David: An Origin Story

 Webster's Dictionary describes a colostmy as: a surgical operation in which a piece of the colon is diverted to an artificial opening in the abdominal wall so as to bypass a damaged part of the colon.

That was the best way of starting this entry that I could think of. Do I regret it? Maybe. But did it spark a better idea for how to write this blog about the most intimate part of my cancer story. Yes.

When I googled "colostomy", a plethora of questions came up along with the definition. So, I decided to answer the top questions about colostomies for anyone interested. 

But first: My story.

When I first got "the call" that I had cancer, my doctor told me that I would likely need a colostomy. That was worse news to me than having cancer and having to go through chemotherapy. I was in the middle of trying to have a hot girl summer, and my doctor just told me he was going to slash me open with a knife and pull my guts out on purpose and then leave them on the outside so that I have to poop through my front for the rest of my life (or until they decide I no longer need to). 

As a horror fan, when it's put like this, it should be appealing and exciting. But it's not a horror movie, and I am not the final girl. Just a girl who poops into a bag hooked up to her tummy.

The morning I woke up from the surgery, the doctor and his team came into my room and showed me their work for the first time. The bag was clear, so I could see the stoma under the bag. It was red and terrifying. But of course they said that it looked great and the surgery went well. 

Because the surgery was such a massive operation, removing my left ovary (RIP) and sigmoid colon (sorry I never knew you existed until this) as well as installing the stoma, there is a gigantic scar starting above my belly button, trailing all the way down to my pubic area. There were like 50 staples holding it closed. 

I was not allowed to eat solid foods for quite some time after the surgery. I was being fed nutrients through tubes in my arms. Because of this, I lost 30 pounds in two weeks. I remember gathering the nerve to sometimes open my hospital gown and look at myself in the mirror, and seeing a body I didn't recognize. My breasts had shrunk considerably, as is always the case when I lose weight. My boobs shout "I volunteer as tribute!" a la The Hunger Games, which I guess is at least a decent metaphor to make in the battle against cancer. Unless you're not Katniss Everdeen. 

My lower half was still incredibly swollen, and felt like squishing a fresh, Jumbo Puff'd Marshmallow. 

During these rare moments when I could stomach looking at myself in the mirror, my mind would run rampant with horrible, negative thoughts. Mostly that as a single woman, no one was ever going to be able to love me this way. I was surely going to die alone. Would I ever be able to live a normal life after this? Could I ever be intimate with anyone ever again? Or would I just scare people away?

Spoiler alert: Things got better.

Eventually I was able to eat solid foods. My solid food of choice? A grilled cheese sandwich with tomato soup, and chocolate pudding with whipped cream. Delivered by my favorite hospital staff member, who would visit me every day to ask my order, which was usually chicken broth if my diet only allowed liquids, and the grilled cheese. One morning, she brought me a grilled cheese and tomato soup because I was in an operation to insert my port so late that I missed dinner, so she had the kitchen specially make me one for breakfast. While a grilled cheese was not exactly what I had in mind for breakfast, I will never forget the kind gesture of that amazing woman.

When I had my first "training" on how to change out the bag and replace it with a new one, I was so overwhelmed. It all seemed so difficult. So many steps, so many things to remember. Also, I had to gingerly work around a literal piece of my colon that was sticking out, and I was certain it would hurt like hell if I ever touched it. I was never going to get the hang of it.

My favorite day of the whole experience (although saying "favorite" when the bar started out really low already....) was the day I got my tubes out. They had initally taken out the catheter a few days after the surgery, which meant I still had the poo tube in my b-hole, which also meant that I had to now get up to go to the bathroom to pee, with the b-hole tube, and the IV hooked up to my arm. I had kind of wished they just left the catheter in until they could take out the b-hole tube so that I didn't have to wrestle with tubes every time I had to get out of bed to pee.

So back to my favorite day. When my nurse got the word from the doctor that the b-hole tube could come out, and that I could eat a solid diet, I nearly cried. Even the actual act of getting the tube out didn't put a damper on the fact that I was so happy the tube was coming out and I was going to get ice cream in a matter of moments. 

The day I was discharged, they handed me a packet full of things I should eat, and should avoid with my new colostomy. The no-no list of foods was mainly vegetables. Nothing with skins, definitely no corn, no fruits with skins and seeds. I was basically only allowed to eat meats, cheeses, and yogurts. 

For the next few months, I ate mostly pastas, cheese, ice cream, and turkey sandwiches (with just one piece of lettuce, okay'd by the nurse who gave me the no-no list). 

I had a nurse come to my house to help me change the bag once a week. Her name is Christina, and she became a friend, mainly because she was the only other person besides my parents that I was seeing on a regular basis. She had dark humor like me and she didn't beat around the bush. 

Now, getting to where David came from.

My sister told me that a friend of her boss had just recently gotten a colostomy, and she had named hers. Naming my colostomy had not ever crossed my mind. It all felt so new and foreign, I was just trying to adjust to the physical hurdles before I would be able to joke about it. But once I heard that someone had named theirs, the wheels started to turn around what I could possibly name mine.

My sister said that her boss's friend named hers Jocelyn, after Jocelyn Schitt, from Schitt's Creek, which was fun because of the obvious shit reference. 

So when I started to consider names for mine, initially I thought of Roland, like Roland Schitt, but that man is so gross and gives me the ick, and I didn't want to associate my new b-hole with someone like that. So I ran through the main cast of characters: Alexis? Maybe. Moira? Potentially. Johnny? Not likely. David? Like, "Ew, David"? It might be perfect. Anytime the bag made noise, I could blame it on David. I could joke and say "Ew, David" and that would give me a laugh and eventually make me feel more comfortable about the whole thing. (It was a little weird when I went on a date with a guy named Dave earlier this year..)

And let me tell you, giving my colostomy a name was the best decision I could have ever made for myself. I highly recommend it for you, if you are new to having an ostomy, know you may get one some day, or if you already have one and haven't named it yet but are open to the idea. Give it a go. 

It's been one year since I got David. I feel much more comfortable changing the bag, I'm not afraid I'm going to hurt him, or that he's going to magically suck himself all the way back into my body or the exact opposite. 

So here are the questions from Google that I would like to answer for myself in case anyone is curious:

Is a colostomy bag a permanent thing?

It depends on the person and the situation! Mine is reversible, but it all depends on treatment. But some people do have their entire colon and rectum removed because of their condition. I'm hoping to have mine reversed some day, but at this point I'm a little nervous to have it reversed because it's been a year since I've had to use the toilet to poo.

Why colostomy is done?

There are lots of reasons people get ostomies. Mine is obviously for colon cancer, but there are those who get them for Crohn's Disease, IBD, even sexual assault or other trauma to the rectum and colon.

How long do people live with a colostomy?

I can only speak from my experience, and that is at least one year. But lots of people live long happy lives after stoma surgery, mostly due to the fact that the ostomy saved their lives and they may have died without the surgery.

Do colostomy bags smell?

Speaking from experience, yes, but it may be one of those smells that only the owner of the smell notices. I feel that if the bag isn't changed for a while and there is lots of output, then it is more likely to smell. If I notice it smells, I just change the bag (not the whole appliance, just the bag).

Do colostomy bags fart?

Hehehehehe yes.

Is a colostomy bag a permanent thing?

It can be! Depending on the reason for the bag, or the person themselves.

Is colostomy a major surgery?

Mine was, because I was also having other organs removed and then the colostomy was put in. So honestly, I don't know if a colostomy surgery alone is major, but considering they are rerouting one of your organs and installing it on the outside of you, that sounds pretty major.

What kind of stool comes out of a colostomy?

Honestly, it varies in consistency. The ideal consistency I have been told, is that of oatmeal, or pudding. I have also experienced stool that I can only describe as the consistency of those small Cadbury Easter eggs, which is way too hard and needs to be softened. There is also diarrhea, which is always fun (sarcasm).

Can you live a normal life with a colostomy bag?

Had you asked me a year ago? I would have said no. But now, I can happily exclaim that, yes, absolutely you can. Since my stoma surgery, I have gone kayaking, paddle boarding, pole dancing, and hiking. I have plans to start running again, and maybe even work up to running another half marathon in May 2023. I have also gone on many dates, and even found a partner who could care less about my colostomy, who even embraces David. 

Can you shower with a colostomy bag?

Yes. I used to be afraid of showering with the bag off, but now it is my preferred method to take the whole bag off before a shower, exposing the whole stoma so that I can clean around it, and then you don't end up with a soggy wet back that you have to wait to dry before putting clothes on. Since the stoma has no nerve endings, you don't feel anything like water hitting it or your fingers touching it. It's kind of bizarre, but better than if the stoma DID have feelings?? I mean could you imagine??

What celebrity has a colostomy bag?

The first that comes to mind is a drag queen from RuPaul's Drag Race, Tamisha Iman - WHILE she was competing for the crown. Incredible.

Does a colostomy bag collect urine?

Nope. Different hole, different output. No pee allowed.

How often do you empty colostomy bag?

It really truly depends. What you're eating in a day can affect how much output you get, and the more output you get, the more you have to empty the bag. Or the less you have to empty.

How do you empty a colostomy bag in bed?

I have never had to do this myself - both times I was lying down in bed getting my colostomy changed I was in the hospital and someone else did it for me. The only time I actually emptied my colostomy in bed was not intentional.....because accidents happen. 

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So those are your Google questions answered by a colostomy owner. If you have any questions, drop em in the comments. I'd be happy to answer them. Do you have a colostomy? Is there anything I missed? Let me know! 

Love,

Molly + David