Healing Crohn’s Disease


I’ve had Crohn’s disease for nearly twenty years. Even, at times, when the disease is in remission physically, it never lies dormant in my thoughts, emotions, or in my soul. It alters how I live my life in both the beautiful positive ways and the ugly and debilitating ways.

A chronic disease can be completely overwhelming at times. It can feel like being trapped in a prison cell. It never goes away. That piece of knowledge can haunt you and capture you. It can  make you feel alienated, confused and depressed sometimes. It can feel like nobody truly understands. Maybe they don’t.

I’ve had to get creative and find ways to escape the lifelong sentence of my chronic disease. I wasn’t made to be imprisoned. I force myself to look outside, make a plan and know that I will do great things once I’m free. I find ways to sneak past the warden, who I’ve  gotten to know pretty damn well over the years. It’s myself. No matter how many things in my body get scarred, altered, rearranged, or broken, I will forever hold the key to my freedom. Resilience, perseverance, humor, faith and hope help me dig the tunnel out. Sometimes, I force myself to follow the tiniest glimpse of light.

Healing is an ongoing process.

Healing is acknowledging my fears but not inviting them in for dinner. Healing is exterminating shame. Healing is letting myself feel the weight of it all: the unfairness, pain, loss, anger, and sadness. Healing is sharing my story and listening to other’s stories. Healing is giving myself the same extraordinary compassion I so freely give to others. Healing is forgiveness. Healing is changing, growing and evolving into a different person. Healing is allowing the hundreds of disease-related experiences to affect me. Healing is granting myself the permission to be different. Healing is acceptance.

Healing is always searching. Healing is often found in helping others. Healing is possessing a willingness to go back the opposite way through the tunnel I’ve dug, back to the darkness, to the prison cell of another. Healing is holding another’s hand, looking into another’s eyes. Healing is seeing a glimpse of myself in a hurting child, a lonely mother and a dependent elderly patient.

Healing is a gift that I open over and over again throughout my journey.

Healing is finding and seeing the beauty in the closing of wounds or watching the water run over the bright red flesh sutured outside of my abdomen. Healing is standing outside and staring up at the mesmerizing flight patterns of the barn sparrows. Healing is hearing my children’s laughter, holding their hands and answering their innocent questions.

Healing is my husband’s relentless, supportive, unconditional proud love for me. Healing is loving him.

Healing is everywhere.

Healing is found in accepting encouragement, love, support, bear hugs and help from those who surround me.

Crohn’s disease is healing.

I am healing.




Chocolate Chip Cookies


Tonight, after we said a long gratefulness bedtime prayer and I heard my boys’ breathing get deep sleep heavy, I cried like a big old baby. There must have been a hundred reasons as I thought about all of the beauty of the day.  That yellow finch playing in the street in that puddle. The ruby throated hummingbird whizzing up to my kitchen window. My boys’ pure endless and exhausting innocence. It’s so damn hard to know if they’re prednisone tears without some sort of litmus paper, but I think tonight, they were the real deal. The kind that flood your face for a reason. Or perhaps a million.

I thought about eating lunch earlier today. “Mama, can I sit on your lap?” My almost five year old boy asked. We had a whole bench to ourselves, but yes. I sat across the table from a man, somehow my husband. A man that loves me in ways that blow my mind. Yet, I don’t always feel the enormous, overpowering sense of gratitude for him because marriage is hard. And distracting. Marriage with jobs, kids, and chronic illness takes hard to another level. But we do the hard together. And it’s not always pretty, but it’s always together. Always.

After school, my boys and I got ice cream. Then, we took a bag full of “World IBD Day” treats i.e. soft toilet paper, bubble gum, coloring books, flowers, smelly soap etc. for the nurses to give out to GI patients that maybe needed a boost. As we walked the halls of Saint Luke’s, hospital memories, many of them painful, suddenly overwhelmed me. Thankfully, the distraction of my boys fighting over who got to push the elevator buttons interupted some of the more difficult memories. The repeated NG placements. The depressing, long days spent laying in that hospital bed. The prayers that I uttered as they moved my fragile, aching infected body after surgery from one part of the hospital to another. I understand why people avoid going back to hospitals or places that trigger some of those vivid sensitive and hard to forget memories.

But I happen to love hospitals, specifically when I’m not a patient. I love the people there. They truly feel like touching heaven sometimes. Tonight, we rode several wrong elevators. We got lost and everybody helped us out. Everybody thanked us for coming. Perhaps, it helps being accompanied by three energetic young boys carrying chocolate chip cookies for the nursing staff. They had a hidden agenda. They eagerly hoped to meet all of the NICU nurses who helped take care of them in their first few weeks of life. On the car ride, they had planned out what they would say, “Hey! Do you remember me?” I didn’t have the heart to tell them that the nurses may not remember them. Seven years later. Little egos need not be deflated too soon.

After our hospital visit, we drove past a fun looking park on our way home, so we stopped. I hoped I could link the hospital visit to the fun playground in their memories and we could do it again next year. On World IBD Day. The boys asked if I would be “the monster” and since I had my running shoes on and I had just left a hospital that I used to long to get out of, I chased my boys around. And around. Because I could. Because I was free. Because I know there are others that want to be recovered and walking, running, and desperately want to feel better and want out of the hospital. I played for them. Maybe one day soon, they will play for somebody else too.

The most meaningful part of the day happened in the van, on our ride home. One of my seven year old boys likes to read bits and pieces of my blog posts. Yesterday, he had seen the title “It’s Not a Shit Bag.” I talked to him about my bag and how it’s hard to truly understand something if you don’t know anybody with it. His seven year old heart knows that the “shit” word is not a kind name. I talked about how we all can say things that might not be intended to be hurtful, we may even be trying to be funny but that our words have the power to really hurt others. Or really help others. I talked to my boys about the power of teaching others and forgiving others who made a mistake and may have said something that hurt us. They talked to me about being a pebble in the water. A sweet school lesson on the ripple effect. I believe that people, for the most part, want to be loving and impact others for good, but sometimes, we just don’t know what that looks like. I’m grateful that we got to have a conversation that truly mattered. On a day that possessed so much beauty.

I wanted to say thank you for all of your kindness and support and love. Today. And most every day. I’m so damn lucky to have all of you.