5 posts tagged “Crohn’s”

“Listen to your body” – PatientsLikeMe team member Maria shares her story for National Crohn’s and Colitis Awareness Week

Posted December 4th, 2013 by

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.

“I still haven’t given up hope.” An interview with psoriasis and psoriatic arthritis patient David

Posted May 23rd, 2013 by

Say ‘hi’ to David. Some of you may know him on PatientsLikeMe as db.09. He developed his first visible symptom of psoriasis at the very young age of 3. Now 22, he’s sharing his personal journey with this highly stigmatized autoimmune condition, along with psoriatic arthritis and Chron’s. See how his conditions have actually given him motivation and how connecting with others has positively impacted his life.

David Burns

Are you living with both psoriasis and psoriatic arthritis?
Yes, I am living with psoriasis, arthritis and also Crohn’s.

How old were you when you were first diagnosed? Have you had to deal with any stigma at such a young age?
I developed psoriasis at the age of 3, and 3 years later at the age of 6, I developed arthritis. I was experiencing symptoms of Crohn’s since the age of 11. However, I was only diagnosed with Crohn’s at the age of 17. I’m currently 22 years old. My childhood and teen years were very challenging. My conditions had a massive impact on my education. I missed much of school growing up, due to hospital appointments, and just generally suffering with the effects of living with the conditions. I think the worst was growing up with psoriasis, from a social perspective. It shattered my self-confidence and self-esteem. I haven’t had a girlfriend my entire life.

What impact has living with psoriatic arthritis had on your life?
Well, I’ve basically hit the inflammatory jackpot. The odds were so low that I was destined to develop psoriasis, and from that arthritis, and following that, Crohn’s. Over the past few years, I’ve been on 4 different biologics, each failing to provide me with the promised relief that I crave so badly. I’ve tried many different systemic, biologic, and topical treatments over the years, all without any avail. I’ve been through hell and back and I’ve come out smiling.

About three years ago, my psoriasis and arthritis flared up so badly that I was a prisoner to my bed. I had to pull myself along the floor to even get to the toilet, my arthritis was that bad. I was put on extremely high doses of steroids. I put on a lot of weight due to the steroids and eating tons of junk food, and fell into a deep depression. I lost friends and had to drop out of school because I missed so much. As my conditions started to improve, I couldn’t stop myself from looking in the mirror and recognizing what I’ve just been through. I’d developed extremely strong mental strength. I’d reached the lowest point of my life and come out stronger than ever.

I used that strength to motivate myself to lose the weight I’d gained. I was weighing in at 118kg (260.14lbs). I took up interval training and weight lifting. There were days that my arthritis and psoriasis were so bad, but I used the mental strength I obtained and pushed myself as far as I could. The days that I was feeling the worst I’d make sure I trained double as hard. I started eating clean and I lost 40kg (88.18lbs), as well as gaining muscle. I’ve now taken up bodybuilding. My goal is to prove that anything is possible and to never let your health get in the way of your dreams. I still train 6 days a week. I use my previous and current pain as motivation to push me that extra step. So in some aspects, I’m grateful to have had the opportunity to develop this outlook on life, as I can apply it to every other aspect of my life. I started up my own IT company and I’ve been working really hard to develop it. I’m currently 85-90% covered with psoriasis, and I’ve been using crutches to walk around for the past couple of weeks. I still haven’t given up hope yet.

What’s it been like to connect with other psoriasis and psoriatic arthritis patients on PatientsLikeMe?
It’s been an enriching experience connecting with psoriasis and psoriatic arthritis patients on PatientsLikeMe. I’ve formed friendships that will last a long time. It’s very rare that you find people that share the same pain that you get from suffering with psoriasis and/or arthritis. It’s a great feeling being able to connect with people on an emotional level and really feel that they know what you’re going through, and that they really do understand. My friends and family try to understand what I go through, but they just can’t relate, as they’ve never experienced it for themselves. PatientsLikeMe takes away the “imagination” factor that my friends and family can only provide me with, when they say, “I can only imagine what you’re going through.”

What is one bit of info that no psoriasis or psoriatic arthritis patient should be without?
Every psoriasis and psoriatic arthritis patient needs to know that there is someone out there that is going through exactly what you’re going through. They should know that you’re not alone in this fight. There may be times when you’re cornered, with your back against the wall, but you’ll make it through with strength and hope. It’s not an easy feat by any means. However, life would be boring without a challenge. Try and find someone on PatientsLikeMe that understands what you’re going through. It helps, trust me. It’s a good feeling to know you can fight against your disease with someone else at the same time. They should also keep in mind that there is treatment that will help out there. You just need to be patient enough to find it. I’ve tried 4 biologics, without relief, but I still haven’t given up hope.