This article appeared on Carrotsncake.com.
Living with an invisible illness like Inflammatory Bowel Disease (IBD) can be isolating. The debilitating physical and emotional pain is not something most patients like to talk about. Rebecca Zamolo understands this all too well. In 2014, after battling ulcerative colitis (UC) for eight years, her doctors said ileostomy surgery was necessary to save her life. This news terrified her, so she searched the internet for stories about people who were going through the same but didn’t find much.
Rebecca decided to raise public awareness about IBD and lifesaving surgery by talking openly about her experience. With support from 186 Kickstarter donors and Director Jay Diaz, the documentary INSIDE/OUT: My Battle With IBD was created to film Rebecca's journey from sickness to surgery to health, and her goal to complete a half-marathon.
As someone who struggles with IBD every day, Rebecca’s story resonated with me so much. She is a huge inspiration to me. Her publicist reached out and offered me an interview, so of course I jumped at the chance.
When and how were you first diagnosed with UC?
RZ: I was diagnosed with UC in 2007. I remember going for a run and having to use a bathroom within minutes. I went three more times that run but assumed I had a stomach bug. That next week I kept having to go to the bathroom, so eventually, I decided to see a doctor about it. The doctor had me do a sigmoidoscopy where they told me I had ulcerative colitis. They basically told me I would have to take medication for the rest of my life. I had never heard of UC before and had never really taken medication in my life so it was all very confusing for me.
Have you ever been in remission from ulcerative colitis?
RZ: Unfortunately, I never experienced remission. After being in the hospital and pumped with steroids, I would feel the best right after—when I was on a high taper off of Prednisone. But eventually the taper would end and my symptoms would get worse again. This was kind of the cycle for the last eight years.
Did changing your diet help your symptoms?
RZ: The thing that worked best for me was food combining. It’s where you don’t mix your proteins and starches, which creates optimal digestion. When I followed it strictly is when I felt my best, but again, I was never in remission.
Did taking Remicade work for you?
RZ: Remicade worked for me in the beginning, but then it stopped. My doctors even tried having me on it while taking another medication (thinking two at a time would help increase the success) and then taking it every four weeks instead of eight weeks. I stayed on it until my wedding (while taking Prednisone) but ultimately it stopped working.
What ultimately made you decide to have your colon removed?
RZ: When I came back from my honeymoon, my gastro doctor called me in to see her. I had gotten a colonoscopy right before my wedding, but we never really talked about the results. When I went in, she told me the ulcerative colitis was at its worst and the lining of my colon had become pre-cancerous. I asked if we could do another colonoscopy (I thought it was the stress of the wedding and hoped that everything would get better now that it was over) and she agreed. I had my last colonoscopy in August and my colon, had in fact, gotten worse.
How did living with an ileostomy change your life?
RZ: Once I got used to it, the bag really gave me my life back. Even the simplest things (like walking to dinner, going to the movies, shopping with friends) I was able to do again, when before these things caused me a lot of stress and anxiety. I finally got to just be present and live in the moment. I got to be spontaneous! I felt like a child again experiencing life for the first time. The biggest thing for me was getting to run again, without the pain I had before, and without having to stop a million times to use a bathroom. I have always loved running, but my disease had taken it away from me.
What was the hardest part about having an ostomy bag?
RZ: The hardest part was figuring out how to live with it. The first couple weeks were like a boot camp. From dealing with leaks, to my dog ripping the bag off in my sleep, to not closing the bag correctly and having it spill on the floor — I pretty much cried every day over something. Also, figuring out what clothes to wear was an adjustment. It was really hard because I was used to dressing a certain way. I didn’t think it would be possible to look or feel sexy with an ostomy bag.
What is something you want people to know about IBD?
RZ: I want people to know that IBD is not something to be ashamed of. We can help spread awareness if people are willing to talk about it—that’s how we can also educate others. For some people suffering from IBD, you wouldn’t be able to tell just by looking at them. I know many people had no idea that I was sick, but yet I was private.
You decided to have a J-pouch. How are you doing now?
I just had my second surgery for the J-pouch. This internal pouch will act like a “pseudo colon” using my small intestines. During the next three months my surgeon will create the J-pouch (I will still wear an ostomy bag) and in June they will finally reverse the ostomy. Assuming everything goes well, I will be back to going to the bathroom like a normal person.
This second surgery was a lot more intricate than the first, so my recovery has been a little harder. I was on a liquid diet for a week then went back to solid foods. My body wasn’t quite ready to handle solid foods, so I am now back on a liquid diet again. Sometimes it’s hard for me, but I just need to listen to my body and I know it will heal itself.
What race are you training for next?
Right now, I’m trying to just let my body heal so I’m not planning any races yet. I would love to run another half marathon in May though, before my final surgery — rocking my bag!