A Different Wholeness

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…