Remember how I blogged about Rebecca Zamolo last week? She’s the woman who made a documentary about her experience with Ulcerative Colitis and adjusting to life with an ostomy bag. Well, her publicist contacted me and offered me an interview with her and, of course, I jumped at the chance. Her story resonated with me so much, how could I not take advantage of this opportunity? As someone who struggles with IBD everyday, Rebecca is a huge inspiration to me.
Living with an invisible disease like IBD can be very isolating. The debilitating physical and emotional pain is just not something patients typically talk about and actress Rebecca Zamolo understood this all too well. After eight years battling Ulcerative Colitis, in 2014, Rebecca’s doctors told her she needed an ileostomy– surgery to remove her colon. When she received this news, she decided that she needed to raise public awareness of these horrible diseases. With support from 186 Kickstarter donors, Rebecca and director Jay Diaz created a documentary following her through the life-changing surgery and struggle of adjusting to life wearing an ostomy bag, while also attempting to run a half marathon just two months after surgery. The film is available on Vimeo for rent or purchase and my interview with Rebecca is below.
When and how were you first diagnosed with UC?
I was diagnosed with UC 8 years ago (2007). I remember going for a run and having to use a bathroom within minutes. I went 3 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.
During your battle with UC, did you ever experience remission? If so, what do you think contributed to it?
I unfortunately never experience remission but after I’d be in the hospital and pumped with steroids. I would feel the best right after when I was on a high taper off of the Prednisone. But eventually the taper would be done and my symptoms would get worse again. This was kind of the cycle for the last 8 years.
Did diet changes ever help your symptoms?
The thing that worked best for me was food combining. It’s where you don’t mix your proteins and starches, which then creates optimal digestion. When I followed it strictly is when I felt my best, but again, I was never in remission.
Did Remicade work for you?
Remicade worked for me in the beginning, but then it didn’t. They even tried me going on it while taking another medication (thinking 2 at a time would help increase the success) and then taking it every 4wks instead of 8wks. 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?
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 it she told me that my Ulcerative Colitis was at it’s worst and the lining in 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 even worse.
How did your colostomy bag change your life?
Once I got used to it, the bag really gave me my life back. Even the most simple 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 a colostomy bag?
The hardest part of having the bag 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 everyday 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, and I didn’t think it would be possible to look or feel sexy with a bag.
What’s something you want people to know about you/IBD?
I want people to know that IBD is not something to be ashamed about. The only way we can spread awareness is if people are willing to talk about it. That’s how we can educate others. Also, many people suffering with IBD you wouldn’t be able to tell just by looking at them. I know many people had no idea I was sick, but yet I was private.
How are you doing now with your JPOUCH surgery?
I just had my second surgery where they created my JPOUCH. The JPOUCH will act like a “pseudo colon” and they create it using my small intestines. During the next 3 months the JPOUCH will set in (I will still wear an ostomy bag) and in June they will close everything up. Assuming everything goes well, I will be back to going to the bathroom like a normal person and without an ostomy bag.
This second surgery was a lot more intricate then 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! 🙂