Carry On Baggage

Each day of my recovery has a new challenge and different pain that is center stage but I know eventually all of those things will start to get better until one day I am finally recovered. The difference between this surgery and others, the journey doesn’t stop there. 

This blog is a short explanation of my whole urostomy system- what it is, how it works, and how to care for it. I think I have glazed over this subject in the past so I get a lot of questions about it and as usual I thought I would just write a blog to answer some of the questions! I will warn you… the pictures are graphic. Before I had surgery I saw a couple pictures of stoma’s and was disgusted. Then the first couple times I saw mine I sobbed. Truthly, it looks a lot better than it did 3 weeks ago but still, if you are easily grossed out I would maybe skip this blog! Don’t say I didn’t warn you…

You can’t just remove a persons bladder and move on… you need a new way for your body to rid itself of the urine that your kidneys are busy making all day long. There are a few different ways of handling it and for me we went the direction of the illeal conduit. So they took out a piece of my small intestines and made it into an extension cord by connecting my ureters to one end and then pulling the other end out my lower abdomen, just a couple inches to right of my belly button, creating a stoma. So now that's where my urine comes out!  The problem is it has no sphincter or valve of any kind to regulate when the urine comes out. So that thing just does as it pleases…

There it it. My stoma. It's suppose to stick out like that, sends the pee forward and helps create a a good seal on the wafer.

You can see where the stoma is on my abdomen and the size, about the same as a quarter. You can also see my "pirate scar", the incision they used to remove my bladder. Apparently he did it like that so he wouldn't have to cut through as many muscles but I think it looks awesome! Arrrr!

My tummy's new look... 6 incisions and my stoma. 

I thought it would be a constant tiny trickle of urine but it actually has little spurts randomly, more or less often depending on how much fluid I’m drinking. So of course you couldn’t just leave that to empty, you would have a huge mess. So the 2014 solution (apparently it changes regularly) is an adhesive that goes around the stoma, called a wafer, that has a little plastic ring that a bag clips right onto. Just like Tupperware. I like to keep my pee nice and fresh…

There it is with just the wafer on. (I could  not for the life of me figure out how to turn this picture so just tilt your head!)

On a day to day basis I would just have the bag, which is just a bit bigger than a sandwich size Ziploc bag. It has a little valve at the bottom that I would keep shut and then just open when I need to empty it. Again depending on how much I’m drinking, I would empty it about every hour or so.

Closed! 

However, right now as I recover I'm in bed most of the time so I have it attached to a bed bag that holds way more urine. I just plug a tube into the bottom of my bag and open the valve and it just drains directly into the big bag. Later on I will just have it attached to the bed bag at night.

Attached to the bed bag!

It took me a while to find the right wafer, there are so many out there with all kinds of adhesive but once I found the one I have now it's all working great! I am still getting adjusted to the whole thing and my skin is still really tender so I’ve been changing the whole thing every 3 days but eventually I can keep the wafer on up to 7 days and just change my bag 2 times a week.

The whole process of changing the whole system was really overwhelming at first! No matter the amount of instruction we had from the urostomy specialty nurse and directions and diagrams we read my Mom and I were still really unprepared when we did the first change at home. I was in the shower and impulsively decided to remove it. With no experience and little preparation it was quiet the experience… But now we’ve got it down to like a 5 minute thing and I’m sure we will continue to get better at it until I can do it on my own and it just becomes a part of my routine.

There are two ways of removing my wafer: either with adhesive removal wipes or in the shower. If I do it with the adhesive removers then I have to use wound cleaner and gauze to clean the area really well so it’s kind of more work in some ways and I don’t feel as clean. So I prefer to take a shower and remove it then use the hand held sprayer to get all of the gunk off. You see… using some super complicated scientific solution reactor device (I’m just using impressive sounding words to make it sound like I know what I’m talking about) the wafer swells and creates this foam seal around the stoma to protect it from any excess urine that isn’t draining into the bag. Lately, since I’ve been laying down so much, the urine sits around the stoma for a while until it drains into the bag which means I have a lot of that weird goopy stuff. Once I’m up and around more it would just drain down and I’m hoping that will mean less of that business. 

So anyway… I remove the wafer and bag then clean my stoma and the area around it. It continuously drips urine so a nurse advised me to hold a tampon on the opening that the urine comes out of while I clean around it and then get things into place! It works great!

Handy tampon trick! 

Then I wipe the skin with a wipe that has some solution that creates kind of a barrier which protects my skin from the wafer. Meanwhile my mom or Zach, whoever is helping me, has measured my stoma with a paper template (it continues to get smaller and smaller until about 6 weeks post op so we have to measure everytime) and then cuts the hole in the wafer to be the perfect size to fit around my stoma. Eventually it will settle into the size it will always be and then I can order pre-cut wafers so we can skip this step. 

Then we just put the wafer onto my skin around my stoma! I press along the edges to make sure the adhesive is secure then I clip the bag into place and that’s it! What once, just 2 weeks ago, seemed like such a huge, overwhelming project is now a really simple and quick job!

This is how it looks all complete! I can put the bag any direction but have found it works best at an angle while laying down. (Couldn't figure out how to turn the picture again...)

I haven't gone any where yet and have only worn "normal" clothes a couple times so I am still trying to figure out that side of things. I've worn pregnancy bands a couple times which hide it really well and my friend sewed a pocket into one for the bag to go but I haven't tried that yet. So there's definitely a learning curve and it's been all about seeing a problem and finding creative ways to make it work! Overall I think this side of things has been going really well and it's definitely not as challenging and life changing as I thought it was going to be! 

I am breaking this whole recovery into several blogs because it’s overwhelming to think about writing everything and I’m really still deep in the physical (and emotional) recovery so there’s lots more to come but I’ve been getting a lot of questions about this so I thought I would summarize this real quick and show some pictures to help people understand. More to come real soon!