3 Tips for Families with Crohn's

When I was diagnosed with Crohn's at the age of 13, some 23 years ago, I struggled those first years with modifying my newly required diet, managing medications, and feeling "different" at school.  My older brother was 15 at the time and generally healthy. It was difficult on my parents managing the financial struggles of my hospital stays and treatment, my diet compared to the normal diet of the rest of the family, and how to ensure my brother wasn't "lost" in all my many needs.

Fast forward several years and my father was diagnosed with Crohn's.  

My mother has struggled her entire life with severe and sometimes debilitating IBS.

My brother has had none of these problems and often doesn't understand our struggles. Who could?  

Given my family history, I thought it would be helpful to share 3 tips for families with Crohn's.

1).  Crohn's-Free Siblings Often Feel Left Out, Confused, and Scared

My brother was terrified when I almost died, rushed to the hospital with a hemoglobin of 4.  My hospital stay was followed a year later by a month-long hospital stay for stomach ulcers complicated by being given the wrong medication.  To this day, I worry about the effects on my brother during those tough teenage years.  

Talk to the Crohn's-free siblings and keep open a constant dialogue.  They are likely wondering if they too will develop Crohn's.  Depending on their age, this is a difficult conversation as we simply cannot predict it, but know that it does run in families.  

Make sure the Crohn's-free sibling has opportunities to eat his/her favorite foods that may have been taken out of the family rotation. My entire family's meal schedule changed after my diagnosis.  Yet my teenage brother was probably wondering if he was ever going to get a cheeseburger and fries again.  And if he should feel guilty for doing so.  

Help the child with Crohn's and the Crohn's-free sibling understand how they can support each other. Can one help out more with chores when the child with Crohn's is feeling ill? Or find activities to do together when low energy is a problem, like reading together, mad-libs, or playing board games. Does one child feel left out?  Divide up and have one parent/caretaker take the child with Crohn's on a special outing while the other parent/caretaker takes the Crohn's-free child out for their favorite meal and the one-on-one time that is so needed when a family is dealing with a sick child.

2.  Call in the Pros!

Don't try to handle a Crohn's diagnosis on your own.  Now is the time to let friends and loved ones help you. And now is the time to tap into every professional possible.  Have you accumulated massive debt from the illness, medical bills, hospital stay?  Meet with a financial advisor who specializes in dealing with illness.  Pulling your hair out planning the nightly menu for picky kids and a child with Crohn's?  Check out great cookbooks and blogs like Against All Grain.  Meet with a nutritionist (and check your insurance - often times it is a covered benefit!).   Feeling isolated like no one understands?  Check out local support groups through the Crohn's & Colitis Foundation of America.   Not happy with your gastroenterologist?  Get a second opinion.  Feeling anxious or dealing with children who are acting out?  Meet with a family counselor.  

Dealing with a family member who has been diagnosed with Crohn's, particularly a child, brings enormous challenges in the beginning.  You will have to learn to adjust and create a new life together. Don't try and do this on your own!

3.  Schedule Regular Family Meetings

Yes, we're all over-scheduled and spread thin, particularly when dealing with a family member with chronic illness.  Please make sure you are holding regular family meetings to check in with one another.  Tailor it to your needs, but stick to it!  Maybe every Sunday afternoon, your family gets together to plan the meals for the week.  Or maybe it's a safe space to hear from the kids how they feel about all these changes in their lives.  For me as a teenager, it was a good time for my parents to see if I was hiding any symptoms.  (I hid my Crohn's symptoms for years, which is why it was so terribly bad when I was finally diagnosed after going temporarily blind at school).   Maybe your family meeting can be the opportunity to pray together or practice yoga or meditation.  Maybe it's a chance to watch a silly show and laugh together.  Play board games, or simply just read in each other's presence.  Whatever you make of it, don't underestimate a regularly scheduled family gathering during difficult and unpredictable days.  

Managing life changes with Crohn's, but it also brings resilience, strength, and a new perspective on how precious this world is and our time in it.  Together a family can succeed and grow even closer!
Message me with your stories of how your family dealt with a diagnosis!

Crohnies unite!