Day 12 #NHBPM – Advice for Newly Diagnosed Patients


National Health Blog Post Month!

Today I am using one of the bonus topics.  When I saw this topic I knew I had to write about it.  It is one of the reasons I started this blog.

To anyone reading this and are newly diagnosed with either Colitis or Crohn’s Disease, the first advice I can give is….Take A Deep Breath.  Your life is about to change forever.  You are entering a whole new world.  You will have a lot going against you and years of fights to have.  So take a deep breath.  Relax.  Stay calm because you have a very big and caring community behind you to help.

When I was first diagnosed in the 1980’s, I was given some pamphlets to read and sent home from the hospital.  I didn’t know what the disease was all about or what was installed for me over the years.  Now, there is the internet.  In a matter of minutes you can find out all the information you want, see tons of videos, and meet hundreds of people living with the disease.

So, now after you have taken that breath, take another and another.  Now sit down and create a journal.  Write down your symptoms, your medicine, your diet.  This will help you later on in life when you have problems.  Try to keep track of every medicine you take and how it helps or doesn’t help you.  Keep track of the side effects.

Now that you have done some work, let’s go have some fun.  Search the internet.  There are so many people out there to help you out.  There are a lot of video’s on YouTube to watch.  Some are funny, some informational.  Some are just video blogs.  After you have watched some of the video’s, come on over to Facebook.  There are tons of groups with people who have IBD.  You will soon find that you are not alone.  You will also find that most of these people will be very open to accept you in.

Now that you have had the time to see what the disease has to offer you, you have to take a mental step.  You have to toughen up.  This disease is a disgusting and descriptive disease.  Many people with it are very open and there is a lot of disgusting things.  If you are squeamish and don’t like dirty things…well, you will have to change how you are.  You yourself will go through some tough disgusting times and it will be easier if you are ready for it mentally.

After all of this your head is probably spinning.  There is so much information to take in.  You are probably wondering if you will ever have a normal life again.  I am happy to tell you that yes, you can.  I myself hold down a job, I have gotten married, and I live life to its fullest.  Some people do have severe complications and find it hard to live a normal life.  But nothing says that this is going to happen to you.  Stay strong and stay positive.

The next big thing you have to do is find yourself a really good gastroenterologist.   If you are under 18, you will need a pediatric gastro and in a couple of years find a regular GI.  It can take years until you find a good doctor.  Don’t despair.  They are out there.  I myself have had at least 6 GI’s before I found a really great one.

So now, do you feel better?  You may have a disease but know the disease does not have you.  If you ever have a question or problem, there is always someone out there to help you out.  And if you want, just ask me.  I will do whatever I can to help you because my motto for this disease is “You are never alone”.

Day 8 #NHBPM – Write about how you choose to write about others in your blog.


 

Here is a topic that I have never talked about.  In fact it isn’t one I had ever thought much about.  Thinking back over most of my post, I rarely talk about my friends and family.  Mainly I talk about myself.  When I look at my life and my disease, I look at how most of my life I spent in solitude with it.  No one in my family really understood what I was going through.  I remember a time when I was a teenager when my parents were practically dragging me out of bed to get dressed and go to school.  They couldn’t understand what I was feeling mentally or physically.  I don’t hold this against them because in all honestly, there was no way for them to understand.  I myself didn’t understand the disease.  As far as friends go, I hid my disease from them.  I opened up a little but never really let anyone into that part of my life.  My wife…my rock…she is the only one that has seen me at my worst.  She has been there for the good and the bad.  And yet, I don’t mention her much.  Hmmm, that has to change.

So, how do I choose to write about them.  Well, the truth is that I don’t think about it.  When a story comes into my head I write it out.  I don’t think about who I am writing about.  When I finally see a person appear on the screen, that is when I will stop and think.  I don’t want to make anyone look bad on here.  So when I do mention someone close to me, I will look at what I have written just to make sure it is all good.  Overall though, I try to keep my post about me just so I don’t offend friends and family.

Now, as far as online friends.  That is a whole other story.  I have mentioned other people before.  Honestly, I always feel weird doing it.  I try not to put last names and sometimes I will not put a name at all.  But some people are so big within the community that if I just put a first name you will know who I am talking about.  For these people, I don’t worry.  I won’t write anything bad about them, that’s for sure.  I know some people don’t like to be mentioned and if anyone tells me not to say their name, then I won’t.    I look back on the guest post from Sarah.  She told me at the last-minute not to use her last name…so I didn’t.

As far as the content that I write, I just write what pops into my head.  Sometimes nothing pops in which is why I can go a week or two without a post.  But I never focus on other people for my blog.  Overall, it is me and me alone that I want to focus on.  Well, except for my Follow Fridays..but that is to promote other sites where the people have already put their name out there.

Why I Write About My Health


National Health Blog Post Month!

So here is my first of many posts for Wegohealth.com National Health Blog Post Month.  The challenge for this is to blog about different things (they give us the topics) every day for a month.  So here is my first post and the topic is Why I Write About My Health.

It all started in 2011.  I was going through the worst flare up of my Crohn’s Disease in my life.  I was going to the bathroom a good 30 times a day and really couldn’t live my life.  I had been on numerous medicines throughout my life for my Crohn’s but nothing seemed to really help me.  By the time January 2012 came around, depression had set in.  I felt so alone with my disease and felt like I had no one to turn to.  I knew very little about my disease and knew no one with it.

I was diagnosed in 1988 and didn’t have the internet back then.  Whatever I learned about the disease came from outdated books and pamphlets.  For most of my life I survived and got through my problems.  My disease never really interfered with my life so I let it be.  Now, that it was taking over my life, I didn’t know where to turn to.

Like most people with problems, I turned to the internet.  In all honesty, I was so bad I thought I was going to need surgery and was looking up just what an ostomy bag was.  I had never seen one before and knew nothing about it.  I wanted to prepare myself mentally for what I thought was to come.  My first searches took me to YouTube where I found some great videos from other people with Crohns.  The people I found in these videos would go on to be my inspiration.

One thing these fellow Crohnies showed me was that no matter how bad things were, we could overcome the bad times.  I soon realized that I had ignored the internet all these years.  I started doing more searches and found so many websites.  I then turned to one of the biggest social networks out there, Facebook.  I started to see how people were coming together with their disease and helping each other.  I thought back over my life and wished that I had something like this growing up.  It was then that I decided I wanted to help out.  I made up my mind that I wanted to help others out and let everyone out there with IBD know that they don’t have to be alone like I was.

My first attempt was to make some videos but this wasn’t for me.  I felt very awkward talking to a camera.  I also couldn’t interact with anyone doing this.  So, I decided to write instead of talking and turned to Tumblr.  This was fine for a little while but I soon learned that the site was more for sharing Memes.  Finally I turned to WordPress and now I have this website.  I have my own space to share my experiences and a place for others to feel comfortable to open up about their experiences.

Here it is now at the end of 2012.  I have come a long way in such a short time.  My main goal from the start has not changed though and that is why I write about my health……I don’t ever want anyone with IBD to feel alone.