Crohns & Colitis Awareness Week – Dec 1 – Dec 7 2012


Ok, I lied in my last post.  Here is another one, but this will be short and sweet.

Starting tomorrow, we celebrate Crohn’s and Colitis Awareness Week here in the US.   So how is everyone going to show their support.  Here is one site that explains it best .  Everyone should wear something purple this week.  You can also wear one of your “Ask Me” shirts from The Great Bowel Movement, which is what I will do as I don’t really own anything purple.  If you don’t have one, come here to buy one.

Go out, have some fun, and spread the love.  While you do that, take some pictures and send them to me.  I will post as much as I can on here for everyone to see just how great we are at advocacy.

Day 30 #NHBPM – What a Journey


Here it is.  The last day of National Health Blog Post Month.  It also means the end of another month.  Seems like just yesterday I was sitting here thinking about what to write for my first post and wondering how I was going to do 30 in 30 days.

Looking back over the month I see I have come a long way.  I used to post about once a week and sometimes less than that.  I would look at my screen and not really know what to write.  It was definitely nice to have the topics given to us for the month so I didn’t have to worry about thinking about what topic to write about.

This past month has really opened my eyes.  I have read a number of stories on other blogs and have gotten to know some fellow IBDers a little better.  I also got to meet online some new people who really have some amazing stories.  One of them, Sarah, did an interview for me which was posted 2 days ago.  Sarah has come a long way in her journey and hopefully her little trip down the road will be easier now that she has our community behind her.

Speaking of journeys, I am thinking about the posts that were written about travelling with IBD.  I touched on the subject in 2 posts and actually had a lot of people without IBD reading them.  One response I got from my post on travelling was from someone with IBD and how on his bike ride through Spain he mentioned how he had to constantly stop on the side of the road.  I have heard so many of these stories lately that it has inspired me to start to help make a change in the USA. (See yesterdays post).

Not everything was happy with the posts.  I think about how open I became with my feelings.  I let out how I am still torn up inside over the loss of my father in law.  Writing about it helped me to realize that we all carry burdens with us, even when we aren’t thinking we are.   Accepting these burdens and acknowledging them help make us stronger in the end and it helps me to be a better activist.

Being an activist.  Something I never thought I would be.  In the past year though I have had the urge to help others.  My letter to new care takers is something I wish every new parent of a child with IBD would read.  It came from the heart and experience.  I was in such a dark place and no one knew it.  I had so much going on in my head that I didn’t want to share with anyone.  Now, I put it all down here for everyone to see and it truly makes me feel better.

Living stress free and free of burdens is something we all need to strive to do.  We all need to find an outlet to release our stress and my dog definitely helps.  Little Sable is such a great dog.  I don’t know how I ever lived without one before.  She can’t take away the burdens but she makes the stress just melt away.

And all of this brings me back to the first post of this series  -  Why I write about my health.  I write to relive my burdens.  I write so I can see my problems on paper and it makes it easier to tackle them.  I write to tell my story.  But most important, I write because of you.  I write for anyone that reads these post and realizes that they are not alone.

Thank you, whoever you are, for reading and possibly sharing these posts.  I hope I have eased your mind of your problems and taken some of your burdens.  I have come a long way in 30 days and have shared so much.  In 31 days, we have a new year.  Hopefully, we can lean on each other more for support and really bring our community together.  I look forward to the day when we can come together in a large crowd, stand tall, raise our hands in the air and say ” I have IBD and I am proud of it”.

Now that the month is done, I will probably take a small break from writing.  Holidays are coming and work is busy.  Life doesn’t stop though regardless of the times and if something pops into my head, you know I will be back here.  I look forward to the upcoming year and the challenges that it brings.

Day 29 #NHBPM – “If I could accomplish one thing (anything) in 2013 it would be…”


2012 is almost done and what a roller coaster ride it was this year.  I started the year in the worst flare of my life yet and I am ending it (hopefully) completely out of a flare and feeling better than I have in years.  So now that I am feeling better, what do I want to accomplish in 2013.

Wow, so many things cross my mind, but to pick one thing….for 2013 I want to help make a difference in the lives of people with IBD.  There are a number of ways to do this, but I have one big one that I am working on and I need the help with as many people as possible.  Sadly, this one thing will be limited to just the people in the United States, but for everyone else, feel free to lend some support.

I have talked with some people about my idea.  It started when I started reading stories from fellow IBDers.  I saw a pattern emerging of people having to stop on the side of the road to poop.  I myself have experienced this problem of driving on a long road to have to bathroom in site.  I know in more rural areas it is hard to have a bathroom in the middle of nowhere.  So, I got to thinking and already contacted my state senators.  I asked if it would be possible to get port-a-potties put on the side of the interstates and thruway’s.  Of course it isn’t as simple as it sounds.  A small rest area would need to be created so no one causes traffic.  But for those roads where you can go 20 miles without a rest stop or exit, this would be great.

What I would love is for anyone in America to start emailing and contacting your state representatives.  Let’s get the ball rolling.  Now I am not sure who exactly is in charge of doing something like this and would love any feedback if anyone knows.  This is a project that I can’t do alone and would love any help.  And this would be great to accomplish within 2013.  I know it is a slim chance that it will happen within a year, but I would love to show just how vocal we can all be for something we believe in.

Day 28 #NHBPM – Interview with a community member


For today’s post, I chose to interview someone I recently met in the IBD community.  She has a great website and I wanted to help spread her word around.   I won’t spend much time talking about it.  Instead, you can read the interview and explore her sight.  So without further adieu, here is Sarah from www.myjourneywithcrohns.com)

1. What is the name of your blog and how did you come up with that name?
The name of my website is called My Journey with Crohns (
www.myjourneywithcrohns.com) and what inspired me to come up with the name
was my last visit to the hospital. I was laying in that hospital bed and
was talking to my mom about it, and I said to her “Wow this is going to be
with me forever, such a journey to go through.” And from that I came up
with the name :).

2. What/who inspired you to create your blog?
My last flare/attack, which led me to my first “real” hospital stay,
inspired me to create this website. I had wished for a place I could go to
that obtained, not only a western medicine approach to treatment but
eastern, as well as stories of others who were diagnosed with crohns,
recipes, news updates, funny stories (always good to try to laugh) and more
. I also wanted a place I felt I could connect to someone who knew what I
was going through. I also had such an urge to help others who are going
through what I was going through. My heart goes out to everyone who suffers
with it because I understand how unfair it can be and I just have so much
compassion for my Crohns Community, so if I can help in any way then I will
do it. So with that, I began this website, but with that I also discovered
so many others that share their stories and tools through their own blogs.
That is the amazing thing about Crohn’s Disease, the community behind it is
incredible. That is why I also share on my web site others who have
website/blogs of their own and have their take on their experience with
crohns and things they feel they would like to share.

3. When were you first diagnosed with Crohn’s Disease and how did it
affect your life at the time?
I was diagnosed at the age of 14 but had suffered from symptoms since I was
12, after returning from a trip to Lebanon where I had got a horrible
stomach virus. If there is a connection there, who knows, but I think that
virus woke up this autoimmune disease with no off button.
In terms of it affecting my life, it definitely made being a teenager in
high school a bit more difficult. I would miss a lot of school and be asked
why I would appear to fluctuate in weight all the time. I am pretty sure
some may have thought I had issues with eating. Little did they know, but I
also never shared that I had Crohn’s Disease. I think I never shared for
two reasons. One, I was a teenager and it was tough enough dealing with the
issues that come with that, let alone to share that I had a disease that
made me poop a lot and gave me a lot of pain. Second, I didn’t really
understand what I had to begin with or how serious it was, so how can I
explain something to some when I did not even really know what I was
talking about. Back when I was diagnosed, there was still little studies
done about Crohns and it was not something ever talked about in society.

4. When was your Ah Ha moment when you decided to start speaking up about
IBD.
My Ah Ha moment was this year actually. When I got sick (again, but this
time really bad) and realized that this disease can really impact the rest
of my life if I don’t take it seriously. One of the ways for me to do that
was to open up about having it, because as crazy as it sounds, half my
family STILL had no idea that I had Crohn’s Disease till this year, 14
years after being diagnosed (let alone half my friends). I never shared
because I never thought it deserved to be shared because it was not a big
deal. I had it under control, at least I thought I did. The last 6 months I
dropped 20 pounds, going from 125 to 105, which is very noticeable and hard
to give excuses for. I became pale, lost all my energy and just wanted to
move back to LA to be near my family because I could tell something bad was
coming. I was right, I got an obstruction and I was hospitalized and at
that moment I realized, I have Crohns. Not my version of Crohns, where it
was a normal to go to the bathroom after every meal and have these mini
attacks, but CROHNS, the one that, if I don’t take seriously can really F
up the rest of my life! I hope I am explaining that right, hard to express
that eye opening moment but maybe some of you can relate to it.

5. Who are your inspirations in the IBD community and what makes them
special?
My inspirations are all my twitter friends and Facebook friends I have met
who have Crohns. That community is a combination of moms, dads, sisters,
brother, students, bloggers, teenagers and so on, who help support one
another and show compassion to those who are struggling with their Crohns.
This community has touched my heart and the work I do and hope to
accomplish, I do for them!

6. If you could meet anyone in the IBD who would it be?
I would love to be able to have a huge party with all my twitter and
Facebook friends who have Crohns, and meet them all! Sounds silly, but I
feel it would be a great party. I can not just pick one to meet!

7. What advice would you give someone who is recently diagnosed with
Crohn’s?
I would say that I know it may seem daunting and scary BUT you are not
alone and to reach out to others who have it, it helps a lot. Also know,
you will be ok. Especially during those scary/painful flares, to remind
yourself, that it will pass. I would also say that it is ok to feel all the
emotions that come with it and share it, it is important to have a good
support network that you can talk to about it. If you can not find that
support at home, you will definitely find it on twitter, Facebook and so
many other great websites that have great forums just for that.

8. Has Crohn’s Disease ever stopped you from doing something?
Only once, it stopped me this last time from continuing to work but it
became a blessing in disguise because then I would have never found the
time to create www.myjourneywithcrohns.com and this has become my heart and
love!

9. What is your biggest pet peeve about myths people believe about Crohn’s?

The most annoying thing I encounter is the common thread of people
thinking, “oh crohn’s is the pooping disease, that is why you are so
skinny.” It is the ignorance of others not knowing that it is way more then
“pooping” and that being “skinny” is not a plus from it (as it is usually
said in a way that implies, “oh that is why you are so lucky to be so
skinny.”) That is another bit of a pet peeve (going on a tangent for a
minute), because this past year, before I got sick, I was “fit”, I went to
yoga and palates every other day and was eating right. For the most part my
Crohns was under control, and the second someone found out I had Crohns, I
would always here “Oh that is why you are skinny” (in a way that sounded
like they got their answer as to why I looked the way I did and the world
made sense) and all I wanted to say was, “No, I actually work very hard to
take care of myself, this is not from Crohns. I do this to help prevent me
from getting a Crohn’s Flare.” There are two types of “skinny” with Crohn’s
in my opinion, and people do not get this. The “sick” skinny and the “fit,
I actually take care of myself” skinny. Sorry this just annoys me because I
have heard other friends with Crohns get that taken away from them, the
credit that they take care of themselves and thus may be “fit” from it.
Bottom line, people need to stop commenting on every pound you lose and
gain, especially because you never know the true story behind that person.

10. Do you think there will be a cure in your lifetime?

I hope so

Day 27 #NHBPM – If I Could Go Anywhere….


If I could go anywhere.  Well, who is to say I can’t do that now?  Maybe I will leave work, grab a suitcase, and head to the airport to jump on the first plane to leave..no matter where it is going.  Ok, that won’t happen.  But, there really is nothing stopping me from traveling with the exception of money.  I don’t have a bottomless bank account so I can’t go where I want.

I am one of the lucky ones.  My disease doesn’t prevent me from traveling (see earlier post on traveling with IBD here), or at least I try not to let it prevent me.  For the past couple of years now my wife and I try to go somewhere in the summer for a week just to get away and see the world.

So if I had to pick one place to go….now that is a tough one.  There are so many places to see that I don’t think I could pick just one.  For starters, I want to see Europe.  I want to see the ancient ruins of Italy.  Take a gondola ride through Venice.  I want to look out from the cliffs of the Greek Isles and see the Mediterranean Sea.  After there, I would love to head to Spain to eat some authentic tapas and sangria.  Then travel north to a place I have wanted to visit most of my life, France.

Since taking French classes in Jr. High school, I have wanted to visit France.   I enjoy French food so that doesn’t worry me.  I would love to walk down the Champs Elyse in Paris and take in the sight of the Eifel Tower.  I would even just enjoy standing on a bridge overlooking the Seine river.  After taking in the sights of Paris, I want to visit some of the vineyards to see just what makes french wine so great.  After I have had my fill, I want to go to Northern France to see the fields of Normandy.  I am a big WWII buff and want to see just where the invasion took place.  I would also visit all the heroes that are buried there to give them a thanks.

Wow, I can go on for hours talking about places to visit, but I notice as I am writing that France really sticks out on places to go.  I guess to answer the topic then, it would be France.  But I wouldn’t stop there.  I want to see most of Europe and Scandinavia, some of the Baltic states, some places in Asia, Australia and New Zealand, Hawaii, California and a number of US States.  There are areas in the Middle East and Africa I want to see also but I want to wait until civil unrest slows down.

Through all of this though, I never once think about my Crohns and how it will slow me down…because when it comes to my dreams, nothing will ever stop me from achieving them.

Day 26 #NHBPM – Why I decided to leave an online community


This was a tough decision I made.  I still go there sometimes but overall, I just ignore the site.  My decision to leave was tough and a sad one. 

I had been going to HealingWell.com for a couple of years.  It was one of the first online forum places I found and joined in regularly.  It is a place where they have boards for all sorts of conditions and of course I posted in the Crohn’s Forum.  I had gotten some great advice over the years and was able to help others as well.

I had always felt like I could be open and honest there.  In turn, I met some great people who really needed some help and support there.  The site was also regularly monitored so if anything got out of hand, it was corrected pretty fast.  Abusive people were closed out and topics that were banned were deleted fast if they were brought up.

So why did I leave if it was such a great place?  Well, to put it simply…it WAS a good place.  I no longer feel it is.  About  two years ago, a lot changed in the forums.  First people in there seemed to be more abusive.  Some of the posters seemed to pick on others.  They would push their “cure all” advice and never accept other opinions.  The Mods (moderators) tried to curtail these posters, but the owner of the site seemed to not care what was going on and didn’t stand behind the Mods to well.  Eventually these bad posters would start verbally attack other members.  I was so horrified by this.  We all have the same disease and we are attacking each other instead of helping.  WTF!

The final straw came when some of the Mods, who I had gotten to know and were truly great helpful people, were let go and replaced.  They weren’t even really told why.  When this came to light in the room…all hell broke loose.  The room was divided into two factions..those for the now former Mods and the abusive people.

The board used to be a loving caring place to talk open and honestly.  It fast turned into an abusive not caring advertising board.  This was not going to work for me.   I was sad to leave it because I had gotten to know a bunch of the people on there and was going to miss them.

Luckily, the best people from the board started a closed group on Facebook and I was lucky enough to be invited …. yeah!  So now I can still talk to them, help them out, be helped out and just enjoy their company without the abuse.  The more I stayed away from the site, the better I feel and the feelings I had towards the site has left me also.

Do I ever regret leaving that community….never.  I felt like I had to make a stand to make a point and I feel I chose well.  Now I won’t lie…..I have been back a couple of times to check it out, but I hardly go back anymore.  It just isn’t the same place as when I joined up.  I have since found other great place to go and other wonderful people to talk to (you all know who you are).

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.

Day 23 #NHBPM – Write about what it’s like to travel with your condition


Today, I take a little break from our regular broadcast.  I decided to use a bonus topic, as I am a little tired and needed a topic I don’t have to think too much about. 

Travel and IBD.  Just the word travel causes a lot of us to get our stomach tied into a knot.  Travelling with any chronic illness is not easy, but with IBD….whoa Nelly.  Just thinking about taking a vacation a million things go through my head.  So let’s take a look at some of the issues.

Bathrooms.  #1 on the list of things to worry about.  I am quickly reminded of the Humira commercial where the person is in an airport walking in circles with the bathroom right next to him.  That is my #1 worry when travelling.  Where will there be a bathroom and will it be clean.  When I fly, I worry about using the planes bathroom.  There is always a line and sometimes you can’t get out of your seat (thank you FAA rules).   I know when I travel, I get nervous so my stomach is on overtime.  Wherever I am in the airport, I have an eye out for the bathroom. 

Not everyone fly’s though.  Sometimes it is a road trip.  Lately I have been hearing more stories about people pulling over and pooping on the side of the road.  In the region I live in, there are rest stops along the interstates and thruways.  But for some areas, these don’t exist.  You have to wait until you come to an exit and then try to find a place.   The problem sometimes is we can’t wait for the next exit or rest stop.  When we have to go, we have to go.  For many with IBD we have seconds to make that decision on where to go.

Then there are cruises.   I love them and if I could take a cruise every year, I would.  Somthing about being out on the ocean.  It is so calm and peaceful.  Getting to the ship can be stressful but once you are on the ship, don’t worry.  I know many people will think..but what will happen.  Are there enough bathrooms?  What if I get sick?  First, there are bathrooms everywhere on a ship.  I have never had a problem with that.  Second, if you do get sick there is a doctor on board.   As long as you don’t have any major issues like a blockage, they should be able to help.

So how do we cope with these issues.  Well, first,  a lot of us have travel bags.  In them are toilet paper, sanitizers, extra underwear, etc.  I have talked about this in previous posts as well as other bloggers have talked about them.  These bags are life savers for many of us.  In them are another life saving item that we use…Immodium.  When you are going 10 times a day normally and then more from nerves of travelling…Immodium can help us cope.

I know to some of you this seems really sad and you are probably wondering why we even bother to travel.  I can tell you from experience…it is all worth it.  We might have to use a bathroom more and have a little more anxiety, but overall we want the experience of travelling.  We want our vacations.  I remember this past summer I went to the Dominican Republic.  So much of the trip scared me.  I didn’t know what to expect once we got there.  Would I be able to find a decent bathroom?  Will it be clean in such an unclean place?  Would the food and water affect me?  So much worry.  But once I got there I tried to take in the scenery and just relax.   In the end I had no major issues and all the worry was in my head.

So for anyone with IBD….I say try to relax.  Yes we have issues, but it is nothing we haven’t experienced already and we all know we will get through it.  When you travel, try to focus on the good things and the fun you will have.  Everything will fall into place.

Day 22 #NHBPM – What Am I Thankful For?


Today is Thanksgiving in the United States.  It is a time when the Pilgrims came together peacefully with the indians in the area and had a feast for the fall harvest.  Over time, it has become a holiday where we look back at our lives and give thanks to the things we have.

So what am I thankful for this year?  There is so much to give thanks to.  I can give thanks to my doctor.  With so many unsympathetic doctors out there that don’t care about their patients, mine took the time to listen to me, do reasearch on his own time and put his trust in my hands to let me try a different course of treatment for my Crohn’s.  So far it is working so thank you Dr. Potack.

I want to give thanks to my wife.  She has stuck by my side through the good days and the bad.  Through flares and scopes.  When I was sick and depressed she was there to tell me everything will be alright and to offer advice.  She supports my choice to go gluten free which was a life saver.  Thank you Heather.

I want to thank my dog.  She is a stubborn dog that likes to bark at the slightest noise in the building hallways.  But she is quick with her hello’s when I come home and is there to cuddle me when I am sad.  She gives me unconditional love when  I need it most and never asks for anything in return.  She knows when I need to be cheered up and will try to play with me.  I couldn’t ask for a more beautiful soul.  Thank you Sable.

This year I embarked on a new journey and started talking publicly about my disease.  Out of a bad flare came a new life.  I have started this blog and have met a lot of great people.  I have become more involved in helping others with IBD.  But without the help of others, I would never had taken the first step.  I have thanked many of these people before, both privately and publicly, but today is special so I will do it again…because without their support and help, I wouldn’t be doing what I do.  Thank you (in no particular order):

Kelly – www.sickgirldiary.com 

Sara – www.inflamed-and-untamed.com

Alyssa – www.loveformutantguts.wordpress.com

Stephen – http://sdempster.com/ (The Road Less Traveled)

Jackie – www.bloodpooptears.com

Amanda – www.stopthinkingstartwriting.blogspot.com

Adam – www.IhaveUC.com

Jason – www.crohnsdiseasesn.com

This is just some  of the great inspiration I have had this year.  There are so many more people to thank that I don’t have the space to thank them all.  So my biggest thank is to the IBD community.  You have all opened up your heart to me and gave me so much love and inspiration.  No one will ever really understand what it meant to me.