Breakfast After Dark 2020

My Crohn's Disease Journey: 

I was diagnosed with Crohn's in 2001. Living with this disease for 19 years has created challenges and presented me with daily ways I have had to learn to adapt. Throughout my journey I have taken multiple different medications and supplements; Meslamine (Asacol, Pentasa), Mercaptopurine (6MP), Budesinide (low-release steroid), Flagyll (antibiotic), Cyancobalimin shots (Vitamin B12), Ciproflaxin (antibiotic), Humira shots (biologic), Prednisone (steroid), Entyvio infusions (biologic), Iron tablets (stave off anemia), and Turmeric tablets (anti-inflammatory). Some of these meds are taken for short periods of time to control an abscess in my intestines like the antibiotics. I've had 3 abscesses in total over the years. Others are taken multiple times a day, every day, as maintenance medications. Typically, I was taking anywhere from 8 to 12 pills a day to control my disease. Since Crohn's Disease is an autoimmune disease, many of these drugs attempt to control the inflammation and suppress my immune system in order to eliminate symptoms. The disease can be summarized into my own immune system attacking the inner lining of my gastrointestinal tract until high levels of inflammation and ulcers occur. Over time, these sore areas can create scarring as your body heals. Some of these medicines can present their own detrimental side effects. 6MP can negatively affect the liver so while I took this drug I had to get my blood tested every four weeks to ensure I wasn't experiencing damage to that organ. Steroids like Budesinide and Prednisone can cause bone density damage over time so I have had to have multiple bone density scans to ensure that damage isn't occurring. So far so good.  

After experiencing an abscess in November 2019 and essentially learning the drugs I was taking for years lost their ability to keep my disease in remission, I have really struggled these past 6-8 months. I lost 25 lbs. I was in pain everyday.I struggled to really do much outside of going to work and coming home to rest and sleep. For those of you who know me well, I am typically a high energy and very active person so this was a very challenging time in my life. Ultimately, after 2 months on antibiotics and a trial of Humira, I wasn't getting any better. I spent 4 nights in the hospital taking steroids and different antibiotics intravenously and finally started to feel better. I took Humira for another 2 months, but it wasn't working for me so I switched to Entyvio. It seems to be working for me so hopefully soon I can stop having to also take the Prednisone and just receive the Entyvio infusion once every 8 weeks. I will still get a monthly shot of Vitamin B12 since I cannot absorb it naturally due to to scarring, but hopefully the days of 8-12 pills will be in my rear view mirror. 

What is the biggest lesson that IBD has taught me?

Being grateful. Some days are less than enjoyable, but many days are great when symptoms are managed or remission is achieved. Remembering to be grateful for the good days helps me get through the trying times. This disease has a way of grounding you and helping you to see clearly what really matters in life; people and relationships. 

Why is it important to share my story and make IBD visible? 

It is important to share my personal experience to inform others about the disease. It will help bring about awareness, political action that may help both patients and caregivers, and raise the needed R&D funds to find a cure. 

When there IS a cure, what does that mean to me?

My disease seems to be relatively mild compared to many others I have interacted with over the years also diagnosed with IBD. While I have experienced a few flare-ups, I have avoided surgery and have been able to restore control with medicines and diet. Finding a cure will mean to me that all of the people who have moderate to severe disease will be able to begin to live life free of the stress and pain that IBD inflicts.