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The Pursuit Of Bladder Control

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I have spent a large part of my life searching. We all search right? (I mean, I hope it’s not just me.) We search for happiness, love, friendship, knowledge, and wealth. If you’re like me you spend a lot of time searching for your car keys in the bottom of your purse and maybe your cell phone whilst talking on it. However while I’d rather be on a quest to find the true meaning of life or, more likely, figuring out how to convince my husband that four kids would be a fantastic idea, I have instead found myself otherwise occupied with the all important pursuit of bladder control.

My spinal cord injury has resulted in a lot more than useless legs. Among other things, I now have what is called a ‘neurogenic bladder’. This is just doctor talk for ‘a bladder that does whatever the hell it pleases’ and I guarantee you it is NOT as glamorous as it sounds. For the first month after my accident I didn’t pay my bladder too much attention. I had an indwelling catheter (a tube that goes up into the bladder and stays there, continually draining into a bag) and I had more to worry about than urine. But for weeks I was told that the best bladder management option for me would be to take out the catheter that wasn’t causing me problems, was consistently draining my bladder and was keeping me dry, in order to try something different. And there starts my battle with bladder control.

Something different meant doing my own catheters to drain my bladder on a consistent schedule (ideally every 4-6 hours). They made it sound like it was easy…I’m sure you’ve guessed by now that it was not. A urethra is not a large opening – I’ll leave it at that. However performing the actual catheter was the least of my problems. I went from not thinking about my bladder or ‘accidents’ to constantly being anxious about both. In theory, your bladder should be able to stretch and hold a certain amount of urine until you empty it with the catheter. Except sometimes (or all the time) it doesn’t do that. Sometimes it spasms and releases everything. And due to the lack of sensation below the waist…I wouldn’t know. Theories are great.

So after a few days consisting of a tremendous amount of crying and having wet underwear/pants/wheelchair etc. all the damn time, I started wearing, what I like to think is, a prettier and more girly version of disposable underwear. But really…it’s just a diaper with a purple bow that I call a ‘pad’ to make myself feel better.

I was super frustrated and ready to go back to my semi-permanent catheter but my medical team convinced me otherwise. They convinced me to try medication that would help my bladder relax. The meds helped a bit but I think it was mostly because I stopped drinking enough. Basically I was still stuck between a rock and a hard place…

ROCK -> Using catheters increases the risk of bladder infection. Staying hydrated is a big part of fighting bladder infections. Staying hydrated means a lot of urine. A lot of urine means leaking or cathetering (definitely not a word) more often and that increases the risk of bladder infections <-HARD PLACE

To top it all off, my bladder infections tend to present as major leaking – we’re talking through a pad, through my clothes through my cushion leaking. So. Frustrating.

So after 8 months of continually fighting with my bladder I decided to give up the medication and try Botox. They inject the Botox in to the bladder wall (about 20 times) and it helps the bladder to relax and hold more urine – Apparently I’m a textbook candidate and it can last 6 to 12 months. I’m hopeful this will finally be the answer and I can stop stocking up on my purple-bowed diapers. As much as I’ve grown to love them/I don’t want to die every time I buy them or put them on (they have saved me a lot of mess and embarrassment…it’s a love/hate sort of arrangement).

So now here I am: Three days post Botox and hoping to see it work. I plan on trying this new absorbent underwear called “Icon Undies” (www.iconundies.com). They are real underwear with an absorbent aspect to them…I’m very intrigued and hope that it will give me peace of mind while maybe looking a bit more stylish – if only for myself. I will definitely update on these underwear; they seem like a great option for any woman who deals with bladder leaks (and it is a lot more common then you might think).

As for what I might spend my time on if I find the secret to bladder control…I think maybe I’ll revisit the fourth child argument. Nothing screws up bladder control like getting pregnant.

Check out the next post in this series “The Pursuit of Bladder Control – The Saga Continues”

 

 

 

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10 comments

Katriece Burns February 12, 2017 - 1:36 am

Oh Codi, you make me laugh and you make me cry. Either way, I love reading your posts. My fingers are crossed that the Botox works!!!

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Chantelle Fowler February 24, 2017 - 5:54 am

Hey there! I’ve been creeping your FB page and blog for a few weeks now and just wanted to reach out real quick. My family and I live on Vancouver Island, moved out here in 2013 from Saskatchewan because my hubby, too, has a DCI and the SK winters weren’t cutting it for us anymore! I see a lot of resemblance between your story and ours and I just want you to know you’re not alone. Thank you for being so open with your journey, as hard and frustrating as it is sometimes (all the time).

My hubby started getting the Botox injections in 2015 and it has completely changed his bladder routine! He went from needing to wear Depends 24/7 to being able to wear boxers and not need to be a slave to his phone alarm in the middle of the night telling him to pee. The injections have lasted a little over 6 months before he needs to go back and get another. It’s been fantastic for him, though, to be able to have a little bit of the old him back, even if it’s just through getting to wear normal underwear again!

Thank you for sharing your story. I look forward to reading more about your journey. My husband is now 7 years post-accident and while the parenting in a chair thing definitely presents its barriers and hardships, it does get easier as your little ones get older. Ours is 8 now and also has only known her dad as a wheelchair user. It’s heart breaking to hear her wish her dad could walk or say things like, ‘we can’t do that, it’s not daddy friendly,” but there are so many different ways that he can connect with her now that she’s older so that bond is still there. Wish you the best!

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Niamh March 13, 2017 - 11:34 am

How are you finding the Botox ? I’m a C6-C7 quad and have a very neurogenic bladder . I could only hold 100ml before I’d spasm . I now have 300 units of Botox every 3 months and it’s solved all my problems ! I hope you find it helpful too !

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Codi Darnell March 13, 2017 - 11:35 am

It’s made a huge difference! Loving it

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The Pursuit Of Bladder Control – The Saga Continues – Help Codi Heal May 11, 2017 - 4:11 pm

[…] you saw my first post on bladder control, you would have read that I had just […]

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The Pain in My Paralyzed Legs – Help Codi Heal June 28, 2017 - 6:05 pm

[…] with bladder control which was essentially useless. Botox has worked so much better (as I detailed here and here in my posts on bladder control). There have been pills to try and regulate bowel function […]

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Gabriela Martinez September 29, 2017 - 6:20 pm

Thanks so much for sharing! I’m in love with your blog! You’re so on point. I read both of your bladder control blog posts, and it felt really nice to know that I’m not the only one that goes through all of the ups and downs of bladder control and catheterization. I’m definately going to try out botox. Thanks again!

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Codi Darnell September 29, 2017 - 8:03 pm

That’s great! I hope it works for you :). Thanks for reading!

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Spinal Cord Injury Awareness Month – My Biggest Unseen Struggle – Help Codi Heal September 10, 2018 - 6:19 pm

[…] time consuming and frustrating. Eventually I discovered Botox which I’ve talked about in detail here and here. But even that’s not perfect and my bladder still acts up if an infection is on the […]

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How Peeing My Pants at the Gym Reminded Me to Love the Little Things – Help Codi Heal February 6, 2019 - 10:39 pm

[…] If you happened to catch my Instagram or Facebook stories yesterday, you would have heard my little tale from the gym. Basically, I went to use the washroom before my workout and my bladder leaked—before a girl could even get her pants off. Thankfully I had already transferred to the toilet and my cushion was saved. To say I was annoyed would be an understatment. I mean, you get yourself all motivated to go the gym and before you can even get out onto the floor, you pee yourself. Don’t you hate it when that happens? (For those just tuning in to the paralysis game, my bladder doesn’t work. Check out the nitty gritty details here). […]

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