Thank you for reading my story. 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, had the chills, felt exhausted, visited my 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.
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 suddenly deteriorated at a rapid pace. 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 doctor knew I was a difficult sell for medication treatment – he was concerned I would not agree to the surgery that night he came to speak with me in my hospital room. However, something happens when a person is weak and numb, and desperate, knowing that death is touchable. Looking at the faces around me of my husband, Alan, my Mom and Dad, and my doctor, it was very clear that my pending decision needed to be made quickly. I looked in his eye and said, “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 life saver, 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 required injection therapy to the site and daily dressing changes. 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 was helpless while this disease had its way with me. Besides me, I worried about everyone else around me and what I was putting them through.
To this day, I wear my scarred disfigured skin across my stomach which was left from the painful pyoderma gangrenosum and the many surgeries. These scars are a permanent reminder of the battle I fought. It is also a reminder of how grateful I am for Mount Sinai Hospital, my brilliant doctors, my family and friends, and the daily blessings I have now.
Today, I am a fully functional woman. I have a JPouch. Has my colitis 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 JPouch), adhesions which has caused concerning blockages (warranting an NG tube down my nose/gastro tract), and now agonize over limited food choices due to my issues. Trips to the emerge are still happening from time-to-time, and the familiarity of my life at Mount Sinai Hospital is still current. I pray my JPouch 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 and the journey our family is taking with this disease – Ulcerative Colitis – is so important.
Thank you in advance for your generous donation and support in our pursuit to find a CURE for Crohn's and Ulcerative Colitis. Xo Raquel
My name is Sloane Feldberg and I am almost 17 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 experienced terrible stomach pain 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 I had.
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. I have slept over in the hospital with an IV in my arm and this is no fun. 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. There have been years when I have had to miss days of school because of UC – but my teachers and friends have always tried to support me and make sure I am kept up-to-date with my school work.
I don’t want you to think that it’s all bad because I still try to do everything I love. I play hockey and have lots of energy to be crazy and go out with my friends. I have gone to sleepover camp every summer since the time I was diagnosed and now will be a counsellor. My camp has always been a great support to me.
When I look back to visiting my Mom in the hospital, 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, just a few weeks after her surgery. 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!! It was my job to design the logo for our t-shirt because creativity is my thing :) 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, family, and my classmates.
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 walk with me at the Gutsy Walk and this tradition has continued every year. I love my friends so much! A few years ago, I was named Honorary Chair of Toronto's Gutsy Walk and I spoke in front of all the participants while my friends and family cheered me on.
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!
Thanks for supporting me. Sloane