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Posts Tagged ‘ostomy bag’

Wow, this has been a hard one to write! I’ve started it several times and – well, I guess maybe I kinda wanted to chicken out.  But, I think I’ve finally got the courage to finish it, so here ya go!

For those of you who continue to be curious about the whole “colostomy” thing (FAQ’s include: “what does it look like?” and “is it painful?”), here’s my crash course in all things ostomy – at least all the things I’ve learned in the last seven weeks of living with one.

“What does it feel like?” – All I can say is you can’t possibly understand what a banana tastes like until you’ve eaten a banana – meaning I can describe this to you, but you can’t really know what a colostomy is like unless you experience it yourself. Now that I’ve mostly recovered from the surgery, things aren’t painful exactly (although I sometimes feel cramping or tightening in my abdomen when there’s about to be some “activity” like a bowel movement or gas). The stoma itself has no nerve endings, so I’m not really feeling much of anything there, but I do have sensations when my digestive system is active. Otherwise, most of what I can feel is that there’s always this bag attached to my skin. (More on that in a moment.)

“What does it look like?” – I have to wear an ostomy bag all of the time, so usually you can’t see anything except the bag. But when I have to change the bag, which is about every four or five days, I need to clean the stoma. That’s when it looks like this: 

My stoma and incision scar from surgery

That red “bud” is the stoma. It’s actually the end of my large intestine which has been re-routed and brought to the surface of the abdomen where it’s been turned inside out to form the “bud” you see. So, what you’re looking at there is the inside of my colon. (That weird dip in the belly is the top of the surgery incision which runs all the way down toward my pubic bone. I’m told the dip is not likely to flatten out, no matter how many crunches I do…but I can try!)

All the health care folks who’ve seen me say I have a “text book” stoma – it’s nicely “budded” (that’s the actual term) and uniformly round. It makes fitting the wafer (the part of the bag that adheres to my skin) easier because it’s a perfect circle and not some odd shape. And since my stoma protrudes properly (it’s not sunken in), I can get a good seal with the wafer. Thankfully I don’t have any folds or creases in my belly (yet!), so I don’t need extra rings and other sticky stuff to fill in any gaps between the wafer and my skin.

The bag itself looks like this before I cut the opening for the stoma in it:

A typical ostomy bag

The round part is what’s called the wafer. You peel off a cover to expose the adhesive and it sticks to your skin like a big bandage. The printed circles are a guide to use for cutting the right size opening for the stoma. From the time of the surgery until now, my stoma has shrunk a little (as expected). It should settle into its final size by about eight weeks. After that, I can order the bags to be “pre-cut” with an opening that’s the right size for me. Meanwhile, I’ve needed to cut the hole myself in order to get the proper fit each time.

The end of the bag has a Velcro-like closure. When I need to empty the bag, I sit on the toilet (like everyone else) and let the bag hang down between my legs into the bowl. I open the bottom and let the contents empty into the toilet. (There are more details to this part, but I can’t bring myself to describe them publicly – yet.)

Here are all the supplies I need each time I change the bag:

Supplies for changing the ostomy bag

I know, that’s a lot of stuff! The critical part is getting a good seal (leakage is soooo not acceptable!), so I prep my skin with things like:

  • adhesive remover (to remove any adhesive remaining from the previous bag)
  • stoma powder (to heal my skin if it’s gotten red or raw around the stoma)
  • a skin barrier (something like a clear moisturizer that creates a layer between me and the adhesive)

Of course, there’s the need to keep everything sanitary during the process – hence the wipes. The used ostomy bag goes in a zip-lock baggie (double-bagged!) and gets thrown in the garbage. The whole process takes me about ten minutes.

Once the new bag is on, here’s what it looks like:

Me and my bag...(what? no matching shoes?)

I just tuck it into my pants like so:

Now you see it, now you don't

And, voilà! Off I go…until next time!

So, writing this made me feel a little bit like one of those new moms who can talk about nothing other than their baby’s poop while at a dinner party! I did think it might be educational and informative though – kind of dispelling the secrecy around colostomies. I hope it wasn’t too awful…

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Sometimes I go about with pity for myself and all the while Great Winds are carrying me across the sky.

 – Ojibway Saying (quoted from The Book of Awakening)

The days leading up to Christmas must have taken their toll on me. We purposely made just super-simple plans for Christmas Day, but even those proved to take more energy than I had. It was just Mom and Tim and me for the day, and all I planned to do was make waffles for breakfast before we sat around the tree to open our gifts. Later, we would drive to Las Vegas (New Mexico, not the glitzy one in Nevada) for dinner at the Historic Plaza Hotel and then enjoy the lights of the Victorian neighborhoods surrounding the old town before heading back home.

But the morning was a rough one for me. I decided to change the ostomy bag by myself – with no supervision from the home nurse who’s been coming weekly. I encountered some minor problems (bleeding, raw skin, etc.) and without the nurse there to reassure me that all was normal, I found myself getting more agitated by the moment. After what seemed like an inordinately long time, I finally emerged from the bathroom too exhausted to prepare breakfast. Tim took over the kitchen duties while Mom and I sat by the fire. I was also experiencing more pain from sitting on the wound on my bottom, so I wasn’t in a very festive mood as we opened our gifts.

Eventually, we bundled up and headed out for our drive to Las Vegas – me with my ever-present pillow to sit on. It was a nice, clear day and the hour drive went quickly. Dinner at the Plaza Hotel was a bit of a disappointment, but we all agreed it was more about the outing and being together than about the food. But, by the time we began the drive home, I was rapidly sliding downhill. No amount of pillows were able to make me comfortable. I got crankier and crankier squirming in the passenger seat until Tim thought to ask if I had any Percocet stashed in my purse. Hallelujah! Yes! One little pill tucked away for emergencies just like this!

As soon as we got home, I immediately took up residence on the sofa, drifting around in a bit of haze until bedtime. I tried hard to remember all that I have to be grateful for (and there is so much!), but I have to admit as I laid there on the couch I was feeling a little sorry for myself.

So, on Saturday, I finally accepted that it was time to simply rest. I spent nearly the entire day lying on the sofa reading Barbara Kingsolver’s new novel The Lacuna. It was just what this frail bag of bones needed – a finely woven tale to take me away from myself and my little world. By evening I was thankful to feel more restored than I have in a while.

Tomorrow (Monday), I will have another ultrasound to see if the blood clot that once ran from my clavicle to my elbow has finally “resolved.” If so, I’ll have the port removed from my chest at 1:00 PM. If the blood clot hasn’t dissipated enough, I may have to wait a bit longer for the port to be taken out as they don’t want to risk disturbing the clot during the port removal procedure. We’ll know more tomorrow!

On Wednesday, I have an appointment to see my surgeon, Dr. Brown. The home nurse says I will get a good report (she thinks all the wounds look like they’re healing properly). I am most interested to ask him when I’m likely to start feeling like myself again!

And, on January 14th, which will be exactly six weeks after my surgery, I’ll begin taking the Xeloda again (with faith that it will assure a healthier 2010).

My New Year’s wish for each of you is that, like me, you’ll be bowled-over to find just how deeply loved you are by so many others (without the need to become ill to learn this!), and that you’ll take full advantage of the good health you now have to live just as fully as you can dream up!

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Yesterday I went down to Albuquerque for my first visit with an ostomy nurse. Tasya went with me and, as usual, when I was struck mute by the overload of information, she jumped in and asked the questions that needed asking.  Thankfully, she’s had some experience with colostomies, with both her mother-in-law and her aunt having them! So she knew to ask all kinds of details I had no inkling about.

Besides getting some education about living with a colostomy, the main reason for this appointment was for Carla, the ostomy nurse, to mark the spot for the surgeon to place the stoma. In order to find the optimal place on my body, she had me stand, sit in a chair as I would normally, slouch in a chair (as I would when relaxing), bend over like I was picking something up off the floor, and generally move around as I normally do. She observed carefully as I did each of these things several times, then she placed a mark on my belly and had me do everything all over again. Carla watched the mark closely as I repeated each of the movements, then announced, “I like it.”

"X" marks the spot

I laughed and said I was glad she liked it! Any chance I was ever going to like it?  Throughout the appointment, she was really very kind and told me over and over that I was going to do just fine.

She also spent some time showing me several different “bag systems” so I could get an idea of the many options out there to choose from. Carla said they’d work with me over time to find the system that seemed right for me. Of the bags she showed me, I naturally gravitated to the “Cadillac” of the group! (If you know me at all, you’re now thinking to yourself: of course she has to have the most elegant version, even in ostomy bags!)

I also learned a little something about stoma caps. Carla seemed to think I would be a good candidate for eventually trying a method of irrigating daily (essentially an enema given through the stoma) and then wearing a “cap” instead of a bag. I really liked this idea – but we also discussed that I would have to see how things went with a bag for a while and work toward the cap option over time. With a colostomy, you really have no control over when elimination is going to occur, hence the need to wear a bag all the time. But, apparently by irrigating daily, it’s possible to train the body to eliminate at the same time each day and then not need to wear a bag constantly. Hey, you learn something new everyday!

Tasya and I left there with an armful of literature, samples, catalogs and even a DVD for me to watch (honest to God, it’s called Ostomy Educational Theatre. Betcha won’t find that at Netflix!). We quickly dumped everything in the backseat of the car and high-tailed it to Starbucks.

On Friday I have my pre-op appointment at Presbyterian Hospital, where they’ll do lab work, take X-rays and do an EKG – all to make sure I’m healthy enough to have surgery. It will be my first chance to see how I like the hospital I’m going to spend about a week in soon.

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