Caring for Crohn's & UC

Sarah Choueiry Talks About Her Journey With Crohn’s

February 13, 2013 at 3:41 pm Rebecca K. 1 comment

For those active in the Crohn’s blogging world, you’ve come across Sarah Choueiry at one point. Sarah is the amazing person behind the My Journey with Crohn’s blog, which recently became a non-profit!

Below, Sarah talks about her Crohn’s journey and how she came up with the idea for her foundation, as well as its goals.

Caring for Crohn’s: When were you diagnosed with Crohn’s? Tell me a little bit about your Crohn’s journey.

Sarah Choueiry: I was diagnosed at the age of 14 but suffered from it since i was 12-13. I was put on Asacol right away. I have to say certain things in my memory of having Crohn’s as a teen stick out more then others. I remember the constant visits to the ER because of the uncertainty if I had an obstruction and then having to go to school the next day. I remember there being a year that visiting the ER happened once a week. I remember having to go to the bathroom after EVERY meal and not thinking twice about it, like it was weird because it is all I ever remembered.

I remember begging my stomach to behave before I went to school dances so that I could survive the night without needing the restroom or calling my dad to pick me up. I remember drinking Ensure at recess and getting the life teased out of me. I remember people always commenting on how I would lose weight and tell me to eat, as if I had control over my weight gain. I remember having flares and being told, “What did you do to cause it? What did you eat? Relax…” Yeah, Crohn’s does not work like that. So to sum ALL that up, being a teen with Crohn’s was not easy BUT I had incredible parents who always stood by me, took care of me and always said, “Remember, you are not your Crohn’s, do not let it define you.” And that always stuck with me… Overall as a teen, besides what I wrote above, I lived a “normal” teen life… with crushes on boys, drama with friends and just enjoyed being silly. 

As a young adult, 19-22 years old, I rebelled against medication and chose to take myself off of it. Was that smart? NO. But my GI said he saw that a lot with people in that age, the invincible syndrome (as we called it) because I never thought this disease could take me down AND I never really realized the severity of what I had. I never knew how BAD it could get. I definitely got sick a bit and finally went back on 6mp when I was around 22.

I stopped taking 6mp around 23 and from there did not take any medication until i was 28 (this past  year) when things just got really bad. Between 23-28, I was in a form of remission I would say, but don’t get me wrong. I hit my downfalls and my mini-flare night but at the beginning of 2012, that is when things really went LOW and I knew something bad was coming. I  began to do all those lovely CT scans, MRIs and colonscopies. They all showed VERY active Crohn’s.In mid-2012, I was put on Entocort and 6mp, but by September, I was hospitalized with very low red and white blood count (consistent argument whether or not to do a blood transfusion at that point). I was doing iron transfusions, IV Prednisone, fluids and a liquid diet.

Now that week stay was not fun and scary. Since then, I needed 3 months to begin to feel like myself, taper off the Prednisone and feel the Humira kick in. This past January, I began to feel better and was so grateful for that. In the middle of 2012 is when i began the project to create The Crohn’s Journey Foundation out of a need and want to find a retreat to go to with other IBDers where I can create my IBD family support network and find a place to grow and learn more about IBD.

C4C: Have you had surgery?

SC: Nope and I am very grateful about that. Those who have had surgery, I send them so much respect because that is tough.

C4C: What has been the hardest part about having Crohn’s for you?

SC: For me, it is the uncertainty of how long the Crohn’s flare will last when its active, and feeling like the pain, discomfort, fatigue and emotional components of it all will never end. I am not a fan of uncertainty and to be not know when I may flare again or how bad it could be despite, and that I can do everything right and it STILL may come back. That bothers me a bit sometimes. However, its something I work on, to let go of what I cannot control and take action in my life on aspects I can control.

C4C: How has your husband handled your disease?

SC: My husband has been GREAT! I am blessed that he has been very patient with me. Oh poor guy, especially when I was on Prednisone and I threatened to divorce him like four times in one day. Ask me why now and I have no idea. Man, that drug (especially when I was on 60 milligrams for a week) can affect your moods). He has been very sensitive to my needs and respectful and never wants me to feel anything but comfortable. I know it’s not easy for him because the last five months have not been very fun social times in our lives because my energy level, pain level and overall motivation to do anything more than rest and lay there was not high. We also grew with our communication at that time and had to really talk about serious topics such as fertility, medicine and overall lifestyle. But he has been open and trying hard to help me emotionally throughout this time. I did a video interview with him about it and in the video, he states that it is very hard for him to see me in pain and he feels helpless because he can’t do anything to help me.

SC: The idea came up from my want/need to find a retreat for myself to go to that would allow me to connect with others with IBD and my need to find that balance between treating my Crohn’s with an east-meets-west approach. I could not find it so I decided to create it! In addition to retreats, the foundation includes “The Heart Project,” which is the “IBD movement to love your insides.” This is a project that focuses on LOVE and loving something that we may at times hate, which is our insides. It is a way to take a positive outlook on something that may be a negative part of our every day at times. It also has a blog which allows me to connect with my IBD family and share what I am researching to better understand what IBD is about. I have videos, where I answer questions from my fellow IBDers about having Crohn’s and anything pertaining to living with it on a every day basis. We also have recipes, a merchandise page, events page and so many other goodies! I hope everyone can take a second to look around. This project is my heart and love and I could not do it from the continuous love and support and motivation from my Crohnie Family and Colitis Friends.

C4C: What is the mission of your non-profit? What do you hope to accomplish with it?

SC: I hope to create a haven for those with IBD to go to where they can find support and create life long relationship/friendships with those who they can relate to in this crazy, beautiful world.  I also wanted to create the “IBD movement to love your insides” so that we can begin to see ourselves with love and work on the negative self talk that comes with being sick all the time. I am not saying everyone faces this but I know many do – I have at different parts of my life. So this is to create a love for your insides and an awareness to the world to see how IBD is not easy, but we are strong. 

C4C: Who else is involved in your non-profit? Any other organizations or individuals?

SC: I have the amazing Kevin Barnes (web developer) and Linton Rogers (graphic designer) who made my vision for the foundation web site come true because of their generous offer of their time, creativity and love for the fight against Crohn’s.  I also have the Fabulous Maya who came on board the last month and been my wing woman with facing all the mini-obstacles I encountered the last couple months, and helping me make things happen. Aaron Domigos is my first volunteer to join the team and has surpassed my vision of what someone with passion for IBD could do! You can read all about them on my About page.

C4C: Any last thoughts?

SC: I just want to add the gratitude I have for all my supporting IBDers out there who motivated me every day to make this foundation happen. I do it for them. Sounds a bit sappy, BUT I can not help it.

I also want to share something I try to tell myself every time I am in a bad flare.

“It will pass.”

When you are in a bad flare, it is SO hard to believe that pain/discomfort/anger/sadness from it all happening will ever pass. But it will and it always does. Maybe not as fast as you would like sometimes. Just know it will PASS.

I also want you all to know that I am here for each of  you, so if you ever need anything, you can always send me a tweet or a message via Facebook or an email through my page!  

E-mail: sarah@thecrohnsjourneyfoundation.org

Facebook: https://www.facebook.com/MyJourneyWithCrohns

Twitter: https://twitter.com/SarahChoueiry

Website: www.thecrohnsjourneyfoundation.org

Tumblr: http://thecrohnsjourneyfoundation.tumblr.com/

Pinterest: http://pinterest.com/crohnsrecipes/

Sending love to all of your bellies!

Thanks Sarah for taking the time to answer these questions. I’m excited to see how your foundation continues to unfold over time!

Entry filed under: Advocates, Interviews. Tags: Advocate, crohn's, crohn's disease, Crohn's Sucks, ibd, inflammatory bowel disease, uc, ulcerative colitis.