The first week of December is Crohn’s and Colitis Awareness Week, a global effort by the Crohn’s and Colitis Foundation to highlight the need for awareness, research development, and empathy for those diagnosed with Inflammatory Bowel Disease (IBD). IBD is a chronic autoimmune disease of the digestive system. There are two different kinds of IBD: Ulcerative Colitis—which affects the colon exclusively, and Crohn’s Disease, which can affect any part of the digestive system from your mouth to your bottom. Since IBD is considered to be an “invisible” illness, meaning it is near impossible to tell if someone lives with the condition simply by their physical characteristics, anyone around you could be fighting this battle as it appears mostly asymptomatic on the outside. For those who fight, however, an internal battle rages, and this invisibility is both a blessing and curse; on one hand, privacy is upheld if desired, but on the other, the severity of IBD can often be ignored or not taken seriously by those around them.
One of the best DePaulians you can ever meet in this place, Julia Golden, Class of 2019, was diagnosed with Crohn’s Disease when she was just 9 years old and is here to provide insight on her journey and what you can do to spread IBD Awareness.
How did you know something was seriously wrong, and that your symptoms were not a common stomach bug?
When I was in third grade, I started to lose a lot of weight really fast (which we eventually learned was because my body was not absorbing any nutrients from the food I was eating). I can remember running to the bathroom at least twenty times a day, and when this lasted quite a while I knew something was wrong. My parents and I met with a pediatric GI doctor (gastroenterologist) and I had a series of tests to figure out what was going on. It was finally via a colonoscopy and upper endoscopy that doctors were able to confirm my diagnosis as Crohn’s Disease.
What was your treatment plan and journey like?
After diagnosis I was prescribed a variety of medications, but it was a lot of trial and error to get my disease under control. Combinations of different meds would work for a little while only to fail a few months later. I went through countless cycles of slight relief followed by intense pain and then new medicine, only for it to repeat all over again. After nearly 11 years of this unpredictability, false hope, medical leave from school, and a grand total of 16 colonoscopies and minor surgeries to treat fistulas and strictures in my colon, I made the decision to get an ileostomy.
Describe what an ileostomy is and how it helps relieve and heal your body. Also, why did you decide on this procedure instead of an alternative?
An ileostomy is created when a colorectal surgeon pulls a small section of your small intestine through the abdominal wall to form an opening (stoma) above the skin. It’s actually pretty amazing—the intestines are the only internal organs that can live outside the body. Since there are no nerve endings in the intestines, having a stoma does not hurt at all once the abdominal muscles heal after surgery. “Ostomates” have an ostomy bag fitted over the stoma that collects waste. I empty the pouch throughout the day and replace the bag every 3-4 days.
At that point in my life, my colon was so damaged from years of disease that I wanted to give it a rest. I also wanted to give me a rest! I had a no quality of life and was tired of my disease controlling everything. It was important for me to come to the decision to have surgery on my own, and I finally did last fall. On November 21, 2016, I had my surgery. My stoma (her name is Squishy), diverts the flow of waste into my ostomy bag so my colon is not currently being used. There was an option for me to remove my colon and rectum entirely (this is called a total proctocolectomy), but this procedure is much more complex and carries additional risks, including a harder recovery period. So I opted for my “temporary” loop ileostomy instead. This way if a cure for Crohn’s is discovered one day, individuals with a this kind of ostomy hypothetically have the option to re-attach their small intestine and use their colon again, OR if their colon has been removed, their small intestines can be manipulated in a way that would allow them to work just like a colon (this is called a “j pouch”). I am not eligible for either option because the damage to my colon is too severe for reattachment, but at this point I think I’d prefer to keep my ostomy forever anyway. I am so thankful for my stoma and the freedom it has given me, and I’m planning on eventually having a total proctocolectomy someday.
Have people ever reacted negatively and or insensitively to your condition and decision? If so, how? What shouldn’t you ever say to someone with IBD or an ostomy?
For the most part, no one can tell that I have an ostomy because it’s well hidden under my clothes. Some people who are aware of my condition have made insensitive comments, but I don’t really mind anymore because I know that my stoma saved my life. It’s important to surround yourself with people that are supportive of you! There are a lot of stigmas about ostomies that made me very afraid of having one when I was younger, but educating myself on the surgery and ostomies in general put me at ease.
I really hate when people compare IBD to IBS. (IBD = Inflammatory Bowel Disease, IBS = Irritable Bowel Syndrome). IBS can be very hard, but it is a condition, whereas IBD is an inflammatory disease that can include a wide variety of symptoms like skin and/or eye problems, joint problems, fatigue, as well as depression and anxiety. That’s not even including the damage it does to your digestive tract! IBD can cause destruction and lasting damage to your digestive system, while IBS, though annoying, doesn’t cause any permanent damage.
I think the biggest misconception I’ve encountered when talking about IBD with others is how diet relates to IBD. Crohn’s Disease and Ulcerative Colitis cannot be cured by diet alone. Certain diets may help alleviate some IBD symptoms in certain patients, but the disease is still there. It can be very frustrating when people assume diet alone can cure me. I know that people are just trying to help me, but when people preach about diet, I feel that they’re implying that I somehow caused my disease, which just isn’t how this works. People may mean well when they bring up diet, but it’s important not to believe everything you read about food and IBD on the Internet.
Does having Squishy the Stoma mean that you no longer have IBD?
Even though I had surgery, I still have IBD and it will never go completely away because that is the nature of chronic illnesses. I will always have Crohn’s Disease unless a cure is discovered. I still have to take about 7 medications by mouth daily to keep my symptoms under control and manage the inflammation in my small intestines. My ostomy put me in clinical remission for several months, but unfortunately my disease flared this summer which required me to switch to a new main medication, an injection that I give myself every 8 weeks. Different treatment options work for different people, which can include pills, injections, or infusions. Having my ostomy didn’t cure my disease, but it has eliminated a lot of my symptoms, which makes flaring much more manageable than it used to be for me.
Major, Minor, and Game Plan:
I am a Psychology major with a Human Development concentration. I’m also minoring in Women’s & Gender Studies. Since the beginning of this academic year, I have been working as a research assistant in a lab studying pediatric chronic illness, which has been amazing! After DePaul I plan to get a Master’s Degree in Child Development and become a Child Life Specialist to help sick children understand and cope with their illnesses.
I have LOVED volunteering at Camp Oasis (a camp for kids with IBD) in the past, and last summer I volunteered at Lurie Children’s Hospital in the Family Life Center. I also work closely with Children’s Miracle Network Hospitals and Lurie’s during the school year via Phi Mu Fraternity. My sorority sisters have given me so much love and support when it comes to IBD and I love them very much.
The Hunger Games Trilogy. I don’t care that it is supposed to be for young adults, I love it so much and will continue to read it over and over. I’m a huge fan of dystopian books and science fiction in general and am currently starting to make my way through the Outlander series.
Friends, Parks and Rec, The Office, Brooklyn Nine-Nine, Curb Your Enthusiasm, Crazy Ex-Girlfriend. There’s so many great shows I’ve binged in the last few months like Alias Grace, Mindhunter, and The 100 on Netflix, and Future Man on Hulu (I love you Josh Hutcherson). Being chronically ill, I tend to watch a lot of TV when I’m feeling sick.
Dogs vs. Cats?
I haven’t spent enough time with cats to really understand them, but I adore dogs, especially corgis! My family dog is a coton de tulear named Bailey who enjoys stealing my Kleenex and perching himself on furniture to survey his kingdom.
Crohn’s and Colitis Awareness Week Takeaways?
People with IBD are masters of the mask. In other words, we are professionals at hiding how horrible we might feel. IBD can be difficult to talk about because bathrooms and the digestive system tend to be a taboo topic for discussion, but I push myself to be honest with others about my disease and how it has changed my life so they can learn about an illness that affects as many as 1.6 million Americans. You never know what someone might be dealing with alone. Be kind to others, and educate yourself about IBD!