Serena’s Autoimmune Story

MEET SERENA

My name is Serena Sinos, I am 25 years old & I live in Central Florida. I graduated from college 4 years ago and now work as an insurance underwriter. I love my workplace & what I do for a living! Outside of work I enjoy exercising, mostly doing group fitness classes at a local women-only studio. About 9 months ago I got certified to teach indoor Spin classes and now teach my own classes at the same studio! The community that group fitness classes bring is my favorite part. I love to read (both fiction & non-fiction), hangout with my rescue dog, watch documentaries, go to the beach & a good iced latte.

 DIAGNOSIS

I was diagnosed with Crohn’s Disease in January 2016, during my last semester of college. I was 21 years old. I had been having GI issues (noticeably) for about 6 months before I got extremely ill one night & was rushed to the ER as I thought the pain I was having was my appendix. The doctors did a CT scan which showed a blockage in my small intestine. The next morning I got a colonoscopy where they biopsied the inflammation causing the blockage which confirmed the diagnosis. I was immediately put on Prednisone (heavy steroids) which kept the Crohn’s tolerable until I got through graduation. After I weaned off the steroids I immediately went onto Humira. Eating caused a lot of my pain so I stopped eating. I lost 30 pounds in 6 weeks. I was only on Humira for 3 months with no relief before the inflammation got so bad that surgery was the only option. I had a small bowel resection where they removed 8 inches of my bowel in August 2019, only 7 months after I was diagnosed. Recovery from surgery was extremely rough as I developed an abscess on the incision site which had to be surgically removed & drained. I also received an epidural pre-surgery for pain relief (in lieu of narcotics) that was placed in the wrong area, so I was receiving no pain medicine for the first 24 hours after surgery until the doctors figured out why my pain was intolerable. After recovering from that surgery, I felt okay for another month or so until my symptoms returned.

I was having severe pain, bloating, heartburn, nausea, vomiting, and constipation. This was so disheartening as I was told I would be symptom & therefore pain free after the surgery was completed. I went through another year of hardship, so much pain, so many different medicines, treatments, tests, procedures, naturopathic healing, etc. The doctors came to the conclusion that my colon was not working properly from the Crohn’s inflammation. I also had my mental sanity questioned by my surgeon who thought I was making up the pain I was having. Instead of approving me for another surgery, he wanted me to see a psychologist. He didn’t know that I was already seeing a psychologist as my anxiety around hospitals, pain, and tests had gotten so bad I was barely functioning. After proving this to him and after the multiple tests showed the issues with my colon, I had a second surgery in August 2017 (almost a year to the day from my first) where my colon was removed. They resected my small bowel to my rectum so I did not have to have a colectomy bag. This was such a huge blessing. The post-op of this surgery went better than the first and I recovered. Since then, I have been symptom free. I still struggle with some other issues caused by the Crohn’s, including severe anemia (I have had a couple of blood transfusions), irregularities with my menstrual cycle, and anxiety. I am also on Mercaptapurine (an immunosuppressant) which causes me to lose large chunks of my hair. I have had 3 scopes since my last surgery, the first 2 came back with an “all clear” but the most recent one I had in November 2019 showed a new spot of Crohn’s inflammation. This is discouraging of course but I have been asymptomatic thus far & hope my healthy lifestyle and maintenance medicines will keep me that way!

 LIFE CHANGE

My Crohn’s disease completely flipped my life upside down. Getting diagnosed with a chronic autoimmune illness with no cure was not what I envisioned happening my last semester of college and starting my adult life with. I have completely changed my lifestyle, including what I eat, drink, and my activity level to try and get my body as healthy as I have control over. I believe fueling my body with good foods and getting enough exercise (even when it is tough) is good for my mental & physical health. I struggled with anxiety throughout my childhood and it was tolerable during my high school and college years but my journey with Crohn’s and my surgeries caused it to get intolerable and required me to be on anti-anxiety medicine and talk to a therapist about my struggles. I learned that I need to also be my biggest advocate when it comes to my health.

 HEALING

For me personally, heating a healthy, vegetarian diet has helped alleviate a lot of my GI issues. Pre-surgery, however, I ate a very plain and bland diet. Now that I am in remission I am able to branch out more with my food options but I still make sure I am eating healthy & getting all of the vitamins/nutrients my body needs. On a mental aspect, I have learned that rest is so important & something I was not doing (and still struggle to do) enough of. One of the best methods of healing for me has been surrounding myself with amazing family & friends who understand what I am going through & are there to help me!

 STRUGGLE

I still struggle with a lot of things when it comes to my autoimmune illness. It’s hard to be an advocate for yourself at the doctor’s office when there is a lot of confusing information and unknowns. I struggle with knowing there is no cure for what I have. I struggle with the possibility of having a tough pregnancy because of my Crohn’s or the possibility I could pass this down to my kid(s). I struggle with being a “burden” as I sometimes see myself when I need more rest than others when on vacation, when my diet is stricter & therefore harder to find somewhere to go out to eat on a Friday night, when I need more bathroom breaks than others when I’m spending the day at a theme park or during a road trip. Of course there is the financial burden as well. There are so many hospital bills & prescription costs that come along with an autoimmune disease that seem so unfair.

INSPIRATION

“I am not what happened to me. I am who I chose to become” – Carl Jung

This quote is so important to me because it reminds me that I am more than my Crohn’s disease and I am more than the experiences that have happened to me. Having Crohn’s disease is just a small part of who I am and does not take away from any other parts of me. I get to chose my life and my experiences and having Crohn’s does not have to and does not get to overshadow everything else.

Find Serena | @serenasinos