about the whole procedure, side effects, outcome, ect. Rather than typing this a million times I finally decided to write a blog with as much info about it I know!
*Pause*
If you haven't yet go read:
www.how-ic-it.blogspot.com/2012/06/most-unwrinkled-bladder-in-west.html
and
www.how-ic-it.blogspot.com/2014/01/diary-of-mad-ic-patient.html
Did you read them? Ok good, moving on.
First and foremost... Botox in your bladder is NOT for pain. It is for overactive bladder symptoms. Period. I know pain is the hardest to treat of all the IC symptoms and you're desperate but unfortunately this isn't going to work.
So, Here goes a totally unmedical and potentially inaccurate explanation of how Botox works.
Okay so think about people you see on tv that have clearly had too much Botox in their face. It looks frozen in one expression. (Have you seen Meg Ryan lately? She's always been one of my faves but it's a real pity what she's done to her face...)
Basically what I think the Botox does is freezes the bladder. So that if you get the right dose for your body it will tighten up and strengthen a bladder that is otherwise weak and loose. Therefore reducing frequency, urgency and incontinence.
Of course with that is the risk of getting too much Botox and your bladder freezing too tight, making it hard or even impossible to void.
As far as how the procedure works, I'd think each doctor does it a little different but my awesome doctor, Dr. Karny Jacoby in the Seattle area, does it in a very "IC patient friendly" way.
I go to the surgery center at the hospital, check in, get in full surgery mode: gown, nonslip socks, and hat. They get my IV started and I answer the same questions I've answered thousands of times... No I don't have any crowns, caps, or loose teeth. I don't smoke, drink or do recreational drugs. Ect, ect, ect.
When we're all ready they wheel me into the OR, depending on the anesthesiologist they might give me some happy drugs on the way or they might make sure I'm on the table in the right spot before they send me to la la land. Then they use general anesthetic to put me out and get to work!
Then my doc empties my bladder and sends a scope up there to see what's going on in there. She fills my bladder with water beyond it's measly capacity to attempt to stretch it (what's known as a hydrodistention), then if there's hunner's ulcers she cauterizes them, and she injects the 50 units of botox all over my bladder. (I'm not sure what order she does those things in.)
She may do other things (I'm thinking pre-teen sleepover after the first girl falls asleep... Bra in the freezer? Put whipped cream in hand and tickle with feather?) but next thing I know I wake up in the recovery room full of other people waking up from surgery... Not entirely unlike some syfy movie, what was that one called with Keanu?
Usually I cry quite a bit here from the pain when I first wake up. They give me good drugs that make me fall back to sleep and then I wake up crying again. We do this several times until I eventually wake up and can speak and drink some water.
When I'm doing better they push my bed and me to "day surgery" and pick up my companion (usually my mom or hubby) for the day along the way.
Some hilarious things have happened in that room and some horrible things too. I don't know if it depends on what drugs the anesthesiologist gives me or what but a few times I've been so weird and funny. One time I laughed hysterically that my favorite nurse Tom's name backwards was Mot. Oookay.
Other times I've had allergic reactions, most every time I have nausea and vomiting, and of course the dreaded first pee.
The first pee after all that harassment to my bladder is rough. We have formed a strategy to give me a half dose of heavy duty IV meds, go pee torturously then they give me the rest of the meds right after.
I've had many strange things happen during the first pee... Once my pee was thick and black, my husband compared it to motor oil, after a time that Dr. Jacoby had to cauterize several hunner's ulcers. Most every time there's lots of blood.
No matter the looks of it, it's always really painful the first time but each pee after that gets a tiny bit easier.
There have been a couple times when I think my bladder is full and I try to go but nothing comes out. I get back to bed and rest while the fluids pouring into my IV fill my bladder and then I try again. Then I can usually get it out, bracing my sell against the pain.
Then I get into a recliner and (assuming hopefully that Tom is my nurse) eat some of the most delicious toast in the whole world. (I'm pretty sure Jesus has it for breakfast). If I can keep that and some water down then that's my ticket out of there!
I clumsily get dressed in my cozy clothes I wore there, they unhook me from monitors and the IV then I'm outtie. My companion scampers off to pull the car up and the nurse wheels me to the exit.
Depending again on the anesthesiologist, my post-op pain meds, and how long the whole recovery process takes I can be many degrees of drugged for the ride home.
I'm always sleepy but sometimes I request a smoothie or shake for my scratchy throat and just take long blinks until we're home. Other times I sleep the whole way home. Sometimes it's a mixture of those two options. (One time we got pulled over for being in the carpool lane because the cop couldn't see me laying down. He told me to sit up and so now I have to rest sitting up like some kind of lazy night watchman.)
A tip: it hurts so bad to sit after all the damage to your urethra so bring soft pillows and blankets to alleviate some of the pressure for the ride home.
When I get home I always go straight to bed and sleep until it's time for more meds then I wake up, eat 4 crackers, take more meds and go back to sleep. Repeat for 24 hours.
The first recovery was a solid week of excruciating pain and horror, I told my mom I would never ever do it again but after realizing what a huge difference it made I did and since then each treatment is easier and shorter. It's kind of like maintaining your yard. When you first move in you spend days making it perfect so that going forward you just have to maintain. After that you just mow and weed as needed verses renting giant machines to clear out major problems. (That was a weird analogy... Moving on.)
The Botox takes a couple weeks to work but then it can last anywhere from 4-9 months.
My biggest reason for trying it originally was because I had such bad incontinence, like not just a sneeze leak but a full on bladder emptying no matter where, when or what I was doing.
I was willing to do anything to potentially help that symptom. Incontinence is one of the most life altering symptoms in my eyes, an adult diaper or pads built for these things don't even kind of hold the drenching pee and they irritate everything down there anyway. So when I'm flared and having lots of accidents, I just stay home and sit on pee pads that aren't much different than puppy training pads.
But Botox was magic! It worked miracles for me! Like I went from my bladder totally emptying on it's own 1-2 times and leaking 5-6 times every day to never having any accidents at all. It has also helped with my urgency and frequency but I never really had those too bad.
The first Botox treatment lasted about 6 months until I started having accidents again so we quickly scheduled another procedure and the next time it was 5 months. Since then we've been doing it every 4 months whether I need it or not.
My first Botox was a year and a half ago and I have had 4 more since then. Each recovery time is shorter and easier... Except... The Botox procedure I had 2 and a half weeks ago, it has been the worst one yet. I ended up with full blown retention this round but I have a theory!
Here it goes...
They gave me a spinal this time to alleviate some nausea (against my protest) so it took my body way longer to wake up. Right after surgery I couldn't go but the pain in my bladder was so intense that they did a bladder scan and I had over a liter of urine in there so they sent me home with a foley catheter (the kind with a bag). I had that for 4 days then removed it and was still in retention so I got another one. Then I got that one removed 4 days after that. I was able to void but right away I got a horrible uti from all the cath business. Then 5 days after that I was back in retention... I was trying to self cath instead of getting another foley but the last time I did I went in too far and jabbed the top of my bladder... Not only was it self inflicting torture multiple times a day but I felt like I was doing more harm so I got another Foley catheter.
I'll have this one in 8 days total. Tuesday I'm going to my doctor and she's going to fill my bladder with water, remove the cath then see if I can empty my bladder on my own.
If I lay super still in bed with my cath hooked to the bed frame and take pain medicine I barely notice it... But anytime I move, try to walk, empty it, or get off my med schedule... Sky rocket pain. So I'm just staying in bed... For 3 more days.
Last night I attempted to go downstairs for dinner and ended up whimpering in bed with ice and meds then the pain pulled me out of sleep when those wore off.
Anyway I think there's just been lots of trauma to my whole urinary tract the last almost 3 weeks and it's on strike. I'm really hoping it decides to get back to work real soon...
So back to the Botox. Even if I have to have to cath for a month I would still do Botox again. It would at least be worth another try.
It definitely has some potentially negative side effects but if you have any severe over active bladder symptoms it's totally worth trying at least once.
A few notes: I've never been one to be able to handle getting cathed in any form but it's amazing what you'll do when you feel like if you don't drain your bladder the urine might start coming out of other orifices.
Also, if you have IC- never, ever let any doctor do anything with a scope unless you're under general anesthesia. My doctor said with a regular patient that just has an over active bladder they would do this procedure in office with lidocaine but there's no way an IC patient could handle the pain. If the pain of the procedure is any worse than the pain when I wake up from it then I guarantee she is right!
Okay! I think that's about it but any other questions, I'm an open book! Feel free to message me on my Facebook page, www.facebook.com/how.ic.it.by.deni
(Please don't sue me for any medical inaccuracies. I'm in no way a professional, I'm just sharing my experiences and opinions!)
Wait. One more thing. I want to especially thank my Aunt Claudia, my Grandma, my Mom and of course Zach and Titus for helping me through these last few weeks of horror. With anything from phone conversations to emptying my cath bag to taking great care of Titus to just making me smile they remind me how blessed and loved I am, even when I feel useless and burdensome. I'm so lucky to have such a great recovery team, I have no idea what I would do without them!
Snuggling these guys and watching movies makes being stuck in bed much better!
