Ch-ch-ch-ch-changes

As my graduation approaches I am overwhelmed with thoughts about the events of the last three years. Many times people speak of regrets that they have. They mention bad relationships they “should have” avoided or missed opportunities that have affected their lives in damaging ways.

 I don’t believe in regrets. I believe that everything that has happened in my life; every mistake I have made, every dumb choice, every opportunity I have missed, has happened to make me the person I am today. Don’t get me wrong, I don’t always love the person I am, but I don’t ever hate who I am. Regretting things I have done undermines the person I am and the lessons I have learned.

However, I had the thought lately, “Who, what and where would I be if I didn't have Crohn’s Disease?”

Who would I be? Would I have graduated sooner? Would I still be single? Would I have better self-image?

What would I be? Would I be a good person? Would I have as much empathy as I do?

Where would I be? Would I still be living in my parent’s house? Would I have moved somewhere totally new?

Having Crohn’s Disease and an ileostomy has shaped my life. It has impacted me both positively and negatively. It has held me back for sure. Finishing school had to be done at a slower pace. I missed so much work that I was eventually replaced.

It has also given me a new perspective. I now know what it is like to be faced with death. I know what it is like to have a disease that has embarrassing symptoms. I know what it’s like to have my body rip itself apart and have to be cut open and my insides rerouted.  These things have shaped my thinking. They have given me the chance to make new friends and to help an entire community to educate the masses. I have gained a family by losing an organ. I have gained my life back. 

Starting Anew

As anyone who reads my blog will have noticed, it has been a while since I have updated.
What got in the way?
Life.
Life got in the way.
Mancub and I had a great summer and a crazy, busy fall.
I worked my job and an internship at my school, while also taking two night classes.
But, it was all worth it.
Today is my official graduation date. The ceremony isn't until May, but I am done!

The negative part in me keeps saying "yeah, woo, an associates degree after ten years."
Then I am reminded what all I have been through in the last ten years. I can't help but feel proud that I have accomplished this degree. I feel like I have shown my son that even if it takes ten, fifteen, or twenty years, an education is important and attainable.

Next stop, who knows!

2015 is the start to great things!

How You Can Help <3

A while back, I posted about my beautiful sister who was going to run in Hawaii with Team Challenge. Well, due to minor a physical setback, she has decided to run in Napa instead. 
She is still taking donations. 

This is copied from her website.

"Up until a few years ago I had no idea what Crohn's Disease or Ulcerative Colitis were. In 2011, that all changed.

After months of stomach cramps, diarrhea and other digestive problems, my sister Elizabeth, was diagnosed with Ulcerative Colitis. She spent many days in the hospital ER trying to figure out what was causing these symptoms. After a few months of trying different treatments and no results, she was hospitalized in August of 2012.

At that point she was so malnourished and in so much pain the doctor wanted to try steroids and pain medicines delivered by a Picc line for a week to see if that would be any help. The x-ray to check on the picc line placement saved my sister's life. It showed that her colon had already perforated in multiple places. An emergency surgery was done to remove her entire colon. She now has an end ileostomy. This ileostomy has saved my sister's life. I can't imagine a life without my sister, she is one of my best friends. I can't imagine her son growing up not knowing his mom. I hate this disease. The doctors are still not sure if her original diagnosis of Ulcerative Colitis is still accurate or if she has Crohn's Disease. They are leaning towards Crohn's Disease, which can spread through her entire digestive system, making a reattachment surgery an unlikely choice for her.

You can read all about her journey through this at her blog: mamasgotastoma.blogspot.com

In the spring of 2012, IBD doubled down on my family. My Uncle Dave, was diagnosed with Ulcerative Colitis and ended up with an emergency Colostomy also.

I have been a runner for almost 10 years and the Napa Half Marathon is the most important race for me yet. It is my way to support my sister, uncle, and the IBD (Inflammatory Bowel Disease) community.

Please help support my fundraising efforts:

$10: I will send you a Blue rubber bracelet that shows your support of the Crohn's Disease and Ulcerative Colitis foundation of America.

$50: I will write your name on the back of my jersey to share your support with everyone. 

$100: you can sponsor a mile of my race.

$200: I will make a "flat Stanley" character of you and take pictures along the course and send them to you after the race."

I know these diseases have affected many of my friends, new and old.
I am so proud of my sister.

You can make a donation at http://www.active.com/donate/napaga14/jessawotona

Thank you, friends!

Jessica, her daughter, and my Mancub

My New Favorite Thing

I have had my ostomy for almost two years now. 

Can you believe it? I can't. 

It feels like yesterday that I landed in that hospital, hours from death. 

Since then, I have learned so many different things that I never would have even thought of. 

I have used trial and error and discovered a pouching system that works for me. 

One thing that I have just started using in the past couple of months, that I LOVE love love love, that I don't know how I lived without, is my wraps from www.ostomysecrets.com. 

See, my stoma is fairly high on my abdomen. Many ostomates wear their pants over their pouch as a way to conceal it. I would be wearing some hiiiiiiiigh pants if I was gonna do that. For a long time, I was wearing my pouch over my pants and wearing a cami, and the longest shirt I could find. 

I was always, ALWAYS pulling on my shirt to make sure that the "tail" of my pouch wasn't showing. More than once, it was before I noticed. Talk about STRESS. 

Boom!

Ostomy wrap. 

My pouch is concealed. It is secure. 

I even wear one to bed and I am sleeping better because it is more secure and not flopping around. 

Life is good. 

Thank you OstomySecrets! 

Free!!!!!

Today, I completed the last final of this CRAZY semester. 

I celebrated by taking a bath. A BATH. I haven't taken a bath in almost two years. 

I wasn't sure if my skin or pouch could handle it. 

It was lovely. 

A wet pouch is annoying for a while, and I hope it stays through the night. 

But for now. Bliss. 

The Last Stage is Acceptance

Hello all!

So much has happened since Valentine's Day so let's get to it!

I spent this weekend attending the UOAA Mid-Atlantic Regional Conference that was held in Virginia. The Northern Virginia ASG (Associated Support Group) was our gracious host and coordinator. 

This was my second conference as an ostomate. It was a different experience for a few reasons. When I attended the National Conference in Jacksonville, FL last summer I was one of 400. This weekend was attended by, I'm estimating, 125. It was a more intimate experience overall and I was much more comfortable approaching people and making new friends. 

I also attended this conference by myself. BY MYSELF. In July, my sister came with me. Having a companion was a blessing and a curse. I had someone to talk to, attend sessions with, and eat meals with, but I also think that I held back a little and let myself be a little more reserved. Not having my sister this weekend took away my crutch so I had to "man-up" and talk to strangers. 

There's one topic that kept popping up this weekend that I wanted to share with my readers.

 Many of the speakers spoke about how, when you get ostomy surgery, it is normal to go through a grieving process. The five stages of grief are denial, anger, bargaining, depression and acceptance.  Just think about it, your body has been cut into, chopped up, and re-routed. Your body will never be "normal" again. It will never be "complete" again. The loss of that normal and complete body is a huge loss. As humans, we grieve when we lose a family member or a friend. It only makes sense that, as ostomates, we all had to go through a grieving process to mourn the loss of our normal selves.

  I remember too well the overwhelming feelings I had after my surgery. I remember feeling out of control and emotional. In hindsight, I can see that I was going through the stages of grief. The first three passed pretty quickly but I know I was stuck in depression for a very long time. I still have moments when I get overwhelmingly sad that this is the path my life has taken. I still have mornings when I don't want to get out of bed because I ate a bag of popcorn without drinking enough water and my stomach hurts. There are days that I don't want to shower because I know if I do I'll have to do an entire bag change and that just seems like so much work. 

But then there are mornings when I wake up and feel overwhelmingly grateful to be alive. There are days when I realize I have been at the park or walking around Target and I haven't had to gather up the Mancub and run to the restroom (multiple times) doubled over in pain. There are weekends when I have the opportunity to meet amazing people who, otherwise, would never have been in my life. 

I want to share with you all some pictures from this weekend. 

I'll add more as I receive them!

Me and Brenda Elsagher!

Just me and my bag.

Acceptance is a beautiful thing. 

Love

Happy Valentine's Day, friends!
I LOVE Valentine's Day. Admittedly, because I enjoy so many pink options when I am out shopping. Not many things are more girly than V-Day decorations. Hearts, pink, red, flowers, candy. I just adore all of it.

Now, I have to say, I get mildly annoyed on V-Day. I log onto Facebook and there is so. much. anger. And negativity towards V-Day. I get it. It's cheesy, it's consumerism at it's finest, it's an excuse for your already annoying friends to be more annoying about being so in love!!
Guess what.
That's The Point!
It's not supposed to be taken seriously.
Yes, we as a whole, should be telling our loved ones how special they are every day of the year. Great. But that doesn't mean there's anything wrong with setting aside a day for love.
 There are much worse things to celebrate.

To Mourn

This post is not about my ostomy. It is not about my disease.

This post is about life. And death. 

This post is being hastily written because I can't make sense of the overwhelming emotions I feel right now. 

I am writing this through tears. I am writing this out of the sorrow I feel for a family that I have never met. A friend of a friend. A blog that I follow. A story I know through a mother's words, shared with the world. This mother is feeling the worst. The worst thing has happened. 

Her daughter has died from cancer.

Her beautiful six year old has taken her last breath today. 

I can't make sense of it. It is so heartbreaking. No mother should have to go through this much heartbreak. 

I am sitting here weeping. My heart is aching.

I know I am not the only stranger who is mourning the loss of this girl. I only wish that the power of all of the love we all feel for her mother could ease her hurt, even if it is only a fraction. 

Rest in peace, sweet JLK. You will never be forgotten.

For the Cause

My son is three years old. He is starting to get into superheros. He will wrap a blanket around his neck and "fly" around the house, his cape flying behind him. He knows that superheros have super strength, speed, or can take flight. 

But real heros can't fly; at least, not without help. They don't have super strength or super speed. They look like the rest of us. Some of them wear uniforms. Some of them wear scrubs. 

My hero wears sneakers.

My sister Jessica truly inspiring. She is a gracious wife, mother, daughter and sister. 

And now she is doing an amazing thing for my community, for people like me who have Crohn's Disease.

This summer Jessica will travel to Hawaii to run the Kona Half Marathon with Team Challenge. Team Challenge is the Crohn’s & Colitis Foundation of America’s endurance training and fundraising program. If you, your family or someone close to you is affected by Crohn's or Colitis, please consider 

donating on Jessica's website. 

Your donation will help find a cure for these painful diseases. 

Enough with the serious! I haven't told you the fun part yet! Jessica has created a little incentive to the fundraising.

Copied from her website:

$10: I will send you a Blue rubber bracelet that shows your support of the Crohn's Disease and Ulcerative Colitis foundation of America.

$50: I will write your name on the back of my jersey to share your support with everyone.

$100: you can sponsor a mile of my race.

$200: I will make a "flat Stanley" character of you and take pictures along the course and send them to you after the race.

Thank you all for your continued support and a big thank you to Jessica for fighting the good fight and being my hero!

Paging, Dr. Stork!

My boyfriend Dr. Travis Stork and the rest of the doctors on the show The Doctors discussed ostomies in the show that aired today Tuesday, January 28, 2014. 

Here is a link to that show's synopsis, which includes video clips!

I didn't see the original airing but on my drive home from school one of my best friends called me and told me that she had stayed home sick from work and had seen the show. She and I have discussed my ostomy and Crohn's Disease before in depth. She has seen my pouches and heard my story. She was the first to call while I was in the hospital and lets me talk and cry for hours when I'm feeling overwhelmed.

 When she called tonight she told me that she finally feels like she truly understands the technical aspect of what had happened to me. She explained that hearing the process of an ileostomy and seeing the diagrams and models on the show really hammered home what I had been through. 

I would just like to say thank you to The Doctors for reaching at least one person today.

I can only hope she wasn't alone.  

The Newness

Hey all!
I didn't grow up with a lot of new. I lived in the same house since I was five, I went to the same schools in the same school district, I had a lot of the same friends, I went to the same malls and ate at the same restaurants. As an adult, I can't keep up with all the new things happening. I moved to a new state, and then back to a new house, I had a new baby (is it possible to have an old baby?), I moved to another new state, I found a new job which led to a new passion and career path, I started a new school and made new friends (sorta!) Anyone who is a parent can tell you that every day brings new challenges and new adventures. Today is the first day in the new semester at school.

Since my surgery I have wanted to try new things. Not things like skydiving or bungee jumping because I'm afraid of heights and that's just crazy. I thinking more along the lines of getting involved and pushing myself to be a healthier and happier person.
And I have already completed one task. I completed my first 5k!
Okay, I walked it because I am still extremely out of shape, but I crossed that finish line all the same. I did it.
And I am very proud of myself.

What's next? Who knows... 

Stay tuned to find out!

Resolutions

Hey all!

Wow, it has been a while since I have updated. I would like to apologize for that. Life is busy and every time I sit down to write a post I draw a blank. I feel like things are pretty stagnant ostomy-wise. Then I remembered, my life isn't just about having an ostomy. I am so many things and I want to be so many more things. I am a mom, sister, daughter, student... I have hobbies and passions and goals and ambitions. 

Every year on December 31st people think of a list of things they want to change in the new year. I usually don't bother because I know myself well enough to know that if I want to change something I will and if I don't, I won't, regardless of a promise I make to myself on one day of the year. This year, however, I have made a mental list of things to work on. One is to keep up with my blog more. Another is to use it to be more than a person with an ostomy. I will use it to talk about parenthood, school, work, whatever I feel. 

I hope you all (whoever you all may be) stick with me. Share when you think I have something good to say. Help me educate. Raise awareness. 

See ya later!

Drowsiness May Occur

Hey all!

For the past few weeks I have been battling the season's finest. Sore throat, cough, fever, headache, runny nose... I'm practically a walking list-o-symptoms on the DayQuil commercials.  All of this is pretty tolerable. 

Until, that is, I forget to keep hydrated. I'm not sure I have been so miserable since the peak of my illness as when I am sick and dehydrated. Dehydration is serious and dangerous for anyone. 

An ostomate has to be especially careful about hydration. Remember, the colon is the organ that absorbs the water out of a person's diet. Without a colon my body doesn't get all of the fluids from the foods I eat as easily, which brings on dehydration much faster. 

So, friends, drink lots and lots of water! 

Birthdays and Snow

Hey all! Just thought I would pop by with a short update!

Crohn's and Colitis Awareness Week was great! I loved seeing so many interesting articles on Facebook and so many people coming out and talking about their illness. Did you learn anything new?

Another fun part of last week was Mancub's birthday! While he slept we decorated the kitchen table with Mickey Mouse decorations so when he woke up he had a wonderful surprise! His happy little face was the most beautiful thing! He and I went to see Disney's Frozen, which he loved. That night the whole family took him to Chuck E Cheese!

I am so blessed to have this child. At the peak of my illness I was terrified of losing him. He is my reason to keep going, to keep fighting, to better myself every single day.

In other news, it's SNOWING! I love snow. I think it is magical and beautiful. However, I do not like that it makes driving difficult and cancels our holiday ostomy support group meeting! Rats!

THIS is What I'm Talking About!!!

Hey all!

Some great news in the ostomy community! Finally, some positive light shown on someone with an ostomy!

I don't normally watch Tosh.o. When I heard he was featuring an ostomate, I was intrigued. And, to be frank, a little scared. I like to think I have a good sense if humor but I wasn't sure I could handle someone like Daniel Tosh making fun of someone with an ostomy. It is one of those things, to me, that you can make jokes if you have experienced it or are close to it somehow. My illness is not fodder for your comedy! 

So, I took a deep breath and started the episode.

 I have to say, I owe Daniel Tosh a huge apology. The segment is fun and informative and pretty funny!
And, hats off to Laura for sharing and putting herself out there to share her story! 

In case you missed it. Check it out here! Let me know what YOU think.

Also, to view Laura's videos on YouTube you can find those here. She is so sweet and gives great information and tips. 

Crohn's and Colitis Awareness Week!

Crohn's and Colitis Awareness Week is in full swing!

What do President Eisenhower, Shannon Doherty and Mike McCready have in common?
The same thing they have in common with me! We all have/had Crohn's disease.

Crohn's disease is one form of IBD, or Inflammatory Bowel Disease. IBD can affect any or all parts of the digestive tract from mouth to anus. Crohn's Disease is literally the body attacking itself, causing dangerous and painful inflammation. There is no known cause or cure. Symptoms include diarrhea, fever, sores, fatigue... these are just a few.

My experience with Crohn's Disease is recent and resulted in the need for an emergency surgery but this is not the norm.

Please, take the time this week to talk to someone with IBD. (I'm always available!) Talk to someone *about* IBD. Join or follow a Facebook group or Twitter page for more information and education.

27 Years of Thanks

Hey all! 

Happy Thanksgiving!

In honor of the day and my 27th birthday yesterday, I want to share some of what I am thankful for. I am thankful for so many things so I'll share just a few.

There's no other way for this list to start. 

This kid. This boy is what I am most thankful for. He is the reason I get out of bed some days when I'm feeling sorry for myself or feeling like I have forgotten the whole point. He is my motivation to be better than I was yesterday and for tomorrow to be better still. Not to mention, he is silly, fun, challenging, puzzling, heartwarming and reminds me that there's nothing better than playing. 

My parents. I am so thankful to have their support. There's no telling where I would be without their generosity and love. 

My beautiful niece. She is a smart, spunky, and awesome little lady. I am thankful for her existence in my life and in our family. Isn't she adorable?!

!

My older sister. I am thankful that we have become close friends. And that she puts up with me calling her everyday to talk about everything.

My younger sister. I am thankful for her love and friendship and her ability to make an adventure out of our time together. 

My extended family. I've said it before and I'll say it again.  I have the best support system.

My grandma. I Know that she could be included in the above. However, I am extra thankful to her. She and Mancub have a special bond that I am thankful for. 

I am thankful for my friends, old and new. For those I have known since childhood and those I catch up with once in a blue moon. I am thankful for all who have helped me shape my life. 

I am thankful for a group of women, most of whom I have never met, who have been in my life for almost four years. We have experienced pregnancy, childbirth, raising newborns to infants to toddlers to preschoolers. We have laughed together, cried together, mourned together, fought with each other and given endless advice. Together, we have trudged through sickness, loss, house fires, divorce and many other obstacles that life throws at us. All through the power of technology. 

I am thankful for doctors and nurses. Especially those who helped me battle for my life and who continue to help me put myself back together. 

I am thankful for the UOAA, Girls with Guts, CCFA and so many other groups who have been resources for me and others who are living with an ostomy or IBD. 

I hope everyone has a wonderful thanksgiving! 

He Can Fly!

Hey all! Wow, have Mancub and I been busy! We took a weekend trip to the Happiest Place on Earth! So I felt like this was a good time to chat about flying with an ostomy!

When we were in Florida at the UOAA National Conference, my sister and I attended a session led by a TSA representative. She talked to us about our rights as travelers and what to expect through security. I have to say, she eased my mind. Basically, you just have to be forthcoming about having an ostomy, especially if you have to go through the Body Scanner, because it will detect it and you will have to have a pat down. Some travelers also reported having to pat where their ostomy is located and then have their hands swabbed.
Well... I was SO READY to face the TSA with confidence.
However, since I had Mancub with me we were allowed to bypass the scanner and walk through the metal detector. Rats!
With security safely behind me, my traveling was smooth sailing. As long as I emptied my bag before boarding and after landing I was fine. It was no different than my flying experiences before surgery.
**Actually, as many of you know, I am a bigger girl. That, plus my stoma being seatbelt level, I did ask for a belt extension for comfort sake. The attendants were very nice and discreet about this request. :-)

If you have an ostomy, and have experience flying, leave me a comment about your experiences!

Marching to the Beat

Warning: This will be a mommy post!

My mancub has decided he would like to be potty trained. He will be three years old in December. Many-a-family-member have been pushing for me to start training him for months. I even tried a three day potty training during the summer that didn't go very well. After our three days mancub was miserable and panicked any time the potty was mentioned and I was miserable and worn down. I had to force myself to take a step back and really think about who my son is as a person. He comes from very stubborn and independent people. He wasn't going to potty train until it was his idea. I had to back off and respect my sons personality enough to know that he would let me know when he's ready. Saturday started out normal. We woke up and ate breakfast then got dressed and came back upstairs to play. While he was playing he found a portable potty seat that hadn't been opened yet. He approached me and told me that he wanted to use it. I told him that big boys who wear undies use the toilet. He was all for it!

I won't be that mom who describes every little detail but things are going very well, so far. I know he might decide that he has changed his mind and there will be some rough days but I am so proud of my boy. 

Three cheers for Mancub!!!

We looked so cute on Halloween, no?

Happy Halloween!

Happy Halloween to all (both?) of my readers!!

Now that Mancub is almost a 3 year old, I am looking forward to Halloween festivities more than I have in the past several years. He is dressing up like Jake, from Jake and the Neverland Pirates. SO CUTE.

To all my friends, have a great and safe night, no matter what your plans are.
To my fellow ostomates, remember to chew, chew, chew, as lots of halloween candy contains nuts! (Also, remember that red 40 will come out red on the other end, so don't freak out that you may be bleeding to death. Just trust me.)