My Stomaversary

On September 6, in the year of 2013, I had a life altering surgery that involved removing my colon and left me with a permanent ileostomy. Life as I knew it immediately changed for the better, and I wouldn't take back those brutally sick days or that awful colon for neither fortune or fame. 

Many of my readers know my story...but what you may not know is that every year on this date, I've taken the opportunity to really celebrate the gift of life. A life that was almost snuffed out so many times due to Crohn's Disease that I've lost count. On 9/6, I intentionally spend time doing something that causes me to reflect on God's goodness, but I also take time to just celebrate Ava. Yup, it's my Stomaversary!!! 

And this year's no different...I spent my entire day at the "Get Motivated" seminar at the Liacouras Center. In a room of 1000+ folks, there I sat alone, taking it all in. As I listened to speaker after speaker, and quote after quote, I began meditating....pondering on the many hopes and dreams that I'm still working on achieving. I pray and dream A LOT (Way more than I did when I felt I had no hope) and they are both finally starting to come into fruition. I know I'm not alone. There were other dreamers, hopers, pray-ers, and visionaries in that room...and you've still got hopes, dreams, goals and visions that refuse to lay down and die. You still pray and dream and even cry it out sometimes. 

The same way I made the decision to change my life for the good 3 years ago (even though it didn't seem good at the time), I chose to do today. Changing your life starts with a decision. But you've got to do one thing: START. No, you may not have all the answers, but you'll only remain a hamster on a wheel if you don't decide to stop the madness, get off and go after that life you've dreamed of. Just start. You'll figure the rest out. Let the spirit be your guide. PEOPLE NEED YOU! Please...please...Don't die with the unfulfilled vision inside of you. 

Repeat after me: The rest of my life will be the best of my life. (Put it on a post-it note a'la Mary Jane style :) and say it even after it begins to materialize) 

"If you're casual about your dream, you may wind up being a casualty!" -------------"You've got to die to bad habits before you can give birth to who you were called to be" - Les Brown

Greatness Is In You!

(Don't judge Ava. She knows it's 9/7 now. Ava was out celebrating life, lol. - now go celebrate yours) ❤️

Officially A Graduate!

The photographer at my graduation today asked me after conducting what seemed like my own personal photo shoot, "So, how long did it take you to complete this degree program?" 

That really got me to thinking about this journey that I've been on for 19 years. I graduated from Girls' High (Philadelphia, PA) in 1996 (240 Class - Stand up!! 😆) 

I immediately entered Penn State and stayed enrolled for 3 years.  Little did I know that a not-so-well-known disease called Crohn's would come in and literally rock my world! But I never gave up. 

Even though countless bouts of sickness...in and out of hospitals...steroids, experimental drugs, massive weight loss (98 lbs at my lowest), everything I ate making a quick "exodus" someway somehow (y'all get it), depression, major suicidal thoughts, hair loss, having to wear a PICC line, a LOT of needles, being malnourished because my colon literally gave up on me, and ultimately winding up with an ileostomy...these things...THESE things TRIED to take me out of here. (..and they almost succeeded countless times.) But...I never gave up. 

Plenty of sleepless nights, papers, tests, feelings of inadequacy, second guessing this whole school thing....but I never gave up.  (The classmates and faculty at Lancaster Bible College wouldn't let me anyway...)

8 years as a building inspector have been sooo fulfilling. But I know that in addition to that, there's something new and different on the horizon. Going through these terrible things made me gain a better appreciation for life but behind my smile lies the truth of the massive hell my life was for 15 years. Now, my mission is to uplift others, be a soldier for justice, give a voice to those who don't have one...and these things I will do until my last breath. I give God the glory for giving me a new beginning. I'm happy. I'm healthy....and I choose to win. 

Catching Up, Back to Work, Plane Rides, and other Random Babbling :)

And just like that I'm back!! Yes, I've been away for a while. I actually didn't realize that my last post was written in November until I logged in. Sheesh, I've been way off track! (With good reason,of course!) I actually started back to work. Until now, I hadn't worked one single day since my surgery in September of 2013. My body and my pocketbook told me that it was time...hehe

So lately, I have been managing a tax office for Jackson Hewitt. It's been pretty cool thus far. It took a while for me to get adjusted to a 44 hour work week..especially since I had spent most of my days at home chilling. But I'm up and rolling now. 

Since November, I also had my first plane ride since my surgery. I was sooo nervous. So much so that I refused to eat prior to boarding because I had an awful premonition of my bag exploding due to pressure!! LOL Oh, the woes of an ostomate..I was careful to pack all of my necessary supplies in my carry-on just in case I didn't have immediate access to my luggage upon landing. Additionally, the UOAA (United Ostomy Associations of America ) has a special "Travel Communications Card" to give to TSA agents and it's designed to help speed along the screening process. Let me tell you, it worked like a charm. The TSA agents were super kind once I showed them my card and had apparently seen the card before. Also, there were no disastrous explosions on the plane...from my bag or otherwise (Thank God!). My husband and I flew to Atlanta for a marriage retreat, and also to visit friends. It was an awesome trip and the weather was much warmer than Philadelphia! If you are interested in the Travel Communications card or other handy-dandy travel tips, visit the UOAA here.

Lastly, I made a terrible move when I returned home. I stepped on the scale. Ha! I had not done so in months because I already knew I wouldn't be happy with the reading. Truth is, after my surgery I was 99lbs., and at my last reading I was 185lbs.!!! I was NOT a happy camper. Yes, I'm ecstatic about the fact that I can eat and actually gain weight (something I couldn't do for 15 yrs with Crohn's) but enough was enough!!! This time, I was surprised to find out I weighed 180lbs, but it was still too much. So what did I do? Last Thursday, I started taking up kickboxing. Aside from the quad pain/soreness afterwards, it was an excellent move to get me on the road to being athletically active. I've been interested in running with Team Challenge (CCFA) for a while now, so I believe this will be an excellent way for me to build stamina.

So yes, I've been away from writing for a while, but a lot of good things have been going on with me. I hope all is well in your world! Share any new "goings-on" in your life below!! I'd LOVE to hear from you ;-)

The Pink Shirt: An Ode to Mack

It was the year 2008. I was 29 and had just undergone emergency surgery to have 1 foot of my colon removed due to my colon being punctured during a colonoscopy. Two days after my procedure, I was sent home only to be rushed back with a temperature of 104. I had become septic and had to go on strong antibiotics. The word severe doesn't even scratch the surface when referring to my pain level at that time.

Upon returning home, my parents had a heightened awareness of my limitations, and did everything in their power to make me comfortable. When trying to sleep that first night, I realized quickly how difficult it was to relax lying in my bed. My father (Michael aka "Mack") suggested that I try sleeping on the couch because I could be propped on the armrest, and the use of pillows would resemble the "craftmatic" style of an adjustable hospital bed. It worked like a charm.

One week into recovery, my father stayed home to be with me while my mother went to church. He made me eggs, toast, and tea. I remember it well because my Dad is not the best cook, but that day it was extraordinarily good (either that or I was hungry). Shortly after finishing the tea, my body felt like it exploded. There was no way I could control it.Yes, I was having "an accident". Calling for my Dad, he rushed down the stairs, gets quickly briefed on what was happening, and quickly swoops me up into his arms and carries me to the 2nd floor bathroom. Granted I was only 110 pounds, but I was 29 years old!!!!

After becoming aware that my clothes were soiled, he disappeared. Thinking he had gone into my room to find clean clothes, imagine my surprise when he reappears carrying a pink shirt and gray sweat pants - the pants:mine, the shirt: his. (That's right...real men wear pink, lol.) He said "I brought the first thing I could find. I didn't want to go through your drawers so I brought you this shirt." After getting cleaned up, donning the shirt and pants made me feel like new again. My ego and mood were still a little bruised, but Dad assured me it was going to be alright.

Some weeks later, I tried to return the shirt and he told me to keep it."I'll never fit it again," he said while hitting his belly. 6 years later, here I am wearing Dad's pink shirt. Sometimes I wear it to bed. Sometimes I wear it under a jacket for a quick run to the market. Sometimes I just wear it to lounge around the house. No matter when I wear it, I always think of my Dad and how he saved the day. He didn't think, he just acted.

And that's the kind of guy he is. He handles all the hair-raising, dreadful, eerie, and nightmarish issues with the prowess only a real Dad could exhibit. I can always count on him to be there for me. He is my hero...and this here shirt: well, it's my favorite. 

Get Out There and Live Your Life, she said

I last visited my GI (gastrointestinal) doctor a few months ago. Due to some complications caused by acid reflux and heartburn, I had to be seen again this past week. My care is managed by Dr. Choudhary at Thomas Jefferson Hospital in Philadelphia.

When I arrived at her office, I was looking for Mary Anne, the receptionist that has been checking me in for years. But Mary Anne wasn't there. Instead, in her place was a much younger, much less experienced, and not as warm new receptionist. I signed the necessary forms, then processed my disappointment while taking a seat in the waiting room.

When my name was called to go to an exam room, I noticed that it wasn't the usual voice of Mary, Dr. Choudhary's medical assistant. I popped my head up to acknowledge my  name being called and locked eyes with a short, dark haired medical assistant, greeting me with a smile and leading me to the back. Another new person? I thought. Whoa, is my doctor here today or is there a substitute for her, too?

When I arrived at the back, I was greeted by a very familiar face - Elizabeth, a nurse practitioner who works closely with my doc. She was so happy to see me, giving me a big hug. My visit was unexpected, and she was upset that I was back so soon. I assured her that my visit had nothing to do with my ostomy, and that seemed to put her at ease. She told me there were a lot of changes around there....as if it weren't blatantly obvious.

When Dr. Choudhary entered the exam room, she and I exchanged the usual pleasantries of a doctor and patient who've shared 12 years of friendship, mutual respect, and admiration. We asked about each others' families, and talked briefly about life in general. When I told her of my problem, she asked if I had taken the acid reflux medicine previously prescribed to me, or if I had any refills left at the pharmacy. I responded with a yes, and was told to give it time to work. 

She paused for what seemed like an eternity, then says, "I think you like it here. You've been coming here for so long that it's like you're making up reasons to see me. Ok, maybe you actually have had some reflux symptoms, but you don't have to come and see me in the office. Just call. And if you want to meet for coffee or something, let me know. You have all of my numbers; the office, my cell, my pager - just reach out if anything comes up....but it won't. Because you're doing great. You're healthy. Stop coming around here. This place is for sick people. If you want to see sick people, I'll show you sick people. I can even get you a job here since you like it soo much. But you're not sick. You're well, Ava. Get out there and live your life. I don't wanna see you back here anytime soon."

I chuckled while she was talking and replied with an "OK", and even smiled widely while she was escorting me to the checkout desk. I didn't think much of what she said, until I hit the parking lot. 

It dawned on me...She was right. In the 12 years that I have been a patient at Jefferson, I've gotten used to the campus and the people. The employees in various buildings know me by face and some by name. I've been so used to being around there, I think I miss it when I'm not there for a while. That's why it was disappointing not to see my "usual friends" at the office. Maybe they've moved on....maybe it's time for me to do the same.

So, unless I get a job at Jefferson, I'm not going to be seen on those grounds. It was there that I was born 35 years ago, and it was there that I almost died last year....but thanks to God and the wonderful medical professionals who work there, I'm alive now. I'm going to take my doctor's advice and "Get out there, and live my life." I've got MUCH more living to do. 

It's my Stomaversary!!

Last week, I wrote a blog post entitled, "What A Difference A Year Makes" and it highlighted how different my state of health was just one year ago. This is kind of a continuation of that theme, because today is in fact the day I had my proctocolectomy. Yes, the day that I was wheeled down to the 5th floor of the Foerderer Pavilion at Thomas Jefferson University Hospital, and Dr. Ben Phillips and his awesome team removed both my colon (large intestines) and rectum and formed "Fill-up", my stoma. It's my "Stomaversary!!!"

You may think of "Stomaversary" as a silly, or even cheesy term. But it's actually a term that's pretty common amongst people like me, who have stomas and live life as an ostomate. I can remember September 6, 2013 very clearly, as well as the days leading up to the beginning of my new life without Crohn's. I'm pretty sure if you ask anyone else with a stoma, they too will remember when (and most likely where) they got it.

Looking back, I can remember that I already had a hole in my abdomen, caused by a nasty fistula, and it was leaking waste for a whole week prior to my surgery. When I arrived at the hospital, the doctors put me on "NPO" status, which is an acronym for "Nil Per Os" (Latin) which basically means "nothing by mouth." I went a whole week without eating, but 1) it wasn't the 1st time I'd experienced a week-long NPO, 2) it wasn't that bad because they gave me IV nutrition (TPN) so I didn't feel overly hungry 3) due to the fact that the waste coming out of the fistula opening was burning my skin AND I was having countless accidents from waste escaping the "normal" way, eating probably wasn't the best idea!

However, the night before surgery, while viewing countless ostomy related videos on YouTube, I can vividly remember asking the medical team if I could have some liquids. They approved and I was brought a tray of orange jello, Boost Breeze (peach flavored), chicken broth, and Wawa Lemon flavored iced tea. Any other time, I would've scoffed at the dietician aide for bringing me an all liquids tray, but this time I savored every item brought to me that night in a sort of "Last Supper" ritual. Even an hour or two later when they burned my skin on the way out, I didn't stress or cry, as I had just nights before. I had accepted my lot. My colon was going to be taken, but looking on the bright side...I had hope of being renewed.

That's just it - it helps when you are at peace with the hand life deals you. You just have to constantly remind yourself that you are strong enough to strategically play those cards and win. I have a couple of friends (and even a family member) who are being faced with this same surgery and though I can be a living breathing example of a successful outcome, I would NEVER tell someone that because it worked out for me, that they should also agree to it. This is one decision that no one should make for you...because YOU will forever live with the outcome.

"Fill-up" and I are living the good life these days. He knows I don't love him (and never will), and he doesn't love me either but we have agreed that we need each other to survive so we'll be cordial ;-) Since I can eat pretty much whatever I want, Fill-up and I are gonna live it up this weekend: Stoma Style!

If you are living with a stoma, or had a life-changing surgery, do you remember the date?

What A Difference A Year Makes

Last August, I attended the beautiful wedding of Kenya Simms and Patrick Massie at Brigalias in Sicklerville, NJ. Kenya is like family to me, and her new husband, Patrick is a very welcomed addition ;) The bride was glowing, the wedding party was absolutely gorgeous in coral and silver, and the weather was simply delightful! The ceremony was held outdoors, under a white pavilion on Brigalias perfectly manicured landscape.After the ceremony, the guests were ushered into a posh hors d'oeuvres area with everything you could possibly want to eat. Not to mention, the invitees were all dressed to the nines. My husband, my parents, and many of my family members were present and thoroughly enjoying the festivities....

But....I was sick. Yes, I was present at this momentous occasion, yet I wasn't. I wrote in a previous blog post entitled "The Story Begins...(Part V)" about how July-September 2013 were really rough for me. Those months were full of pain and turmoil, as I dealt with having abscesses from Crohn's and external lines inserted in my abdominal area to drain those rotten offenders. I attended Kenya and Patrick's wedding with two drains attached to my body, underneath the dress I had purchased just for the occasion. 

I remember the dress clearly...it was a size 2, and though it was really pretty, I cried when I bought it. It's small size was a painful reminder of just how much weight I had lost. Aside from my family, none of the guests at the wedding knew about the 'secret' abscess drains. It was, however, somewhat embarrassing to see some old friends that I hadn't seen in years. Why was it embarrassing? Because I actually looked sick. Considering that Crohn's is known as a "silent (or invisible) disease", I went for many years with very few people even knowing that I was waging war with an internal enemy. But this time, in the war between Ava and Crohn's, Crohn's was clearly winning...

I was determined to be happy on this day. I barely had enough strength to walk straight or stand for long periods of time, but here I was, in a pretty dress no less, trying to put on my best happy impersonation. This was an undoubtedly joyful event; I was elated about my friends starting a new life together. I just wish I had enough energy to get out on the dance floor and cut a rug with them. I couldn't even drink champagne, because the medicine I was taking did not mix with alcohol, and a medical emergency would've taken the focus off of the blissful couple, and onto me. As much as I like a little bubbly in my life, I couldn't have that! I did, however, pose for a few pics.

 My sisters Alfreda, Gail, Betty, niece Danielle, and me

Just me ;)

Well guys, fast forward to this year and all I can say is, "Play that song, Pharrell!!" because I truly am HAPPY. If you can't tell from the pictures I've posted thus far on this blog, I thought I'd post a pic from an event that I attended last week to show you guys just how far I've come since last August. I bought a new dress for this occasion too, but it definitely was NOT a size 2. In fact, I need to get my butt in the gym so I don't gain any more weight!

What a difference a year makes!!! Ain't God good?? Kenya and Patrick's wedding was exactly one month prior to my unplanned, unexpected proctocolectomy, which left me with a permanent ileostomy. If I had known I would look and feel as good as I do now, I would've done it sooner! (Ok...maybe not.) At any rate, I'm excited to be living my best life as an ostomate, and delighted that Kenya and Patrick are living their best lives as husband and wife, happily married.