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Wednesday, August 29, 2012

Squirt v 3.0 & A CT Scan

On Monday, I went to see Dr. Saturday. I've been going to see him every few weeks, but I realize I realize I haven't mentioned much about the main reason for these visits: Squirt v 3.0. Squirt is my ileostomy, and you may recall that Dr. Saturday revised Squirt during my last surgery.

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Long Background Story: Squirt v 2.0 was very low maintenance. I changed my bag only once a week to every 10 days. Sometimes I would wear the same bag for TWO weeks without any skin breakdown or issues! It was great! The problem was that Squirt v 2.0 had decided it would be fun for more of my intestines to see the world... over time, he started protruding out more and more, until he was about three inches long. This was a bit of an issue. I wear a two-piece appliance (one piece, the wafer is like a hole-punch reinforcer-shaped sticker that goes around Squirt to protect my skin from Squirt's output. The other piece is a bag that snaps to the wafer like tupperware, and collects Squirt's output), and so I sort of had to thread Squirt into the bag and make sure I didn't pinch Squirt when I snapped it on! Also, since he protruded so far, I felt like he was harder to conceal under clothes, although I'm probably the only person who noticed.


See the tupperware-type rim on my bag?
Here's a pic of my wafer
Anyways, due to the protrusion, Dr. Saturday revised Squirt during my surgery in May. I guess he didn't quite realize just how far Squirt stuck out and had quite the surprise when they took off my bag in the OR! They had trouble sterilizing my belly for surgery, since Squirt was protruding like a limp tongue. I had asked him to leave the diameter, shape, and location exactly the same, but bring Squirt in so that he protruded only one inch.

I woke up to a bit of a surprise... Dr. Saturday ignored my order, and made Squirt quite a bit smaller in diameter because he "thought I would like it better." Um, really?? Or maybe I actually meant what I said! Since he made it smaller, he had to stitch up the hole on my belly that was left to the side of Squirt. Of course, in typical Hannah fashion... the hole didn't heal. In fact, it became an open wound... all because of Dr. Saturday's decision. It's been a daily lesson in forgiveness as I must painfully burn the wound with chemicals a few times a week.

Squirt v 3.0 has proved to be very high maintenance. I've had my first leaks in almost two years. Since Squirt is now oval-shaped, he is one size up and down, and a different size side to side (there's a good third of an inch difference), which means that wafers no longer fit. This leads to leakage, skin breakdown (digestive juices on raw skin 24/7 = ouch), and added expense and hassle factor of needing to change the bag more often and use other supplies make things work better. Thankfully, I am beginning to see some improvement, and I haven't had a leak for a few weeks.

Unfortunately, the surgical wound has not shown any forward progress since surgery 3.5 months ago. To track the progress (or lack thereof), I have been instructed to photograph the wound! This has led to many a happy hour of contemplating what would happen if someone stole my camera or computer. Ooooh the pictures they would find! The ostomy nurses and Dr. Saturday suggested that I email them the pictures of the wound. They acted like getting stoma wound pictures in their inbox was a ho-hum, everyday experience. Oh, the life of a Colorectal Surgeon!

I had never explained all of this, because even when he's being a challenge, taking care of Squirt is just a normal part of my daily hygiene routine. I doubt you spend much time thinking about your personal care habits, much less writing about them!

ANYWAYS, Dr. Saturday wanted to look at the wound. I *think* it may be showing *some* progress. He seemed rather concerned that some of the pictures look like some weird IBD complication that can happen on your skin, but when I showed him the wound in the office, it looked improved from the recent chemical burn I'd administered. If it reverts to the weird IBD-looking stuff again, I'll have to get a biopsy to investigate what's going on.

I started having sharp pains in my pelvis in the area where I've had abscesses... also been having other symptoms that I had prior to my most recent surgery. Not good. The only way to really tell what's going on is to do a scan... so today, I had to get a CT scan. This is not as simple as it sounds. Since I'm deathly allergic to the IV dye, I have to be pretreated in advance with steroids and benadryl. And last time, I still had a small allergic reaction despite all the pre-meds, and had to get IV benadryl. I have to drink a special contrast (can't do barium: it's so thick that it causes me pain when it has to go through the tiny opening in Squirt). Today, it took 3 tries and 2 nurses to get the IV in. I made a handy list for the radiologist of Organs Hannah Is Missing. I now do this to help them save face - the last two imaging reports I've received noted some organs that are NOT present in my body as "difficult to visualize" (forgivable) or "normal-appearing" (um... probably not so forgivable). Anyways, despite the pre-meds, I still had some tingling and itchiness in my tongue and throat afterwards. I also had a terrible stomach ache and some wicked nausea that's still hanging on several hours later. They made me stay at the CT place for awhile to make sure I wasn't going into a full-blown reaction, and when I didn't, they sent me home. I've been chilling out since then, sleeping off the benadryl and trying to get my tummy back on board.

Hopefully Squirt's wound starts healing up soon. I'd appreciate prayers for that and for the CT results! I should hear back about the CT scan by the end of the week. It's always an exciting adventure with me! As Dr. Saturday said on Monday, "Your body just doesn't do anything the easy way, does it?" Couldn't agree more...

Hannah

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