: July 6th, 2016 – April 26th, 2017 :
Ahh this must be too good to be true. I feel like how I felt before I had the disease. No more excruciating stomach pain. No midnight bathroom sprints. It’s like Remicade has given me a new body.
All these thoughts cascaded through my mind in October 2015. Remicade was the drug that ushered me into remission, and both my doctor and I were so ecstatic with its results. My doctor had seen me at my worst—puffy Prednisone face, sullen tired eyes, greasy hair, and acne-covered skin.
Now she was seeing me in my normal body with a thin face, excited and hopeful eyes, and healthy(ier) hair, despite the thinning.
One day in October 2015, I was waiting for my doctor in one of the rooms for a regular checkup. She opens the door, pauses, and just stares at me. “You look so healthy! You’re lookin’ hot, mama!” She and I laughed, and her words meant so much to me because it meant that others could see my healthiness too. (Thank you, Remicade!)
Next Step: Colonoscopy
During this appointment, she told me it was time for another colonoscopy, just to be sure that my colon was as healthy as my outward body looked.
No problem. It wasn’t so bad the first time around.
So in December 2015, I tolerated another weekend getaway with the toilet, and experienced my second colonoscopy. The results were exactly what we were hoping for! The walls of my intestine were smooth and pink instead of a burning, inflamed red.
Not your typical before and after shot, but here’s my transformation photos:
My insides matched my outward appearance, and that’s when my doctor introduced an option: to drop Remicade and stay in remission with an oral medication.
I pondered this. Hmm. I could leave the certainty of remission with Remicade and try my chances remaining in remission on an oral drug. I was a bit hesitant because, well, you know how well pills worked for me in the past…
But, on the other hand, it would be great to leave behind the harsh side effects of Remicade. It would be nice to have my Saturdays back instead of spending them at the hospital.
My doctor believed I’d do well on the pill because now my disease is under control. When I had tried other pills in the past, the ulcerative colitis was active and widespread.
As much as I loved and trusted Remicade, if it was possible to live life with daily pills rather than pumping meds straight into my bloodstream for the rest of my life, I’d prefer that.
Also, my boyfriend Tyler and I were getting more serious. We were discussing the words “marriage” and “summer 2017”. I told my doctor about this when we were talking about timelines, and she said that we’d have just enough time to place me on this pill and monitor it for about a year, and still have a little buffer time before the wedding.
With these timeframes aligning, I decided to break up with Remicade and take a chance on Sulfasalazine.
What is Sulfasalazine?
Sulfasalazine is an aminosalicylate (5-ASA) drug. 5-ASAs contain acid and reduce the inflammation in the intestine’s lining. Sulfasalazine usually maintains remission in individuals who have only mild to moderate ulcerative colitis (or mild Crohn’s).
This could be a reason why pills didn’t work for me when I was first diagnosed—because mine was classified as moderate to severe.
Sulfasalazine must also be taken with folic acid pills each day because the drug can negatively affect the absorption of folate.
So, Sulfasalazine wasn’t my favorite pill because it’s literally shaped like a penny—circular and flat.
I don’t know who came up with that design, but it’s not optimal for swallowing. Many times, it became lodged in my esophagus. Ouch! I got used to keeping bread, crackers, and water on hand to push it down my throat.
Eventually, I learned how to situate the pill in my mouth so it would go down length-wise each and every time.
Random side note: Its copper color also made my saliva yellow, which would always catch me off guard at first when brushing my teeth.
Making the Switch
It was a cautious transition from Remicade to Sulfasalazine. Kinda like walking on eggshells.
I tried to be in tune with every twinge and minor ache in my body, ready to call up my doctor and go back on Remicade if I thought I was headed in the direction of a flare.
But that didn’t happen. Sulfasalazine was working!
Of course, my doctor didn’t simply put me on the drug and say good luck, hope it works! She kept a watchful eye on me the entire time through regular stool testing.
Monitoring Through Stool Testing
Every so often, I’d go pick up an at-home stool testing kit and my doctor would call me with the results. It’s a great preventative method because it can warn you if you’re headed down the path of a flare; your stool knows before you do if a flare up is on the horizon!
Yes, the pictures you see below are the instruments in my stool testing. This might be TMI but, hey, that’s never stopped me before 😀
This “hat” is placed onto the toilet seat so it can catch your stool. Once enough is caught in the had, I placed some into these containers.
They also give me this neat little stool kit:
For this collection method, you go to the toilet like normal (without the hat) and use the brushes to swirl around in the water and place drops into the blue sample square.
After all these samples are collected, I delivered them to the lab. Not a few days would go by before I’d get a call from my doctor telling me the results. My doctor loved this system because it’s quick and easy to do regularly, as opposed to a colonoscopy.
So, from July 2016 through April 2017, Sulfasalazine and its folic acid sidekick created a wonderful remission period for me. During this time, Tyler and I were getting more serious and thinking of marriage, so this season of healthiness allowed us to spend more time together instead of me hanging out with the toilet, that ol’ bowl and chain.
I had graduated college with a Business Management degree in April 2016, so it was amazing being in remission during my job hunt and starting my first big girl job at a staffing agency.
Tyler proposed in September 2016—romantically, by a waterfall—and I was able to say yes instead of hold that thought, where’s the nearest toilet. Sulfasalazine gave us the opportunity to buckle down and plan the wedding during this time of remission.
Everything was lining up.
Life was back on track.
Running to the bathroom was no longer number one on my to-do list.
Tyler and I actually had time to hang out.
But of course, there’s no such thing as happily ever after, right? Stay tuned to find out next week what my gutsy colon had the nerve to do one month before our wedding…
In The Comical Colon’s Facebook group, let’s start a conversation:
During your journey, have you dumped a biologic to try an oral medication? If so, what med did you leave and which one did you transition to? How did the switch work for you? We’d love to hear your story in the private Facebook group!
I truly believe that the way to bridge this disease type’s chasm of alienation, fear, being misunderstood, etc. is to engage in community and share our experiences to help others along their journeys. Let’s learn to share our fears, our trials, and our triumphs to find the comical in the deepest, darkest crevices of our guts.