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......
Wednesday, September 5, 2012
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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