Pizza. Port-a-potties. And Police.

I am a firm believer that a positive attitude alone can get you half way to anything you set your mind on.  In the case of severe, debilitating Crohn’s disease, the other half comes down to science, the right medication cocktail and, more often than not, surgery.  While my Crohn’s disease did take so much from me in my early twenties, I was determined to not let it take everything.

This meant that I would try to join my group of co-worker friends once a week for happy hour and dinner at a new restaurant fairly close to our office.  My co-workers knew I had Crohn’s disease; they had to.  I missed half a day of work every 4 weeks for my Entyvio infusions and had countless doctors appointments.  They knew there were some weeks that I had to work from home more than my allowed 1 day a week, and they didn’t ask any questions.  It was also the office joke that my 107 pound dog weighted more than me – I think this was actually the only way they could openly handle how skinny I had gotten.  While they knew all these things about me, I always downplayed my Crohn’s to my co-workers, making it seem equivalent to the common cold.  I never wanted special attention, nor sympathy.  I really just wanted to be “normal” at work, because outside of work, my life was so far from “normal” for a 20-something female.  Anyway, I felt happy hour and dinner once a week was a fairly “safe” event for me to attend.  There were always bathrooms in restaurants.  We typically had to work the next day, so the night ended early, and I always used my 55 mile commute home as an excuse not to drink.

One Thursday night, the group decided to visit a local pizzeria for our weekly event.  Carbs always seemed to settle well with me (I used to joke with my sister that I was the skinniest fat-ass she would ever meet), so I ate the pizza and had a pretty good time!  It was on the way home that IBD came a’knocking.

In true Crohn’s fashion, I suddenly had to go to the bathroom and had less than 30 seconds to get to one.  Like I mentioned earlier, my commute was 55 miles one way.  The bathrooms on my drive were like mile markers for me.  Having to frequent them, I knew which ones were nice, which ones were scummy, which ones were one-personers, and which ones were port-a-potties.

On this Thursday evening, my closest option was the latter.  And while I say “option”, I really had no choice.  This particular port-a-potty was about 7 miles from my house and located at the base of a small mountain.  As I pulled into the parking lot, I noticed a sign that said the parking lot was closed after dark (yup, it was dark out), but I knew I wouldn’t be able to keep my shit together during the next 7 miles home.  I parked my car, left it running with the lights on, and rushed towards the outhouse.

I took one step out of my car, and it happened.  I could touch the door of the port-a-potty, but it was too late.  This sitting-to-standing-bowel-release situation happened to me a lot.  It was like getting your favorite colored balloon handed to you as a child, and then watching it float to the sky 5 seconds later.  Heartbreaking, and so defeating.  I decided to use the port-a-potty anyway, to clean up, before jumping back in my car to go home.

While in the port-a-potty, using my cell phone as a light, I heard another car drive into the parking lot.  Totally freaked out, I decided my life was not worth this shit and opened the door to beeline to my car (which I left running for the lights).  When I opened the door, five feet in front of me, stood.  a.  man.  Scream here.  I did.

It took me about 30 seconds to process that the man was shining a flashlight at me, wearing a hat, and was a police officer.  He saw the lights on my car parked in a closed lot and was coming to investigate.  I explained to the cop that I had severe Crohn’s disease and needed to use the bathroom on my way home from work.  He profusely apologized for scaring me.  And I was back in my car, headed home, sitting in a pile of my own shit (not that this was the first or last time it would happen).

To say I was glad that I had already shit my pants, before the police officer showed up, was an understatement.  He actually had no idea that poop was oozing down my leg (I was wearing a dress)!  My Crohn’s and BMs were very emotionally activated – regardless of the emotion – happy, sad, nervous, excited, SCARED…I guess this is the only instance in recent memory where I can say I was scared “shitless”.

Last September, I finally hung up my TP sash, and retired from my 10+ year rein on the porcelain thrown as the Port-a-potty Princess.  Outsiders think having an ostomy is shitty, but they have no idea that the phrase “scared shitless” was invented by a Crohnie who shit their pants 5 minutes before being scared.

Former Port-a-Potty Princess, signing off.

 

 

High Waist, Bye Ostomy

Since my proctocolectomy (total removal of the colon and rectum) last October, I have been obsessed with high waisted everything and anything!  I wear high waisted jeans, skirts, underwear, swim suits, yoga pants, shorts, Spanx… Basically, anything you can wear on the bottom half of your body hits me 2 inches above my belly button, and it is amazing.

Benefits of the high waist for an ostomy girl:

  1. Serves as an Invisibility Cloak* for my ostomy, completely hiding it from anyone that doesn’t (or does) know it is there.
  2. Protects the thing like Fort Knox by adding additional layers, coverage, and ultimately, a feeling of security.
  3. Hits higher than the middle of my stoma unlike regular pants, which cause my bag to balloon above the waist band and create an awkward bulge….
  4. Allows me to tuck in the new layer of fat my belly has developed now that my body absorbs nutrients vs. pooping them all out.
  5. Provides ultimate ostomy comfort.

* Yes, that is a Harry Potter reference…

Below are a few of my favorite high waisted, ostomy concealing, bottoms:

Super High Rise True Skinny Jeans from Gap.

gap jeans

These jeans are beyond versatile and Gap sells a few varieties in a range of colors.  I tuck my shirts in, or leave them out, but never worry about someone figuring out my dirty secret.

Literally, Every High Waisted Swimsuit Bottom from Albion Fit.

albion fit

Albion Fit sells the. most. adorable. high waisted swimsuits!  Their one pieces are fab, as well!  You will only be remembered for being the cutest bum at the beach when wearing an Albion Fit suit!

Lisette High-Waisted Leggings from Fabletics.

PT1617843-2362

Not only are leggings from Fabletics the best quality leggings (workout or leisure) that I have ever laid my hands on, I also truly forget I have an ostomy when wearing these.  The compression in these leggings offer just enough pressure to keep my bag laying smooth without restricting the necessary “flow” of Mother Nature.

These opinions are completely my own and these companies did not pay me to feature their products or write these reviews (although I wish they would – hint, hint)!

Buy these.  You can thank me later!

xoxo,

Dani

 

 

Oh, my, God. Becky, look at her bag.

I mean, her bag, is just so big.

I can’t believe it’s just so round, it’s like, out there, I mean – gross.  Look!

Said no one ever. 

Hey y’all! I’m back!

I know, I’ve been gone far too long.  You thought I died during surgery.  You were worried.  You missed my shitty wit.  You thought you were going to follow the chronicles of my entry into the bag life in real time.  Good news!  I did not die during my 7 hour surgery!

I did spend 4 days in the step down unit, 2 days in a regular room, received 2 blood transfusions, had a doctor under dose my epidural on day 1, needed an ultrasound on my arm to find a vein, blew out every IV I received, watched season 1 of Gossip Girl, left the hospital sans a colon and rectum, but(t) gained.  more.  life.  in the last 8 months than I ever thought possible with severe Crohn’s disease, and an ostomy bag.

 When I returned home from the hospital, I wanted my anticipated 6 week short term disability leave to fly by as fast as possible.  I wanted taking a shower to be effortless.  I wanted my (mom-enforced) daily walk down my driveway to the mailbox to be easy.  I wanted to feel strong.  I wanted my bag to stop leaking.  I wanted to sleep on my left-side, in my own bed.  I actually just wanted to be able to sleep in a bed.  I wanted this itchy thing attached to my stomach to be gone.  I wanted so badly to feel “normal” again.

And my “normal” didn’t included blogging my daily struggles with my new body and my new ostomy bag.

Fast forward 8 months, my life is totally normal!  It’s beyond normal!  It’s extraordinary.

Stay tuned for my tips on navigating bag life, my love of high waisted anything, an occasional craft or recipe, and how I prove to Becky, and everyone, how it’s not my bag, but(t) my life, that is just so big.

It tastes like prime rib.

Surgery prep sucks.  Colonoscopy prep sucks.  Any bowel related anything prep sucks.

I tried to eat 2 big meals yesterday in hopes that they would hold me over through today.  That worked out well – NOT.  While the food was delicious (I ate dinner at one of my most favorite restaurants), the world needed to remind me one more time why I was getting this surgery.  As if I had forgotten.

If you can’t read between the lines, I shit my pants.  Actually, I shit my dress, which is almost worst?  In my car.  At least I’ve smarted up at this point and I sit on a “poopy pad” so the mess is easier to clean up and I am not trying to deep clean my car seats at least once a week.  I did still have to sneak into my house past my neighbor, while my dog was frantically trying to sniff AKA lick my butt.  That was fun.

While yesterday ended on a slightly shitty note, I at least got to eat real food!  We take it for granted, being able to eat 3 meals a day.  For the 48 hours prior to surgery, I am restricted to clear liquids.  I had a bowl of chicken broth for dinner tonight.  It looked like pee.  I told myself it tasted like prime rib.

Over the last 3 years I have gone at least 2 weeks without eating real food.  I have had about 5 procedures each year that have required bowel prep.  Did I mention it sucks?

Bowel prep does suck.  But so does pooping your pants.  And I have done that WAY more than 5 times a year…

So this brings me to plus side # 35 of having an ostomy.

Ostomy Plus Side # 35: Fewer procedures that require bowel prep post-ostomy.

 

T minus 5 poops, folks.

 

How are you doing?

How. Are. You. Doing?  My boyfriend asked me these 4 simple words on Sunday night, and I teared up.  I couldn’t explain why I was crying or how I was feeling.  I can handle the words “I have to have my colon removed” and “I am going to poop from a bag the rest of my life”, but this week I am struggling with four, seemingly easy words.

How am I doing?  I’ve thought long and hard about it the last few days.  How does one feel when they are about to have a life. altering. surgery.?  I think its important for me to document these feelings so anyone reading this post now or in the future knows that it is totally normal to feel this way and that you are not alone.  I also want my readers (who are mostly family at this point – Hi, Mom!) to know that I really am okay.

So here goes – How am I doing?

I am sad.  I am sad Inflammatory Bowel Disease exists.  I am sad there is no cure.  I am sad some people suffer from this disease without sufficient means and support systems.  I am sad that there is little understanding of these diseases in the world and that pooping is such a taboo topic.

I am anxious.  I can only grin & bear it so many times when I hear “I know how you are feeling; I have severe allergies” or “you must be excited for your upcoming vacation!”.  I am counting down everything – 10 poops left, 3 sleepless nights left, 2 days of work left, zero solid meals left.  I am trying to figure out if every outfit I wear will look okay post-bag.  I wish I could fast forward 6 weeks to when this is all over and could start posting about my #ostomyOOTD and the pretty side of poop.

But mostly,

I am excited.  I am excited to finally be in the driver’s seat (without having to sit on the poopy pad) of my life.  I am excited to no longer fear my hour commute to work, with no bathrooms.  I am excited to cross port-a-potties off of my list of favorite places.  I am excited for my mind to no longer be consumed with figuring out where the closest bathroom is and what story am I going to use to cut the line.  I am excited to do all the things that I had to miss out on for the last few dark years.  I am excited for this awful seton to be removed.  I am excited to prove to the world that even with Crohn’s disease and an ostomy bag, I am still just like you.

I’m also excited to eat corn.

And Casablanca salad.

I can’t guarantee that I won’t cry the next time I am asked “how are you doing?” or that I won’t cry when my parents show up or when it is time for them to wheel me away.  But I can guarantee that I am ready.

My poops are numbered.

My colon and rectum are going to be removed in 6 days, and I will be left with a permanent ileostomy.  That means I have approximately 30 poops from the butt left…for all eternity.  (You may be doing quick math and are thinking “five times a day…that’s not too bad”.  And I agree with you!  Five times a day is a walk in the park compared to some of the dark days of my life when I was averaging 10+.  I’ll get more into those days in a later post.)

Back to the 30 poops.  While I have mixed feelings about the actual surgery, I could not be more thrilled to only have to poop 30 more times, from the butt, for the rest of my life!  Think of the money I am going to save on toilet paper!  I legit cry a little when I go to someone else’s house and they have that super thin, see-through, sandpaper-esk toilet paper.  Have they never had diarrhea?!  While I doubt I will stoop to that level (I find it just plain cruel!), I will not have to invest in the jumbo pack of 900 fill polyester down TP like I do today.  Charmin shareholders: take note.

Now that we are up to speed with my bowel movement frequency and toilet paper preferences, let me introduce myself.  Hi!  I’m Dani & I have Crohn’s disease.  I have lost many battles in my 10 year struggle with this disease, but this month, I am determined to win the war!

I decided to create Baby Got Bag to share my experiences through this surgery and life after.  My mission is to prove that life can still be “normal”, even with an ostomy bag.  I plan to share the good and the bad, the ups and the downs, and the tricks that turn the bag life, into the best life.

Stay tuned – shit is about to get real!

 

P.S. 27 poops remain.