Meet Our 2022 Pittsburgh Take Steps Honored Heroes
Pediatric Honored Hero
Hello, my name is Morgan Sandzimier, and in October of 2015, I was diagnosed with Crohn’s Disease. My journey leading up to and then eventually being diagnosed with Crohn’s was not an easy one for a 12-year-old girl to face. It was filled with many doctor and specialist appointments, hospitalizations, emergency room visits, blood work, testing, colonoscopies and endoscopies, medication reactions and side effects, missing school, and activities, and the most difficult was my 6th grade friends and classmates not understanding my sickness. It wasn’t easy to explain to my classmates that even though I didn’t always look sick, that didn’t mean that I wasn’t sick, and that my appearance didn’t always mimic how I felt. I’ve dealt with this throughout junior high and high school. However, I learned that with my incredible and dedicated support system including my family, friends, doctors, nurses, social workers, and my teachers, I could overcome anything, and after two years of receiving IV infusions of a medication every 8-9 weeks my doctor had declared that my disease was in remission! Although I must continue to fight and receive continued IV infusions every nine weeks to keep my disease in remission, I am ultimately thankful for what this journey has taught me.
I have been fortunate enough through this experience to be involved with the Crohn’s and Colitis Foundation Take Steps and am honored to be named the 2022 Crohn’s and Colitis Foundation Pittsburgh “Pediatric Honored Hero.” Since being diagnosed with IBD my family and I became involved with The Crohn’s and Colitis Foundation Take Steps fundraising events. This organization taught me the importance of raising funds and awareness to find a cure. I formed my team, “Team Morgan”, and got to work enlisting my friends and family in my mission to support this very important foundation. I am looking forward to my next endeavor with the Crohn’s and Colitis Foundation as their 2022 “Pittsburgh Pediatric Honored Hero.”
Adult Honored Hero
I was diagnosed with Crohn’s disease over 10 years ago and it took quite some time to figure out what was going on with my health. My symptoms came on so quickly which resulted in a trip to the ER, but little did I know that trip would turn into over a month spent in the hospital. It took many tests, procedures, and doctors to finally figure out what my diagnosis was. When I went to the ER, the doctors first thought it was my appendix, so the following day I had surgery to have it removed. A couple days after surgery I had no relief and was still in so much pain, losing a lot of blood when going to the bathroom, nausea, vomiting, fever, and feeling really fatigued. That is when the doctors started to schedule other tests to try to determine my issue. Finally, after a colonoscopy, it showed my large intestine was severely inflamed, showing bleeding, and multiple ulcers. I was placed on many different medications, IV treatments, blood transfusions, to try to help improve my symptoms but unfortunately nothing was working, and I was quickly getting worse by the day. My doctors decided it would be best to proceed with a colectomy, removing the diseased part of my colon and placing a temporary ileostomy to allow time for the colon to heal.
It was such a hard recovery and learning to take care of an ileostomy. I was scared, anxious, depressed, fatigued, and had major self-image issues. I even had to quit my job to focus on my health and recovery. I was scared that I was wasn’t going to be healthy enough for my wedding day. I remember being in the hospital doing a lot of my planning and sending out save the dates, which is not your typical dream wedding planning. I’ll never forget the day I went to get fitted for my wedding dress with my ileostomy, worried about being judged by the women working at the store but I kept thinking that I was blessed to be on the road to recovery. Just 4 months before my wedding, I had my follow up appointment and my doctors and surgeons said I could have my ileostomy reversed. I was thankful and hopeful that my health has improved, and I would be healthy and in remission for my wedding day.
A year later, I started to have symptoms again of pain, nausea, vomiting, and bleeding. I was in the hospital again, placed on medications and had tests completed to show the rest of my colon was severely inflamed. I was placed on Humira and steroids at that time to see if it would help but once again unfortunately it did not help. I then thought it would be best to take a medical withdrawal from nursing school. My surgeons and doctors decided after many opinions that I basically had no choice but to have the rest of my colon removed with a permanent ileostomy placed, as this disease was causing life-threatening complications.
From recovering from major surgery and learning once again to live with and take care of my ileostomy, I was physically, mentally, and emotionally exhausted. As time went on, I was getting used to living with an ileostomy, but I once again became sick. I ended up in the hospital again, to find that I would need to have a proctectomy, having my rectum and anus removed.
My Crohn’s disease caused many other issues being on long term steroid treatment. It caused Avascular Necrosis in both of my ankles, and I had to have my left ankle fused, and core decompression surgery in my right ankle. I then had to adjust living my life differently again by giving up playing sports, which was one of my favorite things to do. This disease also caused issues for me getting pregnant, which my husband and I still hope for a miracle one day to become parents.
It has taking me years to build up courage to share my story and some of my closest friends may not even know I live life daily with an ileostomy. I have now had my ileostomy for the past 8 years. But I am no longer ashamed or scared as I am blessed to say these surgeries and my ileostomy saved my life. I am so lucky to have a huge support system. My husband, family and friends have shown me how much I am loved, and they have been there for me every step of the way. Some days are harder than others, still feeling fatigued, depressed, anxious, insecure, and many other things but I try to stay strong and positive. I must thank all the wonderful nurses, doctors, and surgeons that have been and continue to be involved in my care throughout the years. You are all amazing at what you do, and I am truly thankful for your dedication and compassion.
I am so honored to be selected as Pittsburgh’s 2022 Adult Honored Hero. I have been involved with the Crohn’s and Colitis Foundation since 2016. I was incredibly grateful when I first heard about Take Steps and the Crohn’s and Colitis Foundation, as this community made me see that we are in this fight together. Patients, friends, and families all come together to educate each other, inspire one another, and to fight for a cure. I look forward to the Take Steps walk each year, and as it continues to grow it means that we are one step closer to finding a cure. To all of those out there with IBD, continue to fight, never give up, and always remember we are in this fight together.
Allegheny Health Network
Honored Healthcare Provider
The AHN Center for Inflammatory Bowel Disease:
Along with compassion and empathy, understanding the needs of patients comes at the heart of all medical care. This is particularly emphasized when the medical condition carries a chronic impact on multiple aspects of patients’ lives. In that spirit, the AHN Center for Inflammatory Bowel Disease was molded by gastrointestinal specialists who dedicate their practice to the complex Inflammatory Bowel Disease (IBD) manifestations, the coexistence of other autoimmune diseases, and the concerns of specific groups of patients such as adolescents, women, college students, and post-surgical patients. The AHN Center for Inflammatory Bowel Disease provides state of the art diagnostic and therapeutic care for patients of all adult ages living with IBD.
We are committed to a team-based approach to provide tailored care for individual patients. Experts in multiple disciplines communicate and share the care plan to allow for optimal patient education and excellence of services. The experts include gastroenterologists, colorectal surgeons, specialized nursing staff, dieticians, clinical psychologists, and social workers. We aim at facilitating care for complex conditions. Here are a few of the highlighted services that make the AHN Center for Inflammatory Bowel Disease especially helpful for patients who had a complicated journey with their disease:
- When indicated, patients have easy access to rarely available IBD-specific therapeutic endoscopic procedures which aim at preventing major surgical interventions.
- The IBD women’s health clinic connects female patients with subspecialists in high-risk obstetrics and urogynecology to address aspects of pregnancy, pelvic and sexual function.
- Also, the Autoimmunity Institute provides a unique approach to patients with multiple autoimmune diseases that may affect other organ systems and can coexist with IBD.
- In addition to common medications ordered through specialty pharmacies, we offer access to promising clinical trials that could provide new treatments. These treatments are otherwise inaccessible through the current pharmaceutical market.
- We facilitate access and scheduling in different available locations to avoid delays in care which is a major deterrent for many patients.
- We hold a yearly regional educational IBD summit where world experts in IBD who set the guidelines of care present the latest updates in the science of IBD. These educational activities are often open to patient attendance.
Our friendly team and staff are proud to be supporting the needs of the region as we continue to care for over six thousand patients with Inflammatory Bowel Disease. We look forward to our patients’ days of disease remission and we aim to get them there swiftly and seamlessly.