Celebrating a Triumph

  Often times you have to acknowledge where you’ve been to truly appreciate where you are. Today marks 5 years that I have gone without surgery. Doesn’t sound like a big deal? Well, let me tell you that it’s quite the accomplishment for me. My long running record could barely manage going a year without ER visits, admissions, and procedure/surgeries of different sorts. I jumped for joy if I made it 6 months to a year. Isn’t that sad? I took the breaks I could get even if I suffered off and on during that time period. I wouldn’t give in and go to the hospital for help until I absolutely couldn’t handle it any more. When you’ve spent any time being sick and  personally know the ins and outs of the process, you try to steer clear as long as you can get away with. It gets old. In my experience, there is no such thing as a “short stay”. The weeks turn into months. Although I have been in the hospital within my new 5 year stretch, things were able to be treated without going under the knife. I thank God for the biologic Entyvio and that it’s the first I’ve been on that works. I’ve never known what remission was like. 

  I still have other body parts that fail to do their jobs, but a win in one area is still a win! My Colostomy ( FRED) is hanging on and behaves most days. I’m on medications to stabilize the bouts of IBS ( Irritable Bowel Syndrome). My 5 year old Power Port is going strong. Due to my stance against having the port permanently removed, I will not be having my Tricuspid Valve replaced at this time. Recent test showed that my Thymus Gland/mass has shrunk and lit up less than on previous scans. The surgeon released me once I agreed to a follow-up MRI in a year to review the situation. If I discover at my upcoming Neurology appointment that I tested positive for Myasthenia Gravis and surgery is recommended, we will then regroup and come up with the most reasonable plan of action.   

Today I celebrate and thank God for how far He has brought me and for every battle that we’ve overcome. Don’t forget to recognize your triumphs, no matter the size. Take one day at a time and don’t give up. You won’t know how beautiful tomorrow will be until it comes. If it’s done nothing but rain on you, soak up every ounce of sun that is coming.

October 3, 2012

My 15th World IBD Day

To you, today is most likely another Thursday that went by as you eagerly await for Friday to get here. To me, today is so much more. You probably did your daily routine, checked social media a time or two, you may have had time for a quick break long enough to scarf down a bite to eat and if you’re lucky, go to the restroom too. If that is the case, I hope that you slow down long enough to read this and that it open your eyes to what others are going through on what appears to be just another day of the week.

As a six year old, when you get the news that you have a chronic intestinal disease called Crohn’s that is the reason behind why you’re so sick, it shakes things up quite a bit. For several years, I didn’t know a single soul that had what I was diagnosed with. When I did meet someone, he was my fourth grade friend’s uncle, and was much older than me. Other than knowing his stomach ” bothered him a great deal as well “, we didn’t seem to have much in common.

Many things changed in the years that followed the discovery of my Crohn’s Disease. I learned doctor lingo ( or at least tried to understand what they were saying), my condition worsened, I memorized my medication list and full medical history, I lost touch with kids my own age and grew up spending the majority of my time with adults, and I quickly increased my number of hospital admissions. It wasn’t until I was twelve for my turning point to occur. In desperation, I volunteered for a Colostomy bag. The only things I knew about it, was what info I gathered online and through sources given to me by the wound/ ostomy nurses at the children’s hospital. That was the only preparation I received. Yes, I was a bit nervous. Who wouldn’t be? But, I was extremely sick and had run out of options.My Gastroenterologist didn’t force the thought of surgery on me, I opted for it in hopes of a better quality of life. Going in to the operating room, I was still uncertain as to if it would be a permanent and done deal or something that would allow my bowels to rest and heal and reverse at a later time. It was not until right before I was wheeled into surgery, that the surgeon told mom and I that he didn’t know what the outcome would be until he got in there and saw the damage himself. That isn’t what you want to hear as a patient or as a mother of a sick child. It was too late to turn back and run from the situation. When I awoke, I had a permanent ostomy on the lower left side of my abdomen, a 7 inch incision closed with staples from above where my belly button had just recently been, but was there no longer, down to my bikini line, a drain tube in the lower right side of my abdomen, and bandages in my rear where things had been permanently closed for business. That is enough to make anyone panic. I chose to remember that as the event that changed my life for the better. It wasn’t until this particular hospital stay that I became aware of The Crohn’s and Colitis Foundation of America and told about Camp Oasis. I was inpatient for that summer session, but the following year I was able to attend and I all I can say is that it was the experience of a lifetime and one I hope to never forget. The bonds that I have made are indescribable and what I hold most dear to my heart other than Jesus.

Looking at me, you probably couldn’t tell that I’m battling an Irritable Bowel Disease and that I release waste from my bowels in an alternate manner. When I put on a smile and some makeup, it is hard to tell that I am much different than the typical young adult, but don’t be fooled. Looks are deceiving. Get to know people. Share your story. Be open and real with people. Don’t assume that we are all the same, that couldn’t be further from the truth. Fellow sufferers, know that you are not alone, ever. Friends and family who aren’t sick, thank you for not leaving our side when times are rough and we feel like we are falling apart. Forgive us for having to cancel plans.  Be sincere when you ask what is wrong or how someone is doing. Sometimes prayers and I love yous go further than you think. We lose people to these awful diseases everyday; cancer isn’t the only thing that kills and sucks.Education and awareness are vitally important. If you don’t know someone affected by IBD or have any idea what it is, ask one of us that have it or do some research. It is amazing what you can learn about someone/ something nowadays with social media and the available resources.