Elizabeth’s story: Reconciling life with IBD and being the “Best Mom Ever”

You may have heard before that being a new parent is difficult. It is. There are times when you are convinced that you will never sleep again. You cradle your little baby in your arms and wonder what moron let you take this living thing home and ohmygod, what do you do with it now? You look at this tiny human and hope you are the Best Mom Ever.

When I had my son, I felt all these things. I was overwhelmed and afraid. I was sore (I had him via C-section) and exhausted. I was also feeling something else.

I noticed right away that my bathroom habits had changed. I chalked it up to all the craziness that went on *down there* from having a baby. But then it didn’t go away. I was getting worse. I was having such bad cramping that it would take my breath away. I was nursing him while sitting on the toilet because he couldn’t wait, and neither could I. I was grabbing my son out of his stroller in restaurants so I could run as fast as I could to the bathroom, leaving behind all our belongings. I was in and out of the ER so many times I have since lost count.

My son was a baby during the worst of my disease. He was too young to remember me when I was at my sickest. He was a baby when I spent the entire drive from Maryland to Disney World puking in rest stop bathrooms and sitting out of the 5K my family signed up for because I was in too much pain. He was too little to care that I spent many days laying on my bed watching him play on the floor because I had no energy to get down on the floor to play with him. Thankfully, he is spared those memories. I, however, am left with the guilt of not being the perfect mother. I had so many ideas of how I would raise my son. I would be there for him, physically and emotionally every single second of the day. I would be the Best Mom Ever.

When he was 21 months old, I had a lifesaving sub-total colectomy. I woke up with an ileostomy. My disease went into remission at that point for the better part of five years. It was not a life without complications. My ileostomy surgery left me with skin breakdowns, diet changes, and embarrassing bag leaks. Suddenly, my world involved stoma care and a mucous fistula.

In the years since my first surgery, he has seen me go through a lot. He has seen me curled up in pain because of a partial obstruction. He has been disappointed that I haven’t always had the energy to play with him, especially when I developed active disease in my rectum and was getting infusions every six weeks. He has learned to use caution with the right side of my abdomen where my ostomy is. He was in the waiting room when I went in last March to make my ostomy permanent. He watched my slow, complicated recovery from that surgery- but he has also seen me come back to life.

My son has experienced so much of my IBD and ostomy with me. He turns 8-years-old this week. Sometimes people ask if I regret, as a person with IBD, bringing a child into this world. I have regrets about how I have raised him. I have guilt that I wasn’t always able to provide him the life I wanted for him. I have fear that my genetics will surface in him, making him suffer from this disease.

But when I look at him, I see a young man who has empathy and patience. He has seen weakness and great strength. He knows what it looks like to be a fighter. He even tells me I’m the Best Mom Ever.