The rollercoaster that is my life seems to hold never-ending surprises for me.
I came to a startling realization back in January; the fact that it didn't occur to me sooner simply baffles me, looking back on everything that I have been through over the past two years. I DON'T HAVE CROHN'S. The DNA diagnosis that I received from Prometheus Labs in CA was correct initially, handing down my disease as being Ulcerative Colitis. The entire time my body was fighting against the BCIR, I kept wondering to myself how DNA (which is considered irrefutable in court) could so black-and-white identify my disease process as one thing and then my body and doctors seemingly contradict said diagnosis with the evidence of my obvious illness following my multiple surgeries, interpreting it as Crohn's Disease.
I was at work one evening, and after once again pulling multiple whole "dissolvable" stitches from my body, I sat at my desk, staring at the stitches I had placed in a biohazard bag; willing an answer from the silent objects of my torture. The punch-line to the riddle finally flashed across my pain-logged brain like a laser... It was such a simple equation. Years ago I remember my mother stating to a doctor at some point in time that she was allergic to Vicryl, a synthetic yet supposedly absorbable material often used in surgery to sew up incisions. My entire battle the past two years had been against an ALLERGY. This was the very reason why the internal pouch I had been attempting to convert to was working as intended, but my body was violently rejecting it. It was forming fistulas in an attempt to force the stitches out of my body the very best way it knew how. I knew that was what was coming out of the fistulas because one evening a year before, I spent almost two hours performing surgery on myself with a pair of needle-nosed surgical tweezers, pulling out seemingly endless pieces of undissolved dissolvable stitches. My body was now full of this material I was severely allergic to, and therefore went into a massive rejection mode: it affected not only my healing and pain levels, but caused a tremendous depressive effect on my mental health. August 2015 was the very lowest point, resulting in my feeling unsafe to be alone for any length of time. Once I went back to my conventional ileostomy in September 2015, my mental health steadily improved from there. Yes, the pain is a near constant, but I no longer feel as though I am in a fog of worthlessness with no light anywhere in the vicinity. The only thing that saved me at that lowest point was an extremely selfless friend who dropped everything she was doing to get me out of my own head for as long as it took. Did I admit it at the time? Only to a few select people. I work in Mental Health. I know what happens when you admit that you feel as though you have the option(s) available to do the only thing you feel will bring an end to your suffering. But I trusted the people I did tell, and they did right by me by not freaking out and pulling me gently out of my biologically-induced hole.
So, with all my medical experience and self-knowledge, why didn't I realize my predicament sooner? The answer is simple: I had never considered the idea that allergies could also be hereditary, like my Ulcerative Colitis is from my father. And the reason the Humira worked to seemingly calm the "Crohn's" down was because the biologic was not only wiping out my immune system, it was also shutting down my histamine receptors, masking the allergy and making it look as though it was helping an autoimmune response. I outlined my theory to my primary care physician, who integrates traditional medicine with alternative therapies as the basis for her practice. She whole-heartedly agreed with my idea and urged me to seek out my local gastroenterologist. I made an appointment with him as soon as was possible, and handed him the same evidence (both literally and ideally) that I had given my PCP. True to mainstream medical care, he pooh-poohed my synopsis, stating that he still felt my body hadn't liked the BCIR, and wasn't that obvious with my marked improvement upon having it removed? And yes, to a certain to extent he was/is right, but for the wrong symptom/reason. The pouch was functioning as intended the entire time. It was the stitches that were being expelled from day one that were the only inflammatory constant. Gotta love a doctor who can't stand to be wrong. Unfortunately, just about anyone with an autoimmune disease has run across at least one physician who is this same way, whether the issue be UC, Crohn's, Lupus, etc.
The only thing I can hold to now is the knowledge that eventually my pain will subside in its entirety. I still have knots of stitch material under my skin layer, and these spots will rub internally, causing pain and a raw feeling at the site that I usually have to just grit my teeth and bear. When the discomfort becomes distracting, I have non-narcotic meds I can go to to alleviate my pain. I was on narcotics for over two years. It wasn't much fun coming off of them, but I feel better about myself that I'm not dependent on them to keep my pain in check like I was. Knowing there is an end in sight makes such a difference to the mental part of the ordeal.
I delayed writing about my realization because, as my boyfriend pointed out to me the same night I called him at work to tell him how excited I was about figuring my allergy out, everytime I felt as though I was making improvements, something else would happen and plant a boot in my chest and shove me back onto my butt (from a recovery stand-point). I wanted to make sure my theory was sound before I told anyone other than family, close friends, and co-workers. I finally feel as though I'm in a place where my allergy has been irrefutably self-proven.
I still stand by what I've said many times before: My body will find any way possible to hate me in one way or another!! At least the hate isn't systemic anymore... *shrug*
Tuesday, March 1, 2016
Thursday, October 22, 2015
Since We Talked Last...
Ohh, so much has happened. Let's see. I went to see my original colorectal surgeon at UNC Chapel Hill to get my fistula looked at to get fixed. One thing ab teaching hospitals... You never see the head physician first. You always see a "resident" first, who was dried off at birth yesterday and thinks he knows wtf he's talking ab today. He gave me his spiel while I looked him in the eye with my batted-eyelash "gtfo of my face" look, until he decides to go, "Well, we'll go get the big guy now!" Yes, you do that, you pompous lackey of an intern. Jeez.
Dr. Koruda comes in and takes up his standard pose of leaning against the closest wall or counter, crosses his arms, and looks at me over his glasses. I've known this man since I was 17. Even with not having seen him since 2010, he looked me up and down and said, "This doesn't look like you. You're way underweight." Points to the only medical professional in the room who knows wtf he's doing! He examines me, confirms that I do indeed have a fistula (the intern tried to say it was an abscess... Abscesses don't produce and expel gas. Air doesn't just float around in your abdomen. It has to be produced by the gut. Byproduct of food breakdown.), and agreed to fix it. I was admitted the following week to have it "fixed." When I came out of the anesthesia, all that had been done was to ram a Jackson-Pratt drain up into the fistulous tract, to suck out the drainage. Great. So, we want a tract to close... So we shove a tube up there to hold it open? This makes massive amounts of sense. Not to mention, while I was hospitalized at the good ol' UNC Memorial hospital, I gained not only a MRSA infection in the drain, but also a C.diff infection in my small bowel. Go me! Oh, and did they put me on any antibiotics for said infections? Nope. Not a one.
So, I go home with this incredibly painfully placed drain and attempt to live my life. Yeah right. It was constantly pulling the stitches perianally, and the bulb where the drainage was supposed to go was too big to be concealed by clothing. I figured out how to place it in my waistband so I could at least go out to dinner with my boyfriend, but the drainage plugs would dig into my skin, causing painful indentations.
Eventually, after the second drain replacement, it just wasn't cutting it. I was heavily expelling around the drainage tube, so it was a pretty pointless endeavor to continue. I bought a plane ticket to FL on my own, and planned to fly back to St. Petersburg to have surgery. When I called Dr. Koruda's nurse to tell her, she goes, "oh, we can do that here!" I had a lot to think ab. I decided to cancel my flight and have surgery in NC. Most was peer pressure... People didn't want me leaving the state's proximity, etc. But I also wanted to believe that Dr. Koruda would help me protect my BCIR pouch, and just be willing to fix the fistula and leave my internal pouch alone.
I had surgery on September 21st. I was alone in pre-op, wringing my hands and trying to keep myself calm. Have you ever heard someone say that they heard a still, small voice speak to them? Inaudible in a room, just a voice that speaks to your soul? It told me that all the decisions I'd made up until now had led me here... And that I wouldn't be keeping my BCIR. My eyes just filled with tears, and one tumbled down my cheek. I wouldn't say that a peace came over me, more like a calm resignation.
They took care of me during and immediately post-op. In fact, I scooted myself from the surgical stretcher to the one in my room with no help. But it was true: I came out with an ileostomy bag and a jagged vertical incision, going up and around my belly button. Previously, all of my surgeries had used my original horizontal bikini scar... This one was/is jagged, deep, and ugly. My first time hooked to a wound vac... An instrument of hell is the only way to describe it. If you can imagine it by its name, you can pretty much envision it. If you can't, Google it. It's painful, awkward, and a complete pain in the padded ass. I barely escaped having to bring the hell-tool home with me... It was actually separating the sides of the incision, so they decided to send me home on wet-to-dry dressings. Awesome! I know exactly how to do those!
Small problem. The incision that I have to dress is literally less than an inch from my new stoma. So I have the ostomy wafer that I have to trim the side of rather creatively so it doesn't cover the wound. Then I have the tegaderm wound dressing that overlaps the wafer in some areas. Awesome. And it's not ostomy leakage that's causing loss of adhesive integrity... Its the cerous(sp?) fluid from the wound soaking into the ostomy and causing it to lift off my skin and pour out. Like, really? Can we not work together here? Just ridiculous. It got better once I stopped using the cheap Hollister supplies the hospital sent me home with and I got back to using my regular supplies from Convatec. I guess my skin is used to that stuff. I still have days where I wake up covered in it... Have to strip all the stuff off, get in the shower, strip the bed, clean the stains, try to resecure the dressings, and then climb back into bed because I'm exhausted. I legit passed out in the Aldi's exit one night when we went grocery shopping. I almost passed out in the shower yesterday when I was trying to clean up. My vision got black and fuzzy and I had to sit down or I was gonna crack my head on the porcelain tub. It doesn't get much lower than that... 25lbs underweight, can't control your ostomy output, almost passing out and plopped down in the shower, with the water just pouring all over you, unable to get up. The only thing that finally drove me out of the shower was the hot water running out. Then I trimmed and slapped on my ostomy wafer, put some gauze on my wound, wrapped up in a towel and just crawled back into bed, where I still am, right now.
Crohn's is no freaking joke. It's a Damn struggle every single day to even find something worth getting out of bed and being in pain for. In my head, I know what I have to do, but my body just says, "yeah, no way." And then I hit my head on the frame holding the glass lobby up in a grocery store and wake up in some lady's arms, who is holding me in an upright sitting position, telling me I'm gonna be ok. My head is too heavy to lift, but I manage to give another woman my boyfriend Brandon's name, and she goes back into the store to get him. I get checked out by EMS and am cleared to go home, where I make a beeline from the car to my bed.
Crohn's destroys your life and it's so hard to fight back sometimes. Sorry if this entry offended anyone, with language or content. The way I see it, this is my corner of the blogosphere, and I'm going to show my life and my struggles in black and white. There's a lot of gray in my disease, but my life and personality is very straightforward. Don't like it, don't read it.
Just my Public Service Announcement for the day (:
Friday, August 14, 2015
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 (:
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 (:
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