My name is Aly,
I was diagnosed with Ulcerative Colitis when I was just 13 years old, and struggled with my health throughout my high school years well into my twenties. I am no stranger to hospitals at this point, having become too familiar after years and years of admissions. I have had over 20 blood transfusions, weekly iron infusions and have been on oral medication since diagnosis. In my mid-twenties, I was put on a drug that seemed to kick my symptoms. With the exception of a few minor flare-ups, for the last 7-8 years I have been living what I felt was my BEST LIFE for the first time since I could remember. I praised not only the meds, but also being in such a stable and loving relationship with my now husband. We got married back in 2014, and were blessed with twin boys in 2016. I had a wonderful pregnancy with zero complications and carried to just about full-term. Though in many cases, Ulcerative Colitis can make having children difficult and pregnancy more challenging, I was lucky enough not to experience either situation.
It wasn't until a year and a half later that I truly acknowledged that my gut wasn't happy. Though I wasn't experiencing daily pain, the bloat and swollen abdomen was confusing. I was not getting any of my go-to symptoms and therefore, I chalked it up to a completely different medical ailment. I scheduled a routine colonoscopy (I have had one every 1-2 years since I can remember). The results were confusing. I had a major stricture in my colon blocking passage of multiple camera scopes. The inflammation and scar tissue build-up was severe and led my doctor to immediately discuss the potential for surgery down the road. My husband and I were discussing expanding our family and the news of colon surgery took me by complete surprise. I had felt healthy and strong for so long; still did. How could this be? The literal day after I had my post procedure conversation with my doctor, the pain I experienced from then on was excruciating; blinding pain so intense I thought I would pass out.
The following weeks and months consisted of multiple CT Scans, MRIs and X-rays to confirm that I was not experiencing an actual colon obstruction. I was then hospitalized for one week on complete gut rest, antibiotics for an abscess in my abdomen, followed by TPN (Total Parenteral Nutrition) at home; nothing by mouth outside of clear liquids for 3 months. Surgery was seriously discussed and confirmed for late January. I just had to make it through the holidays with no food or drinks; easy enough. Little did I know the universe had a completely different plan for me. Mid-December, my symptoms came back. I was unable to walk upright, super lethargic, achy and cramping. After another set of scans, it was concluded that it was unsafe for me to wait any longer, and an emergency total colectomy was recommended. The emergency piece plays heavily into this plan, as it changed not only the date of my previously planned operation, but also the surgeon. My husband and I agreed it was the right thing to do and we jumped. After spending the night in the ER, we were introduced to the on-call surgeon for the weekend, Dr. Samana Zulu. My instantaneous connection with him made me immediately feel at ease that we had made the right decision. After promising us that he would do everything he could to be the one performing surgery, we met with his partner, Dr. Ni. Again, the chemistry was immediate. I was admitted and scheduled for surgery a few days later, and I was fortunate enough to have both amazing surgeons handle my case in the operating room.
The goal of the surgery was to remove the infected colon, put a temporary ileostomy bag in place, and wait to heal for a re-connect in a few months. In addition, we were awaiting pathology to conclude whether I was a true Ulcerative Colitis case, or perhaps there was a chance I could also have Crohn's.
Not for a moment did I think or prepare myself for them to find what they found. I have been diagnosed with two different types of cancers; colon and appendiceal cancers. Furthermore, the appendix had perforated causing the cancer to spread to my abdominal wall and lymph nodes.
When I awoke from the surgery and the doctors told me what they had found, the first words out of my mouth were "Well this isn't going to fucking kill me so what do we do now"? And that is exactly where we are now. Here's what we do now: I am working with an amazing team of doctors from Kaiser to University of Maryland and Duke University. I start 6 months of chemo treatment this month and I will have an additional surgery of the abdomen called the HIPEC (Hyperthermic intraperitoneal chemotherapy) for additional concentration of the infected area. I have undergone genetic testing to conclude why a woman of my age would contract such a rare cancer like appendiceal; could it be genetics, my genes or simply from years of inflammation?
I have THE strongest support system, the MOST loving friends, family and community and personally feel like I have the strength of a thousand horses to take this life experience on. Would I have chosen this? Obviously not, but for some reason, it chose me. It's not a fight I'm losing, it's just going to be a hard one requiring lots of focus, dedication, nutrition and rest. The love I receive, the prayers I have felt and the overwhelming sense of energy in my life will continue to guide me forward and out into a cancer-free future. We truly appreciate the outpouring of concerns and well wishes. Please continue to follow my progress through weekly journal posts, uploaded pictures and videos and consider visiting the Task Calendar to see how you can lend a helping hand.
All of my love,
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