Tuesday, October 1, 2013

Harold and the Pouch

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.

xo, MOnkeyME

For a complete list of my ridiculous journey through cancer see CATSTIR


  1. Yeah you! Glad things are looking up. Positive is good; laughter is good.

  2. Oh yes, there you are, making us smile at the most unlikely things. Harold? Really? My dad's name was Harold, how about that? His eyes were blue....I don't suppose your Harold has eyes. xoxo

  3. Well, live and learn. That's a new fetish I've never heard of before. Yowza. Glad you found an ideal ostomy bag and your spirits are lifting!

  4. dear Shannon,

    I am so glad you are managing Harold and the kanga pouch so well! and especially glad that YOU CAN! who
    coudda thunk it - a wonderful, giggly bonding time with your beautiful daughter over an oozy stoma and an uncooperative bag?! as always, YOU ROCK with whatever you are faced with. carry on and be proud, sister.

    much love and light to you, my friend.

    Karen XXXXOOOO

  5. Have sex with your stoma??? No, no, no,no,no ...eww ewww. I am afraid of having to get a stoma if I get any worse, but it is great that they listened to you on the phone. Who knew there are different stoma bags out there! It does look quite cute if that is possible for stoma bags. You could bejazzle it..ahem.

  6. You are amazingly FUNNY. I work with patients who have stomas and I used to feel the same way about them as you did. Now, well now they're just "Harolds" and rather fascinating in a "I can't believe this is an intestine" sort of way. I'm so glad you got a pretty pouch and it IS scads better than those clear ones. Hurry up and write the book dear. You are fascinating, witty and clever, aside from being stoma-slim... Just Jill

  7. If it does make inappropriate noises, just sing "Hark, the Harold stoma si-ings"!
    Of all the crazy fetishes I've heard of, that is the worst.
    I love how you see the humor in everything.

  8. You sound good Shannon. i can feel your smile and am glad. But now the image of sex with a stoma won't leave my mind. Thanks for that! Ha.
    Lots of hugs to you.

  9. You are hysterical! I'm surprised you haven't decorated it already! And get it ready for its debut at next year's Burning Man??

  10. As a nurse I have followed along your journey as it is helpful insight into the emotions of dealing with an ostomy of any sort. So happy that you have found a more user friendly bag--this is not one size or one type fits all. As you have learned, it is possible to live with an ostomy and adjust to what works for you. It is one of the MOST difficult body image changes to adjust to, and it is no surprise that you, Monkey, have adjusted with the same amazingly upbeat attitude that makes you so very special. You are no doubt helping many with your story, as it is of utmost comfort in any challenging situation to learn that no one needs to feel alone and that all these emotions and steps that must be taken have been experienced by others and that others have survived and thrived., May you be blessed beyond measure.

  11. Well done, Green Monkey! You are handling this fine!( I knew you would.)

  12. One step at a time. U seem to be following this advise that has been given to many of us. And ur steps are carrying u through ur journey it seems. It seems to be getter better and better every day. I am happy to see u making strides. Hope--what a beautiful word. An absolutely beautiful word. As always, prayers and thoughts for u.

    P.S. Sex with a stoma. That is just NASTY!!!! But not surprising. I have seen or heard strange behaviors. And this one is just disgusting.

  13. AWESOME!!! Hope is fabulous!!

    YOU are fabulous!!

    20 lbs in 3 weeks, huh? Hmmmmmm........

    So so so glad you're still you, wonderful you, strong and scrappy and determined no matter what is happening around or to you....you inspire me.

    Love you!!


  14. So glad you are feeling better. Still a sassy lass as always, stoma or not, determined to experience this on your own terms, giving plenty of giggles and laughter along the way. I am glad you are writing, documenting your very human and compelling journey, continues to inspire me on a daily basis. I love you sweetie, counting the days until we can dance around in the dust again, Love always, Inky

  15. So... it's safe to say, that unless your husband wants to "hop the fence", Harold is safe? Because honestly... I find the thought kind of gross as well. Scary what they have to put in print. (((HUGS)))

  16. You did it again...a big WOW here..... You continually go where others fear to tread. courage and lots of it. I want to be like you sum day....I did a bye bye prostrate art piece and burned it in the Temple. I thought of you when I was in the Temple.....love you

  17. Oh my dear. You have been through so much. My heart and hugs are always here when I read.

  18. I love your candor. I'm impressed with the new bag - or I mean with Harold. It's wonderful that just finding a better made product made everything seem a bit better. I'd like to personally thank that operator who listened and offered options. Thanks so much for sharing. You probably don't want to hear it, but you're very inspirational. You are!

  19. stoma fucking??? That never entered my mind! But thanks for the heads up in case I decide to experiment. My doctor never told me that....maybe he thinks I'm to old to even think about sex. You are one AWESOME Monkey Girl! Has yours farted out loud yet???? Mine sounds like gunfire or an old door creaking...either way we get a good laugh!

  20. So happy to see Monkey happy :-)

    I feel happy too.

  21. Three cheers for medical marijuana and the breakthrough it brought you! And three cheers for you, rising above yet another obstacle. You are awesome.

  22. Educational AND funny? How do you do it woman? And stoma screwing? Ew. JUST EW. I love the doctor's response tho' "Some people have tried it." Really? Doesn't it make you question our fellow man? Ick.

    I am so happy you are feeling better. Stoma aside, it's nice to *hear* your hope.

    Still in our prayers. Hugs and much love. xo

  23. Hey there. I have missed you. (I took a break from blogging and didn't know all this was going on!)

    I love the new pouch. (I worked in the field once upon a, so I am pretty familiar with stomas of all sorts.) It's cute and just looks better all around.

    I understand all the adjustments around this, though, hon. I have such a hard time around my teeth that I hate being out in the world. I know I will get bad looks at a minimum. So I really get it.

    You're always very brave.

  24. Thrilled to read that you are feeling better... not in my wildest dreams would I have thought anyone would use Harold in other ways... Some company sent my mother boxes and boxes of various bags. I ended up sending the bags she didn't like to FOW-USA. They send the supplies to underdeveloped countries who have no access to such supplies. That's food for thought later on. For now, I'm so happy you found a pouch you like and things are looking up!


Thank you for encouraging my JOY of writing. By reading and commenting you are feeding my soul, stroking my heart, and in the end...making me a better writer.

Thank You For Encouraging My Joy of Writing

Thank You For Encouraging My Joy of Writing

Shannon E. Kennedy


Photo by Joan Harrison