Hello I.I.F. Supporters,

As many of you know, I suffer from severe Crohn’s disease and have an ileostomy. The journey of my life so far has not been the easiest, but I believe in living life to the fullest and not letting my disease get in the way of that goal. Now, I want to impart what I have learned about overcoming the obstacles in my path to live as normal and active a life as possible to others with IBD conditions.

It’s that time for the climb again! The Intense Intestines Foundation is excited to invite you to our 2nd Annual Climb for Crohn’s & Colitis event. (You don’t have to climb to come down and have a good time)

In honor of World IBD Day 2013, we will be hosting our 2nd Annual Climb on Saturday, May 18th at The Rock Club in New Rochelle, NY. Similar to last year, the event will include open climbing, a silent auction, an after party with food and beverages, and raffle prizes.

The raffle includes prizes from the North Face, EMS, Wilton Outdoor Sports, Phillips, Alue Optics, Noelle, The Rock Club, the IIF, and More!

Tickets can be purchased in advance at a discounted rate of $45 here:

http://2ndclimbforcrohnsandcolitis.eventbrite.com/

Tickets include: climbing day pass, harness, shoes, instruction, ONE drink during the after party, ONE raffle ticket, and food during the after party.

The Rock Club is the premiere indoor rock climbing gym in the area, and we are excited to be invited back for our 2nd Annual Climb to raise awareness for Crohn’s disease and ulcerative colitis.

All proceeds from the event will be going to support the Intense Intestines Foundation and to raise awareness for inflammatory bowel diseases such as Crohn’s disease and ulcerative colitis.

You’ll be helping the IIF with programs such as:

The Intense Intestines Scholarship (IBD and ostomy scholarship)

Never Stay Quiet Video Series (Awareness video series)

Never Stay Quiet Ambassador Program (Patient assistance program)

Intense Intestines Social (IBD and ostomy social network)

and MORE!

Visit our website www.intenseintestines.org to learn more about all of our programs.

Please come down and help us in our mission to help as many people with these diseases as possible and have a great time while doing it. Together we can show people with Crohn’s and colitis that they should Never Stay Quiet. 

We can’t wait to see you all again at the event this year and climb for a cause!

April 8, 2013

Dear IIF Follower:

I am proudly writing to inform you of our latest project.  The IIF team has been working hard to establish a scholarship fund dedicated to easing the financial burdens that students and their families face as a result of their IBD.

We know that life with IBD is not easy.  Students are often forced to make the difficult decisions of withdrawing from classes in lieu of the cost of testing, treatments and recovery.  The monetary implications of IBD can be compounded further as it frequently takes a student additional time to complete their degree.

One of our missions is to award scholarships to college aged students suffering from moderate to severe IBD.  Thus we have launched the Intense Intestines Scholarship Program (“IISP”) and we are eager to fulfill our mission.

As of today, I am very pleased to announce that we are officially accepting applications for IISP.  Applications can be found on the IIF website, by clicking the link found at the bottom of this page.

At the same time, we need your help spreading the word about our scholarship program.  We are asking our friends, families, colleagues and supporters to reach out and share our drive and passion in making the IISP a success.

I thank you in advance for your support in the coming months as we begin IISP’s journey.  We are very excited to hear from applicants and to read their stories.  With your help we can keep the IISP going and growing for many years to come.

Sincerely,

Brian Greenberg

Intense Intestines Scholarship Page 

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This May 5th  the Intense Intestines Foundation has a team of riders which will be riding through all five boroughs of New York City for Crohn’s disease, ulcerative colitis and ostomy awareness.

The 44 mile ride goes through the Bronx, Brooklyn, Staten Island, Queens, and of course Manhattan.  Covering many well known areas such as Central Park and going over many New York City bridges.

We need your help to reach our fundraising goal for this ride of $1,000.  All donations go to our mission of helping those with IBD and ostomies.  They help the IIF with:

• The Intense Intestines Scholarship
• The Never Stay Quiet Programs
• Intense Intestines Social
• And more

Please consider a donation of any amount, since every bit helps us reach our goals in the IBD and ostomy communities.  You can make a contribution to any of our riders by clicking the link below.

Everyone who makes a donation of $20 or more will also receive a Intense Intestines Never Stay Quiet wristband.

Thank you so much for you help and support with the Intense Intestines Five Boro Bike Tour ride.

Awestomy makes great products for ostomy awareness and also comfort.  Their line of products range from comfortable wraps and underwear for women to wear, to shirts which raise ostomy awareness and bring a little humor to the cause as well.

Please visit their website by clicking the link below and check out all the products they have to offer.  During the month of March 15% of all purchases will go to the Intense Intestines Foundation and help us in our cause to assist those with Crohn’s disease, ulcerative colitis and ostomies.

This is why we’ve created the Never Stay Quiet campaign for IBD and ostomy awareness.  The main goals of this campaign is to show others with IBD and/or ostomies that it’s okay to discuss their condition with others and raise awareness themselves, as well as open up so they can feel better about themselves.  Another goal of the campaign is to allow those who don’t know much about an IBD or ostomy, that even though patients might suffer from many symptoms we can overcome the diseases and live a normal life.

We’ll be shooting videos with many different people of different genders, ages, ethnicities, diseases and more for the Never Stay Quiet campaign.  This way everyone with Crohn’s disease, ulcerative colitis and/or ostomies will be able to find a video with a story they can connect too.

Here is our first video from IIF follower Marisa, who was nice enough to share her story.  The words Never Stay Quiet have a very important place in her life.

For more information on the IIF’s Never Stay Quiet campaign, please visit our campaign page here.

We look forward to helping as many people as possible with this project and raise more awareness for Crohn’s, colitis and ostomies.

Never Stay Quiet!

This certification opens up many doors for the IIF, which we’re excited to walk through.  It will allow us to grow, raise more awareness and help more people with Crohn’s disease, ulcerative colitis and ostomies.

If you have donated to the IIF or would like to donate to the IIF, you can now write your donation off when you prepare your taxes.  Please feel free to contact us about our certification so you can receive the write off which you deserve for helping our organization.  You can email us at Info@IntenseIntestines.org.

You can make a donation buy clicking the link at the top of our page.  Thank you so much for your support and we’re excited about what’s ahead for the Intense Intestines Foundation.

Never Stay Quiet!

CCFA Escape the Stall Campaign

In recent days we’ve seen many posts about the new Escape the Stall campaign by the Crohn’s & Colitis Foundation of America.  Social media sites have been buzzing about the campaign and many people have been sharing their feelings about the pictures the CCFA has released to raise IBD awareness.

Influential people in the IBD community like Jessica Grossman of Uncover Ostomy have written about the campaign (Click here for Jessica’s post) and Sara Ringer of Inflamed and Untamed wrote about it as well (Click here for Sara’s post).  To many people to count have commented on these two posts and other posts on various Facebook pages or Twitter accounts, all sharing different and varying thoughts.  Most people in the IBD community seem to be viewing the campaign in a negative way.

We made this short video with the pictures from the Escape the Stall campaign.

These pictures have been seen in movie theaters, magazines, newspapers and other areas to raise IBD awareness.  We’d like to know what you think and hear your thoughts.  Please feel free to leave a comment and start a discussion on the topic here or on our Youtube page.  It might be good feedback for the CCFA.

Never Stay Quiet!

Stall with no door.

Sometimes there are just things that aren’t right in society.  Some of them we can’t do anything about, others though we can have a voice and make changes.  The other day I was at a local sports bar in Norwalk, CT and when I went to the bathroom there was no door on the stall.  As an Inflammatory bowel disease patient for the last 20 years and one who lives with an ostomy now, I was amazed to see this.  How could an established sports bar like this one not have something as simple as a door on their stall?

I took a moment to think about while I was there.  Being someone who is extremely comfortable with my ostomy I had used it.  My thought process was that whoever might walk into the bathroom right now will just get a lesson in ostomy awareness.  It might just be another chance for me to bring awareness to the cause.

As I was sitting there doing my thing, I began to think about all the other people in a similar situation as me or how about just regular people who might want a little privacy when they use the bathroom.  As a Crohn’s patient I thought about all my IBD friends who wouldn’t be comfortable with this.  What about those few that have an ostomy who don’t wish for others to see it, how are they supposed to handle this situation when they need to use the bathroom?

This is something that any person might not know about until it’s to late.  They would get to the restaurant, eat a good meal, all of a sudden have the urge to go, get to the bathroom and have no choice.  Someone with Crohn’s disease or ulcerative colitis wouldn’t have a choice.  When the urge hits, you have to go and many times you have to go at that moment.  Sometimes without even enough time to get a friend to watch the door for you if you aren’t comfortable.

Needless to say I’m writing a letter to the owner of the restaurant.  This situation is something that shouldn’t be a situation at all.  How can a bar not have a door on their stall?  I understand that if it were a straight bar or club trying to be trendy, or maybe that will deter people from making a mess, doing drugs, or using the bathroom in any other way that it wasn’t meant for.  But what about the rest of us, the 99% of patrons that just might need to go to the bathroom and would like a little privacy.

I will let you know the outcome of writing management and the owner.  This is a perfect example of how we should…

 Never Stay Quiet!

Hello IIF Followers,

Recently we’ve been getting many emails about the Intense Intestines Scholarship.  We clearly see that our mission of awarding a scholarship is a necessary one.  With all of the interest in the scholarship we now know that we choose the right purpose for much of our fundraising efforts.  We thought that there weren’t enough scholarships available for those with IBD or ostomies.  Even though we wish that a scholarship wasn’t needed, it clearly is to help young adults with Crohn’s disease, ulcerative colitis or ostomies get their higher education.

Currently we’re putting together the guidelines and rules for the Intense Intestines Scholarship.  As soon as we have them ready we’ll be posting them to our scholarship page and creating an online form to apply.  We hope to have this ready as soon as possible.  Our goal is to gather applicants in the near future and start the selection process for the Fall 2013 semester.

We ask you for your patience as we set up the Intense Intestines Scholarship.  As a start up charity, we want to make sure that we can give the best scholarship possible and that it is setup properly.  Please continue to check our site for updates as we get closer to accepting applications.

Thank you for you interest in the Intense Intestines Scholarship and for your patience,

Brian Greenberg
Founder/President
Never Stay Quiet

These winter sports that so many love can be done with an ostomy and enjoyed.  The most important thing to remember is that they must be done when your body is strong.  If you’re uncomfortable with your body, then an activity with as much motion as skiing or snowboarding is hard.  When you body is strong, you can begin to think about going for a trip.

When planning your trip there are some factors that you must think about.  Here are a few.

1) Conditions: You don’t want to ski or ride when the conditions are tough.  If the mountain is full of ice and the chances are higher than normal for a fall or accident, then it’s not worth the risk.

2) Weather: If you aren’t going to be comfortable on the mountain then you won’t perform well.  This will raise the chances of something happening and possibly falling.  If the weather is going to be 10 degrees with 40 mph winds, STAY AT HOME.

3) Friends: Unless you’re an expert and are at a mountain you know, you should be skiing with friends who know you.  Being with people who know your situation will make you more confident and allow you to ski/ride better.

4) Stay Hydrated: When performing heavy activity in cold weather your body has to work hard.  You might not sweat but your body is still losing moisture.  Wear a hydration system and stay away from beverages that will dehydrate you.

5) Use Common Sense: No one knows your body better than you, so make a smart decision on if skiing or riding at this time is correct.  If you have any doubts, then it’s not the right time. Wait until you know the timing is right.

Performing certain activities with an ostomy can be scary, but most if not all activities can be done with the right planning and preparation   Founder of the IIF Brian Greenberg went skiing last year.  Here are some thoughts Brian had on his first trip since surgery.

“I waited until the time was right.  My first winter with an ostomy was great, but I was nervous.  I spent the winter snowshoeing which still allowed me to enjoy being outside.  Last year the season on the East Coast was not the best.  The conditions were icy and even though I was strong, I didn’t want to risk falling on my stoma.  Later in the season the mountain began to get snow, a lot of snow.  As soon as the conditions were going to be soft, I began to make calls and plan a trip.  I was lucky as a friend has a house I could stay at.  This made me even more comfortable since I knew I had all the comforts of home at the end of the day.  The two days were great, I skied most of the time in powder and never had a worry in the world.  I fell twice and it was like nothing happened.  The trip gave me more confidence that my body was getting stronger and I could do what I loved again”

This shows you that when the timing is right with your body, you still might have to wait till other factors are right too.  Brian was smart and his patience paid off, which allowed him to ski without worrying about anything happening.  Take your time and when it’s right to go skiing o riding for the first time, you’ll know it.

Never Stay Quiet! 

In our first year of raising Crohn’s disease, ulcerative colitis and ostomy awareness we were able to fundraise over $10,000 in order start the IIF, create the resources needed and begin to create the Intense Intestines Scholarship, to help young adults reach their higher education goals.

We held events throughout the year which included:

• The Climb for Crohn’s & Colitis, climbing event (World IBD Day, May 19th)
• The Comedy for Crohn’s & Colitis Event, featuring the Chris and Paul Show (July 28th)
• Bring Your Baggage, World Ostomy Day Event (October 6th)
• IIF Bike Ride From New York City to Boston (October 26th-28th)
• Strike Down Crohn’s & Colitis, bowling event (Crohn’s & Colitis Awareness Week, Dec 2nd)

All of these events led us to meet incredible people and we were able to reach new IIF followers who weren’t even aware of IBD or ostomies.  In 2013 we have even more planned in order to raise awareness with events like the ones above and more.  Including a great Never Stay Quiet campaign to raise even more awareness for Crohn’s disease, ulcerative colitis and ostomies.

Here are some videos from 2012

During 2012, we didn’t just hold events either.  We were given incredible opportunities to be featured in magazines like the back cover of Crohn’s Advocate, the The City That Works feature and Brian Greenberg appeared on New Channel 12 CT for a segment called 12 on Health to raise IBD awareness.

We’re ready for the start of 2013 and are excited to say that we will soon be fully 501(c)(3) certified by the Internal Revenue Service.  This will allow us to run as fully tax exempt nonprofit and will allow our contributors to get the write offs which they deserve for helping us in our mission of helping others.

As the IIF continues to grow, we’ll be sure to continue to bring you more good news.  We can’t wait to see where 2013 will take all of us and what will be in store.  All of us are passionate and can’t wait to carry out our mission for another year.  We get incredible satisfaction by helping others with Crohn’s disease, ulcerative colitis and ostomies.  Nothing will stop us from doing everything we can to make the lives of others with these diseases better.

Never Stay Quiet!

On the trip we have Bob Baker of the United Ostomy Associations of America working with us.  Bob was a ulcerative colitis patient, is a cancer survivor and lives with an ostomy.  A little over a year ago, he rode across the country on his bike, showing everyone that it’s possible to live well with an ostomy.  Bob is a true inspiration to us all and we’ll be happy to riding with him.

Our goal for the ride is to raise awareness for Crohn’s disease, ulcerative colitis and ostomies.  On top we’ve been fundraising to support programs for the Intense Intestines Foundation.  These programs include the Intense Intestines Scholarship and Intense Intestines Social.  We’re also working with the United Ostomy Associations Of America and a portion of the fundraising from Brian and Bob will be going to help the UOAA in their mission.

If you’d like to make a donation to support our programs and the UOAA’s in our missions, you can make a contribution on Brian’s page at the link below.

We’re proud to also be dedicating the ride to Jennifer Jaff of Advocacy for Patients with Chronic Illnesses.  Jennifer was an amazing person in the nonprofit world.  Jennifer was the Founder and Executive Director of Advocacy for Patients with Chronic Illness.  In her time there she helped countless people with chronic illnesses everywhere.  She had a close relationship with IIF Founder Brian Greenberg and in her honor, Brian will be riding with a picture of her during the entirety of the trip.

As we ride up the East Coast we’ll be passing through many cities.  Here is our scheduled stops for the ride.

October 26th (Day 1): Union Square Park, NYC to Norwalk, CT

October 27th (Day 2): Norwalk, CT to Westbrook, CT

October 28th (Day 3) Westbrook, CT to West Warrwick, RI

October 29th (Day 4) West Warrwick, RI to Boston, MA

If you live on the East Coast and would like to support us, meet us on the road, or at our stops you can email us at Info@IntenseIntestines.org and we can make arrangements.  You can also leave words of encouragement to help us on this long ride on our Facebook page below.

Jennifer Jaff was one of the most amazing people I had the privilege of knowing.  She was a person whose life was defined by one word, “help”.  Everyday Jenn woke up with a goal to help others.  As the founder and executive director of Advocacy for Patients with Chronic Illnesses, she supported countless people by assisting them to better understand complicated insurance reform laws, filing appeals with insurance companies for uncovered claims and even taking those same insurance companies to court.  Jenn battled for people who did not have the power, knowledge or ability to fight these giant corporations themselves and successfully instilled hope when all hope was lost.

Advocacy for Patients with Chronic Illnesses gave out free legal advice and assistance to those that did not have the resources or ability to hire lawyers to fight for them.  Jennifer took her knowledge and legal experience  and dedicated her life to assisting others by forming her nonprofit, Advocacy for Patients with Chronic Illnesses.

I was introduced to Jennifer by my friend Sari about 4 years ago, when I was sick and starting to toy with the idea of starting my own nonprofit.  Sari thought that Jenn and I would get along great as we had so many things in common.  We both wanted to dedicate our lives to helping others by being advocates for those that would not or could not speak out.  However, it was not just our shared passion and work in the not-for-profit world that we had in common, it was our shared paths as patients, sufferers of Crohn’s disease, and experiences and decisions to have ostomies that brought us together.

The first opportunity I had to meet Jenn was at a Crohn’s and Colitis Foundation of America event in New York City were she was speaking at a seminar on health care reform and how it affected patients who had chronic diseases.  After her speech she was on a Q&A panel.  The speech she made and questions she answered were incredibly informative for everyone who attended.  I knew immediately that this was someone I admired and aspired to be like.  We had already spoken a few times via email and phone, but I was glowing when she stopped the Q&A and asked me to come up in front of all attendees and discuss what I was doing.  It was not part of the event and she did not tell me she was going to do this.  Being introduced by someone as incredible as Jenn and hearing her tell me how proud of me she was and that I was an up-and-comer to the Inflammatory Bowel Disease nonprofit community that everyone needed to know about, left me speechless.  It was the first time I stood in front of a large amount of people and spoke about the Crohn’s Adventures Foundation.  I was filled with excitement, but not because I was able to speak about my cause, but rather that Jennifer Jaff was proud of what I was doing and called me an up-and-comer.

After that day Jennifer and I grew closer.  We emailed frequently, talked when we could, and no matter how busy she was, she took the time to help me with my cause.  Jenn  pointed me in the right direction when I was lost, gave me information that I needed when I did not know something, told me tips for becoming successful in the nonprofit world and most importantly lifted me up when times were hard.

A drawing made by a little girl of Jenn and her cat.

Starting a nonprofit is not easy work, but having Jennifer by my side made getting the Intense Intestines Foundation started so much smoother.  Jenn had already walked the path that I was and am still learning to walk.  Having Jenn as a friend by my side to give me words of encouragement was amazing.  This past March was the last time I saw Jenn in person.  We spoke in her new offices for a few hours and it was a joy as always.  Seeing her work was a pleasure, but it was also incredibly inspiring.  During my visit, we talked about so many topics regarding my foundation and also discussed her plans to move her nonprofit ahead.  I was even able to assist her with a few things that day, which made me feel great since I was able to give back to someone who had helped me so much.

I’ll remember that day forever.  At one point during our visit Jennifer was extremely perceptive and saw that I was overwhelmed with all the information she was giving me and said, “Brian, you’re way ahead of me at the two year point in your foundation and I’m so proud of what you’re doing.  Keep it up.”  I melted.  Hearing those words from someone who I had grown so close to, was extremely powerful for me.  I remembering leaving her office that day with a sense that things were going to be okay and the Intense Intestines Foundation would make it.

After that visit, we emailed on a regular basis for a while, but as things got moving with my organization, we did not email as much.  I look back on this now and am saddened that I had not been in contact as much with her a I would have liked to be.  I like to think that this is because she taught me so much and I did not need to email her for her assistance as frequently as I had in the past.  Jenn was my mentor and I will miss her dearly.  Jenn always knew when to step back and let me grow.  I attest my professional growth and development to Jenn.  It was Jenn who helped me get to where I am today and helped me to learn how to run a nonprofit and make the right decisions to move it forward on my own.

Remembering Jennifer these last few days has been tough for me, since like I said we had so much in common and parallels in our lives.  I’ll always miss Jenn and there will be times that knowing she isn’t there will be tough.  I admired her in every way, aspire to be like her, and hope to follow in her footsteps in the nonprofit world to lead and inspire people the way she did.  Most of all I will miss her as a friend and someone that I could always talk to.

In the coming days and weeks I will be figuring out how we at the Intense Intestines Foundation will be honoring and celebrating Jennifer’s life.

Rest In Peace Jennifer Jaff.

Never Stay Quiet

Working out with an IBD can be hard at times.  Considering the disease is located right in your core area and basically every exercise works your core in some way, it can make things difficult.  This leads to a major muscle group never getting a break.  But what happens if you have an ostomy?  It can be a much tougher battle to be able to do all the exercises you may want to do.

After ostomy surgery working out is tough.  Not only are you learning a new body, but quickly learning to adjust to a new routine from the one you may have been used too.  The process of learning what you can and can’t do takes time, especially to learn the best way to workout the core muscles.  This area is very important to any active individuals since it’s always in use.  People say that if you have an ostomy that you aren’t able to work out your core due to the fear of injuring your stoma, but you can, you just have to do it slowly and correctly for your body.

Here is how Brian started to use his core after his ostomy surgery:

The process started late last spring to start and try to engage my abs more, but I wasn’t sure I would be able to.  So I worked out with my old personal trainer, just to make sure things would be okay.  We went through a large amount of exercises, seeing which ones worked best.  Many of the old/traditional positions didn’t work for me.  The motions involved to much bending at the waist.

I found a way to workout my core and I want to share it with all of you.  It’s probably even great for those without an ostomy since there is less bending at the waist and has more motion with bringing your knees up.

Using Bosu balls and some machines which allow you to engage your core with a smaller amount of motion can help a patient still exercise their core.  The key is to find a workout routine were there isn’t a large amount of motion with the shoulders crunching down to the waist like a traditional sit up.  

Be creative, walk around the gym and find ways were you’re using a motion that brings your knees up to your chest more and you may find it easier on your ostomy.  Ever gym has equipment that will allow you to work your core, even with an ostomy.  Another great idea is to hire a professional trainer to help you.  Explain your situation and let them tailor a workout for your body.

In time you’ll gain strength in your core again and more activities/motions will possible with your ostomy.  Many people are nervous at first and stay away from riding a bike, rowing and other exercises, you’ll gain back a very large range of motion and there aren’t many activities that an patient with an ostomy can’t perform.