Where to start?…
I was diagnosed with Colitis in May of 2012. Before this diagnoses in 2012 I had had no previous GI symptoms or signs of having an IBD disease. I was prescribed a couple of different medications that I took over the course of the summer but by the end of July I started having cramping and severe blood loss so I decided to check into the hospital. They ended up putting me on prednisone and things started to let up, a little. My cousin Elise and I had a trip planned out of the country for the beginning of August and because things were slowly getting better I decided to go. It was my first time out of the country and we traveled through London, France, Dubai, and Shanghai. Sounds great right? Not so much. Things were okay until we reached Shanghai, China and my prednisone stopped working. This sent me into a massive flare where I became severely anemic and dehydrated quite rapidly so I ended up checking into the hospital in Shanghai for fluids. But at this point I was in desperate need of multiple blood transfusions.
My cousin was in Beijing for the day so she caught the train back and met me at the hospital in Shanghai. I ended up getting fluids and we jumped on the plane later that night for the long journey back to Boston, MA. At this point I wasn’t anywhere near fit to fly but didn’t have much of a choice. With each flight I was going in and out of consciousness due to the massive amounts of blood I had lost. And if it wasn’t for my cousin Elise, I honestly wouldn’t have made it back alive. After over 24 hours of flying we finally made it to Iceland and spent the night there before catching our final flight to Boston where I met my parents at Boston Logan Airport. (They flew in the night before from Mississippi)
On August 23rd I checked into Mass General Hospital and I received multiple blood transfusions and was put me on a trial dose of Remicade. Less than 14 hours after being released I started vomiting and losing copious amounts of blood again so back to the hospital I went. I checked back in and found out I had contracted C. diff during my previous hospital visit. From there surgery to remove my entire large intestine was the only option. I had my first surgery in mid September of 2012 where they did a Total Colectomy and I was given an end ileostomy. Through all of this leading up to my first surgery I had lost close to 30lbs and was over medicated on pain medicine post op when I was sent home.
Through the months of October and November they kept trying to taper me off the pain medication from surgery and my body kept going through severe physical withdrawal symptoms ultimately sending me to the ER multiple times. Finally after going back and forth with my pain doctor I decided to get myself detoxed off of everything without her consent because I knew the importance of me being off of all medications going into my second surgery and having a third surgery to follow. The day after Thanksgiving I checked into Faulkner Hospital and they ended up detoxing me off of everything in 3 days. To give you a mental picture of the situation at hand…I looked and felt like Ray Charles in the detox scene from the movie ‘Ray.’
My second surgery was at Mayo Clinic in Rochester, MN on my 21st birthday Dec 14th. The gift that simply keeps on giving! This surgery involved the takedown of my end ileostomy and the construction of an internal jpouch which is made up of my small intestine to function as my new colon; leaving me with a temporary loop ileostomy until the jpouch healed internally. Everything went as planned and although recovery was pretty rough I was able to get through it in one piece. Barely.
Upon returning back to Boston three weeks post op of my second surgery, I started vomiting and having severe stomach pains. After having a CT Scan we found out I had a blockage so in January of 2013 I was rushed into emergency surgery. I ended up having an intestinal hernia where my intestines had slipped into an opening in my abdominal wall that was causing ¾ of my entire small intestine to be collapsed with no blood flow going through. Luckily, my small intestine was saved in time and while I was under the knife my surgeon was able to go ahead and complete my third surgery early,’The Takedown.’ After surgery I ended up with a post op ileus for 2 and a half weeks with an NG tube and was put on TPN while my intestines woke up.
In November of 2013 I was diagnosed with Crohn’s Disease due to ulcers found in my esophagus, which are now being treated with Humira injections. Through all the ups and downs of this journey I’ve learned that living with an IBD disease is more than just something that can be fixed. And although I have my days where my body just doesn’t want to cooperate, I’ve learned that patience truly is a virtue. On the bright side, my struggle has been a blessing in disguise. It is the fuel that has lit a fire inside of me (pun intended) that has no plans of going out anytime soon.
Through all of this you’re probably wondering, ”What motivates me to keep going?”…When it’s all taken away, you start to realize that we aren’t here for very long, so whatever it is you want to say or do…say or do it now. Nothing is guaranteed and too many of us get lost in the grind of everyday life; living with a false invincibility for tomorrow’s opportunities.
In short, my road to recovery has been far from easy and has had more bumps and detours than you’re average person would’ve liked to experience, but coming out on the other end, I’ve realized that we’re all a whole hell of a lot stronger than we can begin to imagine and that, “Tragic events which cause change in our lives are often the root of emerging opportunities.“ My purpose in sharing my story is not only to spread awareness for the IBD community but to breakdown the everyday stigmas of talking about a disease that’s main focus is around, ‘shit.’ Literally. (THE SHIT PUNS NEVER END.)
But frankly…there’s an AMBER ALERT out for my shits to give at this point and somewhere along the way I’ve lost my modesty as well, so if you find either one of them please return them back to, ‘The girl with the red glasses.’