The “Why I am a Gutsy Girl” feature aims to highlight gutsy girls of all kinds, shapes, sizes and from various backgrounds with different stories. Today I’m featuring someone who is caring for Crohn’s Disease.
Whether you have IBS or IBD, or you care for someone who does, you have a story to tell.
Today’s story features a Crohn’s Disease patient caregiver. Here is her perspective on the illness.
Rebecca’s Story: Caring for Crohn’s Disease
I am a wife, dog mom, full-time public relations professional and full-time caregiver.
In 2007, just a few weeks after we began dating, my husband was diagnosed with Crohn’s Disease.
My mom had just begun chemotherapy for non-Hodgkin’s lymphoma and I drove up to be with my husband after his colonoscopy. I arrived at his house, stuffed animal in tow, to find him in the bathtub, soaking after the procedure. I sat in the bathroom with him to keep him company and make sure he didn’t fall asleep in the tub.
That was it for me. I don’t know what clicked, but I knew in that moment that I loved him and was going to be with him the rest of my life. Two years later, he and I got married with Crohn’s in tow.
In the Beginning
In the beginning, I didn’t know much about Crohn’s Disease. But I’ve made it my mission to understand the disease and everything he experiences. I go to all his doctors’ appointments with him and ask an incessant amount of questions.
I research medications, procedures and symptoms online until I am satisfied with what I find (or am freaked out by what I read). However, no amount of research or information can prepare you for the difficulties of being a caregiver.
Ten months after we were married, my husband was hospitalized for the first time. He had gone to have a colonoscopy with his new doctor after not having one for several years.
I greeted him in the recovery room after the procedure and waited as he rolled side to side trying to release air. After a bit he felt better and got dressed. However, within minutes we knew something was wrong. He was very lightheaded and nauseous. We told the nurse that something was wrong and we couldn’t leave, but she kept insisting that he was fine and it was normal what he was feeling.
We sat him back down and the nurse realized quickly that he had spiked a 104 fever and everything was not okay. After a few days in the hospital, his doctor realized that when she pushed the scope through the severe stricture in his intestines, she must have micro perforated (made a tiny hole) his intestines, causing E. Coli to get into his bloodstream.
It was during this hospital stay when I realized that if I wanted my husband to get the best treatment possible, it was up to me.
Since that hospital stay, my husband has been hospitalized twice. One stay was for a blockage. Then, a month afterwards was for a bowel resection. During each stay, I made sure I understood everything going on so that I could ensure he was getting the best care possible.
When he had the blockage, I insisted that the emergency room doctor consult with his gastroenterologist before deciding anything regarding his treatment. I nudged the nurses when he was in pain for more pain medication. And I brought him things to read and play with to distract him in the hospital. I also convinced the hospital to let me bring our dog in to visit him while he was admitted.
Afterwards, when we found out he needed surgery, I found myself making lists to prepare for the surgery. The lists were filled with questions about the procedure and recovery, medications, physical limitations after surgery, and anything else that came to mind. I went to all pre-op appointments with him to ensure that, even if he wasn’t asking questions, I was getting all of the information.
Surgery day came and I felt prepared. Or at least as prepared as you can feel prior to your loved one having surgery. He went into the procedure and came out with flying colors. The resection went well and while he had a long recovery ahead of him, we were prepared. Even though I had started a new job several months prior, they let me cut my hours in half for two weeks. I worked from home/hospital the entire time so I could help with his recovery.
He stayed in the hospital for five days and I was there by his side the entire time. I made sure he had his medication. And I found nurses when the narcotics were making him feel sick. I also made him get out of bed to move around even though he didn’t want to, and encouraged him to eat small amounts throughout the day, and helped him to shower. I bought him silly hospital pants and a stuffed animal replica of our dog to cheer him up.
When he was finally released from the hospital, I brought him home to a clean apartment (thanks to my mom). Easily-digested foods filled the fridge. I cooked him whatever he wanted, whenever he wanted it. I slept on an air mattress next to our bed for six weeks. This was so I didn’t hurt his belly when I rolled in my sleep. And I set alarms throughout the night so I could wake him to take his medications.
I made him go for short daily walks to build up his stamina. I drove him to all his doctors’ appointments and to his graduate school to change his class schedule. Basically, I did everything in my power to ensure that he was able to heal without having to worry about how things would be accomplished.
Almost two years after his surgery, my husband is doing wonderfully. He is weighing almost 140 pounds for the first time in his life. And he has no diet restrictions, and is having little problems with his Crohn’s. It’s been a long journey getting to this point but it was totally worth it.
I am a Gutsy Girl because I am not afraid to do whatever it takes to take care of my husband.
Rebecca’s blog, Caring for Crohns, chronicling her journey as a caregiver for someone with a chronic illness. You can also follow her on Twitter @CaringforCrohns or like her on Facebook, www.facebook.com/caringforcrohnsuc.
You will heal. I will help.