I had a 15-month-old, I had just started a job and my mother-in-law was staying with us to help with childcare because I was starting the job. I know now that the job was a blessing for that season because it gave me time to rest, it brought my MIL here help to us, and it gave me as purpose while I was struggling.
I had been in denial about how bad it was. I spent months in pain, not going to a GI which I was referred. Meanwhile I was losing weight, spending most days in bed, and was becoming more and more unwell emotionally and physically.
I finally got myself to the GI. He was very arrogant and quick with me and walked out the door while I was still talking to him. He was disrespectful about the fact that I was breastfeeding. It was going to be a month wait for an endoscopy/colonoscopy and I muttered a curse word under my breath because I didn’t think I could make it much longer without some help. The receptionist scolded me but gave me an earlier appointment.
I was so weak at that point. I was so scared. After the scope the doctor quickly and curtly delivered the news that I had Crohn’s, prescribed a bunch of steroids and sent me home with a pack of papers. As I was processing it and crying, and angel of a nurse spoke some kind hopeful words. Ones that I could barely hold on to, but they were a tiny beacon of light among all of the other scary things swirling around.
The steroids worked and helped take the pain away and helped bring my appetite back. I could pretend that I wasn’t so sick, but I wasn’t really able to process anything. All I knew was that I didn’t trust that doctor because he didn’t respect me.
I had continued breastfeeding my son through all of this, 15 pounds down from my regular weight, probably a drop of 25 pounds from a year prior. I clung to nursing because I had had to relinquish so much of the parenting and home-making and mothering to my MIL, which was heartbreaking. My son at this point was learning to talk and he was speaking exclusively Hakka because he spent all his time with his grandma. I know it was an absolute blessing that she was here, but it was so humbling to have to let go of so much control and to not be able to be present for my son and my husband because I spent so much time in bed in pain.
Breastfeeding was a major point of contention with my GI (and so many others). People were so inconvenienced by the fact that I was continuing to breastfeed, and I was incredibly defensive and combative about it. I did not want to give that up because it was all I had left, I felt. It was something I could provide my son that no one else could and I desperately needed that. And I believe my son did too.
Finally, he referred me to the Crohn’s and Colitis GI Center at University of Miami, saying that they could advise me on what treatment I could undergo while continuing to nurse. I am proud of myself for standing firm on this. There is such a lack of education and awareness in the medical community about breastfeeding safety and they are all prone to advise and even bully into weaning even when it’s not necessary because it is in the institution’s best interest, not the mother’s/baby’s.
My new GI was a good match. He was kind and patient and understanding. I needed a gentle voice. I felt so broken and scared and in denial. I was very intimidated by the treatment options. I had my guards up. It was easier to continue to suffer than to jump into the unknown of the scary injections, infusions, anti-tumor-necrosis-factor biologic and chemotherapy drugs. He listened and helped me begin to accept my disease.
I underwent 3 iron infusions, 4 months of biologic injections, daily steroids, and ongoing chemotherapy drug use as well as 2 MRIs, 2 X-Rays, and 2 more endoscopies and colonoscopies. Every time I would taper off the steroids, the pain would come back. After a year since the initial diagnosis we determined that there was a portion of my bowel that was too diseased to heal and it needed to be removed.
I was referred to surgery and the peace finally came over me. I had felt so tossed about by the sea of this disease. While I was suffering I felt so desperate for God, calling out to him, knowing he was present but not being able to feel much of his presence. I know he was with me and was provisioning for me during this time. I know that this suffering was necessary for a greater purpose. I know it was meant to draw me closer to Him. I was being conditioned to let others help me. I was being conditioned to trust in other people. I was being conditioned to let go of control. I was learning what it is like to suffer so that I have compassion on those who are suffering. I was learning how to sacrifice. I was learning how to advocate for myself.
I am still learning these things.
I'm Lisa Yau