Crohn's disease still seems fairly new to me. I started experiencing symptoms about 4 and a half years ago. I remember my first really bad day of symptoms. This was in mid-December of 2012 - it was a Thursday. I was driving to a staff meeting at our main hospital campus that morning and I just did not feel good. I felt a little queasy, but I was going to try to get through the work day if able. We had a 2 hour meeting and I just progressively felt worse as time went on. I had to run to the bathroom about 40 minutes into the meeting. I remember telling my supervisor that I was going to try to make it through lunch, but to cancel my afternoon patients. I must have looked as bad as I felt, because he told me to just go home and they would take care of the other patients. I tried to stick it out through the meeting, one of my co-workers told me to go ahead and leave because my face was turning greener and greener. I left the meeting at the hospital and drove back to Alex and my apartment (we lived in an apartment after we first got married). I went home, went to the bathroom again, and just laid on the couch. We had just gotten our two kitties the week before and I remember they just laid beside me or on my stomach that whole morning and into the afternoon. I guess they knew that their new mom was not feeling good ;) I alternated between laying on the couch and going to the bathroom. I believe I had about 8 bowel movements that day, which is definitely way too many (and sorry for the TMI). Over the weekend, I still did not feel great, but it was not as bad as that first day. I was at a continuing education course that weekend, just praying that nothing embarrassing happened! I thought maybe I was not feeling so hot due to the stresses of newfound adulthood, trying to figure out how to do holidays as a busy adult (I still miss you, winter break!!!), and getting caught up in some holiday eating. I felt a little bit better over the next few weeks, but I was definitely not my normal self. About 6 weeks (February of 2013) after my first flare up of symptoms, I noticed blood in my stool. This was different and this was scary to me. I called my (then) primary care doctor's office right away ... literally right after I got out of the bathroom. They got me an appointment in a few days.
I remember that appointment. I described him my symptoms and he poked around on my abdomen. The right lower quadrant of my abdomen was so uncomfortable. He wanted to get me into a gastroenterologist and sent in a referral for a colonoscopy. He told me he wanted to make sure I was not experiencing something like "skip lesions." I will admit, I Googled skip lesions almost as soon as I left the office. When you Google skip lesions, the words that pop up along with that are ... you guessed it! ... Crohn's disease. My heart sank. Crohn's disease? That's what we were ruling out? I knew people who had Crohn's disease. And all of them had it bad. I am talking about steroids leading to puffy faces, multiple surgeries, whole colons removed. Bad, Bad. Bad. No way this was happening to me. I always prided myself on being the one in my family with the strong stomach. Plus ... I was a newlywed! What a horribly un-sexy disease diagnosis looming over me. I ended up scheduling my colonoscopy with the GI doctor my mom had seen, Dr. Callon. I got this scheduled about 3 weeks after my primary care appointment.
The day before my colonoscopy, I was put on a strict eating plan. I could eat a light lunch and have my caffeine then, also. But for dinner and beyond, it was broth and yellow Gatorade. Oh, yeah and my bowel prep. I cut that with Ginger Ale. That was a real joy. You see, the purpose of bowel prep is to clear out that intestinal tract prior to them shoving a scope up your rearend :) It made for a truly delightful evening and morning prior to this procedure. The prep was almost sickly sweet. It would not have been so bad if it weren't for the sheer volume of fluids I had to ingest. I can no longer smell Ginger Ale without wanting to gag a little. I used to like Ginger Ale. I will probably just have to use it to cut the prep for all my future colonoscopies, I don't want to ruin any other beverages. No food or drink after midnight. I always hate that rule, I always get so thirsty at night because I sleep with my mouth open!!!
My mom took me to my colonoscopy appointment that morning, she was also to be my chauffeur when I was done with the procedure. I was called back into a room with hospital beds and changed into a beautiful gown that loosely covers your back end. One of the nurses chatted with me and got a little history. They wanted to know if I had been on any recent vacations. Alex and I had gone to the Dominican Republic for our honeymoon the month before my symptoms started. I did not think that this meant anything, but apparently there are slow growing parasites that can live in your intestines and the symptoms may take awhile to manifest. That's a comforting thought, isn't it?They stuck me with an IV and I waited until Dr. Callon came in to chat with me. I was wheeled back to a small room where they would do the procedure. Dr. Callon chatted with me about my career and my time at the University of Indianapolis as he filled my IV line with anesthesia :) I faded out and the next 30 minutes of my life are totally blank. What a weird feeling. I woke up in a recovery area and my mom was next to me waiting. They make sure you can pass gas before you leave ... it's really a lovely area. I was wheeled out to my mom's SUV in a wheelchair. There was another equally confused person who challenged me to a wheelchair race, the beauties of coming out of anesthesia. I remember telling him that I did not think it was a good idea! My mom took me out to lunch, because she is a nice mommy like that. I had the rest of the day off to recover ... because you really aren't supposed to do anything after you have been knocked out and scoped.
I was told the results of my scope shortly after this visit, the results from the biopsy would come a little bit later. I had a follow up with Dr. Callon and was told that there was inflammation, erosion, and redness in my terminal ilium (end of my small intestine). There was nothing they could physically see in my large intestine upon inspection. We would find out later that, the biopsies would show that there were "areas of chronicity," or chronic inflammation, in my large intenstine, as well. A diagnosis of Crohn's disease was made, thankfully in a milder stage. I was originally put on an anti-biotic medication to see if this was some other kind of inflammation that could be helped. It did help some of my symptoms, but not completely. After this, I was put on something called Lialda. Lialda is actually used for Ulcerative Colitis (another inflammatory bowel disease isolated to the colon), but it has milder side affects and it was decided that since most of my symptoms were in the colon and very end of the small intestine, that this would be the next step. I am currently still on this medication today, and am hoping that I will not have to change medications any time soon. Other medications have greater side effects on the immune system. The next medication in line would be something called Imuran. I don't know much about it, but I do know that it makes me more susceptible to infections/getting sick and it cannot be taken during pregnancy. I am nearing that time in my life and am hoping to not have to switch from my Lialda (which has not really shown any complications with pregnancy per studies at this time). I am feeling good enough now, I don't anticipate this unless a flare should occur.
Most days, I feel pretty good. My symptoms are not perfect and there are some things that I deal with daily. I can eat most of the foods I like, just not excessive amounts of sugar, alcohol, or anything that could really stop up my system (like too much dairy!). I have sudden urges to go to the bathroom (sometimes while I am in the middle of the run), so I have to be aware of my surroundings and know where the nearest bathroom is! There are times when I get bad cramping and stomach pain that will double me over and leave me on the couch for a bit. This is the worst and can be very painful. Those days are few and for that I am grateful. Other days, I get super bloated. I have had days where I am 5 pounds heavier because of this bloating. It is pretty uncomfortable. I am still learning about how my body will react to certain things and how to respond to these not so great days. There is much I am still learning about this disease in general! There is no cure for inflammatory bowel diseases at this time, and Crohn's disease is progressive. There will be good days and bad days, and there is a chance that my personal disease will worsen. I plan to use this blog as a means to also give you all an honest account of those not so good days, just to give you all an idea of what it is like to live and run with Crohn's disease. Right now, though, I am grateful for pretty good health, strong lungs, and every good day and good run I get :)
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