Does Your Child Have Crohn's Disease?

B. A. Steele
Nov 18
9 min read

Updated: 5 days ago

Are you a parent (or guardian) with a child suffering from an IBD like Crohn's or Ulcerative Colitis? Well, I was once a child with severe Crohn's and now I am a parent - terrified of my young daughter ever getting diagnosed with my same illness. So, I would imagine you feel anxious, terrified, guilty, and even worse if your child has already been in chronic pain or diagnosed.

This is why I am going to tell you my perspective as a sick child experiencing this pain and how I managed life. Hopefully, you can take away lessons I liked/disliked with my parents and lifestyle to help your child cope better.

To help understand my disease struggles, here are the list of symptoms I had between ages 10 - 17. I did not think the symptoms could get much more painful or destructive, but my Crohn's through ages 20 - 27 proved me wrong.

Even with my symptoms and pain being high at a young age, my organs were still healthy and not destroyed by years of inflammation and scarring. I still had that childhood spirit to keep a normal social life like the kids around me.

If you have a child with Crohn's Disease, I hope to spare you some harsh experiences you may be afraid to go through or accept.

Sections To Skip To Because I Ramble: (These do not work yet, I am still adding to my blog - I WORK AS A FULL TIME MARKETING MANAGER AND I HAVE A CHILD, I AM TIRED OKAY)

A Child's Perspective of Chronic Illness
What To Do If My Child Has IBD
My Symptoms Ages 0 - 10
Crohn's Symptoms Ages 11 - 14
Crohn's Symptoms Ages 15 - 18
How To Treat Crohn's Flares
What Could Have Been Improved
Who Is To Blame For Our Suffering?
Tips For Children and Parents Coping With Crohn's Disease
How Doctor's Should Treat You And Be Treated
What To Do If Your Child Has IBD or IBS
Last Positive Takeaways

A Child's Perspective of Chronic Illness

Remember, every single person is different based on their DNA and how they were raised in their environment, so my perspective and experience will only resonate with personalities similar to mine, however, these takeaways can help you think of how your children may feel about their disease.

Depending on how old they are, they may not be the best at interpreting or understanding which words to use to describe their pain. Also, my Crohn's had many different pains and symptoms associated with it, so no single descriptor was right.

Additionally, I went to church on Sundays. So, I grew up Christian (but we weren't super religious, we became too lazy for church by the time I was a teenager). This is important because when severe pains would happen in my body for no reason on the daily, I looked to God for answers when my parents and doctors were stumped.

Here are many possible questions - that I feel are a completely normal reaction to have in this situation.

Darker Thoughts:

Why is this pain happening to me?
How is this level of pain possible to continue inside of someone?
How can God let this level of pain exist?
Am I in pain because I deserve this?
What did I do to deserve this level of suffering
Am I in pain because God hates me and is punishing me?

More Positive Thought Perspective:

Am I in pain because God knew I was tough and could handle this suffering better than another soul?
Did God match our souls with bodies that could handle everything in they struggle through? If so, I must be able to manage this due to divine rulings.

Thoughts That Ultimately Lead To Me Playing Down Severeness and Causing More Damage

There are people with worse Crohn's Symptoms than mine, therefore, my discomfort is not an emergency.

As you can see, there are not many good thoughts to focus on, so you're going to have to correct that when you notice your child believing the darker realities. Oddly enough, I always had a naturally positive spirit like SpongeBob did because that guy could always think of a happy spin on any bad situation.

A few years ago, I interviewed my Gastroenterologist for my personal, ongoing documentary because he retired. He affirmed and even reassured a few times that the perspective of his patients drastically helps with their symptoms. Better life quality results are higher in positive-thinking patients compared to his patients who had constant negative outlooks on everything.

Because life can have multiple truths existing at once, like my dark and light thoughts. I am not saying ignore problems or be in denial, just pick the truth that's most meaningful to your child's personality (you know their nature and nurture better than I do).

Due to the nature of how I was nurtured, I thought I needed to be tough and not complain, like typical American fashion. However, that only damages the individual and benefits the people that are supposed to be helping you.

What To Do If My Child Has Crohn's Disease or Ulcerative Colitis

Don't blame your child. Don't blame yourself. Don't blame your other children or significant other either (unless you or the other adult are abusive and stressing out the household 24/7 - then you need to get that under control. Having a hyped-up nervous system doesn't help with IBD flares).

I'm glad you are asking yourself that question, it means you care enough to accept your child has something going on in their lives that need extra tending to. My family, including myself, weren't in denial - but we did not treat my Crohn's Disease as serious as it was. This is mostly because I did not know how to communicate that and the healthcare industry did not do enough to help my parents understand what to focus on about my health.

Start With Your Environment

Believe it or not, and it took me until adulthood to completely surrender my stubbornness and comprehend that health starts with your home life and how you internally treat yourself (so make sure your child is as safe as can be at home and tell them how to love themselves).

I was naturally a perfectionist; therefore, I was naturally hard on myself. Whenever I would get in trouble, it would make me upset - but it all stayed internal with nowhere to release those bad feelings. You know that quick, anxious burn you get in your torso when you just got caught doing something you weren't supposed to? Well, that's what my pain would start to feel like overtime when my IBD became active.

Children Are More Resilient Than You Think, So Believe Yours Are Too, And Be 20x More Resilient Than Them.

To Be Continued...(Still writing, I just ran out of time. Please ask questions or feedback you'd like to share by commenting below)

As a parent in the United States, you do not get enough support compared to other adults in other countries. American's

Tip: Don't put words in their mouth when they try to explain or describe anything to you or the doctor. Let their mind explain how their body feels to them.

My Crohn's Disease Symptoms as a Child

Unfortunately, my Crohn's has shifted throughout my entire life. I've had symptoms, treatments, and inflammation change so much over the years that I think back to what treatment option I was taking to help me remember what happened in my past. Additionally, I didn't have my first surgery until I was twenty years old. So, I group my Crohn's journey by treatment and milestones, but for this blog, I have divided it by age.

This is because we will all go through the same ages, but we will not all experience the same disease. We are all unique individuals with genetics that make our personalities react to how we experience the environment around us. Others will treat their diagnoses more heavily than others - and that's not their fault. That's simply a natural reflection of their perspective or lack of coping method (that we must work on developing as parents and medical field workers).

My Crohn's Disease Symptoms Ages 0 - 10

I was born as a naturally anxious individual. I worried so much as a child of things going wrong. Not just me doing things wrong and getting grounded like a normal kid in the '90's and '00's, I had intrusive thoughts. As young as five, I'd think of cars crashing every time we would drive - I've never been in a traumatic car accident, my small brain was always like "BUT WHAT IF?"

Another intrusive thought that constantly made my stomach sour was WHAT IF MY FAMILY DIES AT ANY TIME.

And I didn't really share that out loud as these were taboo and sad to talk about. The few times I did I was told to calm down. But then thinking about other things just made me wonder how the world was made and why I am on this earth and why are there living creatures also living and also what is the meaning of life and also-

See what I mean?

My mother joked with me when I was age 8 or 9 that I would have a stomach ulcer by the time I was 12 with how much I worry about everything. And she said that up until I got my first ulcer discovered at 11.

I mention this because I think Crohn's happens due to a trifecta of things happening - but I am only the patient, not the scientist. I feel that having an overly anxious nervous system (which ends up weakening and misaligning our immune response cells), a poor diet (we ate "great" as in we followed the American Food Pyramid. But in college while studying marketing, that was just a marketing campaign. All the chicken and milk we ate as a child because my mom thought it was nutritious probably really messed up our growing bodies. There are a plethora of studies calling out processed foods causing auto-immune disease - we will not do anything about it though because these are big money-making industries.) and lastly, having some Crohn's triggering genetic inside you. My mother has Multiple Sclerosis, and my father has Psoriasis which are both autoimmune.

So, young me didn't stand a chance growing up in PFAS polluted Ashtabula County, Ohio with truck delivered meat full of preservatives from poorly cared for animals.

Growing up, I was a bit of a runt. I was normal intellectually and in sports ability (I did good in class and competing with people my age even being small). I had one growth spurt around 4th grade and started to get symptoms in 5th grade (age 10). But 6th grade was when Crohn's became more than just a bad stomachache or just acid reflux.

Starting around age 10, I would get these intense stomach cramps randomly, but only a few times a week. However, this intermittent pain was painful enough to paralyze me into fetal position and effect my entire body.

As time went on, these cramps started to cause frequent bathroom trips, fevers/night sweats, and chills. I would get acid reflex with many foods and still continued to get intense, paralyzing stomach cramps.

My mother somehow came across Crohn's Disease on TV and brought it up as a possibility to my Dad and me to bring up to my doctor. But my pediatrician at the time did not think it was that severe.

Dr. Garcia was my doctor at the time and when over the counter drugs like prev-acid and tums weren't working, we decided to do a scope. Mostly because my mom demanded that and a blood test to look specifically for Crohn's Disease (which is just looking for auto-immune disease tendencies.) The ulcer in my stomach made Dr. Garcia take accountability by saying, "You were right the whole time." to my mother.

As a kid it's funny to say, Mother is always right! But the underlining issue is probably doctors not listening to their patients/patient's parents - especially female ones - as much as they should. But I think my doctor learned that lesson and that didn't effect his treatment of me after which is the most important thing a doctor can do. Rainbow Babies Children Hospital in Cleveland, Ohio really had great healthcare faculty and management. I spent many weeks there and also long days there getting infusions and having doctors appointments or lab work and procedures all done there!