Sometime in January my insurance company sent me an at-home test for colorectal cancer. Maybe you’ve received one? Basically, after some hesitation, I sent off a smear poop and then forgot about it until I got a letter in the mail reminding me that in fact, I had sent away a smear of poop. Both Ted and I found it hilarious when, after I received my 2nd cancer diagnosis in January, my insurance company informed me that I was all clear of cancer. Maybe that’s why they denied my CT scans and MRIs? I have to assume these tests are related to profit. They have to be. I’m 100% convinced insurance companies don’t do anything that isn’t related to a bump in their bottom line. Maybe people forego their colonoscopies after receiving the letter informing them they are free of colorectal cancer, hence saving them money? Or maybe the tests sometimes work, and they catch cancers earlier meaning fewer treatment costs? It beats me, but I don’t recommend foregoing any tests because of them. I didn’t and I won’t. Ever. Get your colonoscopy if you are due. Thems the rules. Occasionally I advocate for following rules. Not often, but occasionally.
I’m living in a pretty weird state right now. Some days are just fine and other days I feel a bit low. My energy still fluctuates quite a bit At the beginning of last week, I spent eight hours in bed. During the day. I couldn’t do anything, really. Replying to an email felt exhausting. But by the end of the week, I was doing pretty well energy-wise. This week seems to be starting the same. Perhaps it’s just Mondays. Also, I am often still shocked that I had cancer again and more often shocked that I am now an ostomate for the rest of my freaking life. Seriously, some days it feels like a real surprise. The other day I was lost in a book about Elizabeth Blackwell and tried to get off of my stomach whatever it was that was stuck on there bugging the crap out of me. When I reached to scratch and remove it I realized it was my ostomy bag. So great that I forgot about it and such a drag that it was bugging me.
My relationship with my ostomy is changing daily in small ways. I’m trying to work on this relationship but, frankly, it’s not ready to commit. Maybe it needs another month or two to heal and suss itself out and create some routine. Routine would be amazing, and I hear that some people get a routine with their ostomy. The greatest development for me is that I’ve been eating cooked vegetables with no pain or ill effects. Yesterday I even had a few pieces of broccoli. Amazing! Yesterday I ate a bowl of iceberg lettuce. I chewed it to an almost absurd degree but, no pain. That’s the only raw vegetable I’ve ingested thus far. I figured it has a lot of water so would be the best “leafy” thing to try. I intend to keep expanding into more veggies this week. That, my friends, is exciting stuff.
Many of you have asked about how things work with an ostomy, so I’ll try to explain a bit. First of all, I really don’t find it that hard, bag emptying and changes have gotten much faster for me, and it’s a total pain in the ass. Maybe the total pain in the ass thing will change as we mature together but … it’s sort of a deal. It’s not that it’s gross, certainly not grosser than changing a diaper, but I’ve said before bodily fluids don’t bother me.
Okay, on to the actual explaining of things. The bags themselves are plastic with a “fabric” covering. As I’ve said, almost all of them are beige. There is a brand that has gray bags, and they work well for me, so far. The bags themselves come in different ways: one-piece, two-piece, drainable, closed, convex or flat, transparent or opaque. It’s been a bit of a process to figure out what works for me and I still don’t have that squared yet. Plus who knows if it will change as I continue to heal. Right now, the bags that the nurses ordered do not work or no longer work. I think I know what might but, of course, my insurance company won’t pay for more bags until whatever date of the month. It’s fine but it’s also a drag that I can’t decide and figure out what works and just get the supplies I need. Of course, I can by paying for them. And I will but it’s stupid. If I buy bags directly from the medical supply place they are like $12 – $15 a bag. If I buy them from Amazon or some other site, $6 – $10. Not cheap, really.
I use drainable bags and generally change them every three days if things are going well. The bags are waterproof so I can shower or swim with them. People who use closed bags throw the bags away after each empty and apply a new adhesive one piece or they use a two-piece system in which case they are tossing just the bag, not the adhesive part. The two-piece systems are a little like adhering a soft Tupperware lid (with a hole in it for your stoma) to your body and then attaching the piece of Tupperware, (in the shape of a soft bag with a rim on it), to the lid. Does that kind of make sense? If it’s a one-piece system the bag is already attached to the soft “lid” that I adhere to my belly. Whew. I have no idea if that helped or just confused you.
I wear a one-piece, drainable, convex bag that adheres to my belly. It looks a little like a slim, short, vertical fanny pack. (I attached a picture!) I drain it a number of times a day depending on how busy it is which is dependent on what I eat and drink. I do this by sitting on the toilet. Some people kneel in front of the toilet and some people straddle the toilet, or stand, I guess. (I can’t figure out how standing works. Some people must have skills.) Output from a colostomy is stinky. Like WAY more than the average smelly poo. There is odor neutralizer we ostomates use by putting a few drops into the bag and also spraying some neutralizer (like Febreeze or another less nasty alternative like a candle or lavender blah blah) in the bathroom with each empty. I do not look forward to being at someone’s home without a way to “odor neutralize”.
I do not control or feel when I’m going to poop or have “output”. Maybe I can feel it a little bit sometimes, but mostly not. It’s possible this will change if my stoma ever gets into a routine or maybe if our relationship becomes more intimate. I also have no control when I fart. And, yes, it sounds just like it would when someone has a noisy fart. I sort of hate this. My parents were of the generation who didn’t acknowledge things like farts. Or sex. Or the fact that we had body parts. Eventually, I learned to use the term “rear end” but I’m not sure when that became okay. I remember once my mom struggling to describe the part of the body that is the butt. Why she needed to talk about this, I don’t remember but otherwise, the memory of her is so vivid. Standing in our yellow kitchen, leaning against the white cupboards with the large Bruegel print on the wall above her she was motioning to her backside saying, “in this area, umm… you…well…umm… the derriere”. Cuz when spoken in another language it wasn’t as horribly shameful or embarrassing? WTF? Man, white people are weirder than shit. Once, when I was seven or eight years old I asked my mother how babies were born. She said, “Well, babies come from here”, as she placed her hand on the inside of her thigh. I am not kidding. I went to bed somewhat terrified but also fascinated that someday the inside of my leg would open to deliver a baby. Dang, that weirded me out for a while.
I tried not to pass on body shame to my kids. Maybe I spared them a tad, but I know most of that kind of crap is absorbed through the ether. However, we have had to talk a lot about asses and anuses in this house. Jesus. Anyway, I’ve tried to be normal about bodies and farting, whatever the hell normal means. So farting is something I’ve always owned up to in our house with a laugh. (Although Franklin is an easy out cuz man, that dog stinks.) As it turns out, I just learned, I am not normal about farts. At all.
The other night we got together with very close friends for dinner. As the four sat down, my stoma decided to fart. It was quiet, I don’t think anyone really heard it. I quickly covered my stoma with my hand in case it had more to say. At the same moment, I realize that I am sitting next to TED! And it occurs to me, there are two of us, who could, at any moment, just fart loudly through the whole damn night. Like a farting orchestra with no maestro or manager. I knew I needed to speak this. Just say this… so that I could be alright with it. I always find life so much easier if I can just speak to the dark, the embarrassment, the fuck up, the problem, the possible obstacle or humiliation or whatever. Just put some light on it and it becomes softer, less powerful, easier, manageable, and okay.
Now, these are some of my closest friends in the world. Friends I’ve known since I was 23, that’s a 30-year relationship. If you knew me in my 20’s you’d have an idea of all the embarrassing shit they have seen me do, heard me say, embarrassing decisions…gosh, there’s a small library card catalog full of “Anne’s finest moments” they’ve been privy to. My friends, who despite all that continue to love me and Ted, and have been hanging out closely with Ted and his stoma for 17 yrs and still, I COULDN’T do it. I couldn’t speak to it. And honest to Tulips, later I realized that I spent the rest of the night with my hand covering my stoma, scared to randomly fart in front of these people who love me so much and have already been through a whole lot with me. I could not, despite trying, get myself to say “hey, we might just randomly fart all night long” so that I could feel better. Later I was aware I did this. At the time it was just thoughts and feelings. Later I felt the shame in my body. Shame in my body for having a body. Dang, I am tired of this shame. This shame, this inability to speak to randomly and uncontrolled farting, (and you might just have to trust me on this), is white supremacy living in my body. Just like my disordered eating is white supremacy at its finest. It’s exhausting being a body but not being able to be a body. That a whole lot of arrogance I have to see, love on and undo.
And, once again, I’m ashamed at having shame. See the vicious cycle? Ugh.
Anyway, yes, I will now randomly fart loudly without notice for me or anyone else. I won’t like it and will likely be embarrassed. But I will get used to it. The horrible stinkiness I leave in your bathroom is also cause for embarrassment for those of us taught to believe their shit shouldn’t stink. So I will probably carry around a small bottle of lavender blah blah or something. Jeez Louise.
Okay, back to explaining a few things. Right now, I don’t have any output, or I have it all day. There are reasons this is a drag but mostly when I have it all day because draining and cleaning is a bit of a chore. One thing I’m interested in as an ostomate is irrigation. People who have a colostomy are sometimes a candidate for irrigation. If you have an ileostomy (no colon) irrigation isn’t an option. Colostomates who do irrigation rave about it. Basically, I think, it’s like giving yourself an enema every day or every other day, which trains your colon to empty at a certain time every day (or every other day). As far as I can determine it seems there are a ton of advantages to doing this. Right now, and again, my colon hasn’t exactly adjusted so who knows what it might do in the future, but, right now, I’m spending quite a lot of time in the bathroom so the idea of spending 40 or 60 minutes doing this every day seems like a no-brainer. Some people who irrigate are able to wear a “stoma cap”, meaning they don’t use bags at all. Most, it seems like, wear a bag just in case.
I asked Assefa about irrigation the last time we met in the hospital, just after he graduated me to being on my own.
Me: I want to ask about irrigation.
Assefa: “What about irrigation?” He said with a scrunched-up nose.
Me. Well, it sounds sort of ideal, can I do that?
Assefa: “Ah, you should have told your surgeon you wanted to do that before the surgery.”
Me: Shocked and instantly angry, I almost yell at him, “Assefa! Why wouldn’t you have told me that? How could I have known to talk to my surgeon about it?”
Assefa: “Okay. Okay. Let me discuss.”
Then he tells me what irrigation is and why he doesn’t like it. From what I can gather he doesn’t like it because “you have to do it at the same time every day, or two hours on a side”. Which means within the same four-hour window every day. I’m guessing that wouldn’t be a problem for me with the exception of maybe one day a year?
The last time I saw my surgeon I asked him if I was a candidate for irrigation.
He said, “I don’t know anything about that. You should ask Assefa, he knows.”
I laughed out loud. WTF.
So, in a few weeks, after my colon has decided who she is, I’ll call the stoma nurses and talk about it. All of the people in the “FB Irrigators Group” say it’s freeing and amazing and make it sound like the best thing since rear window defrost. They all claim they will never go back. Tons of people in the “FB Ostomy Support Group” group say they wish they could irrigate. So… I don’t know why stoma nurses seem to keep it a secret. I wish they wouldn’t because now I’m scared to learn about some horrible drawbacks to it. Currently, it sounds like the best way to manage this ostomy and go about my days and nights. i.e. life. We’ll see in time. Maybe.
I’m trying to imagine camping while having a colostomy and/or being an irrigator. I know it’s done I’m just trying to visualize how I could/would do it. Cause I want to camp more. Also trying to visualize doing it in an airport bathroom, which, I assume if I ever want to travel around the world again would come up. If those are the hardest scenarios I can come up with for living with an ostomy I’m pretty fucking lucky. And pretty fucking lucky to be alive to have such issues.
Guess that’s it for me, friends. Hope that wasn’t too much information that you didn’t want or ask for.
I’m doing okay. I’m working my way through this stuff. And the sun is shining. And I have great friends who don’t care if I fart.
I really do appreciate all your love and support so much.
Do something special for yourself today. Take some extra deep breaths. Sit quietly for 30 seconds. Do a jumping jack. Buy yourself and someone else a donut.