The New Normal: The Beginning of Our Journey With Ulceritive Colitis

Everyone has days in their life that clearly mark the beginning of a new chapter, a new season or a life change. The day you graduated high school, the day you graduated college, the day you got your first job, got married or your first child was born. For the most part, these are happy days, filled with joy and excitement for what is to come. There are other kinds of life markers. The hard ones that gut you from the inside out. A loved one dies, you loose your job, you get sick. Not the I don't feel well kind of sick but the my life will never be the same kind of sick.

My husband had been feeling terrible for the better part of a year. We had seen every specialist, had just about every test and no one could seem to figure out the pain, bloating and other symptoms in his lower abdomen. We had tried food allergy testing, probiotics, diet change all to no avail. We had finally landed in a GI specialist office. After a biopsy, he came to see me. Ulcerative Colitis. We could finally name the beast. Looking back, this only brought relief because we had no idea what the future held. We had no idea that he wouldn't respond to first line treatment like most people the UC do. We had no idea that the handful of pills he would have to start taking wouldn't be the miracle we were looking for, but just part of the "step therapy" protocol that we would have to proceed down.

As he woke up from the biopsy and began to comprehend what was going on, the doctor explained the next steps. Mesalamine, 6 pills a day. For most, this would put their bodies into remission. Remission, that's a sick person word, a very sick person. I got home, put my husband to bed and ferociously attacked Google with my questions. Not the best idea. Fear rose in my heart as I read the horror stories of others that included awful, like changing surgeries and even death, constant pain and life altered.

He began taking the pills and we waited and hoped. Months passed and no improvement. As we sat back in the specialist office, we knew what the future likely held. Immunosuppressive Therapy in the form of one of a couple of options. Needles, regular injections, given for the rest of his life. The risks are present. Do nothing, you will likely get Colon cancer, a disease that took the life of his grandfather. Take the injection, and your risk for lymphoma, pneumonia and other infections is raised.

As we suspected, the doctor recommended Humira. We started the process to get it approved with our insurance company and to get him medically cleared to begin. At the same time, we knew we wanted a second opinion before we made this life altering choice. I called the Mayo Clinic. Tears ran down my face as they assigned him a patient number and then, after an explanation of the situation and the timeline, granted him an emergent appointment. I was thankful they could see him within our timeline for making a decision and at the same time, terrified that he was sick enough that they would work him in.

In the end, we chose to begin Humira. The scary moments have become normal. Watching him inject himself has become routine. He has figured out how to travel, workout and do daily life. We are still figuring out how to live with the side effects. The cycle of exhaustion that comes with the shots, the allergic reactions that he has with each one.

Despite the new normals and unknowns, God has been so faithful, as He is, throughout this journey. We have met the right doctors and people at the right time. We have had deductibles paid on our behalf and bosses that are beyond understanding. Our children and their friends have graciously adjusted to off limit areas and hand sanitizer. There have been long stretches were trusting him with this has been a moment by moment choice and others were it has been easier. Easier because he has been evident.

My grandparents had this stained glass frame growing up, with the poem "Footprints" in it. The frame now sits on the bookshelf in my home. There is no better words to describe how we have often felt in this journey.

Footprints in the Sand

One night a man had a dream.
He dreamed he was walking along the beach with the LORD.
Across the sky flashed scenes from his life.
For each scene, he noticed two sets of footprints in the sand:
one belonging to him, and the other to the LORD.

When the last scene of his life flashed before him
he looked back, at the footprints in the sand.
He noticed that many times along the path of his life
there was only one set of footprints.
He also noticed that it happened at the very lowest and saddest times of his life.

This really bothered him and he questioned the LORD about it:
"LORD, you said that once I decided to follow you,
you'd walk with me all the way.
But I have noticed that during the most troublesome times in my life
there is only one set of footprints.
I don't understand why when I needed you most you would leave me."

The LORD replied:
"My son, My precious child, I love you and I would never leave you,
During your times of trial and suffering,
when you see only one set of footprints, it was then that I carried you."