From Grouch to Proud of My Pouch
I burst into tears the first time I saw a picture of an exposed stoma. How could I ever feel normal with a piece of my small intestine hanging out of my stomach? How would I possibly live with something like that? Nevertheless, my colon was failing me, making it impossible to think about living a normal life. I felt like I had no choice.
I have suffered from Crohn’s Disease for 10 years. Crohn’s is an autoimmune disease in which the body produces antibodies that begin to attack healthy tissue and cause the digestive tract to become inflamed. When I was 14, I started having serious symptoms that affected my life. I had abdominal pain and diarrhea on a daily basis that made days feel long and exhausting.
Once the MVP of my field hockey team, I spent most of my time on the bench as a ninth grader. I lost a noticeable amount of weight. Those around me could tell something was wrong, but most were afraid to ask. The most heartbreaking part of my diagnosis was that I was afraid too; terrified to tell anyone, even my closest friends, what I was going through. I didn’t want to talk about my stomach problems and the numerous unpleasant symptoms that came with it. It became my secret and I managed to get through high school without letting my disease define me. All of that changed.
About five years after my diagnosis, things started to take a turn for the worse. My Crohn’s, which for so long had been just a small part of my identity, was beginning to creep into my life more and more, as much as I tried to resist it. I had just returned from my first year of college when I began experiencing diarrhea on a daily basis. Despite this warning sign, I continued to work long hours at my summer job and prepared to go back to school, trying my best to lead a “normal” life. About two weeks before I left for college, I started having pain in my throat whenever I tried to eat or drink. I wasn’t aware that this was the start of what would be a five-year flare that would completely derail my life.
From 2013 until 2017, I battled my Crohn’s Disease every single day—and I do not use the term “battled” lightly. After the pain in my throat became too severe to ignore, I ended up in an emergency room alone and scared, six hours away from home. I was told I had a severe ulceration in my throat, potentially due to my Crohn’s. I returned to Philadelphia, withdrawing from college for the first of what would become a handful of times. It was at home under the care of my regular doctors that I made the decision to give my digestive tract a rest and receive the bulk of my calories and nutrition through a nasogastric feeding tube.
I was taught how to insert the NG tube myself. I pushed it through my nose, down my throat, and into my stomach. I hooked the tube up to a pump, which would feed me liquid nutrition over the course of 12 hours. Then I would wake up, remove the tube, try to live my life, before starting the process all over again before bed. After three months, I stopped using the tube and began relying on weekly injections of two different medications. I would administer these injections myself. I started putting on some weight. I could tolerate more solid foods and I had more energy. I was able to return to school for a year in the fall of 2014.
A year later, I began experiencing symptoms eerily similar to before. The pain with swallowing returned, as did my diarrhea, and I knew something was wrong. I began trying to really listen to my body, but my doctor at school was reluctant to believe I was dealing with a Crohn’s flare. After a month or so of steady decline, I had an endoscopy to confirm that the ulceration in my throat had returned, and for the second time in two years, I had to withdraw from school.
I returned to Philadelphia to my doctors, Dr. Patty Kozuch and Dr. Ben Phillips, at Jefferson. My flare ups had gotten fairly severe by this point and my body was suffering. It was clear that the medication that had worked for me for several years was failing to keep me in remission. For the next year, I tried a handful of new medications, but continued to have setbacks. I had a resistant bout of Clostridium Difficile that hospitalized me twice. My diarrhea became chronic, occurring up to six or seven times a day. Eating became a chore. Even the lightest meals left me with excruciating abdominal pain, usually resulted in nausea and vomiting. My body couldn’t absorb any nutrients and started eating away at my muscle and fat, and my weight dropped below 100 pounds for the first time since middle school.
I felt so lost. My only focus was my Crohn’s Disease. I couldn’t escape it. Sometimes I would manage to feel like my old self for five minutes or so, but then a wave of pain would set in. I couldn’t work. I couldn’t go to school. I couldn’t enjoy any hobbies. I couldn’t socialize. I began to feel like a shell of my former self, surviving instead of living.
I felt so lost. My only focus was my Crohn’s Disease. I couldn’t escape it. Sometimes I would manage to feel like my old self for five minutes or so, but then a wave of pain would set in.
This, dear reader, brings us back to the stoma and the decision I made to receive an ileostomy in May 2017. An ileostomy is when an incision is made in your abdominal wall and a part of your small intestine (or ileum) is brought out through your stomach. Your stoma doesn’t have any nerve endings or sphincter muscles, which means you lose the ability to control when you go to the bathroom. This is why it is necessary for those with an ileostomy to wear a bag to collect waste. Perhaps what frightened me the most was the fact that after surgery, I would have something on my body that was proof of the disease and trauma I had been suffering from internally. For nearly 10 years, if I could manage to put on a brave face (and trust me, I got good at it), most of the people around me had no idea what I was going through or how much pain I was in. Now, I would have scars and a bag on my stomach—real, visible proof that I was sick.
In the weeks after surgery, these fears started to subside when I realized how amazing I was feeling, not just physically, but mentally. Without the debilitating pain, I finally felt like the fog had cleared. Sure, I had a bag. It wasn’t glamorous. It looked strange. It had a habit of leaking at the worst times. It was hard to find clothes to wear at first. But it let me live my life again. I suddenly wanted to do things I hadn’t been able to do in so long—go to the beach, go out to dinner, walk my dog, go on vacation. Yes, I had a bag, but I also had freedom, which for someone who is chronically ill, can be hard to come by.
The moment I knew my ostomy had given me a new outlook on life was on my 24th birthday. I was going to the beach and I had bought a new black one-piece bathing suit to cover my pouch. I put it on and I looked in the mirror and I just didn’t feel comfortable. I felt like I was hiding something and for the first time since I had been diagnosed, that didn’t feel right. I had been through so much pain, stress, disappointment, and finally triumph. Hiding the pouch felt like I wasn’t giving myself any credit. So I put on my bikini and went to the beach, and I was proud of my ostomy…and myself.
The more I thought about it, the clearer it became—why was I hiding this from people when it is such a huge part of who I am and how I live? Thus, @grouchwithapouch was born. I started an Instagram page that I dedicated entirely to my health, a place where I could talk to others going through the same things, but also a place where I could educate others that may not have any idea what those with Crohn’s Disease go through. I wanted people to know exactly why I had a bag on my stomach, everything I had been through that led me to that point, and that even though the concept of an ileostomy may seem foreign to most, it isn’t anything to be ashamed of.
This is my hope: I hope that people can begin to understand and accept a version of themselves or others that is not perfect. We are taught that no one is perfect, yet when people have visible flaws, they are often made to feel ashamed. Perhaps, if people were just more aware of things like ostomies, there wouldn’t be such a negative stigma attached to them. As ugly as a disease may feel, the strength born from it is beautiful. As hard as it may seem to open up about your struggle, just beginning to share a little bit at a time can be very freeing. You might be surprised by how good it feels to stop hiding what you’ve been through.