Three Things I Wish I Did Sooner as a Patient
I remember feeling overwhelmed five years ago after my initial diagnosis of ulcerative colitis. It was an illness that I knew little about and felt ill-prepared to fight.
I still cringe at some of my early mistakes in handling this disease. Through a long trial and error process, I developed a few lifestyle changes that I now consider necessities for myself and can be of benefit to others with ulcerative colitis.
With the understanding that I have now, here are three things that I wish I did sooner as a patient.
How a bidet has helped me with UC flares
If you're in a flare, there can be an uncomfortable, uncleanly feeling that just always sticks with you. I would combat this feeling by taking a shower every time after using the bathroom. This soon became rather time-consuming.
Tired of such a tedious routine, I bought a bidet. Non-exaggeratedly, my bidet is the best thing ever. Seriously!
The bidet has an uncanny ability to shoot water right to the areas of your butt that need cleaning (you may have to find an optimally seated position if you buy a bidet without a manual movement controller).
It helps me use less toilet paper, and I don't feel the need to take showers immediately after using the bathroom. Comfortingly, it makes me feel normal.
A UC journal to record symptoms, foods, flares, and more
I used to always rack my brain trying to find an answer to a physician's question "How many times do you poop a day?". It's not something that I ever thought about.
On top of that, what if I gave the wrong answer? What is normal? Two, three, four times in a day?
From the advice of my gastroenterologist, I made an ulcerative colitis journal where I document a myriad of things about my disease including what time I take my medications, how certain foods make me feel, and how many times a day I go to the bathroom.
My normal is different from other patients' normal. Likewise, triggers that lead to my flares are going to be different than other patients' triggers. Journaling has given me and my doctors a greater understanding of my disease and how best to treat it.
Informing my doctor of any bleeding
There was a period in my life that I call my "bad patient days". I skipped colonoscopies and doctors' appointments, drank coffee all the time (a HUGE trigger for me when I'm in a flare), and saw bright red blood while looking down into the toilet almost every day for a few months.
I refused to acknowledge that I had a disease. As a surprise to no one but myself, I became extremely anemic from my willfully ignored bleeding colon. Now, I have scar tissue all over my large intestines from improper healing.
With ulcerative colitis, life can change on a dime. Ignoring symptoms is a slippery slope that leads to serious intestinal damage. Do you let your doctors know immediately anytime you start bleeding? I certainly wish I did sooner.
What is your comfort level disclosing your IBD to your employer?