Perhaps I should take this opportunity to talk about my medical history. I was diagnosed with left sided ulcerative colitis on Jan. 2, 2005, which coincidentally fell on my 18th birthday. I look at it this way…if anyone ever decides to ask me, “What is the strangest gift you’ve ever gotten?” I’ll have a brilliant answer! Back then, I never considered the severity of this disease and its sister Crohn’s. In fact, I had never even heard of Inflammatory Bowel Diseases in my life before that time. The GI I was seeing at the time said it could be easily controlled with medication, but there was no real cure. He did mention, however, that a small portion of patients with the disease end up having surgery. I didn’t consider that I myself might one day find myself among that portion. I was on Pentasa for long-term maintenance and Prednisone steroids for about two weeks. I graduated high school with a bang and went off to college at Drake University. Weaving my way through a challenging year of new friends, difficult courses, and life on my own, I was ready for more! I almost completely forgot that I was sick! Summer couldn’t end fast enough. Ready to get back to school, I couldn’t possibly fathom what was to come.
Unfortunately, my body reminded me of my illness with a ridiculously unfriendly flare-up. I was put on Colazol and Enemas (not fun!) in addition to Prednisone. I couldn’t hold the enemas at all, not to mention that it’s the most uncomfortable thing in the world sticking a small tube up your butt (which already hurts!) and squeezing cold liquid into it. When things did not improve and
with school only a week away, I was advised not to return to school until we could get things under control. The doctor gave me Entecort steroids told me to wait it out. Meanwhile, I had to let everyone at school know I was going to be a week late. My situation had become desperate…the steroids were not doing their job. I went back to my GI with a sore abdomen and low blood count.
He said I should seriously consider withdrawing from school for the semester. My parents agreed.
There would be no point; I was now two weeks behind everyone and it would certainly affect my GPA (not to toot my own horn, however, at this point I had made Dean’s List and passed all my classes with flying colors!) To put that and my health in jeopardy was simply not worth the risk. I reluctantly e-mailed the Dean of Students and put in a formal semester withdrawal. My heart completely broken, I vowed that this disease would not keep me from going back to school in January.
On September 1, 2006, I had my second colonoscopy. All it did was confirm active left-sided colitis. Whoop-dee-doo! We regrouped and I found myself taking obscene amounts of Asacol and weaning off Prednisone for three weeks. In the meantime, I kept in touch with my friends and tried to find a part-time job to keep myself busy. The meds were finally working and I didn’t have any problems. I felt so good that I went to Drake to spend Halloween with the gang. Throughout all of this they were extremely supportive. They’d keep me updated on all the latest gossip and even helped me get my books for next semester. In truth, I don’t know what I’d do without them. I consider myself one lucky duck to have friends who don’t judge me because I need to run to the bathroom fifteen times a day. Nobody ever gave me a hard time about it. I felt like I could be open about it to them. It has never been awkward. It gave me the strength to get through the “school-free” semester. I also found solace in the fact that one of my friends was diagnosed with Inflammatory Bowel Syndrome and experiences similar bouts of symptoms from time to time. She handles it very well in my opinion and our “bathroom buddies” status has made talking about the disease even easier. The time seemed to fly by and no sooner had I celebrated my 20th birthday than I was packed up and ready to boogie back to school. I didn’t think it was such a big dilemma after all. I had gone into my first year with status as a 2nd semester freshmen thanks for my AP credits from high school. Technically, my student status was in line with all of my friends. I moved into an apartment on the edge of campus on a snowy Saturday morning, ready to tackle anything that came my way.
2007 proved to be worse than the previous year. I ended up leaving Drake after three measly days. After my first day of classes, I didn’t feel so hot. My stomach ached, my head pounded. It was all too familiar. Around 1 a.m. I’d finally settled down to bed when it hit me. I was in the bathroom half the night with bloody diarrhea. I called my mom about 4:30 in the morning with tears streaming down my cheeks. I couldn’t believe this was happening again. I’d just moved all my stuff in! I spent the evening with the girls hanging out! I was beginning to feel at home once more, as if nothing had ever changed. Like the last four months were a nightmare that I’d at last woken up from. My body dictated otherwise. My roommate at the time spoke with my mother on the phone and promised to take care of me. If my situation did not improve later on in the morning, my mom insisted on making the five-hour drive to retrieve me. My roommate stayed awake with me. She put on movies and kept me hydrated with water and Gatorade, as I refused to eat any food. In the morning, she even e-mailed my professors explaining the circumstances of my illness and that I was going home for treatment. My mother made the trip in four hours flat and by the early afternoon Mom whisked me off back home. Before my departure, the rest of my crew popped in to say goodbye and wished me all the best. For the second time in a year, I was forced to say farewell to my Drake family. In that hopeless instant, I never thought I’d see them again.
I returned home more forlorn than ever. Depressed. Sicker than I was in August. My doctor was surprised to see me. He put me on a high dose of Prednisone and recommended bed rest. For the next two months I was laid up in bed. I spent my mornings eating meager amounts of food, my afternoons in an uneasy sleep, and my evenings doubled over on the toilet seat. Nothing felt worse. I could hardly get up out of bed. I don’t pretend that I’m not fair-skinned, but even I thought I was looking pale during those dark days. In March, the GI recommended I go to hospital. My hemoglobin count was 7. I had lost so much blood that even taking almost 900mg of Iron a day wasn’t going to replenish my red blood cells. March 17, 2007, I was admitted to the hospital for a blood transfusion and IV steroids. I spent a week there where I met a new GI, who gave the shocking news that a person on steroids should be taking extra calcium every day because it could cause bone loss! I was furious that my doctor failed to mention this to me, as I had spent the last three months on that garbage. My head was the size of a watermelon; my moods could be compared to those of the Incredible Hulk. The only thing the steroids hadn’t managed to influence was my weight. I normally weigh about 135 lbs. While in hospital, I had dropped to 120lbs. The new GI put me on Imuran, Asacol, and Prednisone (which I would wean off over 1 ½ months). I went home feeling weaker than ever. I discovered Imuran was an immunosuppressant, which left me susceptible to infections, liver toxicity, etc. so I’d have to have my blood checked periodically. At this point, I didn’t care. As long as these new drugs would get rid of the problem for a while.
I don’t recall much of the time immediately after getting out of the hospital, except watching as the souvenirs of my visit (bruises, needles pricks) disappear at a turtles’ pace from my arms. My health did improve. My hair was beginning to come out quite a bit though. Already thin, brown locks bulked up my brush after a few runs through my hair. I created small hair balls collected during showers. It scared the crap out of me, no mistake. I kept telling myself, “It could be worse. Don’t complain.” My moods were still unpredictable, but determined to stay positive, I made a trip to Drake in April. I cannot look at pictures of myself from that time, I’m so embarrassed. I gained so much weight from the steroids and my head was getting bigger every day. I made feeble attempts to hide its puffiness behind my thinning hair. What else could I do? I took it one day at a time, and eventually I got off the steroids. Things went back to normal. In June I secured a job at the local mall. Things were starting to look up at last. I wanted to go back to school but my family and I agreed maybe I should consider staying closer to home. After a rigorous search and application process, I was accepted for the Fall 2007 semester at DePaul University downtown!
September 6th, 2007brought me renewed hope. The Imuran was working; the GI was weaning me off the Asacol. The idea of taking only 15 pills a day instead of 20 thrilled me! School started. A daily commute via the train brought me to my destination. Being back in school was nothing short of bliss. I had forgotten how much I missed being in a classroom environment, having the chance to participate, and making new friends. The weather matched my moods. I couldn’t imagine being anywhere else as I sat on the grass outside the Student Academic Center rereading Dr. Martin Luther King’s Letter from Birmingham Jail. Of course, it didn’t last long.
Mid-quarter arrived accompanied by a flare-up. One morning before my first class, I headed into the café for a bagel and orange juice, when I felt that horrifically painful urge to go to the bathroom. I ran across the hall to the nearest ladies’ room where I stayed for nearly forty-five minutes. By the time I got the strength to leave, I knew I’d lost some blood and had to get some nutrients ASAP. I drink the entire bottle of orange juice and bought some chocolate chip cookies from a nearby vending machine. I needed sugar or I’d find myself lying on the floor of the Student Center in a cold sweat. I felt a little better but my stomach churned unpleasantly. I huddled in a corner by the window overlooking the street. I called my Mom. She knew my father would have a better chance of getting to me sooner as she was about 2 hours away at the time because of work. The only snag was the fact that my mother was in possession of the only vehicle we owned. I knew I was too weak to take the train home and I certainly couldn’t go to class. I hardly knew anyone who could help me. I didn’t want to go to nurse, who would certainly take one look at me and recommend a doctor. We enlisted the help of my boyfriend at the time. He and my father made an hour trip in about half the time. My father jumped out of the passenger seat like a superhero and helped me gingerly into the car. The only thought pressing my brain at the time resounded like a drum, “When—will—this—end?”
This time we tried a different hospital and a new GI. The soonest I could get in to see him was two weeks. So for two weeks I attempted to juggle schoolwork and illness from my bed. Of course, in college, if you’re not in class, it becomes exceedingly difficult to pass. I admit that I hadn’t really made many friends, at least not anyone who could give me notes. I ended up failing all of my classes because after mid-term, you cannot formally withdraw. I wanted to go back to school more than anything. Work was extremely forgiving and gave me plenty of time to rest. When I finally met the GI and related my story, he put me back on steroids and increased the Imuran. We tried enemas again but, as I predicted, it did nothing for me. It took a month before I was back on my feet again. November and December passed without incident. I worked quite a bit; I remained grateful for the chance to keep busy. The apprehension of my bad grades hovered over me like a spiteful wasp. I knew this was going to sting me in the future.
2008 rolled in with bitter cold. Shortly after my 21stbirthday, I endured another flare-up, and once more the Imuran was increased and rather than subject me to steroids again, he recommended suppositories. With a heavy heart, I was forced to put in a formal withdrawal from DePaul. I didn’t want to do any more damage than I had already done. I couldn’t possibly make things worse with my education. The suppositories helped and were frankly, much better than enemas. At the end of February I was offered a new job working as a salesperson at a local photography studio. I joined the Take Steps Crohn’s and Colitis Walk to raise money for research and awareness of digestive illnesses. Thanks to the help of my family, friends, and strangers all over Chicago, I managed to raise $2,000 to the cause! The walk was scheduled to take place downtown at Soldier Field on June 7th. I couldn’t wait to meet people like me and walk for the hope of a cure.
The weather got warmer. Early May brought the sun, and yet another flare-up. I was on the max dose of Imuran, but my GI said we could go over in my case. Steroids became common once more. Long story short, my gut protested to the medicine and I ended up in the hospital again May 21st. I received IV steroids, but after three days when things did not improve, I was given Remicade. I felt better the next day. My recovery was miraculous. I almost didn’t believe it myself. The doctors were pleasantly surprised and asked, “Why are you still here then?” I was released on Memorial Day, where I went home and enjoyed a barbeque with my family and boyfriend. I couldn’t eat much, but hell, anything is better than hospital food, right? I wasn’t complaining.
I was well enough to attend the Take Steps Walk, an amazing experience to say the least. Mom, my sister Kristen, and my boyfriend came along as my “Got Guts?” Team. We even made t-shirts! The threat of tornados and severe weather did not stop us from making the walk along the lake front with nearly 500 others. All together, the Chicago chapter raised $110,000! I knew there was hope as I followed the groups of friends that rallied in memory of a lost loved one. I smiled at the family who celebrated their five-year-old daughter’s resolve in spite of her Crohn’s. I experienced support and love to the umpteenth degree. The friendly grins and nods seemed to say, “We know what you’re going through…trust us, you are NOT alone.”
June 7thI was schedule for my second Remicade infusion, but due to insurance issues that took two weeks to resolve, I was placed on COBRA. I found myself no longer eligible through my mother’s insurance since I was not a student. They informed us that I could not be put on as a disabled dependent because, although my circumstances were serious, the disease did not prevent me from being self-sufficient. This is something I have not understood and strikes a deep sense of injustice in me. If I am unable to attend school, go to work to generate my own income, and must live under my parents’ roof due to UC, how does that NOT make me a disabled dependent? I sent my concerns to both the governor and my congressman. Their assistants informed me that it takes a long time for laws such as these to be changed and that they were sorry for my situation. COBRA was my only option. We got it. I got my second infusion two and half weeks late while experiencing a flare-up. It didn’t work. My GI’s nurse said that since I was late, we were going to start all over and I would come back to the infusion center in two weeks instead of four. I caught myself thinking frequently of the possibility of Remicade’s failure to put me into remission. Would surgery be the next step? I wondered.
I waited patiently, hoping with every fiber of my being that this would work. July 9thcame and went with no success whatsoever in the infusion. I cursed everyone at that point. No way could this not work. Why? Why? Why? I called my GI and we talked for about an hour regarding possible options. Clinical trials were out of the question for me; I have no interest in being a guinea pig or risking the possibility of a placebo. He asked what I thought about surgery and I said I had considered it recently. “I’d like to give you a colonoscopy to see if the Remicade is working at all, and then we can talk about the next step.”
Sure enough July 23rdgave me my answer. The left-sided colitis was now Pancolitis. My own miserable colon was rocking the road rash. In my post-scope haze, I remember shaking my head as the doc, Mom, and my boyfriend stood over me discussing clinical trials. “No,” I moaned. “She’s prepared herself for the idea of surgery. She doesn’t want to suffer anymore,” my mom said slowly. Those words plunged me into the world of surgeons and ostomy nurses soon that I thought.
This blog chronicles my journey through my ileoanal anastamosis and j-pouch life post surgery. Have a look around. I must warn you this blog is not for the squeamish. There are photographs/graphics that illustrate every step of the surgery as I experienced it. They are meant to educate and aid. I also don’t really censor myself so there will be some harsh language from time to time and I cover topics ranging from sex to depression to tracking the consistency/number of my bowel movements. Welcome to the bizarre world that is my j-pouch life!
Wishing all the best to you and your families in your own quests to better health!