My best furrend is my Mommy.

Heer I am cuddling with her after she got home from beeing in the hosspittul for 38 days. 

Soon Mommy is having anuther surjerry and I'm gonna let her tell yoo why cuz I kant reely explayn it rite.  But no, it's not cuz I wuz dancin on her tummy the other nite!  -- Echo


My Medical Odyssey:  An Ileostomates' Story
by Echo's Mommy

I can poop on my toes.

Not everyone can say that. I'm not necessarily proud of it, although I do admit to a certain childlike fascination with it. I mean, ask any kid...poop is funny. But it took a long time to get to this point.  I know Echo has shared some of my story, but up to now I haven't let him explain it all.  It's not something he can really comprehend.  And it's not something that's often discussed in "polite" conversation.   My friends, this is the story of my ileostomy. 

As you may know, I had a gastric bypass in early November 2007. Despite my surgeon's best efforts I developed a severe abdominal infection that perforated my colon. I was severely dehydrated and septic...had peridontitis...and worse yet, part of my colon was damaged beyond repair from what they suspect was a nasty bacteria called C-diff.  Why it happened we still don't know but we think the antibiotics I received during my surgery caused an imbalance in the kinds of bacteria that normally live in the gut which allowed the C-diff to grow dangerously unchecked.

It was a week after that bypass;  I felt very sick.  I went to my surgeon's office and they immediately wheeled me to the ER.  Within hours I was in surgery.

I spent the next 12 days sedated in the ICU. 

When I woke up I was mad that I'd missed the last NASCAR race of the season.   But then the details of what happened to me began to emerge and I suddenly didn't care so much about the race.  My surgeon came in and told me that he had to remove about half my large intestine because it had been so badly damaged by the infection.  In order to allow the remaining colon time to repair itself he had created an "intestinal diversion" so that my small bowel was re-routed to an opening on my stomach called a "stoma". And that stoma would empty it's contents into a bag on my stomach. The official name for it is an ileostomy.

He told me it was temporary and at first I thought he'd be fixing it before I was discharged from the hospital. But no, he said I had to heal up first and lose at least a hundred pounds before it could be reversed.

I was stoned on a lot of morphine but it didn't take long to grasp what he had told me. And I was horrified beyond words.

I cried. A lot. I couldn't look at it. When I was discharged to home I felt lost in a very strange world. I felt like damaged goods. And the blame I placed on myself was a crushing heavy burden.

Managing this "stoma" was like the elephant in the corner of the room you simply cannot ignore. It consumed me. Had my husband not stepped up and become my main Wound Care and Ostomy nurse I would have laid down and died. Figuratively, he carried me when I could not walk. I'd lay on the bed with a pillow covering my face and tears rolling into my ears when he had to change my bag.

Echo and Tenny were understandably curious but they somehow knew to keep their distance during those times. 

I was literally grieving. It was incredibly difficult to manage in those early days. The sight of it...the smell...the frequent leaks. And since everyone's body is different it took A LOT of trial and error to find just the right products and bag application techniques.

My first day out in public with an ostomy bag on my belly was a scary thing. I was so certain everyone could tell. They'd hear a little plastic rustling and instantly know my disgusting little secret. I felt if I moved just the wrong way I'd coat the room in an embarrassing explosion of poop.  The truth of the matter is, if someone doesn't tell you they have one you'll just never know.  But it always takes a while to grasp that at first. 

Fortunately there's a terrific website and message board for people with ostomies.  The United Ostomy Associations of America It's packed with information and a message board.  I love message boards but it took me a few weeks just to screw up the courage to look at it. That's where I finally read three very little powerful words.

Bag or box.

Yep, that's pretty much the bottom line. Get busy livin or get busy dyin. We all have that choice.

Slowly I came around to accept what had happened. I stopped feeling sorry for myself when I realized that at any given moment in America there are half a million people amongst us with an ostomy. (Colostomy, urostomy or ileostomy.) Some temporary, some permanent. Cancer, ulcerative colitis, Crohn's Disease, knife wounds, gunshots, diverticulitis, perforated colons, soldiers with abdominal injuries from IEDs...all these things can lead to an ostomy. For some the ostomy has freed them from pain so they can lead a completely normal and productive life.

And there's a lot of children growing up with them too.

Suddenly, I had a whole new respect for this thing. And it wasn't long before I joined the ranks of ostomates who've named their stoma...mine is called Mike Rowe. (Cuz it's a Dirty Job. ) Thanks to an episode of the Comedy Central show "Lil Bush" it's also nicknamed the "puddin hole". I know I've just grossed a bunch of you out, but seriously if you can't find some humor in this you're going to be very bitter and sad. Naming your stoma is a kind of a rite of passage and a sign you've been able to move on and find acceptance.

Even Echo and Tenny have participated in the care and maintenance of "Mike Rowe".   Like clockwork one of them always wakes me up around 3am.  I'm very grateful for this interruption because my bag often fills with gas overnight despite my best efforts to avoid gas producing foods and chewing Gas-X at night.  If the bag overinflates it can literally split open or pull the adhesive wafer loose which results in one incredible mess.   If Echo doesn't wake me, Tenny does.  It's almost like they trade shifts and it's yet another way these furry souls continue to amaze me. 

And while they sometimes find the "hurty" spots when walking on me, they always manage to avoid stepping on my bag and stoma. 

Even though I had about the worst complications you can have with a gastric bypass, I don't regret it at all. I don't blame my surgeon; his skill saved my life.   I've now lost 134 pounds and I'm less than 50 pounds from my goal.   Besides saving me from the ravages of morbid obesity, recent tests show my remaining colon has survived it's ordeal and is ready to get back to work. 

So on August 11th I'll be back in the hospital to have my ileostomy reversed.  They're taking as many precautions as they can to prevent a recurrance of an infection.   Echo and Tenny's Grammy, who has been a nurse for a squillion years, will be here to hold everyone's feet to the fire.  (Including mine!)  I really look forward to having "indoor plumbing" again.  My surgeon will also repair a sizeable hernia I was left with and remove as much extra skin from my belly as possible.

In a way I'm going to miss Mike Rowe. It taught me a lot about myself and how I look at the world. Take for instance those fashionable "Hollister" t-shirts. I see those now and chuckle. One of the leading maker of ostomy bags is a company called Hollister.

If only Coach would get into the ostomy market, why, I could be a fashionista...

If you think you could never endure something like what I've been through, well, I used to think that too. Ostomies are just a punch line to a gross joke for most people. But no one can tell a poop joke quite like someone who's wearing a bag. I've learned I'm stronger than I thought. The human sprit and body is incredibly strong and remarkably adaptive.

I've also become very sensitive to the needs of ostomates.  The medical supplies are incredibly expensive and I'm fortunate to have really great health insurance.  I have no idea how the uninsured manage this.  I really don't.  There are occasionally moves in Congress to cut Medicaid funding for ostomy supplies.  Some bean counters would like to approve covering just a certain small list of supplies, but this is not even close to being a "one size fits most" kind of thing.   Insurance needs to cover ALL supplies because every body is different.   I literally tried every bag, seal, paste, adhesive and tape on the market just to find a routine that I could rely on not to leak for 48 hours.  (Some days, not even that!)  Moreover, an ostomy bag is most appropriately referred to as a "prosthetic" because it replaces a missing body part. 

I'm hopeful we'll soon vote into office leaders and legislators who will work to make health care affordable and accessible to everyone so nobody is forced into deciding between buying medical supplies or food.  

Easily this has been the hardest thing I've ever done and while I wouldn't wish it on anyone I want you to know that if it happens to you or a loved one...you can get through it.  It's not the end of the world even if it does feel like it for a while. You are all stronger than you know...