Day 25 #NHBPM – How have your goals as a patient / advocate / person evolved?


Well, we are in the home stretch on the blogs and this is one that will really make me think.  In the beginning of the month I didn’t give much thought to my post, now, I am spending probably too much time on them 🙂  This one will be no different.
When I first started down the IBD road, I didn’t give it much thought.  I went through my years of being sick and I never had a goal in mind.  I just wanted to feel better and live my life.  I didn’t even know too much about the disease.  Growing up in the 1980’s the only resource around was the local library and since there wasn’t much written about Crohn’s there wasn’t much to read.

Over time, decades would pass.  During the 1990’s,  I started feeling a lot better to the point that I went off all medicines.  Since I didn’t know much about the disease, I didn’t know that this was a bad idea, and I didn’t see any point in learning more about my disease.  I went through life ignorant of what I had.

With the coming of a new century, my life changed.  In the 2000’s I started seeing a new GI who wanted me back on meds.  This started my downward spiral with medicine.  For some reason, I still never really felt the need to learn more about my disease or treatments.  Time would go on and living 20 years would come with me still ignorant about my disease.  I would go to some symposiums by CCFA and would read things here in there but by now I chose to just play dumb.  Why not?  I have been getting by without having to do much research.

By 2011, my life with the disease would change, and so would my goals.  My father in law who suffered with UC in his life and had a ostomy bag passed away.  This hit me because I looked up to him in my battle with IBD.  He was an inspiration in how he lived his life.  Second, I went into my biggest flare ever.  I started going through depression and felt like my life was going downhill real fast.

I started to feel useless in my battle.  After 23 years, I felt it was time.  It was time to finally find out just what I am living with.  I went online and realized just how much information was out there.  My life was about to change.  I was no longer going to be a patient, but an advocate.  I won’t go into the big details as I have talked about them a number of times already in other posts.   You know who I found online to be inspired by, who I learned from and just who could really help me.

After all is said and done, this blog now serves as my sounding board to help others.  I have gotten some really good feedback to show that what I stated out to do is working.  My main goal now is not educating myself but educating others.  I want to let other IBDers know just what options they have with their treatments, how to find a good GI and mainly just let them know that they aren’t alone with their disease.

My Facebook friends list has more IBDers than real friends.  Same for my Twitter account.  I talk to more people with UC and CD then I have ever.  Sometimes I learn some new information from them.  Sometimes I help them.  As 2012 draws to a close I look at where I have come from and how far I have traveled this year.  I went from feeling depressed, lonely and useless to being strong, confident and helping others.  I couldn’t have done it without the support of my fellow IBDers.

As for the future, I don’t know what it entails.  I want to become more active with CCFA.  I will probably work Camp Oasis this summer.  Anything else…I don’t know.  I guess we will have to wait and see.

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Day 24 #NHBPM – “If I had more than 24 hours in a day…” (Or unlimited spoons or funds)


Wow…more time on my hands.  What would I do?  I know of some other people with IBD that will love this post because they are limited to what they can do at the moment because of their disease.  I however am not in that place right now.  That doesn’t mean I don’t wish I had more time in the day.

So what would I do?  Well, first I spend so much time right now working on this blog.  It takes up not just time but energy.  An extra hour would be great to help focus more on my words to get them right.  I am usually distracted because I have the TV on or the wife is wanting some household chore done or something in life is just getting in the way.  More time means…more time.

I would also like to do more volunteer work for the IBD community.  I want to help with CCFA more.  Because of transportation issues, any office is too far.  The NYC office is close but I rely on mass transit so it takes forever to get home.  New Jerseys office is just too far of a drive at this time.  I don’t want to spend the gas.  More time in the day would give me the time to spend for travel so I can help out more.

More time in the day would also mean more time with my loved ones.  I can spend more time with my wife.  There is nothing better than having more time with the person who you love.  In life we never spend enough time telling someone how much we care about them.  This extra time would help with that.

And then there is my online family.  Facebook, Twitter…I love you all but don’t have enough time and sometimes energy to write to everyone.  I wish I had an extra hour or two to connect with my IBD family to see how everyone is doing and help out where I can.

Even now, as I end this blog I wish I had more time.   But reality is 24 hours.  So let’s start the day.

Feeling the IBD Love


This week I was asked to do a guest post for a great website..which leads into this weeks “Follow Friday”.  Usually the advice I give can be used by everyone but I normally have adults in mind.  Well, this week I am here to talk to the youth.

So, this week I want to single out a great website that is run by The Crohn’s & Colitis Foundation of Canada or CCFC.  It is a site called The Gutsy Generation: (http://www.thegutsygeneration.ca/site/c.buLTK7OQLpK8E/b.6247843/k.C798/Connect.htm).  The post I did can be found on their blog site which is http://thegutsygeneration.blogspot.com/.

Now I am not talking about them because I did a post for them.  I am talking about them because they target a huge audience….the kids.  Looking over their website, I was reminded of  my own youth.  I was 15 when I was diagnosed with IBD and essentially that is when my childhood ended.  I remember the feelings and the pain like it was yesterday…yet it was 24 years ago.  When I was first asked to write the post, I didn’t know what to write.  I wanted to connect with the kids today that suffer, but wasn’t sure what to say.  When all my memories started to flood me I said to myself….”That is what I am going to write”.  I said from the beginning that I wanted to help people know they aren’t alone with their IBD and that was what I was going to do.  By showing the youth out there that even us adults have gone through the pain and hurt…and survived it….I can help them to know that they also will survive.

It has been 2 days since I wrote the post and I still keep thinking about those first days.  So much has changed thanks to the Crohn’s.  I was a shy kid growing up.  I didn’t have the best self-esteem and I was very unsure of myself.  I was an average student and never knew my purpose in life.  College helped me a lot to discover who I am, but my Crohn’s helped me become who I am.  I had to get courage to overcome it.  It helped me to speak up and speak my mind.  I directed me where to go in my life because as we all know, a lot of what we do, we do tailored around the disease.  When I got sick last year and then started doing research on IBD, again it moved me into a new direction.  Here I am now, toting my wisdom and trying to help others.

I grew up alone with the disease.  Back in the 80’s no one knew what IBD was.  Worst of all, there weren’t many treatments for it.  There was no internet so it was very hard to find people with the disease.  All that I learned about my disease I learned through pamphlets from The Crohn’s and Colitis Foundation of America.  They helped…but never really taught me about my disease.  I grew up ignorant of what I have.

Now, things are different and websites like The Gutsy Generation exist.  No one has to go at their disease alone anymore.  All they have to do is reach out.  The last paragraph of my post for TGG sums up my feelings and I will end this post with that paragraph:

“As I look back into the mirror, I can still see that 15-year-old.  The lines are growing.  The hair is changing.  But I can see him in the eyes.  I see the twinkle.  I have made it 24 years with the disease.  No matter what happens…I can live life.  The disease hasn’t beaten me…and it never will.  And that is the best advice I can give anyone….Never let it beat you…you are too strong.”

Thank you CCFA for the exercise.


On Sunday, June 4th, I took part in the Take Steps for Crohn’s and Colitis organized by The Crohn’s and Colitis Foundation of America.   It was held in Liberty State Park in Jersey City, New Jersey.  I never realized just how historic this park was until I got there.  There boats for tours to Ellis Island and the Statue of Liberty leave from here.  What makes them historic is that immigrants used to come here and catch a train to either New York or further into New Jersey.

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When we arrived, it was raining a little, but not too much.  By the time I reached the check in tent, it had stopped.  My wife and I checked in and then walked the grounds waiting for the start of the walk.  I had brought my dog along because she likes walking and could use the exercise.  While my wife rested, my dog wanted to start and ran around.

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At 5:00 they called everyone to the start line and we were off.  Now, I knew ahead of time that the walk was 3 miles and in the past I would have had no problem with that.  I didn’t realize just how far it is until I started walking.  We walked 1.5 miles one way, turned around, and walked back.  At the 1 mile mark, my legs were starting to feel the burn.  My little dog seemed to be holding up better than me. 

During the walk, the sun was shining and it was beautiful.  On the way back though, the sky got dark and the rain came.  My wife was smart and had an umbrella but I forgot mine.  I had a poncho in my backpack, but was too tired to take it out.  As we reached the base camp, the rain stopped and we were greeted by a great site.

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Overall, I had a good time.  My legs were aching later that night and I was beat.  My dog looked beat also and slepted real well.  CCFA does this walk all over the country.  This year was my first walk and I raised $506.  I was worried I wouldn’t raise any so this amount shocked me.  I plan on doing this again next year and hopefully I will be in better shape.  The best part of the walk was seeing all the support for us sufferers of IBD.  One group raised over $27,000.  The love is out there for us.  YEAH.