Ok, we’re going to switch things up a little bit. This week (Dec. 1st-7th) is National Crohn’s Disease and Colitis Awareness Week, and besides sharing about ways you can help, we thought we’d get personal and tell Maria Lowe’s story. Maria actually works at PatientsLikeMe as part of our Health Data Integrity and Research Teams, and she’s been living with Crohn’s since she was just a kid in the 90s. Her father, David, was also diagnosed with Crohn’s back in 1980, but as you’ll read, it wasn’t an easy process for either of them.
David just visited all of us in the PatientsLikeMe office this past September, and both he and Maria shared their health journeys with the entire team so we could learn more about Crohn’s first-hand. And most recently, Maria took some time to jot down her experiences to share on the blog and help raise awareness this week. Check it out!
Can you tell the community a little about what you do at PatientsLikeMe?
I am a pharmacist, and at PatientsLikeMe, I am part of both our Health Data Integrity team and our Research team. My main role is to help provide some clinical perspective to the information in our medical database. When users of the site want to add any new information to their profile, if it’s not already in our database I will work with the user to learn more and see if we have a match (possibly with a different name), or I will help add it to the database. I also work on projects such as building new communities and get involved in some of the research work we do to offer up the perspective of a healthcare provider.
When did you experience your first symptoms of Crohn’s disease? What was the diagnosis process like?
I think I experienced my first symptoms when I was in the third grade, so I guess I was about 8 years old. All I remember was getting really intense stomachaches, and I would get them a lot. At that time, when my mom talked to my pediatrician, he just suggested that I might be lactose intolerant, so we went with that. I didn’t feel much more until 7th grade. At this point I started getting really bad stomachaches at the same time almost every day. We suspected it was something I was eating so I tried all kinds of things with changing my diet. I even gave up dairy for a whole year to see if that worked (no fun!), but it didn’t seem to change much. Finally, when I was in the 9th grade (about 14 years old by this point) I got so sick, with serious abdominal pain and fever, that my mom insisted that I be seen by a specialist. She and my father got me an appointment with my father’s gastroenterologist and he started to run some tests to see what was wrong. He didn’t think it was Crohn’s disease at first so he wanted to do some tests to rule out a lot of things first – most dealing with my female reproductive organs. Along the way I had several types of x-rays, an ultrasound, a barium test (that’s when you drink this liquid form of barium and get x-rays taken of your abdomen), and then ultimately a colonoscopy. Everything came out clear until my colonoscopy, which is what ultimately showed I had Crohn’s disease in my small intestine just before it connects to the large intestine.
Your dad also has Crohn’s disease – can you tell us a little about his experience? How has that helped you with your own journey?
My dad has had Crohn’s disease since he was about 19. He didn’t receive a diagnosis until much later in his life. As long as I’ve been alive, I’ve know that he had this condition but I learned that it took him a very long time for his doctors to figure out what was wrong with him. They never knew what to tell him and for a while he just kept getting sicker and sicker. Once they diagnosed him and started him on some real treatment, things got a little better for him. However, growing up I used to see him get sick a lot and I’ve seen him go in and out of the hospital for a number of surgeries. When I was little, this used to scare me because I would worry for him. Once my mom and dad suggested that I might also have Crohn’s, I knew that’s what it was. Getting diagnosed was scary, I was young and had just started high school, so it was a difficult adjustment for both my friends and me. But I knew I had my family to support me – my parents had been through this before and knew how to help make things better. I’m extremely lucky that they both saw the signs and symptoms and knew what it was so early. They were able to advocate for me and ensure I got the help I needed. To this day, knowing that my dad has been through this and can help provide guidance and support always makes things better. I will always call him before I call my doctors if something is wrong just to see if he has ever had the same issue I am having.
Do you have any special wisdom to share with the Crohn’s community?
I don’t know if this counts as wisdom or not, but I guess I have a couple pieces of advice for the Crohn’s community. First would be to just know that you aren’t alone. This disease is tough and it can be really embarrassing to talk about so knowing that you aren’t alone in this can be really helpful. There is still a lot out there that the doctors don’t know about what causes Crohn’s and the related complications. If you have Crohn’s and something doesn’t feel right – just keep speaking up and make sure you get the care you feel you need. It is important not to suffer in silence. Lastly, listen to your body. If it’s telling you that you’ve had enough, then it has. Sometimes that is the hardest part, just knowing when you need to give in and allow your body the time it needs to rest.