A farewell to bilbo baggins* (my ileostomy bag)

Dear Bilbo Baggins,
 
I’m sorry, and I don’t wish to hurt your feelings, but I never wanted you. When I was diagnosed with rectal cancer, I was quoted a risk of 10-15% that an ileostomy** would be required, which seemed low enough not to be a concern. Then, at my pre-op appointment, they had set aside 45 minutes with the stoma nurse, to prepare me “just in case,” and I got an ominous feeling in my gut.
 
Waking after the six-hour surgery, I immediately felt the right side of my abdomen and there you were. At the time, you felt like the worst possible outcome, a nightmare, even though my cancer had been successfully removed and you would probably not be permanent. Who wants to poop on the outside of their body? Who wants to have a bag connected to their abdomen?

And the pain—the pain was bad at the beginning and lasted a long time. I had to drastically alter my diet so that liquid stool would not pour out and cause dehydration. I, who loved all the healthy, high-fibre foods many people hate (vegetables with skins, kale, seeds, whole grains) had to eat only pureed soups and white bread and potatoes. I paid for cheating with extra bag-emptying bathroom trips at night, or significant fluid loss.
 
I named you right away, and that helped a bit. You were like a child I had to manage, a personality I had to soothe. Bilbo didn’t like that food. Bilbo was up three times last night. Having no sphincter at the stoma site, gas would make noise, sometimes at inopportune times; Thanks for your opinion, Bilbo, we’d say. If I had to excuse myself to empty the bag of gas or stool, I’d say I need to deal with Bilbo for a minute. Somehow, this personification helped me and those around me.
 
Having you, Bilbo, confirmed the kindness of people, something important to recall in these uncertain times. Friends and family made soups and breads, cored and peeled tomatoes so I could eat their sauce, pureed strawberries and strained the seeds, left out the onions. My husband even peeled grapes for me. Gradually, I was able to increase my diet and learn which foods would cause excessive gas or output, and people adapted their drop offs and menus.
 
But despite all that adjustment, you were maddeningly unpredictable. I’d plan my shower or flange*** change after fasting, to avoid a mess, and just as I was all clean you’d eject stool all over the shower (or floor, or a white towel). You’d come to life just as I was sticking on a new, fresh flange. You’d be full of liquid –for which I was not prepared– during the night, and whoosh all over the toilet and floor as I tried to empty the bag in the dark. And you smelled so bad! Stool universally stinks, of course, but your odour was next level. Don’t eat fish, said my handouts, don’t eat eggs. Avoid onions, garlic, spices, and gas-producing vegetables. A), ridiculous. B), honestly, it didn’t seem to matter. I found a “stoma bag deodorizer” which helped somewhat, but let’s just say I will not miss the constant air fresheners and scented candles, nor the need to close the bathroom door even when not in use, and leave the room whenever I had to express air from the bag.
 
I had a couple of young patients in my former medical practice with permanent ileostomies. They never complained; their surgeries had been for uncontrollable ulcerative colitis or Crohn’s disease, which caused constant pain and bleeding. Great, I remember thinking, when they got their colon-removal surgeries. Finally, their symptoms will settle. I never stopped to think what it would be like to deal with a stoma at sixteen, or twenty: body image is so very important,  sexuality is developing, poop is a taboo topic and friends recoil at words like “anus” or “rectum.” I ache for them now. I want to go back twenty years and take their hands and talk about the impact on their lives. I want to say I’m sorry, I didn’t understand. The pain, the expense, the embarrassment, the social impact, the stink, the activity avoidance, the diet limitations.
I just didn’t understand.
 
At the time, I was fine living snugly within my ignorance, as we all generally are (we don’t know what we don’t know). But if I must find a silver lining, it would be the near-vertical learning curve and new level of understanding I’ve developed.

Now, I’m facing surgery to have you reversed and go back to using my colon (I’m lucky enough to still have one), which has been on vacation for eight months. The large bowel won’t kick back in right away, which means I will likely be incontinent for a couple of weeks, and after that more prone to urgency and accidents. Such fun!
 
I’ll admit that even though you sometimes irritated my skin, caused poop explosions, or woke me multiple times in the night, I’ve become used to you and might even miss some aspects (eg. absolutely no constipation!). Overall, however, I’m not sad to see you go. I look forward to sleeping on my stomach, swimming without fear of equipment breakdown (hopefully I won’t need a swim diaper!), wearing clothes I don’t have to negotiate around the bag, and having my body functions tucked back inside. We women are not used to dangling external bits.
 
Thank you for your service, Bilbo Baggins.
You taught me a lot, but let’s not keep in touch.

 
 *with apologies to JRR Tolkien
**ileostomy: a surgically-created attachment of small bowel to skin, to allow fecal contents to skip the large bowel, rectum and anus.
***flange: the component of an ileostomy bag which attaches to the skin, allowing the stoma to empty stool contents into a bag. Also called a wafer.