Motherhood with Crohn's Disease
Raising a family is hard, but raising one when you have a chronic health condition can create even more challenges. Aside from love, time and energy play a huge part in caring for and teaching your children as they grow. As a stay-at-home mom, I had the time to be with my two daughters, but living with a chronic condition and the accompanying abdominal pain stole my energy.
My symptoms began at a Christmas party a year after my second daughter was born. I remember suddenly feeling intense abdominal pain. The pain itself didn’t last long, but it ebbed and flowed. It came on like labor pains and forced me to stop what I was doing, curl up and breathe until the pain subsided. It was frightening how intense the pain was; it was difficult to hold back sobs. The attacks also came out of the blue. Sometimes, they would come in the middle of grocery shopping, during parent-teacher conferences, family gatherings, in the middle of the night, at the park, or while driving the car. There were times when the pain got so bad that I had to pull off to the side of the road to vomit. I initially thought it was something I ate, but unfortunately these pain attacks started coming more frequently and lasted longer as the weeks and months went on.
The worst part was that my daughters witnessed everything. They were so young, and I didn’t want to scare them, so I would tell them, “Mommy’s tummy hurts and I need to lie down,” or “Play quietly next to me until mommy feels better.” I did the best I could. I read a lot of books to them, put together many puzzles and played endless pretend games lying on my side curled around a heating pad. In the end, my daughters learned compassion, evidenced one time when my older daughter tugged on my sweater, handing me a heating pad as I was hunched over the kitchen sink in pain.
The Path to Diagnosis
After seeing several doctors, who either performed the wrong tests, were insensitive to the amount of weight I lost, or attributed my symptoms to stress, I started to have very little hope. I was beyond desperation. I was extremely weak and thin, and the abdominal pain was coming more regularly throughout the day.
Fast forward almost four years, my illness was finally identified, and I was diagnosed with Crohn’s disease– I was actually ecstatic and remember hugging the doctor! During my first appointment with the gastroenterologist who eventually diagnosed me (and is still my doctor), he asked me to tell him my story, which reminded me how every patient’s story is so unique. As I was sharing my story, I expected him to interrupt me or brush the symptoms off like other doctors had done,but this doctor was different. He sat silently and listened.
When I finally asked if there was something he could do, he said there were several tests that needed to be done, and we would continue until we had a diagnosis. I was so close to tears because I had finally found a doctor who cared and took my symptoms seriously.
When he diagnosed me, he explained it was a chronic condition that couldn’t be cured but could be managed. He continued to say that a very large portion of my small intestine was now irreversibly scarred and narrowed due to the lack of an earlier diagnosis and treatment. This was a huge concern of mine and what drove me to continue advocating for my health to find a treatment regimen that would work best for me and help me to manage the lifestyle I wanted to live as a mother.
Gaining Control with the Right Treatment
After two years of working with my doctor and trying several different treatments, we finally found an option that worked for me. With the treatment, we could get my symptoms under control, and I am still using the same treatment today. I’m back to doing the things I enjoy doing – spending time with my family and singing in the church choir. It took a very long time for me to finally get diagnosed with Crohn’s disease, and to find a treatment that works for me. If I were ever asked to switch my current biologic treatment while it’s still working for me, I would be very concerned.
What I’ve learned from my experience is that it’s so important for those living with a chronic illness to find a doctor who will listen and who won’t stop working with you until the right treatment is found. Over the years, working with my doctor, I’ve become a very informed and proactive patient when it comes to my health and care.
If you’re living with Crohn’s disease or another chronic condition, don’t be afraid to ask questions and to get a second, third, or even fourth opinion. Remember that you have a voice when it comes to your care and your treatment decisions. Also, remember to communicate with your children and family members and tell them what is happening. Show your love and be with them when you can, even in the smallest ways. You are doing the best you can and hopefully with the right healthcare team and treatment, better days are ahead for you and your family.
To hear more from Karen and others about their journeys to find a treatment that worked for them and the importance of having a voice, visit FinelyTuned.com. For a list of treatment-related questions you may want to ask your doctor, click here.
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