Hi! My name is Christina. I am a 21 year old, senior in college from northeast Pennsylvania, studying to be an Early Childhood Education Teacher. I was formally diagnosed with ulcerative colitis in March of 2012. I have been struggling with the symptoms since 2005 and have not been able to get my ulcerative colitis into remission. My last colonoscopy was on August 14th and the results showed that I have severe left-sided ulcerative colitis. I am currently taking prednisone, Asacol HD (max dose of 4800 mg daily), and have tried countless medications such as Lialda, Uceris, Canasa, taken an herbal approach, and tried several other supplements such as Metamucil, Immodium, etc. Originally, the doctors thought I had a “mild” case, but after this past colonoscopy showed my colitis is now severe, the doctor wants me on Remicade infusions along with all of the other medications I am currently on.
Some more about me:
Something interesting about me is that I am a former champion Irish dancer. I used to be very active, as I danced for 13 years and even competed in Ireland. My hobbies are cooking (which is something I have become good at since being diagnosed with UC), baking, scrapbooking, watching movies, doing yoga, traveling, and spending time with my friends and family. I am from the Poconos and live with my parents, grandparents, sisters, and boyfriend of three and a half years. Fortunately, I have a very strong support system that is trying to help me get through this difficult disease.
Currently, I am struggling with bloody stools and severe urgency. The urgency is so bad, it makes it difficult for me to leave my house. I even have a bucket and change of clothing in the back of my car just in case. Unfortunately, I have had to use it many times. Right now, I am on prednisone, which has helped stop the bleeding. However, prednisone is only a temporary fix and at some point in the near future, my symptoms are going to start to return.
When I was in middle school (approximately 2005), I was sick almost every morning before school. I had trouble eating breakfast and would have diarrhea in the mornings. In fact, I had my dad drive me to school so I wasn’t stuck on the bus without a bathroom. My stomach would usually feel better as the day progressed and I really never thought much of it.
In high school, approximately 2009/2010, the bleeding started. However, I only had occasional bleeding on and off – approximately six months on, six months off. I would go for months without having any stomach problems at all! Even though I knew something seemed “off” since I had bleeding, I never said anything because I was young and scared. I graduated high school in June of 2011 at the top of my class and was having no stomach problems. I started college that fall, and was living on campus just like a normal 18 year old.
In the beginning of January 2012, the bleeding started again while on vacation. Again, I didn’t say anything to anyone, hoping it would “go away” like it had in the past. Then, the spring semester of college began, I went back to school, and the bleeding continued. Now that I was living away from home, it made it even more difficult for me and I decided to tell my mom and dad. On March 5, 2012, I went for my first consultation with a gastroenterologist. On March 15, 2012, I had my first colonoscopy, which showed patterns consistent with ulcerative colitis. The doctor started me on Asacol HD (2 pills, 2x per day) and Metamucil (2x per day). After that, my gastroenterologist left the practice so I started with a new doctor. He started me on VSL #3 (1 pill, 2x per day), changed the Asacol to 2 pills, 3x per day, ordered a Small Bowel Series test, and a Prometheus Diagnostic blood test. Fortunately, the results of the small bowel series test came back norm al, but the results from the Prometheus laboratory tests confirmed that I have IBD in a pattern consistent with Ulcerative Colitis. In August of 2012, I went for my first flexible sigmoidoscopy, which proved once again that I have moderately active ulcerative colitis, and was put on Canasa suppositories. I was sent to see a nutritionist, who put me on a special diet that was supposed to be for people with IBD. She recommended that I restrict insoluble fiber and increase soluble fiber, restrict foods high in fat, and lessen my intake of dairy. On October 3, 2012, I had my first “accident”. It was extremely embarrassing and I didn’t know what to do! I went back to the doctor, who added Iron 325 (65 Fe) Mg (1 tablet daily), Bentyl 10 Mg (1 capsule, 2x daily), Oscal with Vitamin D 500 Mg (1 pill, 2x daily), and Vitamin C 1000 Mg (1 pill, 2x daily). At this point, I was having trouble with incontinence, still bleeding, and going to the bathroom 5-7 times pe r day. After being diagnosed, I was forced to transfer to a local college and become a commuter, as the college I was attending could not provide me with a special diet, and living in a dorm was not practical due to the amount of time I needed to spend in the bathroom. I felt like my whole life was being controlled by this horrible disease!
After being on Asacol HD for over a year (along with a variety of other medications), I decided to take my health into my own hands. In May of 2013, I weaned off of Asacol (I took 1 pill less per week), weaned off Bentyl, and started eating Gluten free. I saw no drastic changes in my symptoms until June 16, 2013, when I started having diarrhea again. I suffered from a horrible flare up for over one week and couldn’t hold down any food at all. At the end of the month, I was put in contact with a Chinese herbalist and acupuncturist. On July 3, 2013, I started taking Chinese herbs and continued eating Gluten free. I began feeling so much better. The bleeding had stopped, but the urgency was still there. For the remainder of 2013, I continued taking various Chinese herbs, felt good on and off, was still having very urgent bowel movements, and had several “accidents.” The fear of having “accidents” gave me lots of anxiety about ulcerative colit is.
In 2014, I was still taking Chinese herbs and no “traditional” UC medications. I tried acupuncture treatments and yoga, but saw no results. I also started taking Slippery Elm bark and Green Superfood to supplement my herbs. I suffered through another semester of college, still having very urgent bowel movements and going to the bathroom 4-5 times before leaving for school. On my 30 minute trip to school, I have even stopped 2-3 times to use a public restroom. Traveling is seriously difficult due to the urgency!
In May of 2014, I started the SCD (Simple Carbohydrate Diet) and saw much relief after reading Adam’s book. The bleeding seemed to subside, but the urgency still wouldn’t go away. However, after going for almost a year without being treated by a gastroenterologist, my mom recommended that we see a doctor again.
The third gastroenterologist dismissed my case as “mild” without doing any testing besides a routine blood test. My CRP and SED rates were extremely elevated, and I was iron deficient and had many other levels that were off the charts. He started me on Lialda and Uceris, neither of which gave me any relief. We decided to go to a fourth doctor, who sent me for a colonoscopy immediately. The results of my second colonoscopy showed that I now have severe left-sided ulcerative colitis. I was put back on Asacol HD and was started on 40 mg of prednisone. Now, the doctor has tapered my dose of prednisone to 30 mg daily and wants to start me on Remicade infusions within the next week.
I am a senior in college who just wants to live a normal life and fulfill my dream of becoming a teacher. These immune suppressing medications scare me, as my job deals with children, who get sick frequently. My college professors are unaware of what ulcerative colitis is, and do not take my condition seriously because I appear to “look fine” on the outside except for the fact that I am pale and thin. If you knew me three years ago, you would not think that I look fine at all. In order to open my professors’ eyes to this horrible disease, I shared a link to a PDF from the Crohns and Colitis Foundation website. It is really sad that there are so many people struggling with this disease and that there is no “cure” besides surgery (which I’m not sure is really a logical option). Ulcerative Colitis has affected my daily life and I just wish it would go away for good!
My family and boyfriend are extremely supportive and are doing whatever they can to help me, however, I am worried about my future. Will I be able to become a teacher? Will my disease ever go into “remission?” Is Remicade really the best option? What if Remicade doesn’t work? Will I be able to safely have children some day? What are the long term effects of all of these drugs? I feel like the doctors have bullied me into taking these horrible drugs, and am not sure where to turn next. Even though my colon causes me all sorts of trouble, I like it enough to want to keep it in my body!
If anyone would give me any advice, I would greatly appreciate it!
Medications / Supplements:
I have tried: Asacol HD, Bentyl, Canasa, Rowasa, VSL #3, Lialda, Uceris, Prednisone, Chinese herbal supplements, Green Superfood, Slippery Elm, Metamucil, Citracel, Immodium, Iron, Vitamin D, multivitamins, Vitamin C, calcium, etc. I have also been on a gluten free diet and the SCD diet.
So far, the only relief I have had is from prednisone, however, there are many other side effects that have been caused from those little white pills. Additionally, I saw some relief from the SCD diet and would recommend anyone with IBD to try it.
Currently: I am taking 30 mg of prednisone, 4800 mg of Asacol HD, Iron, Vitamin D, a One a Day Multivitamin, and I am scheduled for my first Remicade infusion in two weeks.
written by Christina H
submitted in the colitis venting area