u/GoodWitchClover

Without sharing too much about myself, I’m a young woman in college and I wound up needing to get a bag at the end of January. Before that, my life was going amazing. For nearly the first time in my life, I was happy, making new friends, enjoying my schooling, starting to grow comfortable with my body, and more. I had just gotten into my first ever relationship a few weeks prior. I remember, even then, thinking “surely, something will come along and ruin this, right? It always does.” But then I told myself not to be cynical, to not get in the way of my own happiness, and then just as the semester was ramping up… I had to go to the ER, and my life ground to a halt.

I was told I’d probably have the bag for about 3-6 months. As hard as it was to swallow, I thought “okay. I can wait it out.” I secretly hoped to have it behind me by my birthday, in mid-June. There’ve been a lot of hard days, and a lot of learning, but I’ve tried my best to solder on. I’ve been disabled all my life, so I’m used to working around stuff and learning how to live fully anyways. And yet, this has felt extra difficult. I’ve had to donate or store a bunch of clothes that used to be flowy, or that even showed just an inch of my stomach. I was always proud of keeping my bathroom extra tidy and clean, and now it’s cluttered with different ostomy supplies and tape and everything in between that I need on the counters and in the cupboards for ease of use. I even noticed my girlfriend(who, to her credit, has stuck by me and has been my biggest supporter throughout all this) asking to use one of my roommate’s bathrooms instead.

Every day, I have to pray that there’s not a disaster, and that I won’t be derailed and end up running half an hour late because my wafer decided to fail right before class. I have to hope it doesn’t make some horrible embarrassing noise when I’m in the middle of an interview or a conversation with anyone. Several nights, I’ve struggled to sleep because I’m anxious that my bag will somehow burst or fail overnight and turn into a huge mess that I wake up to. Thankfully, that’s only happened once, but it feels like the fear will always be there, rational or not.

I mentioned previously that I hoped this would be resolved by June. I had an appointment on Monday, after a lot of tests and medical stress and a lot of other stuff, where I learned that wouldn’t be happening. The treatment that I’m going to start soon will take me months, which would mean I wouldn’t get it taken off until late this year or early next year. And if it doesn’t work, which is totally realistic and likely… then I’m stuck with this bag for the rest of my life.

Ever since then, the discomfort I’ve felt has increased exponentially. Now that I see this bag as a potentially permanent addition, I absolutely loath my own body again. I get horribly embarrassed by it on a regular basis, and I scramble to hide the bag and make sure it’s never visible to anyone close to me. I haven’t even been able to look at myself in the mirror again, because I feel so… gross. Not to be melodramatic, but I was reminded of that one scene near the end of 1984(the book), where Winston looks upon himself after months of torture to realize how frail and miserable he’s become.

I know this is an ableist mindset, and it contrasts to the way I think about a lot of my other disabilities. But it’s so hard to think of it in the same vein, when it’s done nothing but cause stress and pain and hurt. So for those that struggled with finding that peace and comfort with themselves after getting their stoma, how? What helped you get to the other side? And do you have any tips for me on how I can make my life with this thing slightly more bearable? Thanks. <3