I have been realizing lately that I’m not always thorough with my description of my chronic illness of Crohn’s Disease and how it affects my life. I’m improving though. I used to pretend that I didn’t have an ostomy, and I would rarely talk to anyone outside of my immediate family about Crohn’s or my ostomy. I didn’t want to be thought of as “different.” But I’ve come to find that the more honest information I share with others, the closer I become to them (Crohn’s related or not).

Those who dared to ask me questions are the most knowledgeable about my life and illness, and they’ve stuck around. I love answering questions and informing people about anything Crohn’s or ostomy related, but I don’t like talking about myself unprompted.

However, since it’s Crohn’s and Colitis Awareness Week, I’m offering up more information. Here’s my somewhat prompted story….

(Healthy teenage years)

I was a healthy kid who was hardly ever sick and played soccer probably more than I needed.

In 2007, at age 17, I started having frequent loose bowel movements with increasing blood loss. Once I explained to my parents what was going on, it took a while to be scheduled for a colonoscopy. I had a colonoscopy in Spring of 2007. After the scope, the doctor basically told me that I had Ulcerative Colitis, to take the medication Asacol, and that I would be fine. 

I was not fine. The bleeding continued to the point that I was rapidly loosing weight, could not eat food, and would just lay in bed all day. One day, my mom came into my room and said that she had called Dartmouth Hitchcock Medical Center and they would be admitting me that day. I put up a fight, but really had no alternative, and we drove the two hours to the hospital.

I can’t accurately describe all the details, but there was lots of crying and “woe is me” conversations. But after multiple hospitalizations, including a transfer to Boston Children’s Hospital, I was eventually started on Remicade infusions, given blood transfusions, and began to gain my health back.

(Able to eat again)

Things went well for the summer, but my symptoms returned in the fall of my senior year of high school.

With what feels like almost no information from the surgeon (other than the fact that my colon was “the worst” the surgeon had ever seen), I “elected” to have my colon removed and have a j-pouch created.

In December 2007, I had a total colectomy and j-pouch creation with temporary ileostomy.  https://backcountryostomy.com/my-ostomy/ ‎

Then, I had my j-pouch hooked up in March 2008. Things slowly got better after my surgeries. With tutors and lenient teachers, I graduated high school.

I went off to college at Fordham University in fall of 2008.

From 2008 to June 2013, I went through periods of good health and active disease. I had anywhere from 6 to 20 bowel movements a day. I woke up 6 times a night to poop. I pooped my pants every day (sometimes just small leaks). I dropped down to 87 pounds at one point, and had to wear children’s pull-ups. I had pancreatitis, osteomyelitis, lyme disease, and home antibiotic infusions. I had to self-dilate to keep the scar tissue from closing up my anal sphincter. I tried every medication under the sun, including 6 hour infusions, diets, and naturopathic medicine. My peri-rectal area filled with abscesses and fistulas that had to be drained. I had “arthritis” in my joints and could hardly walk around my apartment. My diagnosis was changed from Ulcerative Colitis to Crohn’s Disease with pouchitis of my j-pouch. I was hospitalized on numerous occasions. I cried a lot, and I was anxious all the time. I rejected the idea of having ostomy surgery on multiple occasions.

Throughout that time, I also spent time with my family, traveled to Italy, moved to New York for 2 years of college, traveled to China, moved home to NH, moved to Boston to finish my undergraduate degree, learned to love bike commuting around Boston, biked across the country, and started my graduate degree in Occupational Therapy. I kept on going because that was life.

(At my lowest weight of 87# in the summer of 2010)

(At my cousin’s wedding with a PICC line for home IV antibiotics)

(Oregon coast after biking across the country)

(Graduated with my Master’s in Occupational Therapy)

Finally, I gave up the fight against the idea of an ostomy. Since I like to be prepared for life ahead, I attended ostomy support groups before I had an ostomy myself. I researched how to have more positive outcomes after surgery. I became friends with a student at BU with an ostomy who was the most positive person I knew, and her story was life changing in my decision making process. I told my surgeon that I was ready, and to accommodate my school schedule, he scheduled me for my ostomy surgery between the end of the academic year and my fieldwork for school.

My permanent ileostomy surgery appeared to go well. It was strange to adjust to life with an ostomy. But the first few weeks felt good. Then I started having recurring prolapses and retractions off my stoma, where my intestine would come out a bit (6″ one time) and then suck back into my abdomen, causing abdominal blockages and trips to the ER.

These prolapses happened from June 2013 to October 2014, causing me to undergo 2 more surgeries for stoma revisions.

And finally, things were fine. I moved to Alaska, got a job as an Occupational Therapist, and slowly made friends. From 2014-2018, I worked on taking my life back.

I have the occasional iron infusion. I give myself monthly shots of my maintenance medication. I continue to have blockages, but I am able to manage them without going to the hospital. My ostomy leaks here and there. I get peri-rectal abscesses which either have to be drained or treated by antibiotics. I get yearly scopes of my non-operational j-pouch (which will some day have to be removed). I get poop on myself, but I no longer poop my pants. My Crohn’s related stress, anxiety, and depression are gone. I’m able to live life again and deal with obstacles in a more constructive manner. And most importantly I am able to adventure, and spend quality time with the friends and family who have supported me in the process.

I share this brief snippet of a long journey that will continue for the rest of my life, not to congratulate myself on working through a challenging situation, but to share what living with Crohn’s and Colitis can be like. It’s an illness that I don’t think is always widely understood because it varies individual to individual. Sometimes, with my ostomy, I forget that I even have Crohn’s because my symptoms have changed from 2007, and I consider myself to be a healthy individual.

I think it’s important for the public to be educated on all different illnesses to understand why someone might not be having a great day, whether they have Crohn’s or a completely different illness or issue. Some days are really bad. Some days are okay. And some days are amazing. That’s the way life goes.

So share this story, learn about a different illness or topic or person, and let there be more amazing days full of learning and adventure.