Interview With Rebecca Zamolo, Star of ‘INSIDE/OUT: My Battle with IBD’

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! 🙂

25 Comments

  1. I wish that I could straight up tell Rebecca thank you–thank you for sharing her story, thank you for maintaining the positivity (even though I know there are darker times, she is still fighting the good fight) and thank you for showing that IBD, colostomy, J-pouches, and the whole chronic illness gambit is NOT THE END OF THE WORLD. That we have have roadblocks in living our “optimal” life, but that “optimal” is relative, and you can still pursue dreams and be proud of who you are and what you do, even if you do have to have a few extra accessories in tow. I hope to goodness that we find a cure for Crohns and UC, but until we do, I am proud to be associated with people like Rebecca.

  2. As someone with IBD (Colitis), I love that she is opening up and showing off these disease. It can be hard because it seems like a weird one we shouldn’t talk about, but we should. People can’t always tell (many of my family members still don’t know I have it) but it’s still there. I love her outlook on life and that she is getting her life back! How huge is that! Thank you for this interview, Tina!

  3. What an amazing story! I cannot imagine what you have been through. I think it is so admirable though when someone turns something bad into something good and that’s exactly what you did. You’re such an inspiration!

  4. Thank you so much for sharing this awesome woman’s story. I will definitely have to watch her documentary. I had the same surgeries 4 years ago and struggled with ulcerative colitis for several years before that. It is such a difficult struggle and like you said can be so isolating because people don’t understand how sick you really are. No one wants to talk about it. A good friend of mine just also had her colon removed and it’s been so helpful for the both of us to talk to each other about our experiences. We get each other’s poop stories! 🙂

  5. Amazing story! Rebecca you are an incredible woman!! Thanks for sharing. Tina, blessings to both you and Rebecca to continue to maintain a positive spirit.

  6. As someone newly diagnosed with IBD these stories are so helpful. It is such a hard illness to want to open up about – I have definitely gotten to the more candid part now but it can be such an isolating thing to deal with. She is an incredible woman!

  7. It’s really cool that Rebecca has such a great attitude about something like this. And I can’t believe she was able to run with an ostomy bag! I get uncomfortable in certain leggings, I can’t even imagine that! Her story will inspire me now every time I run and feel like whining about little annoyances.

  8. Thanks so much for sharing! Really looking forward to watching this documentary. As someone who also suffers from UC it is nice to know that I am not alone.

  9. I think it’s so great you’re an advocate for IBS/similar conditions, Tina! Thanks for bringing awareness to it on your blog. I’m a clinical dietitian so I want to know all I can about it, and I love to see how young people are handling it and living their lives to the max.

  10. Thanks for sharing this honest and inspiring journey with us. It’s an important issue that needs to he talked about. Rebecca’s attitude and success are inspiring. Tina, I hope your symptoms have been under control lately and remain that way!

  11. Oh my gosh, Rebecca is one of the funniest people (I love her YouTube channel) and I had no idea she was experiencing such awful health problems! Will definitely check out this documentary!

  12. I’m a little confused. Does this woman now have a Jpouch??? If she does, well of course she has a great attitude. She knows she wouldn’t be carrying around the bag for the rest of her life. Let somebody who will be wearing the bag forever talk to me. By the way, having the Jpouch, you will have poop like diaharra and when you feel like you gotta poop you better go poop or you’ll be pooping on yourself. I’m writing this for my sister, she’s in the bathroom.

  13. She’s and inspiration I have crohns and I have the opposite I don’t go to the bathroomroom everyday but every few days.
    I’ve been on remicade, Humera, Remicade paralyze me in the hospital for a month told I was dying.. Humera made me get blurred vision.. no diet really helped at all. Now I’m tring a holistic way of approach with help from a Dr, Here in my home town.
    I take many supplements, and etc a clean organic diet with not bread.. for me it is the gluten that seem to flare it up.. the stabbing pain and the blood in the stole.. My life so fare has been normal with out the bleeding but still don’t use the bathroom that much but aloe does help.. for most of the cases people with crohns are so thin, I struggle with weight ever since I stopped prednisone.. even though I walk 3 miles 5 days a week and eat clean I’m not obese or over weight much but can’t seem to lose weigh.. I guess as I get older it’s harder.. my fear is to have the Jpouch…
    I’m very curious to see her a year from now and see how she is holding up and her story then..

  14. You are a true fighter! My husband was diagnosed with UC and Crohn’s disease at the young age of 18. He struggled with it for many years never fully going into remission. At the age of 35 things hit rock bottom and he too was told after a colonoscopy that he had to have his colon removed and have surgery for the j- pouch. He had the surgery and unfortunately due to the severity and many years of having the dieseases he ended up having a permanent Osteomy. We thought this was the worst thing ever been in reality it was the beginning of him being able to live his life again. He now can live his life and do things he never could. It was a life change getting used to having an Osteomy but he wouldn’t trade it for the world. To anyone reading this, don’t lose hope , there is a light at the end of be tunnel! Have faith and believe!!! ❤️

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