Happy New Year – A look into 2014


Wow, it has been awhile since I posted anything.  I am sorry for that everyone.  Life has been real busy, especially at work.  A lot of good things are happening though so even though I am busy, it is a good thing.

I recently started working with The Intense Intestines Foundation (www.intenseintestines.org).  I don’t want to say just yet what I am working on but I will definitely reveal that in a couple of months once all the details are worked out.  I will say it has to do with supporting others with IBD and I can not wait to get started.  I also have been working with The Crohn’s Journey Foundation (http://thecrohnsjourneyfoundation.org/).  Again I can’t say just yet what it is I am working on but that will be revealed next month if all goes well.

So how was everyone’s holiday season?  Did you have fun and do anything special?  I know a lot of people I talk to online spent it in the hospital.  Myself, I spent it on a cruise down south.  My wife and I took a Christmas cruise to Florida and the Bahamas.  It was reflecting on the cruise that got me to write this blog.  I was wondering how many of you with IBD find it hard to travel and go somewhere? 

This was my first cruise where I am gluten free.  We had done some research and had read that there would be plenty of options for food for me.  I really didn’t worry about it.  I should have.  My first clue was when we first got on the ship and went to lunch.  The only thing listed as gluten free was the mashed potatoes.  Good thing I know what normally has gluten in it so I was able to play it safe.  This theme of lack of gluten free items would carry on throughout the cruise.  Most of the desserts were not gluten free.  I started to get annoyed because the reality is that it isn’t hard to do.  They did have GF bread and it was ok.  My dinners were altered to be GF and I was happy for that.  But for desserts, they could have made a flourless chocolate cake.  I am sure many people would eat it.

Overall, I had fun on the cruise.  We went to Cape Canaveral in Florida, Nassau Bahamas and their private island in the Bahamas.  I was lucky and had no major issues with my Crohn’s.  I was able to go out and have some fun.  I even was able to indulge in a little alcohol…ok…it was more then a little.  I did worry at times that I might have some problems but luckily my guts stayed quiet.

I would like to know what some of your tricks are travelling.  Do you pack extra clothes?  Do you take certain meds to calm the guts?  I remember take Lamodal on one cruise about 3 years ago.  I helped me enjoy myself and gave me a life off of the toilet.  Thankfully, I didn’t need it this time around.

Well, vacation time is over and it is a new year.  I think this is going to be a great year.  I myself am working on so many IBD related things.  Besides IIF and TCJF I will be working with GYGIG again in June.  I might do the CCFA Takes Steps this year.  So much to look forward to this year.  I hope to post more often and will let everyone know about everything that is going on.  I do want to say that if you live in the NYC tri state area, we have some good things for you this year.  But that is another post for another time.

Take Steps 2013


Yesterday I participated in the Take Steps for Crohns and Colitis which is run by CCFA.  Better yet, I volunteered.  Last year I was wiped out from walking so I decided this year I would help out instead.  Ok, that took its toll on my body even more. Today my back and neck are achy and my feet are sore.  But it was soooo worth it.

One thing I like about the walk is the location.  I was helping out at the Liberty State Park walk and the views from there are breathtaking.

 

Freedom TowerStatue of Liberty 

 

 

 

 

 

 

 

 

After I take this in I head over to my assigned area, the food tent.  This year I decided to put my talents to use.  I helped get donated food for the walk.  I was able to get some coconut water, vitamin water, Smartwater, fruit and chips. 

 

Food tent 2

 

Food tent 3

 

Food tent 1

 

After we got set up, I decided to look around before it got real busy.  There were tents for some drug reps (Humira, Remicade),  Team Challenge sign ups, the Kids Corner with bouncy house, and the DJ.  All was quiet before the storm.

 

set up 1set up 2

 

 

 

 

 

 

 

As you can see from the pictures, it looked like a storm was coming but luckily, the rain held off.  The wind was pretty powerful though.  With the almost 90 degrees and humidity, the wind was refreshing.

At 4:00, the walkers were off for a 2.15 mile walk.  When they came back that was when the real fun began.  Our tent got mobbed.  Aside from what I brought, we also had sandwiches, cookies, granola bars, orange juice and spring water.  Pretty much everything went.

One thing I have noticed about these walks, and it disturbs me a little is that everyone chats but no one really talks about the disease …. which is why we are all here.  I was talking with one of the volunteers and he asked why I was there.  I mentioned I had Crohns.  He said his son has Crohns and that was it.  No further discussion.  It really hit me that although everyone comes out to bring awareness and come together, no one really wants to talk about it still.  My only conclusion is because it isn’t just the patient but friends and family there also that they don’t feel like opening up.  I can understand that.

This up coming weekend is Get Your Guts in Gear.  I know a lot of the volunteers that will be there.  I know we will be talking about it a lot more but we will also have fun and talk about other things.   2 weeks and 2 awareness events.  It is enough to tire these old bones.  After the walk, I feel achy.  Hate to see what next week brings.   Stay tuned for a recap.

 

shirt

World IBD Day 2013


HAPPY WORLD IBD DAY!!!!!!

The time has come once again for us to celebrate our disease and spread awareness.  This year I was inspired by CCFA’s poor attempt at marketing IBD.  As you know from previous posts that I was not for their Escape The Stall campaign.  I felt their campaign didn’t show just what our disease is or can do.

So, to keep this brief, I made my own video to show just what this disease is to us.  I hope you enjoy it.

 

My Take on the Escape The Stall Ads


Slide 9

 

Yesterday I read a blog by another blogger, Marisa, which can be found here.  This lead me to a post written by Sara found here

The reason I mention these two blogs is because they kind of opened my eyes to the new campaign going on by The Crohn’s and Colitis Foundation of America (CCFA) called Escape the Stall (http://www.ccfa.org/escapethestall/).  The face being put to the campaign is Amy Brenneman who is known from such shows as Private Practice, NYPD Blue, and Judging Amy.

First, I applaud Amy for coming out of what I call the IBD closet.  It is great to have another face to the disease.  I am also very happy that the CCFA is finally putting ads and stories out there nationally.  IBD is usually talked about quietly in dark corners.  CCFA is now bringing out into the open and I am very happy and thankful for that.image

I had read the reason for why they went with this campaign and at first it didn’t bother me.  I admit I have used bathroom humor in the past as I have a page on Facebook called Bathroom Talk.  But as I look into myself, I know I did it as a way to cope.

Over the past year I have learned so much about IBD.  Crohn’s and Colitis is no laughing matter.  Yes, a lot of us use laughter to cope with our chronic illness, but in no way should the illness be looked upon in a funny way.  As the ads show, we spend a lot of time in the bathroom.  Anyone with IBD knows this is a reality..but it is a small part of the disease.  And this is where I come to the realization that the CCFA ads are not a good idea. 

So many people with IBD are sick.  They have no energy.  They can’t do simple things like get out of bed.  Some people are in constant pains.  Belly pains, joint pains, muscle pains…just overall pain.  There is nausea, fevers, rashes, and eye problems.  We take horrible medicines that give us really horrible side effects with some of those being untreatable cancer.   Many people with IBD have numerous scars from many surgeries.  Some people spend months in a  hospital bed hooked up to tubes.  Many suffer from drastic weight lose and look like walking skeletons.

Now you are probably thinking,  “Wow, people with IBD have it bad”.  Well, yes we do.  But looking at the new ads, all you would think is that we spend a lot of time on the toilet.   When people put out ads for cancer we see bald people hooked up to chemo.  When there are ads for emphysema we see broken down people hooked up to oxygen tanks.   The no smoking ads in NYC show people with amputations, trach tubes, and just looking horrible.  So where is our graphic ads?

When it comes down to it, seeing an underweight person with IV’s and an NG tube laying in a hospital bed with some surgical scars would be more effective than saying “Hey this person poops a lot.  Help them out”.  I recall when I first got diagnosed as a teenager with Crohn’s that my doctor told me that I would most likely have at least one surgery in my life due to the disease.  Where is that fact in the ad. 

I am grateful for all that CCFA has done and continues to do.  I will be volunteering this year for their Take Steps walk and hopefully for Camp Oasis.  But I have to say that I am shamed by their new and first national ads.

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.

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.”