Hmmmm. Smuggling Penguins…….

I just want to present that title to anyone who is the not-so-ecstatic recipient of a colostomy and let you consider the concept for a moment until you GET it. If you need a hint, it would be something along the lines of broccoli for dinner.

Ah haaaaaah. See, you DO get it.

Shall we let the mere mortals in on it?

You have to be a top-shelf comedian for Smuggling Penguins to be in ANY way funny when it happens to you. It’s pretty hilarious to anyone who has no potential for it, but for those of us who wear our intestines on our abdomens, it’s your basic horror.

It starts with enjoying some food you used to really like and then, at some ARBITRARY later time, your colostomy bag begins to do those GoodYear Blimp imitations and next thing you know you’re adjusting your shirt, your sweater, wishing you were in maternity clothes (even the guys) or grabbing that baggy vest you keep in the car for such occasions, for you appear to be Smuggling a Penguin beneath your shirt. Thy Pouch Hath Ballooned. And while stabbing said Penguin with a fork may be the first thing that comes to mind, we quickly learn that’s NOT a good solution.

Officer, seriously, it's not a penguin

What IS the solution? This Penguin must be burped and HOW are you going to pull THAT off during a party? Beats me. Pray that there’s an exhaust fan in the bathroom? This can’t be remedied by sitting on a soft couch.  Ideally, you are alone, driving in your car, on a balmy enough day to have the windows open when it hits. Give me points, I’ve DONE it. Of course, this also ONLY works for those of us who sport the “Lock and Roll” pouch closures that can be handled with one hand with no fear of that wretched little clip falling down under the gas pedal.

Sure, there are those spiffy little charcoal filter things built into some pouches, but they never did a THING for me. You see, me and my stoma, we’re just all KINDS  of special.

My FIRST surgery saw me come through with no colostomy (it was an adhesion strangling my small intestine) My SECOND surgery, a mere 3 weeks later, when they discovered it was a colon cancer tumor now blocking ANOTHER part of my LARGE intestine, ALSO saw me come through without a colostomy. It was that pesky THIRD surgery; a mere 5 days after the second one, when the intestine resection BLEW apart, that gifted me with this THING on me. This was way down the list of things to try to comprehend as I crawled back from a week and a half of deep sedation, repeated trips to the OR to wash out my utterly contaminated abdomen, residing in ICU on a ventilator in restraints, being relieved of my gallbladder as it crapped out in the middle of this, and contracting C-diff. Once I had two functioning brain cells to rub together, resistant was the response of choice.

You have to understand, I had taken up BellyDancing at the age of 49. I’d been teaching and performing for years.  I just wasn’t getting all chummy with my new friend here. I was already disregarding some of the cheery “Life with YOUR colostomy is SO much FUN” MarketingMaterials as MY stoma simply HAD to be OVAL and not ROUND. So I had to master templates, curved scissors and cutting an OVAL hole in my colostomy barrier. What unbelievable fun.

I believe in giving credit where credit is due,  and it was Eliza Wood Livingston, in her book “Living with Colon Cancer, beating the odds” who presented the notion of NAMING her stoma STELLA. I shamelessly STOLE it immediately as ANYTHING that would make me laugh about THIS was a good thing. Suddenly to be able to bellow: “Stella!!!!! Knock it the hell OFF!!!!!” when she would INVARIABLY need to ‘go’ while I was taking a shower (and I swear, she aimed for my foot) just took the edge off.

And as I said, Stella was SPECIAL. First off, she’s a high, TRANSVERSE stoma. Listen to me – a connoisseur of intestines. My cancer was hiding behind my stomach, so when I was DE-sectioned after being RE-sectioned, Stella wound up popping out of a hole directly below my left breast. What this MEANS is that what I eat only makes 2/3 of the trip that it used to. Seems the LOWER colon is where we deal with roughage and to put it mildly,  Stella doesn’t DO roughage – not even well-cooked brown rice. Ouch. And this leads to Stella’s being busy ALL……DAY…….LONG. I tried to teach her a little self-control, but without a sphincter, it’s pretty hopeless.

Yes, yes, I heard tales of folks whose stomas had a SCHEDULE. Sometimes so much so that they could just roll up that pouch and tuck it in their waistband once the morning ‘business’ was done. Not Stella. Busy, busy, busy.

But over-achieving Stella decided that that wasn’t nearly special ENOUGH. One day, months after all this surgery, I looked down at my de-apparatused self ready to hit the shower when I saw this insane BULGE. omg. WHAT is that???? I was tearful and shaking as I went for my appt with my Wound and Ostomy nurse, Gail. (who has become one of my dearest friends and such a champion through all this) She gently felt around while I was standing up and pronounced that she was afraid it was indeed a HERNIA. Next visit with my then surgeon confirmed. This led to WEEKS of finagling with elastic belts with holes cut in them to try to control the hernia before we could get the proper one manufactured for me.

During that time, Stella figured that since she’s SUPER special, since she’s one of those rare intestines that ever got to see the light of day, she’d try one MORE trick……she PROLAPSED. I’d been used to seeing that shiny, bright red, ‘rosebud’ as some of the MarketingMaterials referred to stoma-ness and here I was, once again heading for the shower, staring down at Stella doing Penis Impersonations. Absolutely HORRIFYING. “Stella, STOP THAT!!!!”Seriously, I have never had penis envy and I sure wasn’t looking to grow one now.

The HomeCare wound and ostomy nurse was coming later that day and tearful and shaking, (this was getting to be a frequent occurrence with me) I told her what Stella had ‘done’. She smiled knowingly and launched one of her favorite lines: “SO. Your stoma scared the SHIT outta ya!” Yeah, you might SAY that.

I was advised that should I ever NOT be able to get it to go back in, or should it CHANGE COLOR, to get myself to an emergency room. That was NOT particularly  comforting advice.

So now I have a HERNIATED, PROLAPSED stoma and my hernia BELT sports a Prolapse Panel. For one who had ceased wearing a bra for a long time because I couldn’t stand the elastic around my rib cage, a 4” wide, stiff, heavy, serious elastic BELT, with a massive Velcro closure, and a panel over Stella’s head to help her behave, worn around Stella’s equator, was a serious drag.

Stella's Corset

In the MarketingMaterials that the very HAPPY ostomy suppliers send us, the model stoma is always a BARBIE stoma. Perfect, plastic, with a symmetrical three-lined ‘mouth’. It never prepares us for the Jim Carey-esque rubber faces we come to expect from STELLA……or the barnyard NOISES.

Stella being all dramatic

Another long-time wound and ostomy nurse, the Aunt of a friend of mine, offered her wise words to me on the phone that there is no greater obstacle to ACCEPTING one’s colostomy than ANY suggestion that it might be TEMPORARY.  I have to admit that I’m in that category; however, Stella has been somewhat like that friend who moves in with you ‘just until they FIND a place’……and is still there a YEAR later.

I’ve been told all along that stomas have no feeling of their own. I BEG to differ. Even the explanation that any soreness I’m feeling is the skin AROUND it certainly doesn’t cover the ‘Ow, ow, ow!’ when that brown rice was working its way through. Stella has also had a hard time with ostomy barriers. They’re fairly rigid and adhered to my skin. However, the skin MOVES, especially when pushed around by the elastic belt connected to a rigid hole that goes OVER the pouch and presses down on the barrier. This can make for a very cranky Stella. No feelings- how absurd.

the pushy hernia belt ring

So after months and months of trials and errors, Gail came up with the StellaStole. After trying all manner of stick paste edges and oddly cut barriers, she came upon a mixture of Adapt Paste and StomaDust that can be mixed no more than a week ahead and kept in an airtight jar. It’s QUITE the production, but if someone reading this has a SoreStella, it might be a real plus.

A hefty squirt of Adapt paste goes into the jar (enough for two collars). That is then generously dusted with Stomahesive Powder and they’re mixed together with a tongue depressor. I’m convinced that Adapt Paste is the Third Substance. WD40, Duct Tape and Adapt Paste. If it dries in contact with skin, a jackhammer is required to get it off (or mayb WD40). If it meets up with liquid for any length of time, it becomes a gelatinous mass of weirdness that makes rubber cement look civilized. Hence the StomaDust to calm it down.

So the two substances are mixed with the tongue depressor in the jar and left to ‘cure’. Adapt Paste has a lot of alcohol in it and frankly smells rather like rum. Basically we’re changing the texture to something a bit like cookie dough. But this is still Adapt Paste so DON’T TOUCH IT without dusted, gloved hands.

Ostomy Oobleck, Adapt paste plus StomaDust

This is what happens at ChangeTheBarrier time. Enough is scooped out to roll into a snake to go around Stella’s ‘neck’. This must be done on StomaDusted exam gloves, or everything’s going to get stuck together. Around it goes, the edges are pressed down and the barrier (artfully cut in the perfect OVAL) goes over it. Most of it should be up around Stella like a turtleneck, but enough needs to be under the barrier to keep any ‘output’ from getting under the barrier. The  hole for this is cut a good deal bigger than the stoma.

Stella in her barrier and 'stole'. Just HAD to blow a bubble for the camera....

As special as Stella is and as much as she does impersonations of all KINDS of strange things, this has worked better than anything we’ve tried.  And we did try a brand new style of barrier that isn’t cut, but is stretched with your fingers to the right size and shape and which FELT terrific, but just about killed poor Stella. Trust me, you don’t EVER want  to see your stoma doing THIS.

UNhappy Stella!

It was after THAT fiasco, with any confidence that I would ever learn to manage a Stella just blown to bits, that Gail brought in a StomaSpecialist for one of my visits with her. This woman was GREAT. There is basically NOTHING that a stoma can do that can scare her. She explained how, since stomas are MOST often hiding in the pouch, we never see the calisthenics they go through when readying to eject a load. There is astonishing swelling, and shape-changing, and sighing and snorting, all of which is totally NORMAL. As this woman left the exam room and I thanked her very much for her assurances…….Stella let out SUCH a Bronx Cheer (pppppfffffffttttttt) that the three of us just LOOKED at each other for a second before we cracked up. Stella, how rude. (beautifully timed, but RUDE)

I MAY be less than a week away from bidding Stella adieu. Or I may not. With hopes of being free of her last April, then perhaps June, then how about September, then maybe December and now January, I wonder if I would be having feelings that I’m going to MISS her if she just hadn’t been QUITE so spectacularly SPECIAL.

Respect the Stella

 Although ‘reversing the colostomy’ was originally the ONLY reason I was to need ANY more surgery, I’ve already been back in the hospital for 40 days in June and am facing a seriously MASSIVE surgery to rid me of a six-month open HOLE in my belly, remove a section of my liver if the spot on it turns out to be malignant, and oh yeah, IF all goes easier than expected, maybe we WILL have the time and energy to off Stella.

When we first discussed the enormity of this surgery and the priorities, the WORST thing in the world I could think of would be waking up to Stella’s STILL being there. However, the wound care has been SO horrendous that just losing THAT part of my daily life will be a huge plus.

But I have all intentions of expecting the best, and I WILL be decorating that ‘final’ pouch

Farewell PartyPouch

Added 1/23/2012 – The surgery on 1/6/2012 was a spectacular success, the party pouch gave the entire OR staff a good laugh and I am all back together sans Stella. 20% of my liver was removed with the tumor cleanly in it, all lymph nodes were clear as were the margins of all the intestines that were re-sectioned.  It took 2 top surgeons 6 hours, but I’m back together and cancer-free. It’s been just fascinating to watch my intestines find their way back to functioning after over a YEAR of Stella calling the shots.  I have a lot of recovering to do (not only from THIS surgery, but from the entire year), but I feel like I’ve been given my life back and I want to manage this recovery really well.

I do hope that folks will pass this blog on to anyone you know who is coming to grips with an ostomy or deals with folks who are. I wrote this mostly for me, as an exercise in Finding the Funny in an initially horrifying turn of events, but more so to do for others what Eliza Livingston did for me, presenting the first Funny when I needed it so badly.