Dear Family and Friends,
Welcome to our personal page for fundraising and thank you in advance for supporting us. We are the proud Captains of THIS BAG AIN’T PRADA. While we are both a support to one another when we encounter our ups-and-downs in living with Ulcerative Colitis, our stories are very unique. We appreciate you taking a moment to learn about our individual experiences. With Love, Raquel and Sloane.
My name is Sloane Feldberg and I am almost 16 years old. I have Ulcerative Colitis. When I first was diagnosed, I was 8 years old and I didn’t really understand what this disease was but there was something wrong with me. My Mom and Dad had a feeling they knew what was happening to me because they saw blood in my stool and I had a very sore stomach all the time. Ulcerative Colitis was already in my family as my Mom was diagnosed the year I was born and was very familiar with the horrible symptoms of UC.
Going to the hospital and having tests is difficult to deal with because you have to get blood work and special procedures that hurt. I’ve had CT Scans, MRIs, and have been put to sleep to have Colonoscopies at the hospital. Every day, I take medication to help control my disease. Without taking my medication, I would be sick...I really need it. I have taken many types of medication especially when I have flare-ups and this is when I am in the most pain. Sometimes the medication is REALLY uncomfortable for me to take.
I have lots of good days. I love to be with my friends and play ice hockey and, mostly, have lots of energy. I go to sleepover camp every summer and participate in all the camp activities. I still have to go every day to the infirmary for my daily medication at camp, but my friends are always happy to come with me. I do get tired but I try my best to stay active when I can because when a flare-up happens, it takes a lot out of me.
When I look back to visiting my Mom in the hospital a few years ago, who spent many months living there, I remember how excited we both were when she finally left after her final surgery and was well enough to participate in our first Gutsy Walk. It was just a few weeks after her surgery. The Gutsy Walk brought a lot of meaning to me and my family and allowed my Mom and I to really bond and focus on our disease in a positive manner as we would be fundraising and bringing awareness to our friends and family. We laughed a lot getting ready for the walk and, while at our dinner table, my brother joked and came up with the name “This Bag Ain’t Prada” because my Mom was wearing an ostomy bag at the time and it was definitely NOT like a “Prada” bag, but her ileostomy actually saved her life and that was worth everything!! It was my job to design the logo for our t-shirt !!
A couple of years ago I felt I was ready to talk openly about my disease. After all, how can I help other people my age understand what it’s like to be me – and especially be a support for other people my age who actually have the same disease as me? So what I thought was I would invite some of my friends to join me at the Gutsy Walk, in 2014, to get them involved in the fun! We had a blast together at the walk and this tradition has continued on. In 2015, I was named Honorary Chair of Toronto’s Gutsy Walk and I made a speech at the Top Pledge Earner’s Brunch and at the Gutsy Walk – in front of all the walkers!! It was very exciting.
I am a big supporter of the Gutsy Walk because, not only does it represent a very important part of my life, I know the money we raise for Crohn’s and Ulcerative Colitis will help many people of all ages get help for the pain and suffering they are going through. I believe we are one day going to find a cure and that will be the biggest celebration of all!
I am living proof that a LIFE can be saved, quality of LIFE improved, and a new outlook on LIFE achieved.
I can only speak about Ulcerative Colitis (“UC”), knowing quite well how incredibly powerful and devious this disease can run. Diagnosed in 2002, just 5 months after having my daughter, Sloane, was the beginning of my dance with UC. Every meticulous thought was about how to accommodate my painful and uncontrollable bowel, avoid social gatherings, and cope with my new found anxiety. I could predict when the blood would appear in my stool – and when I saw it, the anxiety would escalate. I began taking daily medication to help control my symptoms which offered short reprieves from pain and diarrhea. I didn’t know any better and frankly never heard about this disease until I was diagnosed! I thought it was normal to be bleeding all the time - and so I did, took my 9-12 pills a day, steroid enemas, had the chills, felt exhausted, visited my beloved Gastroenterologist, and life carried on. I was Raquel with a disease.
Then my daughter Sloane got this disease, eight years later. Add worry and guilt to the list.
In the summer of 2011, I got hit with the true nature of this BEAST called UC. I had realized that my 9-10 years on medication was just a warm-up routine for the actual fight I had ahead of me.
The Tenth Year:
My story is long and extreme in terms of ongoing complications of the disease, and multiple surgeries, which landed me in Mount Sinai Hospital for a total of approximately 9 months between September 2011 and May 2013. This stretch of time brought such uncertainty when my health deteriorated rapidly. Hospitalized with failed IV Prednisone Therapy to treat uncontrollable and ongoing bleeding, my state of illness became an emergency situation as my colon was friable, full of infection, and necrotic (dead)- it needed to come out immediately. While my Gastroenterologist knew I was a difficult sell for any medication treatment – he was concerned I would not agree to surgery, that night he came to speak with me. However, something happens when a person is weak and numb, and desperate, knowing that death is touchable. Clarity shows up and simply put, I say to him, “I know I need this surgery – I know I’ve lost control here”, and he agreed. A Sub-total Colectomy would be my first major surgery and, as a result, I would have an ileostomy/stoma and wear an ostomy bag for 18 months following same.
While my first surgery was the lifesaver ABSOLUTELY, the unimaginable run of bad luck following this surgery brought serious concern which would not let up. I had 4 more major surgeries plus other painful procedures, full-time IV medication therapy, internal abscess & leak, internal/external drainage catheter through my backside for 4 months, Remicade infusions, major hair loss, severe muscle atrophy, C. Difficile, painful skin infections, and horrifying Pyoderma Gangrenosum which truly made me fear for my life, again. I recall having a continuum of uncertainty and fear every step of the way and experienced severe pain and suffering which came from such bizarre and rare complications. I still find myself shaking my head at the frightening moments I experienced and these extra-intestinal manifestations of UC made me feel helpless while this disease had its way with me. Besides worrying about how I would survive, I worried about everyone else around me, especially my husband and kids, and what I was putting them through. I was a full-time mess!
Today, I am a fully functional woman with a busy career in Real Estate. I have a J-pouch and I am grateful to have one. I have daily, haunting, memories and it’s reinforced when I look at my scars and disfigured skin...BUT again grateful. Has my UC gone away? NO WAY. I still cope with the yo-yo syndrome of well vs. sick but I can handle this side of the coin. Now I deal with Pouchitis (inflammation of my J-pouch) and occasional Blockages (warranting an NG tube down my nose/gastro tract) – trips to the hospital are still happening from time to time and the familiarity of my life at Mount Sinai Hospital is still very real! I pray my J-pouch is everlasting (my surgeon is the BEST), however, I don’t have that answer...it’s a hope and a wish.
Even though my mind and body will never be the same, to be able to share my story of then and now, and the journey our family is taking with this disease, – Ulcerative Colitis – is so important.
While walking with my 15-year old daughter, Sloane (2015 Honorary Chair, Toronto), also diagnosed with Ulcerative Colitis since the young age of 8, brings other emotions to the forefront of why the Gutsy Walk is such an important event for our family, I am also walking in loving memory of my wonderful Gastroenterologist, Dr. Gordon Greenberg, who sadly passed away in 2016, and always in my heart is Dr. Helen MacRae, my incredible surgeon, who saved my life more than once!
Please support us in our pursuit to find a CURE for Crohn’s and Ulcerative Colitis. Thank you in advance for your generosity.
THIS BAG AIN’T PRADA VIDEO HERE https://youtu.be/NfkYsywK5hs