Emily, Brave Mother Living With Crohn’s Disease, Shares Her Story
As the world’s leading medication management platform, Medisafe is joining millions of others this Thursday (May 19) on World IBD Day in support of those living with Inflammatory Bowel Disease, a condition that afflicts more than 5 million people, including 1.4 million Americans. Here is the story of Emily, an incredible user living with this condition:
“I have always tried to be an organized person. I lived a hectic and busy life. Working full time and having 5 kids, I needed to always stay one step in front in order for my life to work smoothly.
I was first diagnosed with Crohn’s Disease when I was 22. I had a pretty hard 5 years with this awful disease. I had multiple hospital admissions and many life changing surgeries. But for 14 years I lived symptom free in remission. I lived my life as if I didn’t have Crohn’s. But I knew this monster will one day awaken and I will need to deal with this life changing disease again.
Late in 2015 I started feeling the signs again. I was overcome with abnormal tiredness and constant diarrhoea throughout the day. I started getting stomach pains that were becoming hard to ignore. I tried not to think about it, but soon I was taking days off from work to recover. Those one or two days started to become a week. I knew I could no longer ignore it when I couldn’t wear jeans anymore because it would hurt my stomach to much.
I was immediately admitted into hospital where they found small perforations in my bowel and 30cms affected by crohn’s. I knew I could no longer ignore the fact that the crohn’s was back and my life was about to change. That first hospital admission became one of many over the next few months. I had to take an unpaid sick leave from my job, and my family now had to look after me, instead of me looking after them. I immediately went from being on no medication to over 20 tablets a day. I felt like my whole life was out of control, and for someone who had so much control, it was all taken away in an instant.
I struggled everyday to keep up with taking all my new medications. There were some days I couldn’t remember what to take and when. The medications I was on affected my memory and I had terrible ‘brain fog’. Some days I would be so tired from being up all night from pain, I’d sleep all day and not take my medications. This wasn’t helping me or helping to get this crohn’s flare under control. I started looking up app’s that would help me keep track of all my meds. This is when I found Medisafe. I downloaded and put in all my medications. I set my alarms so I wouldn’t forget anything.
I discovered I could record my moods and side effects also. This was so useful for me to keep track on my feelings, as a lot of the medications would make me feel anxious and down. I could also see that when I was feeling the most pain, that was when I felt the most anxious and control my feelings more.
I started having a lot of bad side effects from the new medications. Things were not improving like I hoped and I could barely function. I would spend all day in bed in constant pain, not only in my stomach, but every single joint in my body felt like it was on fire. I started looking at different diets and lifestyles to help with the symptoms of my disease. I started incorporating lots of different supplements. I added every single one of these to the Medisafe app.
My last hospital admission I saw so many different doctors. I was so grateful I was able to take out my phone and show them exactly what I was taking. I was able to read back through my diary entries and tell them everything I had been experiencing. I felt like I had control back.
Living with any chronic illness people will tell you it’s the little things that make life easier that mean the most. Medisafe has been one of these things that have made such a difference in my recovery.
I will always have Crohn’s disease. There is no cure, but I know that each day I am fighting to get back into remission and live a normal life again.
Thank you Medisafe for coming along on my journey to become well again.
Know someone living with IBD or Crohn’s? Please download and share this link to our custom Medisafe app version filled with IBD measurements, updates and featuring the special IBD World Day purple color. Free download here.
Originally published at www.medisafe.com on May 17, 2016.