Literally. Mr. Making It Bright spent Sunday prepping for his colonoscopy this morning.
Why is my young husband having a colonoscopy?
Crohn's Disease. It's part of his regular care.
What is Crohn's Disease?
According to CCFA (Crohn's & Colitis Foundation of America), "Crohn's disease is a chronic (ongoing) disorder that causes inflammation of the digestive or gastrointestinal (GI) tract."
What are the symptoms?
As listed on the CCFA website, "Persistent diarrhea (loose, watery, or frequent bowel movements), crampy abdominal pain, fever, and, at times, rectal bleeding: These are the hallmark symptoms of Crohn's disease, but they vary from person to person and may change over time. Loss of appetite and subsequent weight loss also may occur. However, the disease is not always limited to the GI tract; it can also affect the joints, eyes, skin, and liver. Fatigue is another common complaint. Children who have Crohn's disease may suffer delayed growth and sexual development."
For my husband, he spends a lot of time in the bathroom, he needs to watch what he eats, and he has to try to keep his stress low or manage it extremely well. He's been living with Crohn's for the better part of his life, since he was 12. He's been on a variety of medications, most recently Cimzia in combination with methotrexate. It seems to be working (THANKFUL!) but we can't say how much is the Cimzia and methotrexate, and how much of his most recent remission is due to his reconstructed intestines.
Less than a month after Goose was born, Mr. Making It Bright drove himself from work to the ER during a Crohn's attack. By the time I arrived with our three-week-old baby, he was writhing in pain and screaming, begging to be knocked out. He was admitted and 3 days later, the doctors had determined that his small intestine had perforated and emergency surgery was necessary. I had just come home to drop off milk/nurse/cuddle my baby when I got the call to come back immediately. I barely made it back to the hospital before he had to be wheeled back. He kissed me and his new daughter, whom he had barely gotten to know due to the high amounts of pain medication he was taking to get him through the Crohn's pain he had experienced for the last third of my pregnancy and her first few weeks.
I didn't know what the outcome would be, but I had to be hopeful. I had a newborn. I had a newborn and a very sick husband. And I was still recovering from a rough labor and unexpected c-section. Wow.
I sat next to him in the ICU and addressed and stuffed the birth announcements for our daughter. And I talked to him like he could hear me. That was the worst part-- not having my best friend to talk to.
Mr. Making It Bright spent a total of 16 days in the hospital. After he finally got off the ventilator (5 days-- several of those wide awake), his recovery in the hospital was much less scary-- at least for me. Yes, he had a lot of recovering ahead of him, but I didn't have to be afraid of him never coming off the ventilator or never moving out of the ICU. He hadn't eaten in days and they even stopped TPN several times because his blood sugar was so out of control. He was wasting away in front of me. His muscles had atrophied, he couldn't lift himself up in the bed, he couldn't walk to the bathroom without assistance. He slept a lot, had tons of medication, finally started eating and having occupational therapy, and would have a long recovery at home.
I took him home and everyone left-- my mother who had cared for Goose, Mr.'s parents who shared shifts at the hospital so he was never alone. He had a PICC line still in his arm, convenient for the IV antibiotics I would give him for weeks after his discharge from the hospital. So I would get Goose set up on her play mat, with her magic star, and then start the antibiotics for the Mr. And I would sing, and dance, and try not to cry while taking care of both of my babies. If everyone was fed and mostly clean, it was a good day! I typed up his medication schedule because there was too much to try to remember, so many bottles of pills. He slept in a bed set up in our living room-- he was too weak to go upstairs. He was still heavily medicated for his pain so my husband wasn't fully present. I've never felt so lonely.
In the months following his surgery, our rowdy trio-- me, our daughter and her stroller, my Mr. and his walker-- went to too many doctors' appointments to count. Infectious Disease because his guts spilled out all over his insides, Surgeons because his incision was left open, Gastroenterologists to manage his Crohn's, Palliative Care to help manage his recovery at home. It was a full-time job just to manage all the bills and appointments.
Mr. Making It Bright having emergency surgery was one of the hardest ways to start out as new parents. He couldn't even hold our little lady on his own, without someone to help and watch. But we did it.
He made it through his (at times, miraculous) recovery partly, I think, because of love. Our love for each other, and for our daughter. Our marriage made it most definitely because of love. Those months were hard on both of us individually, and as a couple. It took a lot of work to rebuild, and it wouldn't have happened without love. Such love.
Before he went back to surgery, he told me, both of us crying, not to worry about him going anywhere because he loved me too much. And I remember talking with a good friend, the closest I'll have to a sister, while I was sitting next to his bed in the ICU, before he woke up for the first time after surgery. She said that we didn't love each other the way most people love each other, that our love was something special and different. That would make all the difference.
I had to believe in that special and different love then because I had to know that my soul mate, my other half, was going to stay here with me and with our daughter. And I believe in it now because we still choose to be together every day.