My Child Has Ulcerative Colitis – a book from a parent heart

Bellow I post the first chapter from the book I’m writing. Some parents might resonate with this …

This book is my very personal project which might or might not see the print but it is important for me and it wants to be a bridge to all parents of IBD children.

DSC07022

Instead of Introduction

Motto:

There are things that can be changed and should be changed. There are things that cannot be changed but accepted as they are. The wisdom is to differentiate between the 2 of them.

One of the things that cannot be changed is the past. Therefore living in the past, feeling guilty for what you have or haven’t done in the past represents a waste of energy. So, rather than living snowed under with guilt for past issues it seems to be more proactive to look for the future.

The very thing parents “must do” before anything else is to evaluate what they think was the trigger, to feel as guilty as they want for a moment, an hour, a day or so and then to let it go. To forgive themselves is the first and most important step to be done because is the basis of going forward on sound foundation. If you’re overwhelmed by guilt every time your child is in pain or going through invasive procedures that in turn will make you irritable. Moreover, when trapped in the guilt scenario people don’t have enough free space in your mind to think of solutions, visualization or simply look for answers.

Yes, your child was diagnosed with inflammation in the gut (either CD or UC). While it might seem that this is the end for him in having a normal happy life be assured that this is totally not the case.

Beginning of the rollercoaster

“Victor was the perfect child Emma and Tom always wished for. His brown eyes were seeing inside your soul, he was a happy and playful child.

At one and a half he was their world, Emma’s most perfect project she’s ever had.

When Victor started eating sand and dirt, they thought he was going through a toddlerhood stage. Boy, innocent and uninformed they were!

Victor started having loose bowel movements many times a day, sometimes with blood in it. This determined Emma and Tom to find the answers seeing various doctors.

Six months later and many doctors later, they’ve finally seen a pediatric GI. The GI sent him to various blood tests. All of them came back with very bad results.

From that day on their life never been the same. Victor had to be hospitalized for 3 days with severe anemia and severe IBD symptoms. He needed a blood transfusion and then an endoscopy/colonoscopy.

When Emma and Tom received the Ulcerative Colitis diagnostic, they were still so naïve to look with faith and hope to the doctor for a cure. They didn’t know a thing about IBD but the 18 months treatment with strong drugs that doctor proposed rang a bell.

A search on the internet sent them into their worst nightmare. The prospect of having their child living with a stoma or being on strong medication for life sent them into deep depression and a sense of urgency in doing things now. The rollercoaster began.

Those Emma and Tom it’s us!”

What Parents might feel

Right after a diagnosis was made for their child parents might feel relieved in the first instance but usually they will try to get informed about the condition and will be shocked. The severity of symptoms, the side effects of the strong medication used to control the disease; the trips to the specialists and to the hospital have the potential to disturb even the most balanced person. Parents of newly diagnosed children will most probably start having strong feelings guilt, fear, sadness and despair. They will probably feel overwhelmed by the responsibility of caring for an IBD child and will feel completely out of control and helpless in facing the disease. To feel that you are not in control of helping your child is not an easy feeling to be carried.

Specialists say that there are certain stages a person goes through when receiving a diagnosis for a severe disease. When the diagnosis is made for your child the anxiety is even higher.

The first stage of the despair is DENIAL. Generally, in stage one people deny the severity of the chronic disease that has been diagnosed. They start with magical thinking and believing that the condition will go away “magically”.

It can also appear excessive fantasy believing nothing is wrong and on waking up in the morning the illness will be gone.
box insert – A very important aspect of my stage of denial was to search for miss-diagnosed Ulcerative Colitis cases. I was looking for a validation that the diagnosis is wrong convinced that that was the case for my son. While there are many miss-diagnoses for IBD no one said it was easy to get rid of the bugs or viruses responsible for the IBD like symptoms.

IBD appears to be one of the common miss-diagnostic doctors make. That happens partly because there are so many other things that can mimic IBD and also because the medical system because of the cost involved has a protocol of doing only a limited number of analyses.

Box Hint – It is always a good idea to exclude all the other potential causes of the loose bowel movements and bleeding. In Chapter 6 are described the recommended tests and analysis.

The other stages follow at variable times depending on how prepared and informed is the person. The stages of the despair and ways to cope with them will be discussed in a later chapter of this book.

What this book is

Western medicine approach is to categorize and treat symptoms according to categories. This approach loses the benefit of havingeach individual unique.

In saying that no one tries to minimize or criticize Western Medicine avenues to treat. All it’s said here is “what if there is a different way of seeing things?”

This book will try to explain some of the outside of the square views, the difference between Western Medicine and logic human way of thinking. It neither attempt to give medical advice nor to encourage people to stop medication. It only encourages readers to think for themselves, to use all the available resources to create a tailored individual solution for their loved ones with Ulcerative Colitis.

A special section is dedicated to parent’s feelings, stages of the despair in finding out about the lifelong battle their child is starting on and how to cope it those feelings.

Last, but not least, there is a section about Planning for success for living a natural , full and happy life despite or maybe because of the inflammatory Bowel Disease. Isn’t that all we want for our children? Or for our loved ones? Or for ourselves?

The extraordinary news is that there is so much possibility out there to successfully manage IBD that nobody will ever look back at being stuck with despair because of the medication and its side effects.

The not so great news is that the readers will have to think and act for themselves as no one can do it for them. This book is only giving some guidance of where they can start but the journey is all personal and unique for each individual.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: