I am currently an ostomate: someone who has an ostomy. My particular type of ostomy is an ileostomy: in the surgery that occurred exactly one month ago today, part of my small intestine, aka ileum, was brought outside (near my belly button), forming an opening called a stoma. Since most of my rectum had to be removed, to rid me of cancer, I now rely on the stoma to excrete my solid waste (which actually isn’t totally solid yet, when it’s in the small intestine). So, I need to always have an ostomy pouch to collect all the “output,” as it’s referred to. I’m going to refrain from posting photos of my stoma and pouch here — I still have several residual scars from the surgery and it just doesn’t look pretty. Instead, here are some generic images.

The stoma is a trip. I’ll always remember the first time I saw it, while I was in the hospital, and a stoma nurse assisted with my first “bag change” (every 3 days, the ileostomy pouch is removed, discarded, and replaced with a new one). It’s like this little pink alien being down there, moving around in its mysterious dance of peristalsis.

Emptying the bag isn’t too bad; you just definitely don’t want it to get too full, or the adhesive seal will start to come undone, which then leads to a messy situation. That happened to me just one time, early on, in the hospital, and I learned my lesson from that. Also, I’m finding you need to embrace loose, high-waisted pants with an ostomy bag. I’m still actually figuring out the clothes thing — I just ordered some special ostomy underwear from Ostomysecrets® (yeah … I know). I’m curious to see if that helps make things more comfortable.

The bag change, which occurs every three days, is a fairly complex procedure. I found early on that you need to do it first thing in the morning, when nothing is coming out of the stoma. You do NOT want any output coming out of the stoma, as you’re doing the bag change. The cute little stoma dance turns into a nightmarish volcanic spectacle … enough said. After removing the old bag, you need to carefully clean all the skin around the stoma. An important step is thoroughly removing the adhesive residue — you do this with a special adhesive remover product.

There are, by the way, all manner of products for ostomy patients. I’ve gotten multiple calls from a popular ostomy product manufacturer; they sent me a gift box of samples and everything. Makes sense — if someone is an ostomate for life, there’s quite a compelling customer lifetime value to capture. Now, the plan is that for me particularly, there isn’t an entire lifetime of revenue that ostomy manufacturers will extract from me, but just a mere three-four months. At that time, the ostomy is supposed to be reversed (scheduling and details still tbd).

Few more notes about the bag change process — after you thoroughly clean the skin, you may need to apply ostomy powder (like diaper powder) on the skin if it’s irritated at all. And then a special product on top of that. And then, you measure the stoma, and you carefully cut out a ring in the adhesive of the new pouch — it needs to be just the right size. This requires special curved precision scissors. And then, you fit the new pouch onto that. There is this additional “caulking” material you can apply, to really get it to adhere .. I generally use that, as well. The whole process takes me around 30 – 40 minutes, including prep.

The real challenge for me is the diet; I need to follow a very restrictive low-fiber diet. It’s unfortunately not a very healthy diet. No fresh vegetables are allowed, at all. Very few fresh fruits are allowed, with the exception of bananas. Anything with seeds (e.g. berries) or peels (tomatoes) are a definite no-no. So I end up eating almost the same thing every day: bagels with creamy peanut butter, bananas, non-dairy yogurt (vanilla only), oatmeal, avocados. It’s this sad irony that I am not able to eat most of the highly-touted cancer-fighting foods right now, like blueberries, walnuts, etc. The dietary restrictions are my least favorite part of the ileostomy experience, but I get the reasoning behind them: you need to avoid anything that might cause a stoma blockage.

Alright, well maybe you’ve learned a thing or two about ileostomies from this post! Feel free to ask me questions if you’re curious about any of this stuff.