IBD Interview: Jana Owlf
In honor of IBD Awareness Month, we’ll be interviewing members of the online IBD community, sharing their stories, and helping to raise awareness and understanding about Crohn’s disease and ulcerative colitis. Today’s interview is with Jana Owlf who blogs at Jana Owlf Designs.
What is your name and your diagnosis? How long have you been dealing with IBD?
My name is Jana Rosenberger and I was diagnosed with Crohn’s disease in the summer of 2015. My doctor believes I may have had active disease for about 2 to 3 years prior to my diagnosis though. And looking back, it actually makes perfect sense. A lot of little things add up in my mind now as signs or symptoms of having an underlying illness. For example–unexplained rashes, joint pain, ridiculous levels of anxiety and stress, feeling over tired or burnt out all the time, and of course later it progressed to much more serious symptoms that lead my diagnosis.
What do you wish you knew when you were diagnosed with IBD?
Actually when I was first diagnosed, it came as a bit of a relief. I finally had a name to put to what was going on with me! It was a real, tangible thing for me now and I knew wasn’t just going crazy! I was somewhat relieved to hear I had an illness that needed to be treated! However, I do wish that I had known what a change it would be to my life. I didn’t realize having Crohn’s disease would mean changing my lifestyle and putting my health first in almost every decision. I did not see that coming. I thought I would be able to go on living the same way I had before, but that was not the case. I had to find my “new normal”. New eating habits, managing prescriptions, doctors visits, schedule testing, insurance company disputes! It felt like a full time job there for a while before I adjusted to my new normal. I think if I’d known it would mean such a change back then, I would have been kinder to myself and understood that it was okay to put my needs first before others. Maybe I wouldn’t have felt as guilty when I had to call off sick for work!
What do you wish others knew about IBD?
I wish others understood the impact Crohn’s disease has on our emotional health as well as our physical health. And when I say others, I mean people that don’t have a chronic illness. It is completely life changing to be diagnosed with something that sticks with you for the rest of your life, never going away. It can lead to anxiety, depression, and you just don’t feel like yourself because of the toll the disease takes on your body and mind. People don’t seem to understand that there isn’t a cure yet for IBD and that means as patients we are constantly seeking out a better quality of life, as our bodies fight us every step of the way. Instead, others think that since there are treatments available, that somehow lessens the seriousness of the disease. That is not the case at all. It’s not quite so simple! Treatments don’t take all the symptoms away. I am technically in remission right now, meaning my inflammation is stable, but I experience fatigue, joint pain and abdominal pain almost every single day. And each treatment has its own interesting side effects that get thrown into the mix as well. Treatments that may work now, won’t always work later on in life as our bodies adjust to them and not every medication works for each patient. So, I’d love for the general public to have a more serious understanding of what it means to have this disease.
Why did you get involved in the online IBD community? How has the community changed your life?
I was getting to a place where I felt like a buzzkill when talking about my life to my friends and family because well… it revolves a lot around this disease. There is nothing worse than feeling alone around the ones you love. Friends and family are an amazing support, don’t get me wrong, but they just can’t understand everything about Crohn’s life. It’s not their fault! There are just some things in life that you have to experience yourself to truly understand them. And living with IBD is definitely one of those things. I got involved in the online community because I really felt like I needed to connect with others going through the same thing as me, so I sought out support! It is an amazing feeling to read someone else’s story and hear about their experiences with Crohn’s because then you know you aren’t alone! To see that someone else is going through a similar journey to yours, you just know that it will be okay! It’s reassuring! And honestly getting involved in the online community will help you feel more sane! Ha ha ha! At least it did for me. Sometimes healthy people can make you feel like you are crazy or just need to take probiotics to get better! Ha ha ha! They just can’t understand. The community has made me feel so much more confident on my path by validating my own experiences with this disease! Also, the education you can get from the community is wonderful! It has helped me to have a more proactive role in my healthcare! I will write down any questions that come up in my research and bring them to my doctor or gastro nurse for their input! In the long run, being more proactive has improved my treatment and my knowledge about IBD.
What advice do you have for the newly diagnosed/those who are struggling?
My advice is to find one thing that makes you SO HAPPY and focus on it! Keep your minds focus on something positive so you don’t get weighed down by the struggles. This is something that has really worked for me personally! Keeping a positive outlook can really make a difference along your journey! I talk a lot about this on my blog because I really believe your mindset is a powerful tool! It can be great to have a creative outlet too! Just make sure you put your health first. We live in a world that expects way too much of us. Take the time out now to care for yourself physically and emotionally. You are doing the best you can so be kind to yourself! Don’t be afraid to seek professional help either. It is only human to have a rollercoaster of feelings when you are managing an illness like this. Do what you have to do to in order to take care of yourself and get through the tough times. I was really embarrassed at the beginning of my journey and didn’t want anyone to know I had Crohn’s. I was ashamed I had to see a psychologist to help me through it and afraid people would judge me. Forget about others and focus on whats best for you!
Jana is a Crohn’s lifestyle blogger and advocate for women with Crohn’s disease. Shortly after her diagnosis in 2015, Jana realized that her lifestyle needed to change in order to make room for the demands of her new illness. She noticed that her life quickly became about existing and her enjoyment in life was greatly diminished by overriding sick days. That is when she discovered a simple switch in mindset was her key to coping with the life changes and struggles along the way. Now, she shares her personal experiences living with Crohn’s disease to help fellow sufferers reconnect with enjoying life instead of focusing on all things medical. Her blog, Jana Owlf Designs, talks about life with Crohn’s disease in a very real way but incorporates an element of silliness for good measure!