Shout Out to Awestomy!

I want to give a shout out to the Awestomy Kickstarter Project.

One of the biggest struggles I have faced since my surgery is figuring out what to wear and how to wear it. My stoma is pretty high so it is difficult to tuck my pouch into my clothes like many other ostomates do. I wear low pants and long shirts and let my pouch hang over my pants. These undies by Awestomy help ostomates like me to feel more secure. I am really excited to try a wrap!

First Day of the Rest of My Life

I was sitting on campus in between classes today and a realization hit me. I am lucky to be here. This time last year I was dying. I was fighting for my life. I am fortunate to be here, among smelly boys and loud girls, the smells of lunch and heat from the day. A short year ago there was no guarantee that I would ever be able to return to school. There was no guarantee that I was going to even live through the day.

Be grateful for every single day, friends. Every single one.

Back to School

This week I am going back to school for the first time in over a year. I was enrolled in classes last year when I became sick, so I had to drop them all.
I am excited and nervous. Excited to be taking Hospitality courses and furthering my knowledge in the industry.
See, I was engaged once and planned my whole wedding. Although the wedding didn't end up happening, I had had so much fun and loved every second of planning and coordinating an event. I knew I had found what I wanted to do with my life.

I am also a bundle of nerves. This will be my first time in school as an ostomate. There is so much more to think about now.
Do I tell my teachers right away in case I should have to leave the room for an extended period of time?
Should I get a doctors note?
How much extra supplies should I bring and where should I keep them?
Should I bring extra clothes? Where would I keep those?
Is this something I want to tell other classmates about?

Any advice? Anything I didn't think of, but should have? Please leave me a comment!

On the GO. (See what I did there?)

I have always loved to travel. Some of my greatest memories from childhood involve sitting in the back seat of our car with my sisters on one road trip or another. (Or the front seat once it became known that I would get car sick if I sat in the back too long!)

Traveling with an ostomy has been a completely new experience.
*These are simply examples from my recent trip. I haven't flown yet, so this won't include air travel observations.*

Bring extra supplies! I ended up bringing way more than I needed but it gave me peace of mind to know that I had enough for 4-5 changes per day. (Hey, you never know!)

Empty frequently. When driving, we stopped more than we normally would have to make sure I could empty my bag. Sitting in the car with a full bag is a very uncomfortable feeling, and would probably cause leaks!

Be aware of what you're eating. You're on vacation! Your diet may be totally different than what your body is used to. Be ready for a change in output as a result of diet changes. This could affect wear time and how you are feeling overall.

Be aware of what you're drinking. On my cruise I drank more alcoholic beverages than I normally would. This changes output and also makes me sleep a little deeper. I had to be aware that I may have to get up to empty in the middle of the night.

Beware the non-flushing toilets! My sister got to hear for two weeks straight, me bitching and complaining that every toilet in every room we stayed in could not seem to flush properly. I was seriously waiting for toilet bowls to fill back up so I could flush again three or four times sometimes! The problem, for you folks without ileostomies, is that my output is not solid but not liquid but some magic consistency in between. (Sorry about that image!) Because of this, it often will pool at the bottom of the bowl and needs a good forceful wave of water to get it to move. Not many hotel toilets have this wave. More of a gentle trickle, if you're lucky. Just enough to cause RAGE! Haha! Fear not, fellow ostomates! I have discovered a solution. Simply put down a layer of tp or a tissue before emptying and Presto! Problem solved. Two flushes at most.

I will post again about air travel next month. Colorado, ready or not, here I come!

A-Cation!

I'm baaaaaaaack.

Phew! That was quite a vacation! Or a-cation as Mancub would say.
 I won't go into all the crazy details because 1. That would take forever and 2. It would bore you all to tears.

I will, however, give you a quick recap.

My sister, Beppa, and I started our vacation at the 4th National UOAA conference. I posted about the first day! Beppa and I met some new friends (hey guys!) and learned new things about ostomies, people with ostomies and ourselves. It was my first conference, obviously, because my surgery was less than a year ago. I found myself amazed at how many people have been living with ostomies for decades. You can't even tell!
I definitely want to delve into the details and my thoughts on them but I'll save that for another post.

Beppa and Mama with the Colossal Colon! Affectionately called CoCo.

Beppa and I left the conference a day and a half early ::sad face:: to drive to Fort Lauderdale to board the Oasis of the Seas! ::HAPPY FACE::
There we met up with our parents, our sister with her husband and baby daughter, and my Mancub!
As a family, we have been on two previous cruises (all Royal Caribbean) so we pretty much knew the drill. Cruising with young kids is a WHOLE new experience. You have to pack extra, schedule your time carefully and forget about lounging on a deck chair for hours with a good book.
But it was worth it.
I enjoyed the other two cruises we had taken. (2004 and 2011) I was a little worried that my son would have a terrible time and make it impossible to do anything fun.
I was so wrong.
Yes, I had to wing much of our days. Yes, the long dinners were a struggle for his two-year-old attention span.
It was the most fun I have ever had on a cruise ship. I got to take him into the ocean by the beach where my sister and brother-in-law were married in 2011. I got to take him to a figure skating show and diving show. He got to splash around in the splash zone on the ship. We were able to go to a room full of Fisher Price toys and play. We went to a small zoo and fed Animal Crackers to the monkeys. I am definitely not a "no technology" kind of mom, but it was nice to spend a week without his shows and my iPhone. Most days he even napped in the middle of the day. WOOHOO!

Our room attendant LOVED him and tried to be around after she made him towel animals so she could see how excited he was!

If you know anything about my family, you know we are BIG into Disney.
Sooooo, when my sister called me one day and said "Since we're going to be in Florida ANYWAY, what do you think of getting a resort room for a couple nights and hitting the parks?!" I was like "HELL YEAH!"
So we did.
As crazy as it sounds, we did. We (my sisters, brother-in-law, and the kiddos) disembarked from the ship and drove three hours to Orlando to check into the Arts of Animation resort. Our room was Lion King themed and was perfect for a family with kids. We took off for Hollywood Studios that evening to catch the Disney Jr. Live Show, which I knew would make Mancubs head explode with excitement. Much to our delight, Jake from Jake and the Neverland Pirates was there signing autographs and taking pictures!
Jake is Mancub's FAVORITE.
Just look at the excitement on this kid's face. You can't beat that.

He loved the Disney Jr. Live Show, which I highly recommend to any parent with a kid who watches Disney Jr. shows.

The next morning my brother-in-law had to take off to get home for work so it was just the sisters and kids. We decided to spend the day at the Magic Kingdom. The New Fantasyland is really awesome! It was the perfect day to end a truly amazing trip.  

There's my "quick" recap. In all the excitement I didn't have time to write a post but I figure it was for the best. Vacationing with my son is so fun. He makes everything so special.
Next post I want to talk more about vacationing with an ostomy. It definitely brought up some challenges.

We're here!

I am so excited! My sister and I arrived, earlier today, in Jacksonville for the UOAA's 4th National Conference!

Tomorrow, we have a full day of classes, as well as a first timers orientation and an ice cream social! 

I will update here as often as I can! Cheers!

Apology from Cincinnati

The Cincinnati police chief has issued an apology.
Here's the back story. 

I appreciate the gesture. I accept the apology and my anger has diminished.

However, along with an apology to the ostomy community, how about we all also use this as a chance to educate the public.

Those of us with ostomies already know it is okay. We already know we're not gross. We already know we can, and do, live normal lives. We already know that this isn't preventing normal relationships.

We're not the only ones who should be apologized to. The general public deserves an apology for being exposed to ignorance and falsehoods.

To the Ostomy Community:

 Like many American cities, Cincinnati has seen an increase in the number of juveniles involved in violent crime.  Many of these juveniles become victims and suffer traumatic injuries as a result.  In developing a strategy we contacted a local hospital trauma center which has a presentation that illustrates some life changing consequences of gun violence.  Unfortunately, one of the examples used was of a gunshot victim who was now required to utilize a colostomy bag; and the news chose to highlight a poorly chosen comment by a Police Lieutenant when airing the story.  To use the example of an ostomy bag in this way was a mistake.  Although there was no ill will intended, the results were hurtful to some in the ostomy community and this will not be repeated.

 I realize the way the news story was presented has offended many in the ostomy community, and for this I am truly sorry.  As a result of the numerous contacts I received, I have taken steps to ensure this does not happen again.  I have spoken to the Lieutenant involved in the story and his commander.  Both are extremely troubled that such a well-meaning attempt to reduce the number of juveniles involved in gun violence offended so many.  I addressed this with my command staff and Public Information Office to ensure we are all educated on the issue and to prevent any future occurrences.  I also contacted Mr. Jeff Brogan, General Manager of WCPO regarding this issue. 

 I have attempted to individually answer emails, but I wanted to send a clearer message to everyone in the ostomy community.  I am very sorry this happened and will work to ensure it does not happen in the future.  I assure you this was a mistake on the part of well-meaning individuals and not a deliberate attempt to offend anyone. 

 I hope you will accept this apology on behalf of the Cincinnati Police Department.

 Sincerely,

Paul H. Humphries
Interim Police Chief
Cincinnati Police Department

The Silver Lining

I'm alive

Whenever I start to get down on myself about having a chronic disease and an ostomy I try to remind myself that I am alive.

Also...

• No more flare-up pain. (So far.)
• I don't have to blame a fart smell on the dogs...or the baby!
• Community. I have met many great people who are dealing with the same struggles.
• Knowledge. I know my body better now than I ever had. I know that I can and will push my limitations. I know how to care for a wound. I know what your insides look like! 

The best thing about this ostomy is...

that I still get to kiss this face, and hear his laugh, and be his mommy. 

That's what it's all about, right?

The Clouds

How has my life changed since my surgery?
I'm going to start with the not-so-fun parts of being an ostomate.

• I'm scared to go swimming. I love swimming and there are many ostomates who do swim but I'm always afraid of compromising my appliance.
• Leaks. Code brown. Poop, everywhere. Need I say more?
• Worry. Will I get a hernia if I pick that heavy thing up? If I fall asleep now, will the bag leak? Can I shower without the bag falling off in a couple hours? If I eat this, will it cause a painful blockage? If I wear that shirt will everyone see my bag?
• Blockages. Even small ones make me miserable.
• Stoma noise. Yes, I still pass gas. And sometimes it makes a noise. Pretty embarrassing.