Fred – My Colostomy Bag

   If you are scratching your head while reading the title, then please keep reading. If you are under the impression that ostomies are for the elderly, keep reading. If you didn’t know that there are different types of ostomies and reasons for having them, then keep reading. If you are educated on all of this info, but don’t know my story, then I hope you keep reading. My whole goal is to educate and spread awareness. Also, if you are a fellow ostomate, I hope you find this post encouraging and empowering.

 In 2006, I selected to have surgery to save my life by making a stoma out of my colon and remove the Crohns Diseased portion of my intestines/Rectum/Anus. I was only twelve at the time, but had exhausted all other options of treatment. The damage as a result of Crohn’s left me with no choice but to make my Colostomy permanent. Others, depending on their unique case, may only need an ostomy for a short period of time to allow healing. If your Ileum is used to create the stoma ( part of your colon is removed and part or all of rectum kept), then it is called an Ileostomy. Typically, but not always; Colostomies are on the left of your abdomen and Ileostomies are placed on the right. Some medical conditions that may lead to an ostomy include : Crohn’s , Colitis, Cancer, Hirschprung’s Disease, Injury, bowel blockage, or perforated Diverticulitis.

Why did I name my Colostomy? Well, after chatting with others that have ostomies, I realized how common it was to come up with a name before surgery as a coping technique. I was young and looking for an outlet that would make it slightly less complicated to bring up in conversation. I honestly don’t know why I chose Fred, but it stuck. ( Literally. Pun intended.) Fred is a part of me and having it for almost ten years makes it second nature.

Speaking of second nature, I don’t think I have ever missed using the toilet like it was traditionally intended. I don’t have the urge to have a bowel movement. To me, it isn’t weird at all. Fred goes when Fred desires. I poop in a bag and can empty it into the toilet when it fills up or remove the bag, dispose of it, and replace it with a new one. Let me just say how convenient that is for me when it comes to road trips, concerts, and procedure/ surgery prep. Prior to my ostomy, I wore a pull up because I had no control of my bowels and I couldn’t make it to the bathroom no matter how hard I tried. I was a mess. My bag is my blessing.

Just because I have a Colostomy does not mean I am cured and don’t have complications. I cannot be “fixed” except by Jesus. I still have Crohn’s Disease, I still need treatment, and I still need closely monitored. My bag isn’t perfect, but it makes a huge difference in my life. Living with a bag attached to you can be challenging. I have had hernia repairs due to weakened stomach muscles from numerous surgeries, I have been asked if I was pregnant, I have been bullied, and I have been accused of hiding (stealing) things under my shirt. My tummy pooches out a little from all of the cutting that has occurred over time. Do I like that? No, no I don’t, however, there is no point in sulking about it. I cannot change it, so I work on accepting it and improving on things I can do. I even considered plastic surgery at some point because I wanted a flat belly. I have never wished Fred away, but I have found myself unsatisfied with the appearance left by unsuccessful corrective surgeries using mesh. These are definitely not pluses, but it goes to show that you truly cannot judge a book by its cover and that an ostomy is not just a once and done kind of deal. Usually, you cannot see someone’s ostomy unless they show you. I will gladly pull up my shirt and show off my bag , but I also conceal it when it is appropriate to do so. As a personal preference, I typically tuck my bag into my underwear and wear some type of clothing such as a high waisted tummy controller or a camisole depending on what is comfortable to me on the given day. This isn’t necessary, but I like to keep Fred close and flush to my skin  for my own comfort and peace of mind. With age and experience I altered my style choices such as not wearing tight or fitted shirts. You wear what makes you happy. I don’t feel the need to give Fred a bigger spotlight than he already has. Making such subtle changes have hushed the accusations for the most part, but I’m the one who goes to bed and wakes up with an ostomy each day. I chose to accept it and embrace it.  It doesn’t slip your mind, but shouldn’t be overwhelming your conscience either.

Be you and live your life without fearing your ostomy. You can still do things you did before surgery and even things you possibly couldn’t do! Check with your doctor/ surgeon on recovery time and weight limits. Make wise decisions involving your health. Have fun. Over the spread of ten years, I have been a cheerleader, played volleyball, went on multiple mission trips ( in the United States through World Changers), gone swimming, taken beach and camping trips, gone white water rafting, taken Zumba class, been on a zip- line, been a camp counselor, and many more cool things. Take a back up set of supplies with you everywhere and pack a second set of clothes in case of an emergency. It is as easy as that! Showering with an ostomy is left up to you. You can change the whole thing, part of it, or wait and change the appliance after you’ve bathed. This will depend on the frequency of your output and the duration of wear time with your specific type of bag and wafer. Water won’t hurt it.

Love yourself and so will others. Attitude is everything when it comes to body image and confidence. Know that your ostomy doesn’t make you, but that it adds to your individuality. If you have a positive (or negative) outlook, then others will feed off of what you are putting out. In all honesty, it takes time to adjust to having an ostomy or knowing someone with one. It is a learning experience like other changes in life. Go on dates. Don’t think that no one will love you or want to be close to you. If you are in a relationship with an ostomate, communicate about how you feel. Take chances.Wear a bikini. Take pictures. Be open and accept/ask questions. Don’t put yourself down. You are beautiful. Ostomies are not gross, they’re simply an alternate route for waste to exit the body. Have good hygiene and some Poopourri spray and you are set! Tadaaa! No one even has to know if that’s how you want it.

Network!! This is a big deal to me. I would not be who I am today without the advice and mentoring from ostomy nurses, ostomy patients, and camps such as Youth Rally and Oasis. Getting to know others that are going through similar situations makes the biggest difference. No one wants to feel like they are alone in their suffering. It is easy to say or assume that no one understands, but that just isn’t true. Find a pen – pal. Read people’s stories. Research different support groups or Facebook pages. When I was first diagnosed, I didn’t know anyone that knew what I had or what it even was. I didn’t start meeting or hearing of others like me until I was sent to the GI floor of the children’s hospital to be treated. Once that door opened, people started coming out of the woodworks. I was told about camp for kids and teens with Crohn’s and Colitis, I was introduced to Child Life Specialists, and camp for kids and teens with ostomies. Since then, I have come across many awesome stories and people that have had major impacts in my life.  I have had the pleasure of being closely involved with four individuals and their journeys with Crohn’s and ostomy surgery. Each one was a learning experience and a blessing. I highly recommend getting connected with others. You can learn so much about them and yourself.

If you have read to the bottom of this post, thank you. This matter is so very important to me. I felt inspired after reading personal stories of others who are struggling or who are triumphant in their battle. No two stories are the same. If I said something to offend or upset you, please forgive me. That is never my intention. There is only so much sugar coating you can do. Poo is still poo and everyone does it one way or another. Feel free to share it, contact me, or let me know what you’d like me to write about next.

-Lacey

 

Beautiful Beyond The Pain

Why should you get involved with our foundation?

BBTP was founded in 2013 by Alexandria Davidson. The purpose and mission of this organization is to allow adolescent patients with chronic conditions the opportunity to attend camps with others that have the same medical diagnoses so that they ” feel like everyone else” and are not alone. We are to educate patients, families, and others on the many silent diseases, while providing a positive outlet with others suffering with similar conditions.

I am involved because I have personally fought silent illnesses as well as attended medical camps over the years. We have started Camp Chameleon. Our aim is to help transition teens to the adult world in a medical sense. The problem is that you go from being a pediatric patient to suddenly being tossed into adult care. This is an overwhelming grey area of life because there are no guidelines being given to patients to direct them in the right direction. There is a misconception that chronically sick patients just get used to their situation. No, we do not “get used to it”, we get tired of it. When you are sick as a young child, someone else makes your decisions, but the day you turn 18, you are legally obligated to stand up for yourself and expected to know what to do. So much changes in what feels like an instant. Suddenly, you have to sign your own documents, find an adult specialist that takes your insurance as well as your case, juggle your finances or lack of with your medical expenses, and other stressful matters.

There is great news! We have a group of individuals who’ve gone through these things and want to use their knowledge so that you don’t have to figure it out alone. Camp Chameleon is for addressing the fact that there is hope and you have the ability to independently thrive in the adult world. We want to invite young adults from 17 years old and up dealing with silent illnesses, to join us for a weekend full of fun and learning. You don’t want to miss it.

If you are not directly affected by a silent illness, but would like to be apart of our cause, then I encourage you to spread the word, donate financially or your time, and pray for us. We want to make a difference in lives, but cannot do it alone.

Information can be found at http://www.beautifulbeyondthepain.org

Office: 770-559-4537

Find us on facebook.

Sign up for Camp Chameleon today online!

Some silent illnesses that we support:

• Crohn’s Disease & Ulcerative Colitis
• Lupus
• Autism/Asperger’s
• Diabetes
• Hearing Impairments
• Mitochondrial Disease
• Eating Disorders

 

Fooling The Majority Into Thinking You Are “Okay”

If you were asked for a resume or a list of talents you possess, what would you put? Over the past four years my accomplishments consisted of graduating high school, attempting to work a summer internship program, and a whole three months of college.Throughout that time I picked up a valuable skill. I managed to fool people into thinking I was fine. Was I really fine? Definitely not. It was becoming a coping mechanism. If I told people that I was okay ( whatever okay actually is), then maybe I’d believe it too. How do you do it? You ignore how you feel, put a bright and friendly smile on, and add extra spunk to your attitude. Pretending to be bright-eyed and bushy tailed is more effective than it sounds. It sounds cheesy and fake, but people want to see that you’re ” better”, so when you grow tired of not being better, you tell them what they want to hear. I’m not saying that everyone is the same and that no one cares. I am saying that it is challenging for chronically ill individuals to be asked on a frequent basis how we are doing when quite frankly, we aren’t sure how we are. There is so much that happens regularly in our daily lives that we are accustom to occurring. There are also many things that occur that we can’t prepare for and are not used to. Trying to explain that is just a ridiculous task. Sometimes it is just easier to say that we are okay.

September Brings A New Meaning to Fall ( Things are finally “falling” into place)

Today was long awaited and I couldn’t be more satisfied with the result of my visit. I saw my new adult GI Specialist – Dr. Pore, with Atlanta Gastroenterology Associates. He was fantastic and I couldn’t have hoped for a better experience. His demeanor, his mannerism, the amount of footwork and personal calls he made to make sure everything was aligned properly for me took me by surprise. I am so very grateful for the prayers that went toward this long term concern of mine. God knew that it was pressed strongly on my heart. This morning I didn’t possess a bit of nervousness. I was impressed from the moment I walked into the building.
Dr. Pore started off the appointment by asking about my birthday and how I celebrated. How awesome is that? He made it clear that each and every day is a gift and that’s why he worked with me to get me out of the hospital in time. So glad we are on the same page and in the same book. Next, he asked for permission to examine me. It is not everyday you have a Dr. be so considerate. He addressed my discomfort, pain, and struggle with the side effects of the steroids I’m on.
The game plan is this :
Have IVIG infusion at infusion clinic in John’s Creek.
Taper ( cut length in half today) Prednisone down so I’m not on as much for another month.
Colonoscopy scheduled for October to check progressiveness/ location/severity of Crohn’s after steroids and antibiotics have cleared my system. From there, we will be able to see if giving Entyvio a try is an option or not. He will also check with an Immunologist and expert on my conditions to see if my body can even handle a drug like that.
I have been referred to a pain specialist clinic that is spoken very highly of. Dr. Pore is going to call him and discuss my case/records and an appointment will be made shortly.
I see a new primary care Dr next Wednesday morning at St. Joseph’s, however, she also has an office in John’s Creek for down the road.
I see a new heart specialist September 15th with Dr. Baron Williams for Hypertrophic Cardiomyopathy.
Did I forget anything? Oh yeah, I think I penciled in some time to breathe and sleep a tad. Haha
This is what my world consists of, which brings me to my next point. I am not ignoring you. I get your messages. I mean well. I appreciate everyone’s concerns and messages, but I can’t respond right away or all of the time. I have good intentions, but I can only do what my body will allow. If I tell you I’m going to try to call you after an appointment or after I eat and I don’t, then I most likely fell asleep or don’t feel well. I’m not blowing you off. If this bothers you and you don’t want to “put up” with a friend like me then I completely understand. I don’t need you, your pity, or for you to guilt trip me for something I can’t help and you aren’t obligated to deal with. If this wasn’t my journey, I don’t know how I’d handle having someone in these shoes in my life. It isn’t for everyone. You are off the hook. I don’t want someone waiting around hoping I can make plans with them or frequently disappointed because I need to cancel or whatnot.
The friends I have made the choice to be active in my life after God placed them there and I’m more than blessed that they care so much for me. I know it isn’t easy to be by my side, but you make all the difference. I’ll say again, it is the QUALITY not the QUANTITY of the relationship that matters. I rather have 10 close and dear friends than 45 “sometimey” so called friends.
Thank you again for the overflow of calls, texts, cards, private messages, voice mails, visits, snapchats, photo comments, mail/packages, flowers, and asking my family and friends about what’s the latest. I tagged as many of you as it would allow ( on Facebook post)  in hopes that you could all see my update. I know so many of you have been asking and I try not to intentionally leave anyone out. Feel free to share.

Much love to each of you,

Lacey

The Perfect Day

 What comes to your mind when you think of the perfect day? Maybe to you it is the day you get your first car, get married, start a family, meet the celebrity of your choice, or take a trip you’ve been dying to go on. To me though, the perfect day will be the day I meet Jesus and he takes me home. To some, this sounds like a death wish, but let me explain to you a little as to why it would be my perfect day.

I was born August of 93′ and was immediately rushed to a special unit where I was diagnosed with Ebstein’s Anomaly. Not too long after my first medical diagnosis, it was discovered that I have Hypogammaglobulinanemia. It is an auto immune deficiency that keeps my body from fighting infection on its ownown and requires me to have an infusion for the rest of my life. Six years down the road I was diagnosed with Crohn’s Disease. At age ten, I went to the doctor for a routine check of my heart and there was something detected that concerned him. I was then sent to have a heart catheterization where I was assured they were only ” investigating ” to see if it were serious. My heart stopped on the table and I was kept alive because of machines and God’s will. After several days, I awoke from an induced coma to be told I had two more heart conditions. Since then, everyday has been a battle of some sort. I live in pain. Granted, I do have good days. That is a lot of sickness and sadness if you choose to look at it in a negative way, but I don’t. No doubt it has been a painful journey, however, God saved me and in His Word he promises to end my suffering. Some may be healed here on Earth and others not. I know that when He calls me home, I will finally be at peace. I’ve always said, I am joyful because I know that the only Hell I’ll ever go through is here on this Earth and one day that will end and I’ll spend eternity with God in Heaven. The day that I am rescued from pain and sorrow is going to be my perfect day. Until then, I will take one day at a time and strive to do what I’ve been sent here for.

We know that the whole creation has been groaning as in pains of childbirth right up to the present time. Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption as sons, the redemption of our bodies. For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what he already has? But if we hope for what we do not yet have, we wait for it patiently. Romans 8:22-24

 

 And I heard a loud voice from the throne saying,”Now the dwelling of God is with men, and he will live with them. They will be his people, and God himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.” He who was seated on the throne said, “I am making everything new!” Then He said, “Write this down, for these words are trustworthy and true.” Revelation 21:3-5

– Lacey 11-15-14