Just Chew It

Waking up with drugs dripping through my veins to stem off the pain from having my entire colon and rectum removed, I had many hazy conversations but have only vague recollections of the details.  Not the opportune time for an ostomy nurse to review all the “Do’s and Don’ts” of living with an ileostomy, but the gracious woman did leave a thick binder for me to reference once I was off the painkillers.

After leaving the hospital and re-reading that binder front to back several times, the rules became etched in my brain – avoid nuts, avoid raw vegetables and Chinese vegetables (OK, what the heck does that mean?   Is that broccoli? Carrots?  Zeesh.  I decided to err on the side of caution and avoid them all), carbonated beverages can make you gassy, as can drinking through a straw. . . Blah BlahBlah Blah Blah.

Being the compliant patient I am, I studiously watched what I ate & avoided my favorite thing to drink – carbonated water and my second favorite - beer.  Surprisingly, one item not on the list was shrimp, and I didn’t discover until eight months post-surgery that it is, indeed, difficult to digest.  This hard-learned lesson came after scarfing several jumbo shrimp cocktail the size of my fist at Easter dinner.  And I do mean “scarfing” because I was inhaling those suckers.  Thank goodness I stopped after two because I caught my uncle double dipping in the cocktail sauce.

The day after the infamous double-dipping-shrimp-scarfing incident, momma woke up feeling a little backed up, to say the least.  I felt progressively closer to having my intestines explode as the morning wore on because stuff wasn’t getting through the tight turn my intestines take to get out of my stomach wall.  After a few tense calls to the ostomy nurse, I painfully and carefully drove home from work to try the few suggestions they had to help pass the dang shrimp – soak in a hot bath, drink tea, and massage my belly.   By late that afternoon and yet another call, nothing was working so I decided it was time to head to the emergency room.

My appalled friend Heather got my kids from school so I could drive myself to the hospital.  She couldn’t believe that I was going by myself.  I never thought how that must sound to someone who had never spent the amount of time as I have in a hospital.  I’ve learned over the course of twelve years of a chronic illness that severe pain is really a solitary thing.  I have to admit, it wasn’t fun lying on my side across three chairs in the waiting room deep breathing my way through the waves of pain, but for me it wouldn’t have been any better to have a loved one watching my agony especially since I knew nurses would be there to care for me.

Later, after throwing up the awful solution they made me drink for the special x-rays I needed, the resident on duty told my husband, via my cell phone speakerphone, and me that my Crohn’s Disease had returned.  Really, it was my worst nightmare come true.  Even through the haze of painkillers they had finally given me, I was having my doubts about the diagnosis.  It felt like I had been clogged.  And none of my symptoms even remotely mimicked what I had experienced before having all my diseased parts surgically removed.

Fortunately, enough of that foul solution I had upchucked got into my system and dislodged the offending shrimp.  Who knew it was also a diuretic?   And soon the output from my stoma was flowing like a dam had burst.  And I suppose it had.  My poor little stoma was swollen and sore, but nonetheless in good working order again.  Unfortunately, two residents and one gastroenterologist had misdiagnosed me and scared the bejeebies out of me saying it was Crohn’s. Fortunately, my colon surgeon immediately fingered the shrimp as the culprit during an office visit days later.

The lessons I learned?  Shrimp and lobster are hard to digest.  Beware of any doctor not intimately familiar with ostomies.  Be more demanding of pain meds if forced to wait in an emergency room writhing in pain.  And for goodness sakes, chew my stinking food!

Over the 4 years since my surgery, I slowly introduced the no-no foods.  Carbonated beverages were my first.  Really, I could tell no difference in gassiness.  Popcorn was next, and I was very slow about that.  Nuts followed and then my beloved carrots.  Last was the dreaded shrimp.  I’ve learned that if I chew my food really, really well, then I can pretty much eat anything.  Except for some raw veggies which I don’t think I’ll ever have the nerve to eat.  Nope.  Raw celery & broccoli ain’t happenin’.

Now for crying out loud fellow ostomates, don’t go scarfing a bunch of stuff and then blame me because you got a blockage, and God forbid have to have it surgically corrected.  I was lucky.  And I’m smart about what I eat.  I know if I eat a bunch of nuts, I have to chew them until they are like peanut butter and drink a lot of water.  Same with popcorn.  Same with everything.  I can drink alcohol as long as I stay hydrated otherwise I get a bitch of a headache.   Actually, I always have to stay hydrated to avoid a bitch of a headache.

Introducing no-no foods was a slow process.  I didn’t jump in and don’t suggest that you do.  But for me, having my popcorn and carbonated beverages back have been a bit of heaven – one very small, well chewed bit at a time.

How I Became The Anonymous Ostomate.

Here is an article I submitted to The Phoenix, a  magazine for ostomates.  I think it explains my story and my hope for anyone living the "lifestyle".  Enjoy!

I admire all of you ostomates who tell the world loud and proud that you have an ostomy.  I respect anyone with the nerve to put their face and their life stories on the cover of a magazine without regard for what anyone else thinks.  But while I feel that way, I don’t ever see myself doing the same.  My closest friends and family know that I have an ileostomy, but no one at work knows and none of my peripheral friends know.  And that’s just the way I like it.

I’m comfortable in my role as an anonymous ostomate, and I have a feeling that many of The Pheonix’s readers are much like me.  I applaud wanting to remove the stigma of having an ostomy and encourage you, brave souls, to keep at it. But for me, after years of suffering from Crohn’s Disease, I just want to be Leslie, not sick Leslie or ostomy Leslie.  

I am a 43-year-old full-time working mom, owner of two 1-year old Labrador puppies (yes, my husband and I are a little nuts), and loving wife to a saint of a husband who put up with me while I suffered through 12-years of a Prednisone-hazed run of Crohn’s Disease. Since opting for surgery 4 ½ years ago as a way to get back my life, I don’t define myself by my disease anymore.  But for those 12 years, it overwhelmed me and took away much of the joy out of my life.

During the last few years of college, I lived with my older sister in an apartment with a roommate and her crazy puppy. When our neighbor's boyfriend's brother returned the escape artist puppy one day, we sat talking for an hour on the hallway stairs.  I don’t know if I believe in love at first sight, but I do remember that entire hour with him in great detail.  Six years later, I returned with him from our honeymoon in Central America with bad case of... well, let’s just say that we both spent a lot of time in the bathroom.  New husband quickly recovered.  For me, it took 12. Long. Years.

There I was, newly married to the love of my life and diagnosed with Crohn’s Disease.  The disease hit mostly in my lower colon and rectum causing a sense of urgency and frequent trips to the bathroom.  I went often.  I had to run.  And it sucked.

This will sound familiar to anyone who has suffered bowel disease: I staked out the bathroom wherever I went.   Always sat on the outside of an aisle.  Dreaded car rides without quick access to a toilet.  Missed more vacations, parties and other events than I can even count.  And, yes, there were plenty of times I didn’t make it to the bathroom.  Worst than any of that, by far,was the fact that nothing but Prednisone would put me in remission, and it made me CRAZY.  CRAZY, in all caps, CRAZY.

I couldn’t sleep.  I would compulsively clean my house.  I would get angry at the slightest thing.  I couldn’t stand being touched.  I ate and ate and ate.  My face was moon-shaped.  I felt like a fat cow.  My thoughts were always 5 steps ahead of the present moment.  In a nutshell, taking Prednisone was like having waaay too much caffeine, being hung-over and suffering PMS all at the same time.  (Women who have ever had too much to drink, you can relate!) It was way worse than any of the symptoms I had from Crohns, so I wouldn’t take Prednisone until I had to take Prednisone.

At one point, I decided to see if my symptoms would level out since I figured spending hours a day in the bathroom was preferable to being a crazed maniac.  That little experiment cost me a week in the hospital and intravenous Prednisone.  Not a pretty site!  The poor woman in the room with me during that week was awake but couldn’t move or talk.  I still feel bad thinking about her laying there enduring endless hours of me hyper yapping on the phone and doing things like calling the same florist 3 times to complain that the flowers they sent from my Dad were unacceptable.  I even made them bring back 3 different bouquets.  That’s how CRAZY I was.

One time, two young Mormon boys had the audacity to ring my doorbell right after my colicky baby went down for his nap.  Do you know what I yelled at them while strung out on steroids?  I opened the door, yelled “I’m a Christian G__ dammit”, and slammed the door in their faces.  Yes, I realize the irony of that statement.  I can’t even say that phrase in a normal state, let alone scream it at some young Mormon boys. That’s how CRAZY I was.

Another time, while driving home from my gastroenterologist appointment, I had to pass the Planned Parenthood clinic that always had protesters.  I don’t mind protesters.  What I do mind is when they have an 8’x8’ picture of an aborted fetus for my 3-year old son to see.  I was so furious he had to look at it, that I pulled the car over and screamed at the lone woman protesting.  “Do you think God wants you showing that picture to children? God is love and that poster is not love.  I don’t care if you protest but don’t tell me you are doing it in God’s name when you are forcing my child to see your heinous pictures.”  I did this all while my 3-year old looked on wide-eyed and innocent.  Sigh. Not one of my shining moments as a mom. . . That’s how FREAKING CRAZY I was.

These incidents and more, from which I will spare your innocent ears, led me to start contemplating surgery.  Not so surprisingly, my gastroenterologist wasn’t the one pushing it.  Prednisone put me in remission, so why would I contemplate an ileostomy?  This is why:  I wanted a better life for my kids, for my husband, and for me.  I sought out 2nd opinions and did a lot of research on my own.  Thank goodness I did.

Life with an ostomy is great. Other than a trip to the emergency room for a blockage after scarfing jumbo shrimp cocktail, I have been fortunate not to have any major complications.  (Shrimp was NOT on my list of no-no food.  Beware, fellow ileostomates! Shrimp & lobster are hard to digest.)  Yes, it stinks that I can’t wear a bikini, but I never wore one anyway.  Yes, I get nervous someone will feel my pouch if they hug me too close, but I never felt like being hugged when I was Prednisone.  Yes, I have to manage the pouch to feel comfortable when getting frisky with my husband, but at least I feel well enough to even consider getting frisky!

So yes, there are inconveniences but anytime I feel the least bit sorry for myself, I always remember that the alternative is worse.  It’s perspective, baby.  And although one day I may have the perspective about being open with the world about my lifestyle, right now I am content.  I don’t want to worry about people seeing me as the person who has an ostomy.  I just want them to see me - healthy and happy and blessed in more ways than I can begin to explain.  My hope for my fellow ostomates, whether you are out of the ostomy closet or firmly in its depths, is that you have the right perspective so you can enjoy the life you have.