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Posts Tagged ‘colostomy bags’

I suppose it was bound to happen eventually. But I somehow had the illusion that it wouldn’t happen to me!

I had a HUGE blow-out with my colostomy bag. Thankfully, I was at home when it happened. It was bad. REALLY BAD. I was sitting at the computer when I realized something had happened, so I lifted up my shirt and camisole to take a peek, and there was SHIT everywhere! It was all over my waist and side, all over my camisole, all over my shirt…oh, man, it was everywhere!

So, I’m really glad it didn’t happen while I was out somewhere.

I think the seal on the bag failed because I’d been using baby oil to lubricate the inside of the pouch (so it would be easier to empty). The ostomy nurse and some literature I’ve read said baby oil or cooking spray was okay to use. I opted for baby oil because I just couldn’t wrap my head around keeping a can of Pam in the bathroom. But I think the baby oil must have gotten under the wafer seal somehow and the whole bag just came loose from my skin.

Trust me…this is not something you ever want to have happen. To add insult to injury, both shirts were white! I’ve washed them in hot water numerous times already and you can still see some of the stain. Made me wonder: how did mom’s ever get cloth diapers clean…?

So, I may just have to get used to keeping cooking spray next to the toilet. In comparison to the legions of other things I’ve had to adjust to in this dance with cancer, I suppose Pam in the bathroom is fairly minor.

Thought y’all might get a little chuckle out of this post. (No photo though!)

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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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I know, I know…it’s been a while. But no need to worry excessively – I’m doing okay. Just struggling a bit with motivating myself to write something.

Here’s a slightly overdue recap of recent events:

12/28/09 – I went in for an ultrasound on my right arm to see if the blood clot(s) had resolved. Thankfully, the answer was yes (no clot!). So, I got the “all clear” to have the port removed (although I still have to keep giving myself the Lovenox shot every day for a few more months as a preventative).

Later that day – Off to the cath lab for the port removal procedure. Two nurses told me it would be easy, with no sedation necessary, and nothing to worry about – so, I didn’t. Then, the doctor came in while they were prepping me and gave me a slightly more detailed version of what to expect: the procedure would take about 20 minutes, they’d give me local anesthesia to numb the area, and “most people do fine without sedation, but if you feel anything sharp, let me know…”  (What!?)  They tented my head again, as they had when I got the port installed, so I couldn’t see what they were doing, but I could feel tugging and pulling and hear the sound of clamps being used. At one point I swear it felt like the doctor put his foot on my shoulder and yanked the thing out of me. I’m sure that’s not what really happened, but it felt like it! They sewed me up and I went home. For a procedure that was supposed to be “nothing” I ended up on the couch for the next two days. I was really fatigued and it felt like someone had slugged me hard in that soft area between the shoulder and the collar bone. But I survived (once again), and the dreaded port is gone!

12/30/09 – I had my follow-up appointment with Dr. Brown at four weeks after the surgery. He looked at all the wounds and said they were healing properly and he was happy with my progress. He also commented that when he saw me walk down the hall to the exam room “it didn’t look like you just got off a horse.”  I understood this to be a positive indication of how well I was doing. We discussed the things I’d been concerned about (the stoma bleeding, the wounds still seeping, the bulge on my belly just above the incision…). Everything I brought up was met with his nonchalant “that’s normal.” I’m to see him again at eight weeks after surgery.

1/8/10 – I was having a few problems with the colostomy bag, so I went to see Carla, the ostomy nurse, for a follow-up. She looked at everything and, like Dr. Brown, declared that all was well and normal for this stage of things (being less than six weeks after surgery). I talked to her about the features of the different bags I’d tried so far. There was one bag I liked everything about, except for the wafer (the part that adheres to your skin). I preferred the wafer on another bag, but it didn’t have other features I wanted. Carla looked through her enormous ostomy appliance catalog and found a bag that has the combination of things I wanted, including the “microskin” wafer I liked. I’m waiting for the new bags to arrive any day now so I can see if they’ll make dealing with this a little easier!

Staying warm while at the computer...

Other than that, I just seem to have days when I simply do not feel like doing anything. I think I’ve actually been just a little depressed – which, in Dr. Brown’s and Carla’s words, is “normal” under the circumstances. I’m still adjusting to a having a colostomy (a huge adjustment, I might add). My body is still recovering from the months of being poisoned, burned and cut open. Plus, the chemo and radiation brought on instant menopause, meaning my hormones are whacked on top of everything else. And, it’s been downright cold! So, a tiny bout of depression doesn’t seem out of line, does it?

The good news: It’s a New Year. I’m cancer-free. I’m well enough to get out and walk, drive, go to the grocery or the post office, and generally do many things I once took so much for granted. Only now, I usually remind myself how blessed I am to be able to do these simple chores of daily life. Okay, sometimes I’m sad. Sometimes I’m silly! But, mostly, I’m just grateful for life.

Next time: Ostomy 101 (I’m giving you fair warning about the topic in case you’re squeamish…)

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