It’s taken me quite a while to get to the point that I’m ok writing about this and being completely public about it.

My ileostomy bag.

When I first thought about writing it, I shuddered in horror at the thought of people associating me with something so downright...disgusting.

I don’t want to be poop bag girl!

I had no interest in being an advocate or a voice of involvement in any way for this part of my treatment. But since getting the bag and the accompanying surgery, my eyes have really been opened, and I’m glad. With that said, please understand that this is still a deeply personal, emotional and sensitive issue for me. I’m posting, recording and documenting all of this so that other people can see what really goes on behind the scenes, and so that hopefully someone who sees it will feel a tiny bit less alone on their way to healing.

First off. It’s not as bad as I’d imagined! Somehow. Truly, it really actually, factually does not stink. I refused to believe this before my surgery. So much of the anxiety I described leading up to surgery was centered around this bag. It was all I thought about for months. A piece of my intestine sticking out of my body. All my body’s waste in a little bag, being carried with me all the time? Horrifying. Stinky. Humiliating. Painful. Literally the stuff of my nightmares.

The moment I was diagnosed, the doctor told me “you probably won’t even have to have a colostomy bag!” At that point, it hadn’t even crossed my mind, but I guess I was relieved that he said this so I didn’t have to worry immediately. I don’t blame him for getting it wrong; he’s a gastroenterologist and not an expert in treating cancer, and he was right in some sense anyway.

With all that said, having the bag and the setup for 2.5 months now, I can honestly say it’s ok. I won’t pretend it’s my favorite thing on earth. But frankly – it’s nice to never have to poop! I never have to think about it, and there’s certainly no more blood in there to worry about. I have affectionately named my little stoma Lars, for the name of the surgery that created him (Low Anterior Resection Surgery.) Some ostomates (ostomy peeps) had horrible quality of life before their bag came into the picture – constantly running to the bathroom, terrible pain and urgency, etc., so for them, the bag is a huge respite and great solution.

Side note: also, is there ANY BETTER METHOD for smuggling alcohol or something into a venue/festival than with a pretend ostomy bag? Have not tried this, but I’m waiting for the day I can attach a new (unused!) bag to one of my friends, fill it with mistake juice, and sneak in somewhere with the most ironclad excuse ever. (This is a joke. I’d never want to exploit the struggles of my fellow ostomates. Still might try it though.)

Beyond this, so many of my fellow CRC survivors have a permanent version of the bag themselves. Their attitudes and handling of it have really changed my perspective. At the end of the day, whether temporary or permanent, the fact is: it’s better than the alternative. (Death, duh.)

So, for the sake of taking away a tiny twinge of the major taboo surrounding this corner of the medical world, here’s everything you never wanted to know about an ileostomy!

If you know what a colostomy bag is, think that, just attached to a different intestine. Mine connects to my small intestine, which is allowing my colon, which was resected during my January surgery, to heal. A colostomy sits on the left side of the body, the ileostomy generally sits on the right side. This is simple anatomy—the ileum attaches the small intestine to the colon, or the large intestine. The ileum is on the right side if your body, and the descending portion of your colon is on the left. So in essence, my ileum is helping get rid of waste before it has to pass to my colon, where it might irritate my surgery site.

Different types and locations of stomas.

I received a loop ileostomy because mine is temporary, and loop-style ostomies are easier to close. Because it’s a loop, it technically has two openings, but just looks like one. Put simply, they poked a hole in my belly, pulled out a piece of intestine in a loop, cut it lengthwise, and shaped it into the rosebud-like shape of a stoma. I won’t scare you with a picture of mine, but here’s a very nice, clean version of what one would never actually look like:

Stomas in real life look constantly irritated (but don’t typically feel like it!), and always have a big ugly red circle around them from adhesive. They’re useful but not cute.

An end ileostomy would catch waste at the very end of your small intestine – on the actual ileum, and just be a single hole protruding.

BASICS

Most people have told me that they’re surprised how small my bag is. I wish I’d had the same reaction – I’m constantly wishing it were smaller! My bag is 11 inches long, and goes from about belly button height to the top of my underwear line. I wear a drainable appliance. This means, when I go to the bathroom to pee, I can just empty the bag right into the toilet. This part, of course, stinks a bit, but once it’s closed back up, no stench! Plus, there are bag deodorants that really help cut down on stink while emptying.

Some people with ostomies (this is a catch-all term for colostomies, ileostomies and urostomies) choose a non-drainable bag.

Think of the intestines like a washer and dryer. The small intestine does the washing and processing, the large does the drying and finishing. Because waste that exits via ileostomy hasn’t been through the dryer, it’s very liquidy. Colostomy output is generally more solid, which means it needs to be emptied much less frequently.

Because of this, closed bags that just get tossed after one use are not realistic for most ileostomies. This means people with ileostomies (especially me) have many issues with dehydration. To combat this, I’ve been prescribed to take Metamucil up to four times per day. However, I have to take an extra hearty dose and have only a slight amount of water mixed with it, then wait an hour before eating or drinking anything. It’s disgusting and time consuming. I did this a lot at first, but I’ve since figured out how to better control my dehydration with the right foods and liquids. Memes about truckfuls of Gatorade have now entered my world, thanks to the cancer internet.

CLOTHES

Unfortunately, yes, wearing clothes is tricky. I’m able to hide it in most situations, but occasionally get over-confident and end up flaunting my bloated bag to the public. It’s sneaky… I can put something on that looks great after I’ve just emptied the bag, but as soon as it starts to get full, it can become VERY obvious in the wrong pants. Luckily, that’s only happened a handful of times.

A few times, I’ve been brave enough to just get over the shame and let the bag show. Here’s me at a concert where we miraculously ended up in VIP because I’d emailed the venue about a reliable place to sit beforehand. So, I half wanted to make sure I had some “sign” of cancer showing, since I don’t have the proverbial bald head and am paranoid about people thinking I’m faking cancer(!), so that they wouldn’t think I’d been lying, but also half wanted to just wear the damn outfit I wanted to wear.

Swimsuit season hasn’t quite come around yet, but it’s scarily close. I’m planning a beach vacation for later this month, and am still working up the courage to just sport a bikini and the bag. So far, I’m relying on one-pieces and cover ups. But I think when the time comes, I’ll just get a wild hair and go for it. I’m too unabashed and too bikini-inclined to be relegated to full coverage! There are so many things cancer has taken from me, and I’m determined that my prized swimsuit collection won’t be one of them! (Rowan, please remind me this post when I’m crying in the mirror in Mexico and not wanting to go in public.)

I will likely have the bag for about half the summer, so somehow or another, I’ll have to figure out summer wear. Winter is really easy with sweaters, hoodies, leggings and jeans. But summer...oof. I’ll let ya know. I do have a couple of ostomy belts, including a Stealth Belt, which act kind of like custom-fitted Spanx to make the bag smoother and less noticeable, but they require me to wear my bag sideways, which I just don’t enjoy much.

Speaking of swimsuits, yes, you can totally swim, bathe and shower with an ostomy bag. For mine, I just have to put a little waterproof sticker over the tiny “vent” that’s supposed to help release gas from the bag. And I’m good to go! You can also shower without the bag on during changes, see the next section.

Sideways is an option, but it’s not as east to empty, and always feel suspicious that it’s burning my skin this way for some reason. Here you can also see the scars from my surgeries. Also, usually the part I’m holding with velcro on it would be tuc… — Sideways is an option, but it’s not as east to empty, and always feel suspicious that it’s burning my skin this way for some reason. Here you can also see the scars from my surgeries. Also, usually the part I’m holding with velcro on it would be tucked into the piece above it with another velcro closure, just exposing it here to show how draining works.

MAINTENANCE

Keeping up with an ostomy is a breeze on most days. I would say a solid 95% of the time, it’s completely out of sight, out of mind. If it’s full, I empty it when I’d be peeing anyway. If it’s not doing much, it’s not a thought.

Howeeeeeever

On every third...or fourth or fifth day, depending how lazy I am, I have to change the appliance completely. Both the integrity of the bag and the adhesive on the wafer start to wear down by day four, so it’s pretty important to keep up with. I’ve gotten changing the bag down to a pretty good routine. Here’s a quick video, sorry for my unflattering faces of concentration.

Heads up: this video starts off very fast, so if you’re not prepared to see a stoma (or a bad quality vertical video) don’t watch!

Usually, I’d take a shower in the middle of this video after removing everything. It’s good for the stoma to be exposed to water and it feels so nice to be free for a bit! But for the sake of this video, I just did it in one go.

The stoma is kind of surprising. Again, it’s really just a piece of my intestine sticking out of my body. On one hand, it seems like the kind of thing you’d have to keep surgically clean, take very close care of, and be very wary of germs around. But, my doctor told me to pretty much think of it as – you guessed it – a butthole. With waste constantly coming out around it, there’s no semblance of sterilization around the thing. Of course I clean the stoma and surrounding area during changes, but it’s nice to know I’m not going to get any sort of infection by mishandling this big hole in my body.

There are several essentials for a bag change:

Wafer (sticky thing that attaches to your tum)
Pouch (bag, fancy talk)
Adhesive remover
Paper towels! (Many ostomates are probably cringing at this, but my ostomy nurse recommended them over anything and they work SO WELL)
Barrier supplies - for me, this means Marathon ointment and stoma paste
Barrier ring
Gloves

My giant hand for scale. See post-cut wafer in back.

Wafer close-up before cutting to fit from the middle.

First, I use adhesive remover to take the wafer off. I then clean up the area with a wet paper towel. Usually, I take a shower. After drying off, I cut out the shape of my stoma in the the wafer. Some come precut, but my stoma is of course an abnormal shape, so I use custom-cut ones. Then, I prepare the area around my stoma (the peristomal skin) to be re-stuck.

Nowadays, I’ve finally found the perfect combination of products. While barrier wipes and sometimes stoma powder are very commonly used for this step, they just didn’t cut it for me, so I’ve moved on to Marathon ointment. It’s a skin dressing for irritated skin (which is the peristomal skin’s constant state) that lasts through anything. I knew it was prohibitively expensive, so I didn’t try it for ages until I realized it was covered by insurance! Since discovering this, I’ve had pretty smooth sailing. It’s the purple stuff you see my apply directly to my skin in the video.

I apply Marathon ointment and let it dry up. It’s a really cool texture, it almost hardens on skin. After this is done, I put gloves on to adhere the barrier ring to the wafer. The barrier ring is another protective layer along with the ointment to cut down on leakage, which seriously burns skin. When I’ve molded the ring perfectly, I add stoma paste, it’s kind of like “caulking” for the system and it works great.

Finally, I carefully place the wafer onto my skin using the mirror. It’s super important to place it right so that no skin gets exposed as it will burn. Then, I press on the wafer as hard as I can for about two minutes to adhere everything, then rest both hands over it for about five minutes to warm up the adhesive and make sure it sticks. At last, I attach the bag with an easy click, and I’m done!

TROUBLES

In the first few weeks after surgery, I had major issues with this damn stoma. Because of its abnormal shape, my stoma was causing leakage to the peristomal skin. The burns are excruciating – think an open blister with acid continually poured onto it. Essentially, that’s exactly what happens as highly acidic contents move through your system. The stoma is fine, since it’s an intestine and built to handle acid, but your skin is most definitely not.

Figuring out a solution was absolutely one of the most frustrating experiences of my life. The tiny window you have to treat these wounds while the appliance is off is very stressful. I generally only change my bag first thing in the morning when nothing is coming out of it, as I haven’t eaten in many hours. But during these horrible bouts of pain where I was desperate for relief NOW, I was forced to change my bag on the fly many times. This of course, resulted in a very active stoma during changes, making them sometimes drag out for hours of torture. I tried so many products and solutions to treat the burns. But the peristomal skin is so sensitive, and traditional products can’t be placed under the wafer area as it won’t stick. (If one more person recommended Vaseline, I was going to lose it.) I can’t even use regular body wash on my stomach as it may leave residue that will affect the wafer.

Finally, an ostomy nurse came to my house and recommended a product called Domeboro for rashes to help treat my burns during changes. The product was a rinse, and it felt absolutely amazing and soothing as he dripped it on and let it soak in. Two days later, my burns had vanished and I felt SO much better! I am forever grateful to Jacob the ostomy nurse from New Orleans. Since then, I’ve gone back and forth with irritation, but have overall been out of the woods and smooth sailing, ostomy-wise.

Ok, so what did I forget?

It still sucks. I still hate it. I wish I didn’t have it and I’m not looking forward to its scar. But it is what it is, and I’m glad it’s not as horrifying as I’d imagined. I’m happy for the increased compassion it’s brought out in me surrounding things like disabilities and invisible illnesses. If I didn’t address anything, it most likely wasn’t due to some attempt at modesty, so ask away in the comments!