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Friday, March 15, 2019

I Can Pee Out Of My Belly (Or, My Mitrofanoff Surgery)!

Anyone who knows me can tell you that in my world, “let’s share a fun fact!” is roughly equivalent to “let’s take a field trip to hell on a paratransit bus!” Oh, wait. That’s redundant. Anyway, fun facts are usually shared in circles of sweaty, anxious people at an office retreat who are all silently wondering if there are free bagels at the end, playing with their cheery “Hello my name is stickers” and counting the minutes until they can release the farts they’ve been holding back for the duration of this forced bonding experience. 

It’s a timeless struggle that takes courage, wit and character—coming up with a tidbit about yourself that is not too dry, but not too weird. In these times of trial, you will likely identify a random woman from another department whose name you will never recall, but for reasons unknown you will always remember that her “personality animal” is a wallaby—a piece of information that does exactly nothing for your professional growth. 

Well, friends, before you die just thinking about fun fact circles, today I am sharing a fun fact about myself that I think is pretty neat: I can pee out of my belly! 

How? I recently had a bladder surgery called the Mitrofanoff procedure.  

The Mitrofanoff procedure, in a nutshell, involves the creation of a channel between the bladder and the surface of my skin. The channel is created using an unlikely hero, the appendix, which has been repurposed from uncool, rejected vestige organ to nifty pee tunnel. I am overjoyed that my appendix finally has its moment to shine. It told the others it would be famous one day! The opening on my belly is called a stoma and looks like a tiny red circle. As I have full sensation in my body, I can feel the urge to pee and can drain my urine from the channel using a small tube called a catheter. When I feel like I need to go, I insert the catheter into the stoma and my urine flows through the tube into a small plastic bag, which is torn open and emptied into the toilet. When I’m done, I throw away the catheter and the bag and go on my merry way. 

Let’s backtrack some. What prompted my appendix to have an overdue rise to glory? In short, due to my disability, I can’t transfer to the toilet independently. That means a lot of waiting around and wiggling while waiting for an assistant, a lot of pee anxiety, and about 43213421 people seeing me sans pants. While my struggle has supplied me with enough tragedies turned darkly hilarious stories for two lifetimes, it is tremendously difficult to depend on others for such an important task. If I wanted to go out alone, I had to dehydrate myself, carefully planning my (painfully minimal) fluid intake around literally everything. I knew that if I made one wrong move, I could wind up stranded amid what I like to call a peemergency. Even when I have an assistant, transferring is effortful and my trip to the bathroom can easily take double the time it would take a typically mobile person. 

Finally, my bladder is a tough customer. 

I have neurogenic bladder, meaning that my brain and bladder are basically drunk texting each other. Typically, when a person pees, the detrusor muscle contracts and the sphincter muscles relax. My detrusor and sphincter muscles are out of sync. This means that even if really need to go, the muscle will often refuse to release urine and I will be killing time on the toilet for what feels like a century. 

Between feeling tethered to other people because of pee drama and a lack of muscular cooperation, I felt like my bladder was controlling my life. The dehydration I experienced on a regular basis was endangering my health and I no longer wanted to choose between independence and having a drink with lunch. I realized how wrong it all felt last winter when drinking a full Snapple at a friend’s house seemed forbidden and foolish. Snapple fact: something had to change. 

In order to be a candidate for the Mitrofanoff surgery, one’s bladder must have certain characteristics. Specifically, it must be able to hold a certain amount of urine without leaking or refluxing into the kidneys. If one’s bladder is not able to hold a sufficient amount, it can be enlarged with an additional procedure called a bladder augmentation, which augments the bladder with tissue from the bowel. In my case, I did not need an augmentation, because as the urologist put so eloquently, “you have a really big bladder.” I’ll be adding this special trait to my resumé, as I’m sure it is prized by employers worldwide. The “biography of my bladder,” as  I like to call it, was determined using three presurgical tests: a kidney bladder ultrasounda urodynamics study, and a cystoscopy. While not pleasant, this testing is normally fairly painless. However, due to my extreme muscle tightness (thanks, cerebral palsy!), the tests were more uncomfortable for me. Both my urologist and her urodynamics tech deserve a Nobel Pee Prize for their patience during our daunting quest.

The surgery occurred on December 4th, so I am roughly 3 months healed. I spent four days in the hospital and at the beginning of the saga, there were lots of tubes up in my business, which drained my bladder and allowed it to heal. One entered my urethra, draining urine from below. The other held open the new channel, allowing it to heal sufficiently before use.

For 17 days, I had both tubes in. Having a large tube shoved all up in your business is no joke. My body treated the tube like an uninvited guest and spasmed regularly as a result. Bladder spasms feel like someone is squeezing your bladder ruthlessly and pushing out little bits of pee. There’s nothing like pausing midsentence and explaining that your bladder is currently having a complete temper tantrum. When the urethral tube was removed, I rejoiced. For the next 18 days, my urine was drained from the smaller tube holding my channel open into a bag while the channel continued to heal. Healing is hard work! On January 8th, the final tube was removed and at last, my new channel was ready to use.

I wish I could say there was triumphant music playing, my hands were ever nimble, and the first cath through my Mitrofanoff was a first prize success…. but that would be a boring story. The truth is, when I was first de-tubed, my bladder was so unaccustomed to fullness after weeks on a bag that I expertly…leaked from below and peed my pants before I could get the catheter into my stoma. I can still pee “the old-fashioned way” on a toilet (if this is possible depends on an individual’s bladder characteristics), so if I don’t cath quickly enough, I will still pee my pants, another lifelong talent. An infection meant the belly tube went in for another 7 days. On January 22, after trying 42,000 catheter types and making lots of remarks that sound like innuendos in the process (“too stiff!” “too slippery!” “too long!”) I cathed without help for the first time. In that moment, I felt like I won the lottery *envisions catheter selection show in the style of The Bachelor*.

Getting the hang of catheterizing myself and getting my bladder muscles back to work after being on “vacation” has been a long, sore, wild process. You find out who your people are when you’re peeing your sheets and receiving emails from the chuck sheet company encouraging you to take a quiz about which color diaper matches your personality (yes, really…and I know you were curious, so, purple!).

  Image of a peelightful quiz from the chuck sheet company that determines your personality diaper....yes, that's a thing. How's that for an icebreaker?


                                               
 I am forever grateful to all of those people. You are the real MVPees. It hasn’t been rainbows and butterflies (mostly just pee. Lots of pee), but all the tears, tubes, and WTF moments have been worth it! For the first time in my life, I can pee independently, a dream I never thought would come true. Going into a bathroom alone feels mighty weird and mighty amazing. Bathrooms remain labyrinths of accessibility fails from heavy doors like this one:


[Video of me trying to open a door
transcript: "Oh look, another door I can't open! I love these!"]


to tiny stalls and fruitless searches for a garbage can to dispose of my catheters. But it feels indescribably good to have more freedom (peedom?) and privacy as I navigate life on wheels. I still pee the “regular way” once a day or so for nostalgia’s sake and re-strengthening my muscles is a work in progress. So is telling my dog that it’s not cool to run away with used catheters from my trash can. 


Image of Dolly, my white floof dog, trash diving

                                               

But I am getting there, and enjoying lots of water along the way. 

P(ee)S: The use of the word “journey” evokes images of a corny Hallmark specialIn the interest of avoiding the accompanying cringe, let’s call this recovery my pee-venture.

I hope that by sharing my story I have helped fight stigma around bladder issues and been a resource to those exploring bladder management options. Have questions? Feel free to contact me on the message form. Please note that specific medical concerns should be directed to a urologist who can help you decide if a Mitrofanoff is right for you.

3 comments:

  1. I've thought about doing this for years. Because I can stand and walk a little no one has ever taken me seriously about it. I'm about to be 38 now and have been playing the dehydration game for far too long. Still parts of this freak me the hell out. Like what about infected stomas and UTI's. Is there an increased risk? What if my insurance stops covering cath supplies and then I still have to pee the normal way but now have a stoma. I applaud you. As usual you are who I want to be when I grow up.

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  2. Hi! Thanks so much. Infection is a risk with any surgery obviously but I haven’t had any infection in the stoma. One UTI from the indwelling cath at hospital but none since then.

    I actually think the mitro has helped me have a healthier tract with less UTI risk because I’m actually drinking and peeing regularly!

    I use a closed system cath which has the baggy attached so I don’t have to hold a urinal. The CS also reduces the entry of outside germs. Mine has a little handle so my hands do not even touch the tube. Hand washing is really important though!

    Insurance coverage is definitely an ongoing concern. Right now no issues especially since I have a dx of neurogenic bladder but that’s definitely something to discuss with a doctor.

    If you do not access a stoma regularly it will narrow and close (bodies try to heal themselves!) so it’s important to cath on a regular basis. I can still void urethrally but channel health is even more crucial if you can’t.

    My bladder produces some mucus too so I need to wash out my bladder daily with sterile water (not everyone does, and the frequency may change with further recovery). I need a PA for that so my mom usually does it in the AM.

    The other option is a suprapubic tube which is an indwelling tube at the belly either connected to a bag or emptied like a tap.


    We can talk more if you have any more questions. Just text me!

    Love you CJ

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  3. I am amazed at what medicine can do. It gives me hope for my own disabilities that I can adapt to the world, too. Thank you for this informative post!

    ReplyDelete