Things have taken a turn for the better. I feel stronger. I am focused on what I have, not what I have lost. And what I have is HOPE.
The shift emerged in a rather unusual way. In a desperate attempt to eat, with no appetite and bouts of nausea, I tried medical marijuana hoping it would help. It didn't, but it was fun. Then, in the middle of my high, I had a "leak." A leak is when your "output" oozes out of your ostomy bag.
Luckily my daughter Ling was with me but she had yet to meet my ostomy bag or my stoma.
A stoma is part of your small intestine. When you have an ileostomy (which I have), the surgeon makes a hole in your stomach, pulls part of your small intestine out of it, and loops it into a little red, active volcano of sorts.
not my stoma
photo courtesy of Stephanie Shaner
From day one, I had a difficult time adjusting to my stoma and the ordeal it created. Everything about it was challenging - the appearance, the functionality, and the labor intensive care.
Changing the bag is still awkward for me. There is measuring and math and cutting and cleaning involved. There are powders and adhesives and the whole time you're working on it your stoma is actively at work - gurgling and erupting.
With daughter at my side, we both failed miserably at cutting, and after lots of spills and giggles and illogical errors and moments of mindlessness, we were down to one bag (at $5.00 per bag).
Before we attempted to cut the last bag, I talked to the stoma - told it to calm down and it listened. Then we laughed some more before getting down to business. Somehow we got the bag in place, with a solid adhesion to my skin.
I woke the next morning panicked, realizing I had no remaining bags and didn't know where to get them. The solution was simple, I googled ileostomy care and found dozens of medical supply companies. I called the first ad I found and when I rambled to the operator about how much I hated my bag she listened, asked me why, and then suggested samples of other products.
Two days later it was here - my new ostomy bag. It's adorable. I now feel like a kangaroo with a cuddly pouch instead of man with a long, limp dick dangling down my thighs.
Note the comparison...
My appetite improved on day one. The pouch is flesh toned, you can't see your stoma or what it's producing. The original, elongated bag has a clear front. You can't escape the visual remnants of your last meal.
Some people give their bag a name but I think that's silly. It is, after all, just a bag - or in my case a pouch. But I have named my stoma. My stoma's name is Harold. I named it after my father (his name was Roger but I called him Harold - makes no sense, I know). My father was notorious for making loud, inappropriate noises at awkward moments and so is my stoma. However, my new pouch has calmed Harold down. So far, if he's acting up, I don't hear him.
I honestly thought, with the "old bag" I'd never leave the house but now that I have my pouch, I feel liberated. It's easy to change, clean and hide.
And here is the best kept secret about having an stoma - food doesn't stay in you long enough to absorb all the calories (or the nutrients, sadly) so you eat 100% guilt free. I've lost 20 lbs in 3 weeks. I'm starting to wonder if the painfully thin, fashionista women in my town are all secretly sporting stomas. I'm starting to wonder if I won't want a reversal after I'm done with chemo.
From the How to Care for Your Ileostomy booklet supplied by my doctors office, I've been given this important information:
Do NOT have sex with your stoma.
That statement had me mystified. What sick fuck would want to fuck a stoma? It was the first question out of my mouth when I saw my doctor, post surgery.
"Why did they have to put that in print?" I asked.
"Because people have tried," my doctor replied.
Apparently, it's a fetish. Please tell me none of you are into stoma fucking. And if you are, rest assured, this is my final stoma post. Harold and I will live the rest of our lives, privately and (thanks to the pouch) discreetly.
This is yet another challenge I have conquered. My will and heart prevails.
For a complete list of my ridiculous journey through cancer see CATSTIR