Crohn's Disease and Ulcerative Collitis - “Find Friends Like You”

Hi Shay, 

Thank you for agreeing to tell your story to the Carenity . 

First of all, could you tell us more about yourself ?  

I’m Shay, I’m a 25 year old from New England! I’m an only child, as is my husband, so we’re also completely best friends. We have six cats together and will be married two years this July! I love spending time with him, playing video games, reading and writing and so much more! 

Could you tell us about your chronic illness(es)? When you first noticed symptoms? How did you and/or your parents react? 

I have a couple chronic illnesses now, but the first one to appear was Ulcerative Colitis. I was having extreme gastrointestinal symptoms but was too nervous to tell a doctor, so I waited a couple months until I had a physical exam with my primary doctor. I went from being a very healthy, active kid- to being told my large intestine was falling apart which could be detrimental. To say it was heavy on both my parents and I would be an understatement, I’m their only baby so it caused a lot of stress between the three of us. 

How long did it take to be diagnosed? How many doctors did you see? What tests did you have to take? 

It took about five months from my original primary care appointment to get diagnosed. I saw my normal physician, and then two gastrointestinal doctors before finding the third one, which is who I stuck with. I had lots of blood tests for everything, routine colonoscopies were my new normal, and I had a lot of time with X-rays and CAT scans.   

How did you feel when you were diagnosed? Were you expecting it? Did you understand what was happening to you? Were you able to receive all the information you needed to understand the disease?  

I was not expecting it in the least. It felt like my whole world turned upside down. My symptoms came fast and hard so it was a huge life adjustment becoming so debilitated. I understood what was happening to me as best as I could, and even pushed for all options they could possibly give me to help aid and put the disease into remission. I was very aware from the beginning that an ileostomy bag was a potential but I wanted to try everything I could before that. 

What is your current health management regime? What do you think about it? What are your treatments? Are you satisfied with them? 

Currently I have to keep up with a lot of specialists to maintain the best health I can. I have two gastrointestinal doctors, in two opposite directions, because unfortunately my case got worse after the UC diagnosis, so having back up eyes is important now. A lot of the times I get overwhelmed because it is a lot. It’s a lot to keep up with, remember and make sure I’m doing the right things. At the moment a lot of my treatments revolve around twice a month infusions and blood work before and after those. I’m also on the most medications currently than I ever have before. I wouldn’t say I’m satisfied because my goal was to get to a place where I didn’t need to see any more doctors, but I’m satisfied that I know I’m keeping myself alive by doing all of this. 

What is or has been the impact of conditions on your schooling, professional or social life? What do you think is the most bothersome part of your daily life?  

When I was first diagnosed I was barely fifteen and had just finished my freshman year. I barely had a school life. Between admissions, surgeries and random emergency room visits I missed a lot of my high school career. It really introverted me. I didn’t feel comfortable enough opening up, and I spent more time alone in a hospital bed than being with friends. It really affected my social anxiety and how I present myself to others. 

You talk about your medical story on social networks. What prompted you to do so? What messages do you want to convey to your followers? And what is their feedback? 

When I first got diagnosed, I was so selective with who I told and opened up to. I had so many embarrassing moments of almost being ‘caught’ with pooping issues or a poop bag, I really thought my life would be over if anyone knew. Then, after it was reversed, a couple years after my small intestine started to fall ill with Crohn’s disease. I was immediately told that having another ileostomy bag was likely and it struck me- I didn’t feel comfortable opening up years prior because I didn’t see any representation of IBD or ostomy bags- what if I start doing it myself? For others who felt the way I felt, and for the younger version of myself who really needed to see she wasn’t alone. It came natural afterwards to post about it and inform, and once my ileostomy was deemed to be permanent, I knew I had to keep going with my advocacy online, for others who felt like I did. 

What advice could you give to Carenity members also living with chronic illnesses?  

Find friends like you. Online is an ever ending source of information and we all deserve to see it, share it and feel less alone. A lot of people would never know about chronic illnesses or disabilities if we didn’t choose to post about it. I’m not saying every person needs to or should share their story, but I promise reaching out and finding a friend, even online, with the same ailments as you can help you feel less alone and that is so important.