: Starting April 2017 :
Sulfasalazine & Remission
Sulfasalazine pleasantly surprised me. I had big expectations because Remicade had set the bar high…and Sulfasalazine met them.
Sulfasalazine kept me in remission…
…during my post-college graduation job hunt.
…when I started my first “big girl” job at a staffing agency in August 2016.
…on the hike when Tyler proposed to me in September.
…throughout the months we planned our wedding.
Sulfasalazine did its job so well that I nearly forgot I had a chronic illness.
It was especially wonderful around November 2016 when I had a gazillion things happening at once. I was laid off from my job at the staffing firm, working part-time for my hometown’s parks and recreation department, and searching for new jobs (which is a full-time job in and of itself)!
I eventually landed a new job in February 2017 as an office coordinator for a home care agency for the elderly. This job was exciting, fast-paced, and the days flew by in what seemed like an hour. I simply had no time for cramps, pain, or spontaneous bathroom runs (especially because my desk was the farthest away from the bathroom!)
There was a lot to learn in this position, and around my three-month mark, I was really getting a good routine down. But, one dark day around that time, in May 2017, an unwelcomed guest arrived.
Not through the front doors of the office. But in my intestines. It didn’t have to introduce itself; I already knew its name.
I left the front desk that day and spent some quality time with the bathroom. Of course, I was not thinking of the situation lightly at the time.
I was frustrated. Let down. Angry. My wedding is one month away!! I thought to myself from the cold toilet seat.
If you have planned a wedding, you may agree that the month before is the most stressful. You don’t get much sleep, you are going over the details in your mind a billion times, you’re nervous, excited, ready—all at once. That being said, my flare could have definitely been stress-induced.
I immediately got in touch with my doctor. We both knew we had no time to waste—the wedding was in four weeks—so we decided to go back to what we trusted: Remicade.
A part of me was disappointed that I had to revert back to this drug; it made me feel like my situation would never improve.
I felt my crazy colon was a nuisance to everyone: my doctor for all my medication switches, my coworkers and supervisors for having to miss work, my fiance who I couldn’t spend as much time with because of the pain.
Rush for TB Test
These feelings were amplified by the fact that I had to wait about five days to get my Remicade dose!! My TB test had expired!!
If you remember from blog post 9, What to Expect for Your First Remicade Infusion, a TB test is required before starting Remicade (and it must be renewed once a year).
I had completely forgotten about this, and now I was rushing and panicking to renew my TB so I could receive my Remicade infusion!
During these days between having my TB placed and getting it read, my stomach was incredibly fussy. Looking back, I can’t believe I went to work these days…
Maybe it was because I was still the newbie and didn’t want to look like a slacker.
Maybe it was because I didn’t want to have to reveal to my coworkers and supervisors about this disease.
Or maybe it was because I found some food that passed through my digestive tract fairly peacefully.
The Meals that Helped
During these days, I ate no breakfast and brought a small, light lunch everyday. The lunch consisted of only rice, oyster crackers, and orange juice.
The key though, is to make the rice in chicken broth rather than water. It adds more flavor without crazy seasonings, sauces, or difficult-to-digest additions. The rice was easy to digest, the crackers coated my stomach, and the juice gave me some extra sugars.
Another key was to eat gently and throughout the day so you get nowhere near feeling stuffed. Easy-to-digest food in small portions is what allowed me to (somehow) go to work these days.
Of course, I still had painful sprints to the bathroom, but they were not constant like how things were when I was first diagnosed.
Finally, by the end of the week, I got my TB read and I went back to the hospital to get my Remicade infusion.
Back to Remicade
In my case, Remicade is like all-powerful drug that, as soon as it touches my blood, I turn into this invincible, incredibly happy, energetic person.
Like all my other infusions, I left the hospital that day feeling great and ready to tackle the last of the wedding planning.
The next four weeks at work were happy ones. The Remicade took effect right away, and since I had been getting infusions every eight weeks, I’d have about a two-week buffer time after returning from our wedding and honeymoon before feeling the pain and needing my next dose.
Though these weeks were happy, they went by painstakingly slow because I was so ready to get married. Finally, my vacation started, and soon after that, it was the wedding day.
It was beautiful, sunny, (a little chilly for my liking), but absolutely perfect. Tyler and I said I do at a woodsy winery in between a lovely pond and all our friends and family. We ate BBQ food, took photos, and danced the night away.
I know in my last blog post, I said there was no such thing as happily every after, but maybe there is…
I thank God that I had no pain. My wedding day was absolutely perfect.
I didn’t have to pause my vows to double over in pain.
I was able to eat the food that was more than rice and orange juice.
And best of all, my white dress stayed white.
In The Comical Colon’s Facebook group, let’s start a conversation:
Tell us about your journeys through remission and flares. What foods are easy to digest during your flare ups? We’d love to hear your story, ideas, and advice 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.