I've been writing this post in my head for about a year. But that doesn't mean it's anything more than expressing my exasperation about having a colostomy. Sorry, no profound life lesson today. But it might make you laugh. It is about poop and gas, after all, so pull out your inner 8 year old boy.
Originally, I was going to title this post "Coming out of the colostomy closet... on a river of tears." But I waited too long, and now there's a birthday of sorts.
On the morning of that surgery, someone asked if the ostomy nurse had come by to indicate the best location in case I needed a colostomy. I panicked on the inside, but calmly said that wouldn't be necessary. No one came by, at least not while I was conscious.
Interestingly, the first thing I did when I emerged from anesthesia was feel my stomach to confirm everything was OK. It was not. Apparently my tumor was pressing on the colon and my surgeon decided to move it out of the way. Which would make my six weeks of radiation much easier... such a bonus, he said.
I'm sorry, but I'd rather have 6 weeks of bathroom issues during radiation than years of colostomy management. I was on the couch feeling nauseous that whole 6 weeks anyway, so it wouldn't have made the situation much worse. I'm sure there were more long range reasons than that, but I don't remember them.
In case you're wondering what a colostomy is... the colon is re-routed from it's normal exit point to a "stoma" on the abdomen. Don't google pictures, just know that "red and beefy" is something that makes the stoma nurses happy. Unfortunately, your sphincter doesn't relocate, so you have an "appliance" that's like a big sticker with a hole in it, and there's a bag that attaches to the appliance, and that's where your stool and gas go, whenever they please. The plastic bag is covered by an unfashionable one-color-fits-none flesh tone mesh. Big disguise. Happily, used correctly, the system has a good seal and everything is contained.
One redeeming quality: the collection system is pretty cool because there are great products to control odor, like charcoal filters for gas and drops for the bag and sprays for clearing the air. The products I use are made by Hollister - but not the surfer-cool Hollister clothing brand. If you ever see me wearing a Hollister shirt, you can laugh with me, because I'll be wearing it as an inside joke.
A compassionate friend asked her patient, who has had a colostomy for years, for recommendations. The patient's #1 colostomy rule: always carry a change of clothes, just in case. Good-bye little purse. Hello tote bag, with room for extra supplies and a sleek change of clothes. My shoulder thanks you. The one time I cavalierly forgot my bag was Thanksgiving. After our second Thanksgiving meal, we had to make a hasty exit because I was in dire need of new supplies. Otherwise, I've only needed my emergency kit a couple times, and never the change of clothes. Phew!
The first week after surgery, my husband and I giggled a lot, coming up with terms like "tummy toots" when gas bubbled unexpectedly into the plastic bag. It is funny when I'm not embarrassed, but you just never know when that will be. If I can't disguise the noise, I usually say "excuse me, my tummy is bubbly" and pray that it sounded like stomach rumblings rather than gas coming out of my stomach. But it sounds like what it is, just in a confusing location. Recently I was hanging out with my three year old niece on an "extra bubbly" day, and she was tuned into every noise that came out of me: "What was that?" Every time. But the lovely thing about three year olds is they're not making any judgments, so it's safe to simply say, "My tummy!" And giggle a little and move on. I did ask my doctor how much Gas-X was too much, since the box limits you to a measly four a day. She said, "It would be really hard to do yourself in with Gas-X." Bless her, that still makes me chuckle.
After the first week of laughing, I cried a lot. Thus the "River of tears" in my original blog title. Not only did I have this gross, offensive rearrangement of my elimination system, but I had a scar running from my belly button to my pelvic bone, and scars across both breasts, which were hard and lopsided due to the mid-process halt in my reconstruction. Thank you, Stupid Cancer. The moments between pajamas and the shower were always dangerous, having all that disfigurement confronting me in the mirror.
I felt like Frankenstein, so when I found this card, I had to get it:
(It says, "I'm so grateful that if I were a monster created by a mad scientist, my name would be Thankenstein." Cute. And it helped me refocus on my blessings.)
At my post-op appointment, my surgeon enthusiastically asked me how I liked the location of my stoma. I was horrified. There was no possible positive answer in my mind. All I could think was, "It couldn't be more front and center!" (Well, it could, but it IS in a really prominent location.) He breezed past my stunned silence to say how great he thought it was: easy to see and access, on smooth, hairless skin. The one time to be thankful for a round belly, I guess. Grr.
Needless to say, my vanity has been tested to the breaking point in the last year. I've learned to focus on other things, and while I still hate the colostomy and plan to reverse it someday, I am managing it well. The one possible redeeming quality will come if I am a hospital nurse someday who can check in with new colostomy patients and let them know a normal life is possible in spite of this disruption. My hospice nurse friend encouraged me by pointing out that now I have street cred. Awesome! (Really. Because "street cred" is not something you'd normally use to describe me, so it makes me feel kind of cool.)
I could talk about poop for ages, but I'll spare you, other than to say the best thing about chemo is that it turns my output into "river rocks," which are infinitely more easy to manage than healthy, soft poo. I'm experimenting with (some might say abusing) my anti-nausea meds to see if I can recreate that consistency. It's better than eliminating fiber from my diet, which would be another option! I can also "irrigate" every few days to clean out my colon, giving myself a few poo-free days. As I do these things, I think of my eating disorder patients, who have to tell us about their last BM every other day (constipation is a common problem, so this helps us monitor their health and prevent problems). It also makes me think of fellow cancer survivors who have gone all-in with a naturopath and boast about their healthy, multi-times-a-day elimination habits. Which makes me wonder if I'm harming myself by holding in toxins. Maybe, but I like not obsessing about my output, so I'm choosing certain mental health benefits over possible physical detriments.
There you have it. This is undoubtedly one of those regrettable TMI posts, but I'm hitting "publish" in case there's another colostomy survivor out there, needing to know someone feels their pain, but forges on with life in spite of it. Those of you who acknowledge that poop is funny, this is for you, too. :)
Wow, I think that surgeon needs the same kind of 'street cred' you have; he might be more hesitant to do it....Think I would be angrier at him than you, but guess it wouldn't do any good! You handle all this with such grace and humor - love you!
ReplyDeleteAwh me and your colostomy share a birthday! <3 ;D
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