Hi, I'm an ostomate. What is that you ask? A person who has an ostomy. I'm sure there are many of us around, but since ostomies are generally private, we don't talk about them.

Let's change that. I'm a beginner ostomate, and my life has just taken several sudden and traumatic turns for the worse, so I'm really counting on all of you to read these posts with lots of love, grace, and forbearance in your hearts.

In case you're like me and didn't know anything at all about ostomies, here's a crash course. There are 3 types: 1. A colostomy is where your colon is routed to the outside of your body and your solid waste is emptied into a bag adhered to your abdomen. 2. An ileostomy is where your small intestine is routed to the outside of your body and your waste is emptied into a bag adhered to your abdomen. The waste is dark and runny or the consistency of applesauce because the colon is no longer being used. This is what I have. 3. A urostomy is where your urine is emptied through a stoma on the outside of your body and emptied into a pouch adhered to your abdomen. Stoma is the word for the opening created to allow the waste to exit your body. 

Here's a bit about my life as an ostomate. It may be nothing like someone else's experiences with surgery, ostomies, cancer, chemo, meds, etc. but it's what I'm living. I'm not an expert, just a person who is newly inducted into this club. I may be only a temporary ostomate or a permanent one. I'm trying to brace for all the bad news these days while hoping for the best. 

Waking up from surgery was a also a multi-layered waking up to several new realities. I woke up to: 5 laparoscopic incisions (like when I had my gallbladder removed), 1 bikini incision (like a C-section scar), an amputation (loss of an organ--my rectum, and a partial organ--1 1/2 feet of my colon), a disability (maybe not the right word, but an ostomy is definitely a life-altering and non-normative way to exist in the world), a college course assignment in ostomy care (I came home with a table full of gear and an encyclopedia to read about my new "normal"), a frightening new diagnosis (stage 3--still seems surreal), a part-time nursing gig caring for myself (measuring my output, recording my output and meds, changing my appliance twice a week), and one of the grossest craft projects as my new hobby (measuring my stoma and cutting the adhesive wafer so it fits just right). All of this is rectal cancer life.

As you can guess, my executive functioning has been a tiny bit diminished since the surgery. Things that were automatic now take lots of thought and re-learning. The ostomy has changed how I well I chew my food, what I eat and drink, what clothing I wear, how I use a seatbelt, how I use a restroom, how I think about my digestive system, how I sleep, how I shower, how I leave the house (I pack a change of clothes and two ostomy supply bags for myself) and more. It's a whole new way of being. And it's not much fun. I'll make it, but it's not fun.

Thank God for the many inventions that make this lifestyle more palatable, functional, and discreet. Thank God for all the kind-hearted nurses and doctors out there who are willing to take care of ostomates. Thank God for my family and friends who help me change my appliance. But it's still really hard. 

The picture of me above is the G-rated version of ostomy life. That bag you see is actually a waterproof cover I wear over my bag when I shower. That nice floral bag is covering many indignities. I have to wear my ostomy bag 24/7 and empty it every two hours. My output has been so high that I take 16 pills daily in order to slow it up. The risk is dehydration. 

If I'm slow to respond, understand, or make sense, it's because my brain is on overdrive trying to be a successful ostomate.

Here's one of my favorite ostomy adventures, so far. I'm guessing there will be many more:

The other night my output had turned completely red--like a raspberry smoothie. I thought I was bleeding. I tried to remember all I had eaten that day and couldn't remember one single solitary piece of red food I had put in my mouth. Since I'm on a soft diet, I eat mostly white carbs and dairy. 

My friend, who was downstairs at the time, came up to help. I also called my nurse friend who lives nearby, and she rushed over to look at my stoma and output. I also called my nurse friend from church in a panic. I tried calling my ostomy nurse, but of course this was happening after hours, so I got an answering machine. Next, I tried my surgeon's office which routed me to the hospital after-hours phone operator. Surprisingly, as soon as the operator heard I was Dr. M's patient, he connected me immediately to my surgeon without even asking what was going on. Kudos to Dr. M for taking such good care of his patients!

Dr. M asked me if the bleeding was coming from between my stoma and the surrounding skin. When I told him it was coming directly out of my small intestine stoma, he said it sounded like I had an upper GI internal bleed and I would need to head to the Emergency Department for a scope. I was so freaked out at this point, that my non-functioning brain finally remembered I had eaten beets for dinner! BEETS!! Beets turn your output red. Dr. M and my friends laughed so hard. I have never been more relieved in my life to have eaten beets. 

Friends don't let friends with ostomies eat beets. Also, you don't know who in your life is an ostomate...so be kind to people.