I was stoked about the second surgery. Even a little giddy. My health and energy nearly restored, I just wanted my body back functioning the way it used to. After this surgery, I'd be more than halfway there.
The second surgery typically is the roughest on your body. The surgeon has to scrape off any scar tissue that formed after the first surgery, then manipulate the small intestine into the J-shape and attach it to the exit chute. It's a long surgery, 3-5 hours depending upon how much scar tissue you have. The surgeon assured me my surgery wouldn't take so long because, "you are young and skinny, It won't be so bad." It took seven hours. I gave him shit about that one, believe me.
Waking up after surgery was painful, but not bad enough to scream profanities in the recovery room. Maybe because I was more prepared and calmer going into this one, I managed the pain more effectively. Or, maybe the anesthesiologist knew I was the crazy screaming lady and gave me a stronger hit of narcotics as I came to. Who knows. During the days after the surgery, I did notice that the pain was more intense. Laughing was not so funny anymore, and sneezing was just a bitch, but that is what Percocet is for. That stuff is awesome. It's a good thing my Rx was NOT refillable.
It has been about 3 weeks since surgery. Recovery has been uneventful and pretty boring, actually. Walking, resting, reading, eating, repeat. Yawn. I will take boredom over sick and fatigued, though. When I wake up every morning I thank God for the energy and vigor I have regained. Katie observed, "you are much more spunky after this surgery than the last one, Mommy." I am almost back.
I have a follow up appointment in early October to make sure the j-pouch works, then will schedule the 3rd surgery. Typically you have to heal for 3 months following the 2nd surgery, so I'm hoping mid-Novemberish for #3.
Til then, my goal is to lay low and heal.
Friday, September 7, 2012
Wednesday, September 5, 2012
Summer Blessings
Just re-read all the previous posts. Wow. Things were pretty grim through May, huh? The good news was, after the turbo antibiotics annihilated that last episode of C. Diff, my health started to improve dramatically. I actually felt NORMAL for the first time in six months. My energy returned and I was gaining weight (I weighed in at 105 following one of my hospital discharges. I am 5'7". 105 is not a pretty sight on my frame. I remember just staring at myself in the mirror thinking, "Karen Carpenter is in my room. For the love of God, will somebody PLEASE feed her?!?!?!). I was finally off all the crazy painkillers and other drugs I kept bringing home with each doctors' appointment. Woo-hoo! I even started running again. Not very far or very fast, but enough to experience that wonderful endorphin rush I had been missing for months.
Summer was AWEsome. It was the first summer that I hadn't worked in a while, so hanging out with Katie and Jake, their friends, and the moms was a real treat. I took my time soaking in the long, lazy summer days. The crew and I spent time sailing with my dad, visiting with friends and family, and vacationing in the Outer Banks, NC. Life was good, and kept getting better.
With renewed health, energy, and that annoying drug-induced fog lifted, I could reflect upon all the blessings in my life, most importantly, my amazing husband. My illness literally came out of nowhere. I had no time to prepare family meals, organize kids' school & sports/extracurricular logistics, or take care of household management issues. I was too sick to comfort my own children when I was home in between hospital visits. In the midst of all of that, Jeff shone like the rock star that he is. He has this amazing ability to remain unruffled, even-keeled, and positive at all times. His even demeanor and level headedness kept the kids calm, the house from imploding, and everybody got to where they needed to be on time. There were no balls dropped on Jeff 's watch. Jeff was my voice at the hospital and to the doctors & medical staff when I was in too much pain or drugged up to articulate effectively. He was my brain when I couldn't think through a medical decision. He patiently repeated doctors' explanations of my condition, procedures, and treatment approaches multiple times to me when the meds mangled my short term memory. He was right there beside me for every moan and groan I uttered. He bitched loud and long to the nurses when a private room was not available, refusing to relent until they found one for me. That man is my rock.
Katie & Jake are simply amazing. They have been so strong and brave through everything. We spent alot of time talking about their fears and worries about what was going on with my body. But they are smart and resilient. They absorbed the medical explanations of UC and the surgical plan like a sponge, and seemed comforted by the information, knowing an end was in sight. Not once did they complain about how my illness interfered with their lives. They were happy when I was up and about, and let me rest when exhaustion and fatigue overcame me. I am so proud of them.
The grandparents have been great. We are lucky to have both sets living within an hour and a quarter of us. During my hospital stays, they took turns staying at the house helping out with the kids and household concerns. Their presence was comforting to the kids and helpful to Jeff. After each hospital discharge, my mom stayed with me. "I'll be your arms and legs," she declared, assuming all cooking, laundry, pet feeding, and housekeeping duties. Needless to say, things were much more organized and tidy when she was here!
My friends have been wonderful. Each time I was hospitalized, the Cleveland ladies organized meal delivery schedules and carpools, brought me thoughtfully selected books and trashy magazines to pass the time and shared precious words of encouragement and love. My dear friend Susan came up from Columbus to fill my house with joy and laughter, giving my kids respite from their mom's gloomy presence. While she was here, she cooked dinner and grocery shopped. A birdfeeder she gave me sits right outside my bedroom window so I can enjoy my backyard's aviary action from my bed.
I am so grateful to have such a great family and all of these wonderful ladies in my life. There is nothing more important in life than who you love
Summer was AWEsome. It was the first summer that I hadn't worked in a while, so hanging out with Katie and Jake, their friends, and the moms was a real treat. I took my time soaking in the long, lazy summer days. The crew and I spent time sailing with my dad, visiting with friends and family, and vacationing in the Outer Banks, NC. Life was good, and kept getting better.
With renewed health, energy, and that annoying drug-induced fog lifted, I could reflect upon all the blessings in my life, most importantly, my amazing husband. My illness literally came out of nowhere. I had no time to prepare family meals, organize kids' school & sports/extracurricular logistics, or take care of household management issues. I was too sick to comfort my own children when I was home in between hospital visits. In the midst of all of that, Jeff shone like the rock star that he is. He has this amazing ability to remain unruffled, even-keeled, and positive at all times. His even demeanor and level headedness kept the kids calm, the house from imploding, and everybody got to where they needed to be on time. There were no balls dropped on Jeff 's watch. Jeff was my voice at the hospital and to the doctors & medical staff when I was in too much pain or drugged up to articulate effectively. He was my brain when I couldn't think through a medical decision. He patiently repeated doctors' explanations of my condition, procedures, and treatment approaches multiple times to me when the meds mangled my short term memory. He was right there beside me for every moan and groan I uttered. He bitched loud and long to the nurses when a private room was not available, refusing to relent until they found one for me. That man is my rock.
Katie & Jake are simply amazing. They have been so strong and brave through everything. We spent alot of time talking about their fears and worries about what was going on with my body. But they are smart and resilient. They absorbed the medical explanations of UC and the surgical plan like a sponge, and seemed comforted by the information, knowing an end was in sight. Not once did they complain about how my illness interfered with their lives. They were happy when I was up and about, and let me rest when exhaustion and fatigue overcame me. I am so proud of them.
The grandparents have been great. We are lucky to have both sets living within an hour and a quarter of us. During my hospital stays, they took turns staying at the house helping out with the kids and household concerns. Their presence was comforting to the kids and helpful to Jeff. After each hospital discharge, my mom stayed with me. "I'll be your arms and legs," she declared, assuming all cooking, laundry, pet feeding, and housekeeping duties. Needless to say, things were much more organized and tidy when she was here!
My friends have been wonderful. Each time I was hospitalized, the Cleveland ladies organized meal delivery schedules and carpools, brought me thoughtfully selected books and trashy magazines to pass the time and shared precious words of encouragement and love. My dear friend Susan came up from Columbus to fill my house with joy and laughter, giving my kids respite from their mom's gloomy presence. While she was here, she cooked dinner and grocery shopped. A birdfeeder she gave me sits right outside my bedroom window so I can enjoy my backyard's aviary action from my bed.
I am so grateful to have such a great family and all of these wonderful ladies in my life. There is nothing more important in life than who you love
Hospitalization #3
On May 19th, my family and I looked forward to a fun-filled day. Both sets of grandparents came up to watch Jake's baseball game. Afterwards, we would have a little party celebrating Katie's birthday. She turned 9 on the 18th. At the early afternoon baseball game, however, I noticed some vague cramping in my abdomen. It continued to worsen, and by the time we set out cake and presents later that afternoon, I was in bed writhing with pain while everyone sang Happy Birthday to Katie. By 8pm, Jeff drove me to Hillcrest once again. I had a partial small bowel obstruction. Given my history, Hillcrest transferred me to the Clinic's main campus for treatment. By the time the ambulance came to transport me, I could not stand upright and could not stop vomiting. They shoved a tube up my nose and down my throat to suck out the remaining contents of my stomach and intestines. The ambulance drivers gave me a barf bag and off we went. Good times.
At main campus, my treatment would be bowel rest, meaning I could have nothing to eat or drink for the next few days while the nasal-to-belly tube sucked everything out of my body. The good news was that I had a morphine drip for pain so resided in La-la land for much of my stay. Because I was feverish and my white blood cell count was pretty high, someone took a stool sample that tested positive for C. Diff. Really?? Again?? C. Diff. surfaced only in the colon, I had thought. Apparently I was among the unlucky minority to contract the bacterium in my small bowel. Hooray for me. (more info about C. Diff in the small intestines: http://www.gutpathogens.com/content/1/1/7 )
One of the colorectal docs finally explained what was going on. The C. Diff. caused the small intestines to become inflamed. The inflammation was severe enough to create a blockage, so nothing could move through. After a few days of IV Flagyl and oral Vancomyacin, the C. Diff went away and the blockage resolved. Whew! Got out of there after only 5 days. From a hospital stay perspective, I was improving, right?
At main campus, my treatment would be bowel rest, meaning I could have nothing to eat or drink for the next few days while the nasal-to-belly tube sucked everything out of my body. The good news was that I had a morphine drip for pain so resided in La-la land for much of my stay. Because I was feverish and my white blood cell count was pretty high, someone took a stool sample that tested positive for C. Diff. Really?? Again?? C. Diff. surfaced only in the colon, I had thought. Apparently I was among the unlucky minority to contract the bacterium in my small bowel. Hooray for me. (more info about C. Diff in the small intestines: http://www.gutpathogens.com/content/1/1/7 )
One of the colorectal docs finally explained what was going on. The C. Diff. caused the small intestines to become inflamed. The inflammation was severe enough to create a blockage, so nothing could move through. After a few days of IV Flagyl and oral Vancomyacin, the C. Diff went away and the blockage resolved. Whew! Got out of there after only 5 days. From a hospital stay perspective, I was improving, right?
Surgery #1. The aftermath.
I do not remember alot about surgery day. I remember intense anxiety, shaking uncontrollably while being wheeled to the operating room. My heart rate was easily over 100 bpm. Someone gave me a sedative to help me calm the hell down. Not sure it worked. I remember my surgeon telling me everything would be ok. I think I believed him. Then what seemed like 2 seconds later, I woke up in recovery feeling like someone was stabbing me in the gut. It was the worst pain I ever felt, worse than childbirth. I was screaming and sobbing hysterically. Jeff (my hero) was there, yelling at people to get me more pain meds. A nurse came over and asked me to rate my pain from 0 to 10. "Eleven!!! Turn on the morphine drip for fuck's sake!" is how I think I replied. Turned out, they had me on a max dose of Fenalyn, which was promptly doubled following my outburst. Pain management is a priority at the Clinic.
Fortunately, the pain subsided to a manageable level so I was finally wheeled up to my room for the next several days. I remember looking at my new stoma. I expected to be completely freaked out over having to poop in a bag for the next several months, but I wasn't. The stoma was not as gross as I had imagined, and the bag was not that unwieldy. The best strategy, I decided, was to become a stoma care taking champ. My stoma nurse said I was the smartest stoma patient in the hospital because I demonstrated competence in changing the appliance after just one lesson. Actually, I think it had more to do with attitude than intelligence. Alot of patients apparently are unsettled by the whole stoma situation, so avoid dealing with it. As a result, they have more problems taking care of it. To anyone who has to face this, my advice is to embrace it. Learn everything you can about how your stoma works and how to care for it. Your life will be much, much easier:
http://www.ostomy.org/ostomy_info/
http://my.clevelandclinic.org/Documents/Digestive_Disease/HavingIleostomy.pdf
In the hospital the doctors and nurses wanted to get me on my feet as soon as possible and walk. It was excruciating at first, but I did feel much better after each walk, so set goals to increase my distance each time. Eating solid food without incident and stoma care competence summed up the discharge criteria this time around. Fortunately, I had no problems with either, so went home within the week. Returning home (Feb 20-something) was amazing! I was exhausted, but elated not to be so sick anymore! Recovery from the end of February to May was up and down. I had good days and bad days. Mostly, I was exhausted and napped alot. I was determined to heal, however, so walked everyday.
In May, I started to feel sick again and was experiencing several episodes per day of cramping with bloody discharge coming out of my bum. The surgeon's office referred me to a gastroenterologist, who diagnosed me with 'diversion proctitis.' This basically means that the ulcerative colitis was flaring up in the rectal stump (proctitis is ulcerative colitis occuring in the rectum only) My surgeon left behind as a placeholder until the second surgery would replace it with the J-Pouch. He prescribed some steroid foam, which helped to calm it down somewhat. However, on May 19th, I experienced excruciating stomach pains and was yet again rushed to the hospital.
Fortunately, the pain subsided to a manageable level so I was finally wheeled up to my room for the next several days. I remember looking at my new stoma. I expected to be completely freaked out over having to poop in a bag for the next several months, but I wasn't. The stoma was not as gross as I had imagined, and the bag was not that unwieldy. The best strategy, I decided, was to become a stoma care taking champ. My stoma nurse said I was the smartest stoma patient in the hospital because I demonstrated competence in changing the appliance after just one lesson. Actually, I think it had more to do with attitude than intelligence. Alot of patients apparently are unsettled by the whole stoma situation, so avoid dealing with it. As a result, they have more problems taking care of it. To anyone who has to face this, my advice is to embrace it. Learn everything you can about how your stoma works and how to care for it. Your life will be much, much easier:
http://www.ostomy.org/ostomy_info/
http://my.clevelandclinic.org/Documents/Digestive_Disease/HavingIleostomy.pdf
In the hospital the doctors and nurses wanted to get me on my feet as soon as possible and walk. It was excruciating at first, but I did feel much better after each walk, so set goals to increase my distance each time. Eating solid food without incident and stoma care competence summed up the discharge criteria this time around. Fortunately, I had no problems with either, so went home within the week. Returning home (Feb 20-something) was amazing! I was exhausted, but elated not to be so sick anymore! Recovery from the end of February to May was up and down. I had good days and bad days. Mostly, I was exhausted and napped alot. I was determined to heal, however, so walked everyday.
In May, I started to feel sick again and was experiencing several episodes per day of cramping with bloody discharge coming out of my bum. The surgeon's office referred me to a gastroenterologist, who diagnosed me with 'diversion proctitis.' This basically means that the ulcerative colitis was flaring up in the rectal stump (proctitis is ulcerative colitis occuring in the rectum only) My surgeon left behind as a placeholder until the second surgery would replace it with the J-Pouch. He prescribed some steroid foam, which helped to calm it down somewhat. However, on May 19th, I experienced excruciating stomach pains and was yet again rushed to the hospital.
Surgery
"GET THAT BITCH OUT!!!" I think was one of the first things I said upon meeting my surgeon, terrified that my colon would blow any second. The recommended surgical remedy for UC is J-Pouch surgery. The surgeon removes the colon and rectum, creates the J-Pouch, a substitute reservoir for waste products, with the end of the small intestine. It is kind of folded up and sewed together, resembling a J shape. The pouch is then connected to the anus. The procedure is usually done in 2 surgeries. In the first, the surgeon removes the colon and rectum, creates the J-Pouch and a temporary loop ileostomy, which is part of the small intestine that is diverted to the outside of the abdominal wall. A cherry-tomato-sized piece of the intestine, called a stoma, releases waste into an external bag connected to the abdomen. This allows the pouch to heal properly. The second surgery occurs about 3 months after the first and is called a 'reversal' or 'takedown.' The surgeon sews up the diverted small intestine and closes up the stoma. Voila! Waste again exits the body the way nature intended.
More info about surgery mechanics:
http://www.clevelandclinic.org/lp/j-pouch/index.html
http://www.j-pouch.org/illustratedpouch/index.html
http://www.j-pouch.org/Illust.html
Because I was so sick, my procedure would take 3 surgeries: the first to remove the colon, the second six months later to remove the rectum and create the J-pouch, and the third three months following the second to do the takedown.
More info about surgery mechanics:
http://www.clevelandclinic.org/lp/j-pouch/index.html
http://www.j-pouch.org/illustratedpouch/index.html
http://www.j-pouch.org/Illust.html
Because I was so sick, my procedure would take 3 surgeries: the first to remove the colon, the second six months later to remove the rectum and create the J-pouch, and the third three months following the second to do the takedown.
Movin' on up to Cleveland Clinic, Main Campus
The next part of this journey is a blur because I was just getting sicker and sicker. After my transfer, I was tapered down to a lower dose of prednisone (an oral steroid). My symptoms subsided enough to be discharged following a two-week hospitalization. Jeff secured a followup appointment with Dr. Lashner, a GI who was doing research with various IBD drug therapies. He put me on a strong drug cocktail including Asacol, steroids, a mesalamine suppository, and an aggressive Remecaid infusion schedule.
Briefly, med management for UC starts with anti-inflammatories. If those don't work, you get moved up to corticosteroids, which usually work to induce a remission, after which one is weaned down to a much lower dose and maintained with the anti-inflammatories. If the steroids don't provide relief, there are a variety of immuno-suppressors, then the biologics (Remecaid and Humira). If none of those work, surgery is the last resort. Here is a link to a more detailed description of UC therapies: http://www.mayoclinic.com/health/ulcerative-colitis/DS00598/DSECTION=treatments-and-drugs
Dr. Lashner advised that I stay on this cocktail for at least 6 weeks to evaluate the drugs' effectiveness, then plan next steps from there. I was elated. Finally! A cohesive plan that seemed to promise an alternative to disembowelment!
Over the next few weeks, I religiously followed the drug schedule and had two more Remecaid infusions. However, my diarrhea episodes increased significantly in frequency and severity. After 4 weeks of Dr. Lashner's happy hours, I was back up to 15-20 bloody bathroom episodes/day and feeling more fatigued and nauseous. Dr. Lashner's fellow ordered a blood test that revealed I had Colostrium Difficile, or C. Diff, a bacterium that infects the colon, creating symptoms similar to Ulcerative Colitis. You get it after being in the hospital or from taking antibiotics for an extended period of time. It is horrible. Here's more info:
http://www.mayoclinic.com/health/c-difficile/DS00736
Again, I was hopeful. Maybe the C. Diff was at the root of my UC, and new drugs would take care of everything!
Uh, not so much. After 5 days on Vacomyacin, a strong antibiotic, I was back up to 20-25 episodes, dizzy, weak, nauseous, cramping, fatigue, you name it. Jeff had to practically carry me back into the Clinic's admitting area. Round two......
Briefly, med management for UC starts with anti-inflammatories. If those don't work, you get moved up to corticosteroids, which usually work to induce a remission, after which one is weaned down to a much lower dose and maintained with the anti-inflammatories. If the steroids don't provide relief, there are a variety of immuno-suppressors, then the biologics (Remecaid and Humira). If none of those work, surgery is the last resort. Here is a link to a more detailed description of UC therapies: http://www.mayoclinic.com/health/ulcerative-colitis/DS00598/DSECTION=treatments-and-drugs
Dr. Lashner advised that I stay on this cocktail for at least 6 weeks to evaluate the drugs' effectiveness, then plan next steps from there. I was elated. Finally! A cohesive plan that seemed to promise an alternative to disembowelment!
Over the next few weeks, I religiously followed the drug schedule and had two more Remecaid infusions. However, my diarrhea episodes increased significantly in frequency and severity. After 4 weeks of Dr. Lashner's happy hours, I was back up to 15-20 bloody bathroom episodes/day and feeling more fatigued and nauseous. Dr. Lashner's fellow ordered a blood test that revealed I had Colostrium Difficile, or C. Diff, a bacterium that infects the colon, creating symptoms similar to Ulcerative Colitis. You get it after being in the hospital or from taking antibiotics for an extended period of time. It is horrible. Here's more info:
http://www.mayoclinic.com/health/c-difficile/DS00736
Again, I was hopeful. Maybe the C. Diff was at the root of my UC, and new drugs would take care of everything!
Uh, not so much. After 5 days on Vacomyacin, a strong antibiotic, I was back up to 20-25 episodes, dizzy, weak, nauseous, cramping, fatigue, you name it. Jeff had to practically carry me back into the Clinic's admitting area. Round two......
All aboard the UC freight train. Destination, emergency room.
Happy 2012. I expected to heal quickly. After all, in 2011 I ran 2 marathons and was in the best physical shape I'd ever been. I was indestructible! Invincible! Unstoppable! Deluded, actually. My entire life's health mantra up to that point had been 'you are your habits.' If you take good care of your body by exercising regularly and feeding it properly, you will not have health problems, right?? Boy, was I in for a rude awakening.
The Asacol Dr. G. prescribed on that fateful December day did not work. At all. By January 7, I was up to 25-30 bloody toilet episodes a day and could barely stand up. Needless to say, my husband rushed me to Hillcrest Hospital that morning. In my delusional state, I STILL felt like it was a big waste of time, and all I needed was an appointment with a Gastroenterologist to put me on something a little stronger. Drugs remedy all ails, right? Ha. Wake up Butt Princess!
After what seemed like hours in the ER, I was admitted and hooked up to IV steroids and fluids. The GI who was assigned to me, Dr. W., confidently assured me that the meds would stop the bloody diarrhea "like a faucet" to jump start me into remission, at which point I would commence a lifelong journey with med management. Dr. G. also came to visit, claiming that I had a 'garden variety' case of UC, suggesting that surgery would probably not be needed. Not ideal, but I could deal with popping a few pills a day to keep my colon calmed down. I was confident that I would be out of the hospital in 3 days, tops.
After a week at Hillcrest, the diarrhea episodes had subsided considerably, to 5 or 6 a day, but that was not even close to Dr. W's criteria for discharge. Instead, he recommended Remecaid, a strong biologic drug that was administered by IV. If it proved effective, I would undergo 2-3 hour infusions every couple of months for the rest of my life. Dr. W was not confident that it would help (30-40% of his patients experienced success with Remecaid), and strongly suggested surgery. I was NOT ready to part with my colon, so enthusiastically consented to the Remecaid, sure that it was the golden ticket back to health.
Another week went by, and my improvement was pretty minimal. Dr. W. again recommended surgery, but I was not certain that all medical options had been exhausted. Fortunately, my husband, Jeff, does alot of work for the Clinic, and his friends there recommended I go downtown to consult with the docs at their Digestive Diseases Institute. Holding onto my colon for dear life, I requested a transfer downtown for a second opinion. I was afraid Dr. W. would be offended, but instead he said it was the smartest thing to do. He assured me that the Clinic's gut docs are the best in the country, if not the world. A transfer downtown would mean I would have access to cutting edge research in medicating this horrible disease. It finally dawned on me that this awful illness was not going away. I was terrified.
The Asacol Dr. G. prescribed on that fateful December day did not work. At all. By January 7, I was up to 25-30 bloody toilet episodes a day and could barely stand up. Needless to say, my husband rushed me to Hillcrest Hospital that morning. In my delusional state, I STILL felt like it was a big waste of time, and all I needed was an appointment with a Gastroenterologist to put me on something a little stronger. Drugs remedy all ails, right? Ha. Wake up Butt Princess!
After what seemed like hours in the ER, I was admitted and hooked up to IV steroids and fluids. The GI who was assigned to me, Dr. W., confidently assured me that the meds would stop the bloody diarrhea "like a faucet" to jump start me into remission, at which point I would commence a lifelong journey with med management. Dr. G. also came to visit, claiming that I had a 'garden variety' case of UC, suggesting that surgery would probably not be needed. Not ideal, but I could deal with popping a few pills a day to keep my colon calmed down. I was confident that I would be out of the hospital in 3 days, tops.
After a week at Hillcrest, the diarrhea episodes had subsided considerably, to 5 or 6 a day, but that was not even close to Dr. W's criteria for discharge. Instead, he recommended Remecaid, a strong biologic drug that was administered by IV. If it proved effective, I would undergo 2-3 hour infusions every couple of months for the rest of my life. Dr. W was not confident that it would help (30-40% of his patients experienced success with Remecaid), and strongly suggested surgery. I was NOT ready to part with my colon, so enthusiastically consented to the Remecaid, sure that it was the golden ticket back to health.
Another week went by, and my improvement was pretty minimal. Dr. W. again recommended surgery, but I was not certain that all medical options had been exhausted. Fortunately, my husband, Jeff, does alot of work for the Clinic, and his friends there recommended I go downtown to consult with the docs at their Digestive Diseases Institute. Holding onto my colon for dear life, I requested a transfer downtown for a second opinion. I was afraid Dr. W. would be offended, but instead he said it was the smartest thing to do. He assured me that the Clinic's gut docs are the best in the country, if not the world. A transfer downtown would mean I would have access to cutting edge research in medicating this horrible disease. It finally dawned on me that this awful illness was not going away. I was terrified.
Not so pleased to meet you, Ulcerative Colitis.
So, a few people have suggested I blog about my recent adventures with a digestive disorder that came on like a freight train, refusing to relent until an emergency disembowelment ran it off its tracks. That train was Ulcerative Colitis (UC), an Inflammatory Bowel Disease (IBD). At first, I wondered who would want to read a sob story about a middle aged woman's gut problems. Boring and kind of gross, right? Well, after mulling it over for a while, I decided that I do not give a crap (scuse the pun) about who is or is not interested. Or who might be offended or grossed out. Digestive diseases are exponentially more widespread than you might think. Sixty to seventy million people have them in one form or another, 1.4 million of those suffer from an IBD. I need a place to document all that I've learned and experienced in this journey for my own amusement. And perhaps growth and healing. Who knows, maybe it will help someone else someday.
This wacky trip all started shortly after Thanksgiving 2011. My husband, kids and I spent the holiday weekend in Denver with some friends. What began as travel related irregularity turned quickly into painful bouts of bloody diarrhea several times a day. By mid-December I was up to 10-15 mad sprints to the commode, losing weight, experiencing overwhelming fatigue, cramps and nausea. I got kind of worried (actually my husband, Jeff, got worried) and called Cleveland Clinic's appointment line to find doctor who could help me. I was assigned a time slot with a colorectal surgeon, Dr. G, that very same day (What I needed at that moment was a gastroenterologist who would treat it medically first, but what did I know). I had no idea what was going on, and really didn't think it was all that serious because I had similar symptoms several years prior to this, following the birth of my now 9-year-old daughter. The GI who did the colonoscopy at the time said all he saw was bleeding hemorrhoids. He gave me some anti-diarrhea pills and it went away. I was confident that something similar was going on.
IBDs include ulcerative colitis (UC) and Chron's disease (CD). Both diseases occur when your body's immune system malfunctions, causing an overabundance of white blood cell buildup in the mucosal lining of the intestines. The white blood cells release chemicals, which in a normally functioning immune system attack infection. However with an IBD, the white blood cell secretions go haywire, attacking everything that passes through the digestive track, resulting in painful tissue damage. In Colitis, this inflammation is limited to the colon and rectum and creates continuous lacerations and ulcers in the top mucosal layer that can cover parts of or the entire length of the colon. In Crohn's, the inflammation can occur in any part of the digestive system from the mouth to the rectum, and is not continuous, meaning that there are patches of healthy tissue between the ulcerated patches. Also, CD inflammation affects deeper layers of the intestinal mucosa that can form fistulas where the lining wears through and creates a passageway to an adjacent organ. More detailed info for those who are interested:
http://my.clevelandclinic.org/documents/digestive_disease/inflammatory-bowel-disease-guide.pdf
Following a fairly uncomfortable and embarrassing rectal exam (those proctologist jokes are no exaggeration), Dr. G. suggested that it looked like I had ulcerative colitis, but couldn't be sure w/out a colonoscopy, which he scheduled for December 30. In the meantime, he prescribed some suppositories, which worked for a while, but eventually my symptoms worsened. Following the colonoscopy on December 30 2011, Dr. G. made the formal diagnosis of ulcerative colitis, more specifically pan colitis, meaning that the entire colon was affected, and prescribed an oral anti-inflammatory 5-ASA, Asacol. I expected that to be the end of it, but it was just the beginning.
This wacky trip all started shortly after Thanksgiving 2011. My husband, kids and I spent the holiday weekend in Denver with some friends. What began as travel related irregularity turned quickly into painful bouts of bloody diarrhea several times a day. By mid-December I was up to 10-15 mad sprints to the commode, losing weight, experiencing overwhelming fatigue, cramps and nausea. I got kind of worried (actually my husband, Jeff, got worried) and called Cleveland Clinic's appointment line to find doctor who could help me. I was assigned a time slot with a colorectal surgeon, Dr. G, that very same day (What I needed at that moment was a gastroenterologist who would treat it medically first, but what did I know). I had no idea what was going on, and really didn't think it was all that serious because I had similar symptoms several years prior to this, following the birth of my now 9-year-old daughter. The GI who did the colonoscopy at the time said all he saw was bleeding hemorrhoids. He gave me some anti-diarrhea pills and it went away. I was confident that something similar was going on.
IBDs include ulcerative colitis (UC) and Chron's disease (CD). Both diseases occur when your body's immune system malfunctions, causing an overabundance of white blood cell buildup in the mucosal lining of the intestines. The white blood cells release chemicals, which in a normally functioning immune system attack infection. However with an IBD, the white blood cell secretions go haywire, attacking everything that passes through the digestive track, resulting in painful tissue damage. In Colitis, this inflammation is limited to the colon and rectum and creates continuous lacerations and ulcers in the top mucosal layer that can cover parts of or the entire length of the colon. In Crohn's, the inflammation can occur in any part of the digestive system from the mouth to the rectum, and is not continuous, meaning that there are patches of healthy tissue between the ulcerated patches. Also, CD inflammation affects deeper layers of the intestinal mucosa that can form fistulas where the lining wears through and creates a passageway to an adjacent organ. More detailed info for those who are interested:
http://my.clevelandclinic.org/documents/digestive_disease/inflammatory-bowel-disease-guide.pdf
Following a fairly uncomfortable and embarrassing rectal exam (those proctologist jokes are no exaggeration), Dr. G. suggested that it looked like I had ulcerative colitis, but couldn't be sure w/out a colonoscopy, which he scheduled for December 30. In the meantime, he prescribed some suppositories, which worked for a while, but eventually my symptoms worsened. Following the colonoscopy on December 30 2011, Dr. G. made the formal diagnosis of ulcerative colitis, more specifically pan colitis, meaning that the entire colon was affected, and prescribed an oral anti-inflammatory 5-ASA, Asacol. I expected that to be the end of it, but it was just the beginning.
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