Intense Intestines Foundation Blog

Inaugural Intense Intestines Golf Outing On July 17th

IIG Golf Outing FB Cover

The IIF would like to invite you to enjoy a full day of fairway fun and fine food at one of the New York area’s top golf courses for the Inaugural Intense Intestines Golf Outing. Sterling Farms Golf Club offers 18 holes of picturesque scenery and challenging golf with classic New England charm.  Sterling Farms Golf Club has been given a 4 out of 5 star rating by GolfAdvisor.com and is noted for its meticulous condition, superior facilities, and various amenities.

Sterling-Farms-Golf-Course-21

Details:

Where: Sterling Farms Golf Club,

1349 Newfield Avenue

Stamford, CT 06905

When: Thursday, July 17th

8:00am shotgun start (check in begins at 7:00am)

The day includes:

  • A delicious, light breakfast to start the day
  • 18 holes of friendly but challenging competition on one of the areas best golf courses
  • Golf cart to allow you to enjoy the day in full comfort
  • Full lunch with everything you need to satisfy your appetite
  • 2 free beverages to quench your thirst
  • Entry into the long drive, closest to the pin, and closest to the line contests
  • Chance to win a car during our par 3 challenge

Cost: $125 per person

Giveaways:

  • IIF We Will Beat IBD towel ($20)
  • IIF Premium divot tool ($20)
  • IIF Bag tag ($5)
  • Equinox 1 month membership with 1 personal training session ($225)

That is $250 of giveaways for only $125!  Double what you pay to play!  WOW!

Deadline to register: Tuesday, July 8th

If you would like to register manually and pay by check, please click the link below.

Intense Intestines Golf Outing Registration Form

Raffle prizes from:

  • NAGI Jewelers
  • Mohegan Sun Casino
  • The New York Giants
  • Okemo Mountain Resort
  • Philips Electronics
  • Bar Rosso
  • and MORE!

Proceeds from the golf outing go towards the Intense Intestines Foundation’s efforts to connect, support, and educate the public about Crohn’s disease, ulcerative colitis, and ostomies, as well as helping members of the IBD and ostomy communities through various programs throughout the year.

We’d like to thank our sponsors for the Inaugural Intense Intestines Golf Outing:

dannon-logo_1374877289782_523073_ver1.0_320_240

 

nagi

 

Philips shield 2013

mohegan-logo_3

Posted in Featured on Homepage, General | Leave a comment

Lyfebulb Social Club Event for IBD

On Thursday, June 19th, an excited crowd came together for the third event in the Lyfebulb Social Club series, hosted by Immune Pharmaceuticals and Lyfebulb, an organization dedicated to helping people achieve their optimal lifestyle by addressing general and chronic health concerns. As the founder of the Intense Intestines Foundation I was honored to be invited to the exclusive cocktail party, which took place at Brasserie Ruhlmann in New York City’s Rockefeller Center, brought together guests to connect and learn about emerging and personalized therapies in Crohn’s disease and ulcerative colitis. Guests shared stories and personal experiences while enjoying specialty cocktails, healthy refreshments and appetizers.

Lyfebulb

The night featured Dr. Neville Bamji, board-certified gastroenterologist and Clinical Instructor of Medicine at The Mount Sinai Hospital, who shared insights to what could be coming in new therapies to help manage the diseases. Michael Fenterstock spoke to the crowd as the patient representative for the night, discussing his personal account of living with IBD, including the struggles and the successes.

The event is a part of Lyfebulb’s Social Club series, a monthly cocktail parties focused on various chronic diseases. The offline extension to Lyfebulb’s online platform, the Social Club brings together thought leaders, patients, experts and renowned professional, in an informative and relaxed environment.

I’d encourage you to read about what Lyfebulb and Dr. Hehenberger are doing for patients with a variety of chronic illnesses.  No matter what the diseases there is a feeling of being different with every patient but when surrounded by others who have been dealt a bad hand of cards also, every person is inspired to share their story and realize that they aren’t alone.  This is what social events in the various chronic diseases can do to help people, this is a great example of what needs to be done.

Posted in Featured on Homepage, General | Leave a comment

We Never Have A Completely Normal Life by Brian Greenberg

I’ve always told IBD patients that as long as they aren’t flaring, a reasonably normal life is possible. With the right planning and preparation, patients have the ability to participate in most events and activities that pop up during everyday life. But sometimes the little things add up and remind us that we have extra responsibilities as IBD patients.

Central ParkFor instance, right now I’m typing this in Central Park, enjoying a beautiful day by one of its lakes; a near-perfect afternoon, but not quite. To make today happen required a good amount of effort and preparation. At this point, I’m just glad and grateful to have been able to get here, have lunch, and read.

Non-patients aren’t generally aware of the steps we take to take part in regular events, and I want to share what even an easy day like today required:

The first drawback was that I had to leave the dog at home. It would have been real nice to have Buddy here, lying on the grass, and enjoying the day with me but while planning the day’s bathroom breaks, I realized it just wouldn’t work. You can’t exactly leave a dog alone outside a bathroom, especially in such a big and crowded park. I would have had to cut the relaxing and productive day short and head home since a bathroom break is always two or so hours away.

The amount of preparation wasn’t limited to spending time at the park, though. The walk to Central Park was also a concern. My rectal area is currently so bad that a 15-block walk that should take only 20 minutes can cause serious pain. I had to not only plan what to pack for a regular day at the park but also what my body might need in case I started to feel bad.

One of the regular parts of the day that we are challenged with as IBD patients is a trip to the bathroom. I’ve only been here for two hours but have already had to pack everything to get to the bathroom. When I returned to the same area afterwards, there was a moment when I saw everyone relaxing and yearned for their security of knowing they can spend hours upon hours here and (maybe) never have to worry about going to the bathroom.

I’m not convinced it will ever get easier. I’ve worked a lot over the years to not let all these regular complications and worries get me down, but sometimes I slip and fall. Occasionally, like in this moment, I fear that I’m missing out on certain aspects of life.

Just think positive.

Even though July will bring my 37th surgery, I know that I’m still one of the lucky ones in the IBD community. In starting the IIF, I have managed to use the difficult experiences I’ve gone through to find solutions and help people. That’s a win in itself, but even better is how being around such a positive community has rubbed off on me. I’m pretty lucky.

And now, back to my day at the park.

If you would like to make a donation to support the Intense Intestines Foundation and help those with Crohn’s disease, ulcerative colitis and ostomies please click below.

Razoo

Posted in General | Leave a comment

Bullying and IBD by Brian Greenberg

I’m not particularly thrilled to mention this commonality, but most of us have probably been judged because of our IBD at some point. In an ideal world, this would never be a concern and everyone would be considerate towards IBD patients (and all those who deal with diseases and differences). Despite a supportive family and friend group, I was subjected to unfavorable judgment as well. In high school, I was bullied because of my Crohn’s disease.Bullying 3

I’d like to give you a little background:

Fifteen years ago, when I was in high school, many diseases and conditions were not discussed as much they are today. The public didn’t have such a highly developed Internet to spread awareness about them so quickly and visibly. They were virtually unknown by my peers. Students who had Crohn’s disease, such as a fellow IIF Board of Directors member and HS classmate and I, never discussed it. We didn’t even have the social spaces online that are available today to talk about it.

Who was I in high school? I was small, underweight, and frequently missing from classes. There was clearly something wrong with me, but I wasn’t very open about it with classmates apart from my close friends. My fellow students didn’t know what I was going through on a daily basis. So, there were rumors.

The worst, and I still can’t imagine (and don’t want to know) the stories that were created to come up with it, was that I suffered from AIDS. People thought I was dying. I was very clearly sick and because of it, I imagine my fellow students were scared to approach me. I recall a situation when a classmate was told by another not to sit next to me in class. They didn’t say why but when I worked up the courage to ask someone and they told me about the rumor, all I wanted to do was cry.  This made me wonder how often instances like this happened around me and how often people treated me a certain way because it was easier to just make fun of me because of my condition.

Looking back at that time and comparing it to the world we live in today, I’m glad to see that students and people with diseases and conditions are treated vastly different by society. We’ve watched stories on the news that show an entire high school rallying behind a fellow student suffering from a disease. We saw an entire city gather around a sick child dressed as Batman who saved San Francisco from bad guys one day. Everything is not perfect, but I’ve seen the world grow to be more understanding and accepting, especially for someone who suffers from a disease.  Below is a great example from ESPN about how students with diseases or conditions are now accepted much more.

Since starting the IIF, I’ve been happy to meet middle school and high school students who are able to talk about their disease openly to peers in their schools. They might not live a typical student life due to their IBD, but they can be a normal part of the student body without consistently being judged as I was in the past.

We have come a long way, even though it might be hard to see, and we still have work to do. That’s part of what we strive to do through our work at the IIF. We want to continue to help student (and non-student) patients feel more comfortable around peers. We want to help make the world a place where it is easy for patients to Never Stay Quiet about their Crohn’s disease or ulcerative colitis.

In retrospect, I wish I didn’t stay so quiet when I went to school which caused this rumor. The way I was treated may have been different if I had been more open or tried to raise awareness about Crohn’s. I’m glad that, with the IIF, we can provide support to student patients and, hopefully, inspire them to be courageous.

Never Stay Quiet!

To make a donation to assist the IIF in our mission to help those with Crohn’s disease, ulcerative colitis and ostomies, please click below.

Razoo

Posted in Featured on Homepage, General, Inflammatory Bowel Disease, Inspirational Stories, Ulcerative Colitis | 4 Comments

How the IIF is Helping the IBD Community

As you are well aware, there are a large number of non-profit organizations in the health care sector, each trying to help the people and causes they support in different ways. The Intense Intestines Foundation team has developed its own distinctive programs to reach the IBD and ostomy communities and we’re proud of the direction we’ve gone and the impact we’ve had on these groups. We continuously strive to represent our mission statement to connect, support and educate the public about Crohn’s disease, ulcerative colitis and ostomies.Help

Throughout the year, the IIF holds a variety of events that bring patients and their loved ones into the community of similar people that they can feel comfortable with.  The Climb for Crohn’s & Colitis has become a yearly event that IBD and ostomy patients come together and celebrate World IBD Day.   We have also created programs like the Never Stay Quiet video series and the NEW Intense Intestines: IBD & Ostomy Meetups.

We’ve also developed other ways to directly help members of the IBD and ostomy communities. The Intense Intestines Scholarship puts fundraising efforts towards patients who are seeking out a higher education. Earning a degree is no small feat and it’s even harder with an IBD, and we want to help young adults and their families who have fought these diseases in as many ways as we can.

As the Intense Intestines Foundation grows, we will continue to build more programs to help IBD and ostomy patients. Stay tuned for our upcoming announcement about a new way we’ll be able to directly assist patients. We believe it will be something everyone in the IBD and ostomy communities will be excited to hear.

Never Stay Quiet!

Posted in Featured on Homepage, General | Leave a comment

Ulcerative Colitis: Can it be Cured? (The IIF’s Position)

CureCan ulcerative colitis be cured?

The CCFA believes that the removal of the colon for an ulcerative colitis patient is a “cure.” They further describe it as a choice after other medical options don’t work for a patient: “This operation involves the removal of the colon (colectomy). Unlike Crohn’s disease, which can recur after surgery, ulcerative colitis is ‘cured’ once the colon is removed.”

Is surgery a cure?

There has been a continuous debate within the IBD community on this topic. Research has shown that while there are benefits to the surgery, the removal of a vital organ can be very difficult on the body and the loss of the colon is one that not all have the ability to cope with.

Ulcerative colitis is a tremendously complicated disease. It has a wide range of symptoms; it can attack a person’s body in many ways and manifest itself very differently in each patient. Some patients may be affected physically AND mentally. As we have previously mentioned, each IBD patient is different and must find what works in their individual fight against the disease.

That being said, UC is mainly located in the colon and, for some patients, the removal of the colon may improve their lives. However, the loss of such an important organ may have significant consequences, as not all bodies can function well without this critical section of the GI tract. In this case, “cure” is a misleading term; not all patients will get the results the word insinuates.

Surgery

The IIF’s stance on surgery being considered a cure for ulcerative colitis:

The removal of the colon is a serious surgery that can affect the body in different ways. As such, all other options should be exhausted before the decision of amputation of the colon is made. A colectomy for an ulcerative colitis patient may limit how the disease affects the body, but the body tends to work differently afterwards. Like many surgeries, nothing can be guaranteed – a patient must always weigh the risk that goes along with any surgery. It is each person’s responsibility to research affects and understand all possible outcomes after the removal of the colon for their UC.

The Intense Intestines Foundation believes that the removal of any vital body part, for any disease, is NOT necessarily a cure. The amputation of the colon is a medical treatment option that alters the way the body functions, sometimes with adverse effects. A cure is not something that has these impacts on the way the body works, it is something that corrects the body and restores health.

In engaging with patients in the IBD community, the IIF has found that some patients live very healthy and fulfilling lives following the removal of their colon. The active disease has been removed and their body accepts the surgery, which means ulcerative colitis will not return.

Other patients do not have the same results. The amputation of their colon may not give them a higher quality of living and their bodies might not function normally. Missing a major part of the GI tract and ulcerative colitis may affect their body in other ways. These patients don’t seem to have a reason to consider themselves “cured,” and continue to fight the disease’s effects.

Ideally, this topic would not be at the center of debate in the IBD community. At the IIF, we continue to support and hope for a full and complete CURE for both Crohn’s disease and ulcerative colitis in the near future.

Posted in Featured on Homepage, General | 1 Comment

Intense Intestines Scholarship Update and Schedule

Screen Shot 2012-02-27 at 11.03.52 AM

Over the past few months we have been hard at work preparing to open applications for our next Intense Intestines Scholarship. In addition to announcing that we will begin accepting applications starting Monday, May 5th, we have the privilege to share additional news: The IIF will award TWO scholarships for the upcoming fall semester.

Please don’t hesitate to apply for the scholarship, even if you have in the past. We are very happy to consider you again with a new application. For the upcoming awards, there will be a limited amount of applicants we can accept. Only the first 40 we receive will be eligible to receive the Intense Intestines Scholarship, so don’t wait to apply.

We look forward to reviewing applications for the 2014 Fall Semester. We have been amazed with the incredible IBD students who have applied in the past and are eager to see more of the same this year.

Important Dates For Applicants:

Monday, May 5th – Applications will be accepted online at the link below.

Friday, June 20th – Applications will no longer be accepted.

Friday July 4th – All personal and professional letters of recommendation must be received by mail or email. Send letters by email as a PDF file to Scholarship@IntenseIntestines.org or to our address below.

Intense Intestines Foundation

P.O. Box 8097

Stamford, CT 06905

Friday, July 25th – Finalist for the Intense Intestines Scholarship will be notified and asked to create a 2-minute video introduction that shares their IBD story with the Intense Intestines Board.

Friday, August 8th – The two Intense Intestines Scholarship recipients will be announced.

Thank you for your interest in the Intense Intestines Scholarship.  We will continue in our mission to help the IBD and ostomy communities in direct ways like the scholarship.

If you have any questions please email us at Scholarship@IntenseIntestines.org

Posted in Featured on Homepage, Intense Intestines Foundation | Tagged | Leave a comment

3rd Annual Climb for Crohn’s & Colitis at The Rock Club

The Intense Intestines Foundation is excited to invite you to our 3rd Annual Climb for Crohn’s & Colitis event.

3rd Annual Climbing Event 2014 flyer

In honor of World IBD Day 2014, we will be hosting our 3rd Annual Climb for Crohn’s & Colitis on Saturday, May 17th at The Rock Club in New Rochelle, NY. Similar to last year, the event will include open climbing, an after party with food and beverages, and raffle prizes.

Climbing will be from 2:30pm to 7:00pm followed by our after party. (You don’t have to climb to come down and have a good time). We will have climbing for all ability levels and ages. We recommend 4+ for climbing .

The Rock Club is the premiere indoor rock climbing gym in the New York City area, and we are excited to be invited back for our 3rd Annual Climb for Crohn’s & Colitis to raise awareness for inflammatory bowel disease and ostomies.

Tickets include: climbing day pass, harness, shoes, instruction, one party drink and food at the after party.

All proceeds from the event will be going to support the Intense Intestines Foundation and to raise awareness for Crohn’s disease, ulcerative colitis and ostomies.

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

- Intense Intestines Scholarship (IBD and ostomy scholarship)
- Intense Intestines Medical Assistance (Helping patients directly with their medical bills)
- Never Stay Quiet Video Series (Awareness video series)
- and MORE!

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

To purchase tickets to the 3rd Annual Climb for Crohn’s & Colitis click here.

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 disease and ulcerative 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!

Posted in Featured on Homepage, Intense Intestines Foundation | Tagged , , , , , , , , , , , , , , , , , , | Leave a comment

Hope For The Future by Sarah Brocker

1384192_666944523318403_1433987524_n

The below post is written by Sarah Brocker, the IIF’s second Intense Intestines Scholarship winner. 

I was diagnosed when I was 12 years old and missed 58 days of school that year. At that time, I did not understand the meaning of forever, but I did know that my symptoms were embarrassing and I did not want other people knowing about them. From that point on, I spent a lot of time trying to hide my disease. I did not look sick, so I was often able to pretend that I was not sick. However, as a high school junior, I had my first surgery and started my first biologic, Humira. After surgery I could no longer to pretend I wasn’t sick. When I returned to school, determined to finish the semester, I was astounded to find out that people thought my surgery was cool. I slowly started opening up about my disease, and as time passed, I began to share more and more with the people around me.

College has been extremely difficult for me. I have missed a lot of school and have had three more surgeries. While at school, I have tried Humira, Stellara, Cimizia, Tysabri, Methotrexate and Imuran, but unfortunately nothing has worked very well for me. Needless to say, staying in school is rough but very rewarding. The scholarship offered to me by the Intense Intestines Foundation has not only helped me pay for school but also given me some much-needed encouragement. It was as if they were saying, “We think you’ve done a great job, despite your Crohn’s, so keep it up!” It has given me something to fight for, to not only prove to myself I can do school, but to also show the world what someone with Crohn’s can accomplish. Receiving the scholarship has helped me see that even though I don’t live a normal life and that sometimes my life is extremely difficult, I still can reach for the stars and accomplish my goals!

This same idea of perseverance is represented through the videos shown on the Intense Intestines Foundation’s website. Many of the videos tell stories of IBD patients whom have overcome the obstacles placed in their lives by IBD. These videos provided me with hope; hope that if they can do it, I can do it! They are real people just like me, and I am a real person just like you. Even though everyone’s IBD case is different, we all have one thing in common: living with IBD is crap (pun intended)! We all have this difficult part of our lives that we have to live with, but that doesn’t mean that it will hold you back. I sometimes feel like I could accomplish so much if I didn’t have Crohn’s. However, when I step back and look at my life, I have already accomplished so much despite my disease. So just as receiving the scholarship inspired me and watching the videos inspired me, I hope that seeing my story helps inspire you to dream big, never give up, and NEVER STAY QUIET!

To make a donation to the Intense Intestines Foundation to help us continue our mission in helping as many Crohn’s disease, ulcerative colitis and ostomy patients as possible, please click the link below.

Razoo

Posted in Crohn's Disease, Featured on Homepage, General, IBD News, Inflammatory Bowel Disease, Inspirational Stories, Intense Intestines Foundation | Tagged , , , , , , , , , , , , , , , , | Leave a comment

Cycling the Big Apple for IBD and Ostomy Awareness

Screen Shot 2013-10-09 at 2.19.22 PM

The IIF will be riding in the Five Boro Bike Tour for the second time in 2014.  This ride is for all ability levels and doesn’t require a large amount of training.  The 40+ mile ride goes through all five boroughs of New York City, by many landmarks, through Central Park and over many bridges in the area.

For more information on the Five Boro Bike Tour, please click here.

We will be riding again this year to raise IBD awareness, educate those about the diseases and of course to have a good time.  The fundraising minimum will be $500 this year.  For their efforts to raise IBD awareness, riders will receive an IIF jersey/shirt, IIF water bottle, lunch after the ride and more.

To sign up for the ride, please fill out the form below or click here.  After filling out the form, you can begin to create your fundraising page at the link below.  For tips on fundraising for the IIF, please click here.

Intense Intestines Cycling the Big Apple Team Page!

If you are interested in riding or signing up for the ride, please join the Ride’s Facebook page as well.  We will be posting updates there as the ride gets closer.

Cycling the Big Apple 2014 Facebook Event Page!

An IIF team member will contact you shortly after you complete the form below.  We look forward to cycling with you in 2014!

 

Posted in Crohn's Disease, Featured on Homepage, General, IBD News, Inflammatory Bowel Disease, Intense Intestines Foundation, Video | Tagged , , , , , , | Leave a comment