Crohn’s disease almost killed my kid. We were thrown into a world wind of misconception and lack of information.
Being ignorant to the fact allowed doctors at children’s Hospital to take advantage of this situation and use him as a genie pig.
But over time I learned that there is a way out of this. There is a way that we can work on him without invading his body with meaningless surgeries, and nonsense medications that cause him to space out in the middle of a conversation.
The pain that I would see him in would crush my soul.All I wanted to do was take it away. I would get angry to the point where I felt I was taking it out on him The road was rocky.
Most of my family would ask, “is crohn’s painful?”, and I would be like what the hell do you think. Isn’t it obvious that it doesn’t feel good to him. The anger again.
Now don’t get me wrong, the Remicade, and the Humira were bitter sweet medications. They brought calm to his body. But the side effects alone turned me off.
And the altercations that it made to his brain, pissed me off. To me, there had to be another way.
The lioness in me roared, and I began to rear my ugly head. I was no longer timid, or scared of what we were facing.
I was learning how to arm us with the information needed to support any theory that I might have.
And the one theory I have always pushed was that chronic inflammation of the digestive system must be associated with food.
I think all things work together to create harmony in your body. So when it comes to flare treatment, we have to think outside the box.
It only makes sense in a way. This was my starter theory. And although I was still new to the situation, it was a common-sense theory that I would have through doctors would have gone for.
For a while I pushed this theory, and for a while it worked when it came to my son. It is still a part of what I believe, I’ve just adjusted when it comes to my approach.
Fight Like Hell, Fight For Kids with Crohn’s
Chronic inflammation of the GI tract is something that almost a million people are now suffering from.
So for the doctor to tell me that it was genetic, I was skeptical. It’s easy to tell someone something when they have no damn clue what it is you are even talking about.
That is exactly what Children’s did to me and my family. We were suckas for a while, but then I sat in a room and I cried my eyes out.
I got angry, I got scared; and then I got ready. I picked up every book I could, talked to everyone inside and outside of the medical field and I got ready.
We got ready to fight for this kid with Crohn’s. Which meant we needed to start training him for the fight of this life.
I got ready to prepare my son, husband, and middle child to fight. We refuse to be victims, and we refused to be a part of the cycle.
I refused to not be involved when it came to the decision making of my child. I refused to allow someone to take control.
And that was exactly what was going to happen, if I didn’t arm myself with the information needed to FIGHT.
I realized as my son’s treatment continued, his doctors didn’t know any more than I did. I would ask questions, and they would have no clue.
I would address a situation and they would have no clue what to say. But one of the things that pissed me off the most is that 90% of the information that I currently have under my belt was not brought to my attention by his doctors.
I say this to say, that if you are a parent with a child who suffers from chronic inflammation of the GI tract, the best thing you can do for that child is be their sole provider FIRST, and work with the doctors to make their lives better.
The best thing you can do for your child is to learn about what it is they are going through so that you can face any challenge that comes your way.
I remember how my husband and I used to RUN TO CHILDREN’S whenever there was a flare up.
I can’t tell you how long it’s been since we have had to do that. Flare ups don’t scare me, they challenge me to make his life better as quickly as possible.
There might come a time when we won’t be able to access these high-priced physicians. And if that time comes, we must be prepared to take care of ourselves.
Children’s Hospital has done so much damage along the way during the times he was suppose to be healing, that I have lost a large amount of respect for them.
They have threatened to take my child away from me, which did nothing but make me roar louder.
They realized that I wasn’t playing, or going away. And that nothing they did could break up our strength. My husband and I’s goal was to find a better way to make him better.
He has come a long way. And it has been a journey that has proven that hard work, persistence, and dedication can deem results.
I’m not here telling anyone that learning and facing crohn’s is easy. It was the scariest, and most difficult thing I think I have ever had to do.
Once you decide to put your child’s life into your hands, that’s when it gets real. Trying to reduce inflammation in the colon in a 7 year old is hard as shit.
I realized that if I never had introduced those vial and unhealthy foods into his life int he first place, we probably wouldn’t have been in this situation.
But the one thing that I don’t allow myself to do is become afraid of failing.And I’ve taught myself to not blame myself, but to be the correction for the future.
If something isn’t right, or if something has gone array, then I have no problems calling his doctor and asking questions.
Don’t be afraid to take the bull by it’s horn and do what you have to do for the sake of your child.
Don’t ever feel like there aren’t any other options in this world,because there are. Always know that know one is going to love and care about your child more than you are.
So always be the one standing on the front lines, and don’t be afraid to fucking say NO.