Intro to Me!

Welcome to my little slice of Blogger heaven (: My name is Baillee, I'm 27 yrs old, and I was diagnosed with Ulcerative Colitis at the age of 10. A few years later, my diagnosis was changed to Crohn's Disease, despite my gastroenterologist telling my parents that one diagnosis cannot be changed into the other. There are still big questions there, a point that I'll touch on again later.

Just before Thanksgiving 1998, I mentioned to my mother (who is a nurse) that I had been having constant diarrhea for about a week. I didn't tell her prior because, at that time, it wasn't uncommon for this or that food (yogurt, purple grape juice, etc) to upset my gut, but those episodes would typically resolve themselves with time. She started an elimination diet on me; for a few days each she'd remove meat, dairy, gluten from my meals, to see if the absence of any of these things improved my bowel movements. Nothing made any difference, and by the time a few weeks had gone by, I'd begun to see blood in the stools. As soon as I noticed this, she took me to my primary care doctor. They ran the gamut of tests: small bowel series with barium (I do NOT recommend this; awful stuff, barium...), drinking Castor oil (also terrible), fecal parasite tests, heavy metal toxicity testing, you name it, I had it done. When none of these tests were conclusive, they sent me to a gastroenterologist in Charlotte, NC.

I was scared to death going in to see him. To be ten years old and have been through what I had at that point, I was none too eager to see another doc. I remember asking my mother what else they could possibly do to me, and she shook her head and said that she didn't think there was anything else they COULD do. Dr. Richard Sigmon III walked into the room, introduced himself, and set about his examination. Anybody who has experienced a gastro exam can feel my pain at this point... the occult blood test, alone, is traumatizing enough. He sat back, looked me in the eye, and told me that he wanted to do a colonoscopy. As he was explaining what it would entail, I broke down into tears. Here was another test... I wanted to run as far away as I possibly could but was frozen in place.
Fast forward a few days... I'll spare you the details of the bowel prep. After the scope, the doctor showed me the pictures of my gut. The tissue that should've been healthy and pink was angry, red, and pussy... it looked like raw hamburger meat. This was the reason I wasn't absorbing my nutrients and was grossly bleeding, causing my hemoglobin to drop to dangerous levels. I was deemed to be a UC patient and was immediately started on a high dose of prednisone, ciprofloxacin, metronidazole, and Asacol (sulfasalazine).

Being completely honest here, this diagnosis did NOT scare me. My dad has Crohn's Disease, too, and he was able to maintain his process very well on his own. He was diagnosed at age 16, so he was/is very capable of identifying his disease triggers and how to keep himself healthy. In fact, I knew that a couple of the medications I was now taking were the same as he was, so I thought it was kinda cool... we could take our meds together and be just fine. How little I knew...

Within two weeks of being put on the Asacol, I showed up to the hospital, screaming at the top of my lungs in pain. I had just been sent home the night before, after having my Asacol dosage upped. By the following morning, I was writhing in agony. Dr. Sigmon stayed up all that night, doing research on the internet (it wasn't nearly as sophisticated in '98 as it is now), and made the discovery that I was experiencing drug-induced pancreatitis. If you haven't experienced it, it feels as though someone is driving a machete into your chest, just below the sternum. As soon as we removed the sulfasalazine from my regimen, I improved almost instantly. My amylase and lipase levels took a while to come back into range, so I stayed in the hospital for about a week after. After that, they tried in vain to get me to remission using high doses of steroids and antibiotics. Nothing worked. I was in an almost constant state of exacerbation. I learned the hard way what foods would make me sicker, and had to have the discipline of an adult to cut myself off from milk, chocolate, soda, and pizza. How many ten year olds can say that they've been able to do that on their own?

Fast forward about five years. I do that because all those years were pretty much the same: meds stop being effective, pain and symptoms get worse, end up in the hospital for IV symptom and pain control, get home, feel ok for a while, "rinse and repeat cycle." But when I was 15, Dr. Sigmon told me that he'd scheduled me to receive an infusion of Remicade while I was there in the hospital. Remicade was being advertised on TV as a treatment for Rheumatoid Arthritis (RA), another pervasive autoimmune disease. It is a solution to be infused over no less than two hours intravenously. I didn't hold out much hope, but within the first half hour of the drip, I had my first solid BM since 1998. It was like a miracle drug. I got another infusion in the hospital several days later, and was then released to home. My third dose was to be given outpatient in the doctor's office. All was well, I was hooked up to the IV and was contentedly watching Atlantis on TV. A few minutes later, I cleared my throat. A little bit, and it became a scratchy cough. My mom and the nurse looked over at me, and I swear I've never seen two women move so fast in my life. The Remicade had given me anaphylactic shock, and my airway was closing off; the reason why my throat felt like I had something stuck in it. I was immediately taken off the Remicade drip, given Tylenol and Benedryl IV and put on oxygen and fluids. My temp spiked, a result of the insult to my body, and I fell asleep in the infusion recliner for a couple of hours before they would allow me to go home.

So, my ray of hope was doused pretty quickly. My body went back to the same diarrhea and cramping routine, and all I could do was try to hang on to my quality of life by the fingertips. During this time, my UC diagnosis was changed to Crohn's Disease, and my body had more fun surprises in store for me... I began to have transient joint arthritis and to develop pyoderma gangrenosum. Basically, toxins would escape through weak places in the intestinal tissue and fall down through my body until they settled somewhere, usually in my feet or calves. From there, they would create abscesses, which would grow to massive sizes, then rupture and cause extreme pain. They would take a long time to heal and were incredibly debilitating. I began to do some reading on my own about treatment for Crohn's-related abscess formation, and discovered that a high percentage of people who were experiencing symptoms similar to mine had huge success in eliminating these issues with gut surgery: either with resection of bowel after eliminating the diseased bowel, or by having the entire colon removed and going to an ileostomy bag. My doctor was on board to do it, as was my father, but my mother was a former O.R. nurse and was vehemently against cutting on my bowel. So, back to the status quo I went.

2005 rolls around. It's the beginning of my Senior year of high school. Our class was fortunate enough to be able to take a cruise to Key West and Cozumel via Miami. It should've been the trip of a lifetime... instead, I was stuck in my bunk most of the trip, in tremendous pain and unable to physically withstand the high tropical temperatures. Immediately after disembarking, our class went to Waveland, MS, to meet the rest of our school's student body and assist in relief efforts after Hurricane Katrina. I was there for a day and a half before I finally went to my school's principal and told him that I needed medical attention. I do not believe that it was by accident that the emergency medical tent set up in Waveland, MS was a Carolinas Medical Center facility. They knew me without knowing me... they had remote access to all of my records and even knew my doctors. It was the closest thing to being home that one could ever hope for. God was definitely looking out for me. I was med evac'd to a hospital in Gulfport, MS, and was admitted there for a week. They wouldn't allow me to leave for NC until I was stabilized medically. Mom came down from NC to bring me back and I was admitted straight to CMC Main in Charlotte. My condition was so grave, however, that I was only there for a few days before Dr. Sigmon admitted that he didn't have anything else he could do for me. He essentially told us that our last hope was to go to UNC Chapel Hill and be admitted and seen there. I was put into the Children's Hospital there and spent about eight weeks.
I remember it like it was yesterday. My colorectal surgeon there, Dr. Mark Koruda, came into my room, shut the door, and leaned up against the wall. He started, "We have two options. We either wean you off your pain meds (unthinkable at this point) and send you home, or we go in and do surgery. Try to cut out the diseased bowel and resect it if we can."
I didn't even hesitate. "Cut it out."

October 27, 2005 is my re-birthday. Dr. Koruda went into my abdominal cavity to lift out my colon and put it in the bowl of saline, and the entire length of it fell apart in his hands. He said it was like trying to sew up wet tissue paper. I woke up in recovery with an ileostomy bag and immediately burst into tears. I spiraled into a deep depression. A few days later, I remember breaking down alone with one of my nurses and asking her, "Who will ever want me with this bag on my side?" She dropped to her knees beside my bed, looked me straight in the eye, and, crying with me, she said, "The right man won't even see it. He'll look and see YOU, and if he cares, then he isn't worth your time anyway." I grasped onto her words and held on for dear life.

Recovery from the complete colectomy and adjustment to the ileostomy took a couple of months. I went through a few different appliances and learning curves to figure out what worked for me personally. But once I DID recover, I didn't have to take any maintenance medications at all. I gained weight, filled out, and was able to live my life unencumbered for about eight years. The ileostomy gave me my life back. If my colon had deconstructed inside me, it would've only taken about half an hour for me to go septic and die. Good thing I didn't go home, right?

A year after my colectomy, I heard about a surgery being done in St. Petersburg, FL, called a Barnett Continent Intestinal Reservoir(BCIR). It would eliminate my external bag, replacing it with an internal pouch made of my own intestinal tissue, and I would eliminate waste with a tube called a catheter into the toilet at times of my own choosing. I was SO excited. I had all of my medical records and tissue samples/slides from UNC-CH sent to the hospital in FL, crossed my fingers and prayed. I was turned down. The call telling me that I wasn't a candidate at that time about took the wind out of me. I remember that I was so depressed. But, they did tell me to resubmit my case in five years, to make sure that my disease didn't crop back up, and they would reconsider at that time. Five years came and went, and I made the conscious decision to not call them back. I was happy where I was at that point, and didn't feel that putting myself through another surgery was necessary.

Then, in 2013, a thought crossed my mind and I decided to call FL again and see what the doctor would say. I resent my records to the office, and actually made a trip to Greensboro with my mother to meet with the surgeon in person. They were doing an informational seminar there to raise BCIR awareness as a viable option to the traditional ileostomy. After the seminar, I waited to speak with Dr. Ernest Rehnke face to face. I sat down with him and made my case. He agreed to take me on as a patient, and I don't think my feet touched the ground until December '13, when I scheduled and had the BCIR surgery to get rid of my ileostomy bag.

I was excited... my body was NOT, and let me know that under no uncertain terms that it was unhappy with me. A week and a half after coming home post-surgery, I was on a flight back to FL. The pouch was leaking uncontrollably. We discovered that I had developed a fistula just beside the valve into the pouch, that emptied into the neck of the valve, and there was no way to stop the flow of fecal matter. As soon as we could sew up one fistula, another would crop up somewhere else. This eventually turned into 7 surgeries in 15 months. I had the pouch completely removed and replaced in May of 2014, so five of the seven surgeries were all fistula repairs. I fought so hard to keep it that going back to the ileostomy bag was unthinkable. I dropped from a trim 110lbs to 76lbs. I was skeletal. Still, I hung on for dear life to this pouch. My last surgery was in February of this year, 2015. I finally made it far enough past surgery that I could start on Humira injections. Besides surgery, Humira is the only medication known to heal fistulas. I had two active fistulas when I started the injections in early May, and I am pleased to report that both have closed up and healed over and are no longer active.

I have good days and bad. Some days I can forget the insults my body has taken and I feel great. Other days, I'm doing good to get out of bed and make it to the bathroom. The pain is constant. It's usually like an annoying buzz in the back of my head, but sometimes I can't do anything except curl up into a ball and moan in agony. I am finally back to work, and I am extremely fortunate to have a job that has stood behind me and held my job for me even though I was gone far beyond the original 12 weeks of FMLA that I initially went out on. I am blessed to have people standing behind me, both friends and family, that hold me up when I can't stand on my own. That raise my spirits when I can barely find a ghost of a smile to paste on my face.

I have started this blog to chronicle my (mis)adventures with Crohn's and the BCIR. I plan to lay out my feelings and points of view on a raw basis here. I will answer any question posed to me straight-forwardly and honestly, to the best of my ability. Something you'll come to learn about me: I don't sugar coat anything. What you see/read is what you get. I'll give you the good, bad, and the ugly. I don't know with what regularity I'll be making posts, but I will always answer questions that anyone leaves me on any of my posts. I know that when I was younger, I sure wished that I'd had someone my own age (or close to it) to step up and say, "hey, I understand what you're going through. It sucks to be sure, but you CAN get through it, and I'll try to help as much as I can."

I'm more than happy to be this person for you, if you need it (: