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Posts Tagged ‘stoma’

Prolapsed Stoma

Just when I thought I’d experienced pretty much everything I was going to with this cancer stuff.  Then, without warning, my guts are hanging out. Literally. (Yuck.  Even the name – “prolapsed stoma” – sounds disgusting!)

I’ve been doing really well lately, feeling better, gaining weight, keeping busy. Then, last Thursday I noticed my stoma seemed to be “sticking out” a bit more than usual. It was about time to change the ostomy bag anyway, so I went into the bathroom, removed the bag and – gasp! – there was about an inch of, well, intestine protruding out of my stoma. Let me just say this is not something you want to see (don’t worry, there are no photos for this post!).

It wasn’t painful, other than emotionally. I will admit I pretty much freaked out. I did have the presence of mind, though, to immediately phone my surgeon’s office. I got Dr. Brown’s nurse, Blanca. Usually she’s very helpful and sweet. Perhaps I caught her on a bad day. Between sobs, I described what was happening, and her rather un-sympathetic response was, “Well, that happens sometimes. If it gets worse, you should go to the hospital.”

I was choking back tears of panic. She asked me to hold a moment. When she returned, she said she’d been able to speak to Dr. Brown between patients and he suggested I lie on my back to see if the intestine would go back in on its own. She said he wasn’t too concerned if it was only protruding about an inch. If it got to be four or five inches, then I’d need to have it looked at.

I hung up in disbelief. My guts were literally hanging out and my surgeon wasn’t too concerned? However, I did as he suggested and laid flat on my back in bed for a while. It wasn’t long before the intestine began to sink back in (where it belongs, thank you!). While I laid there watching and waiting, I couldn’t help but think there has to be something symbolic about having one’s guts hanging out. But, for the life of me, I couldn’t come up with what it was.

When I finally felt like it was safe for me to get up, I went right to the computer and Googled “stoma prolapse.”

Not a good idea! I saw all sorts of gross photos of intestines popping out of stomas several inches and more. I tried to just read the text and not look at the pics, but it was impossible not to notice them. Besides, there wasn’t much explanation in the text that seemed helpful either.

Fortunately, my three-month check-up with Dr. Brown happened to be scheduled for today. I went to his office hoping to get some answers to my burning questions:

• What causes this to happen?

• What can I do to prevent it?

• Will I need surgery?

His answers were (in this order):

• Don’t know.

• Nothing.

• Hope not.

Okay, I may have paraphrased a little. Basically he said they don’t know why stoma’s prolapse, although he believes it’s often related to a stomal hernia. He felt around my stoma as I was reclining and then lifting up as in a crunch, and said he thought I might have a small stomal hernia forming. (Oh, joy…)

He said there was really nothing I could do to prevent another incidence of prolapse. And there wasn’t much I could do to prevent the hernia from increasing. He said, “You could lie on you back all the time and never use your stomach muscles, but I don’t think you want to do that…” And, as for surgery, he said he did not like to operate on stomal hernias unless it was absolutely necessary. Ditto for prolapsed stomas. If I had a persistent prolapse of many inches, he said we would consider surgery then.

Well, thank God for small favors! I am so disinclined to have more surgery (unless it concerns life or death), I was at least comforted by this last bit of info.

So, for now, I guess I’ll just keep doing what I’m doing. And keep trusting that it was a one-time incident…or at least that if it should happen again it won’t be any worse.

I left Dr. Brown’s office and had a chocolate milk shake – to reward my inner cry-baby for not making more of this than need be.

~ ~ ~ ~ ~

Okay, I can’t stand not including a photo. So here’s one I took tonight of my new neighbor. His name is Billy.

My new neighbor, Billy. Isn't he adorable?

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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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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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