This is my story of the triumphs and struggles of living with Crohn’s disease. I was diagnosed in October 2014 with Crohn’s disease shortly after my wedding. I had no idea that I actually had the disease, but for years I was missed diagnosed with irritable bowel syndrome. As I was approaching my wedding in September 2014, my illness progressively declined. The stress of planning a wedding and starting grad school at a new school was difficult. I had spent two years in my late 20s preparing for graduate work in the field of speech and language pathology. However after finishing the post baccalaureate work, I was unable to get into a program for at least one year as most Speech and Language graduate schools are impacted. During this time I was still undiagnosed and progressively losing weight, losing sleep, struggling in school, and having a hard time using the restroom. For three years I went back-and-forth seeing various doctors, all of whom said that I had IBS. It was difficult to maintain grades that would be acceptable to get into grad school while battling this unknown disease. It was a very positive time in my life because I was planning for my wedding to my lifelong friend; however, I had no idea what I was battling internally and everyone on the outside would see and comment I was getting skinnier and losing weight. As I mentioned, it was a struggle to maintain grades needed for acceptance to a masters’ program, but in my post baccalaureate program, I managed a 4.0 GPA using strength and determination to succeed. In the spring of 2014, I received notice that I was accepted into the graduate school program at California State University, Long Beach. It was a highlight in my life, and my hard work and dedication through the adversity had paid off.
During the summer before I started graduate school, it became increasingly difficult to use the restroom. I found myself often in the bathroom for extensive periods of time. Sometimes it was painful just to sit down and urinate. I went to see the doctor for several weeks in a row only to have them tell me that I had chronic Urinary Tract Infections. After having several visits with my urologist and frequent cystoscopies, the outlook was not favorable for my system. My fiancé at the time and I were less than a month from our wedding and decided to continue with our special day and seek expert medical care immediately following. September 27, 2014 came and it was highlight of my year, although I knew in the back on my head I would need serious help the following days, weeks, months and maybe years. The Monday after the wedding, I was admitted to urgent care after having an especially difficult couple of days. I was admitted into the hospital for a week and had to have a colonoscopy. It was then that I was told that I was officially diagnosed with a severe case of Crohn’s disease. I was two months into my first semester of graduate school and all the while I was still participating in classes. It was difficult to explain to my professors why I was struggling in their classes academically, and it was even more difficult to help my new classmates understand what I was dealing with on a daily basis. Unfortunately, during the high point of the struggle, I had to drop one of my graduate classes out of the three classes I was taking in order to successfully complete at least the other two classes. The process was complicated to get that class taken off my schedule because I had to explain to the dean of the school why I need to withdraw from the class after the deadline. I was very nervous to drop the class but I could no longer take on the academic load of three graduate classes. However, I successfully completed the other two classes before taking a break during the winter vacation. Vacation time is very helpful for me to be able to recoup my energy. Due to the illness that I have, I was not able to even take my honeymoon. The goal is that when I am feeling better we will go as celebration and dedicated honeymoon trip.
After winter break I started back at school again for the spring of 2015 semester. At this time, my gastroenterologist prescribed me some medication in order to combat the flare-ups of Crohn’s disease. However the damage within my intestines had been done, therefore, I was told that I needed to have bowel resection surgery. The spring semester was a little bit easier because I understood what food I needed to eat in order to not have a flare-up. It was still challenging to sit through the 2 1/2 hour classes, while also accumulating needed hours of tutoring and working with students at the clinic setting. As time progressed on, I was able to make good friends who were very understanding of my health situation and I tried hard not to tell or show my sickness to everyone. Additionally, the professors began to ask me how I was feeling to help modify the class schedule and tests if I needed assistance. My first and most important goal during school was to maintain my health. The professors and college dean are very understanding now as they understand the severity of Crohn’s disease. Even though it was hard to wait till the end of spring to have my surgery, it turned out to work out and be a blessing that I waited until the end of the semester. I was able to complete all three classes successfully, but not without its challenges in terms of memorization and academic complexity. I went ahead with the bowel resection surgery, which after several small complications at first, now going on 3 months ago has been a success. I do still continue to struggle with fatigue and memory loss and have therefore been spending my summer months studying in preparation for the new semester in the fall.
I hope my story can be shared with others who struggle with Crohn’s disease while attending school. The most important advice I can give is to focus on your health first and everything else is secondary. If the individual has a strong support system like I have with my husband, this always helps as he emphasized countless times to do my best and focus on my health first. Many of my family and friends made it clear, if it was too difficult to attend school, I could always take a medical absence, go on academic leave and return to school when I felt healthy enough. Personally speaking, I wanted to continue to challenge myself in the midst of the daily struggle and while I thought about taking the easy way out, I knew it would only be easy in the short run. Many times I still came home to study while finding time to rest after, doing the best I felt I could do. Another piece of advice would be to make sure to plan out appointments with doctors and never break them. It’s very important that patients with Crohn’s disease follow up with all of their doctors and eat accordingly. If your body shuts down, you won’t be able to attend school and function properly. Managing a diet that doesn’t flare the bowels up, while also keeping a diary of what you eat, to record what affects you positively and negatively is crucial. Finally, I would advise others suffering from any ailment to surround themselves with people who can be supportive to you during this time. These people can include: your professors teachers friends family. Anyone who is willing to understand the ends and out of the disease will be able to be of help in any way necessary. Those are the things that helped me most when navigating this incurable auto immune disease.
Three techniques that also helped me to live with Crohn’s disease were, yoga, diet and therapy. Yoga has been a great form of relaxation and meditation. It helps when move the body slowly and stretch muscles while various poses aid in positive digestion within the intestines. Also, the mental focus that comes from meditation is key. There are moments when alone time with your thoughts can help you find spiritual center and for me, yoga helps me to fight through the pain. As a patient with Crohn’s, I’ve had to learn to adopt a Paleo diet. I also work to avoid gluten within my meals. Sometimes this is difficult because I have to plan for meals for my husband and myself, but overall I strive to eat more organic food that will digest well in both our bodies. Finally, and not least important is to have someone to talk to. Sometimes that person is my mom, my dad, my brother, or my husband, however, sometimes talking to family is too close to home. Therefore, I have started to have therapy sessions through my old school, University of Southern California. It’s easy to get bogged down with the pressures of Crohn’s disease, let alone the natural struggles of being a student in grad school. I have found though that holding in any internal stress and anxiety is very detrimental to my disease and can cause a flare-up. I love speaking to others and gaining perspective from them and while it is difficult sometimes to be honest with how I am feeling, it is freeing to share at the same time.
Photo Credit: Bethany Gilbertson Photography