Why I’m Not Discouraged About Being Sick
I have been on one medication for my Crohn’s disease. That’s right, folks. One.
My story with Inflammatory Bowel Disease does not have an unusual outline – the inflammation was found, I started on steroids, and then was slowly transitioned to my “maintenance” medication. This medication was supposed to prevent complications, and if it did not, I would switch to another one. Imagine it as a ladder. The higher you climbed, the harder-hitting, no-nonsense medication you were given. If one did not work, you climbed to the next. The last rung of that ladder was always surgery. Oh, and did I mention: this was not a very tall ladder? You only had to climb a short distance before a surgical consult was being placed.
Where my story really seems to strike a common chord, though, is that I was a poorly-managed IBD patient, not aware of my rights when it came to my care, and not educated about the work being done on my disease. I knew about the ladder of treatment, and once you climbed as high as you could, the only answer was to keep removing the diseased intestines. I knew so very little until I immersed myself into the online advocacy groups.
When my “maintenance” medication didn’t quite maintain me like it was suppose to, I declined quickly. I had strictures, I had obstructions, and I had to have surgeries. Boy, did I have surgeries. About eight years ago, facing sepsis and a bowel perforation, a stoma was created through my abdominal wall on which a bag was attached to collect waste. It is now how I go to the bathroom. This ostomy has given me my life back. I have been able to complete nursing school, date and find my future husband, work as a pediatric nurse, and become a patient advocate because of this ostomy.
During that quick decline with my health, I felt so unsure of my future. I had no idea if I would be able to do all of things my ostomy eventually allowed me to. I felt so terrible, rotating between the symptoms of pain and nausea. What I did not see at that time were the breakthroughs being made in research for my disease. I did not know about the therapies being trialed at the time that were not currently available. Had I known about the extent these clinical trials were going to, I can guarantee you I would have been comforted. The reason I know this is because my story with IBD has not ended.
Fast forward to today. My run of remission seems to slowly be coming to an end. My symptoms are creeping back, but fortunately, my knowledge as a patient advocate has allowed me to understand what is happening inside. I am taking the “Patients Have Power” hashtag from the Clara Health Breakthrough Crew seriously and pushing for the care I now know I need. I understand the research being done and have seen the numerous medications that have helped patients reach remission. I often skim through Clara’s website to see what treatments I could potentially be involved in, and what patients in the future may have the option to use.
Just a few weeks ago, I was discussing my symptoms with another IBD patient who is in a very similar situation – she is starting to flare after a long period of remission. Although we were both disappointed that our run was over, we shared the encouragement we felt with the great strides being made in research. We both are GI nurses, and we often administer the medications that wind up giving relief to our patients. We know that there are answers out there for our diseases because we have seen them being developed first hand. Knowing this knowledge, I do not hold the fear that I will have to go through such a drastic life change like I have in the past. Research is making the treatment ladder taller and taller, and it has calmed my fear that I will reach that last rung as quickly as I did the first time.
*Please visit www.clarahealth.com for more information about research, clinical trials, and the breakthroughs being made every day for patients!