2015 Super Bowl Pool ~ for The Intense Intestines Foundation

Jan9

This is something I have been wanting to do for a while but never seemed to make the time for it. So, this year I am doing it. I am holding a pool for the Super Bowl. 50% of the money raised will go to The Intense Intestines Foundation, a charity that helps people with Crohn’s Disease, Ulcerative Colitis, and Ostomies. The other 50% go to 4 winners.

I am selling boxes for $10 each. I will pick the box for everyone so it will be random. There will be a winner for each quarter, so 4 winners.

If you would like to buy a box, or 2 or 10, let me know. To make payment easy, I am using Paypal. You can send the money to aguywithcrohns@gmail.com.

If you have any questions about this, please let me know or email me at aguywithcrohns@gmail.com.

Beyond the Bathroom

Dec1

As many of you might know by now, this is IBD Awareness Week. What you also might not know is that I recently joined the Board of Directors for The Intense Intestines Foundation.

This week, the IIF rolled out a new contest/campaign. It is called the Beyond the Bathroom. As you can tell from the name, we are trying to show that IBD is more than a pooping disease and there is so much more to it then just going to the bathroom.

I am now going to ask a favor. Please go to http://www.intenseintestines.org/beyondthebathroom/ and check out the contest. After you read about it, please submit your picture but most of all, please, if you can, send a donation. The IIF needs your support. They need it not for themselves, but for the people they support. They currently have a scholarship that they give out every quarter. Real soon, they will be coming out with a bill assistance program. These programs can’t survive without the support of the community.

To show you what the Beyond the Bathroom is, it is very simple. On their site, you can download a page to print out and you just write in a symptom you have that isn’t related to the bathroom. See my picture below.

IBD Workshop on Nov 8th 2014

Oct28

Come one come all. If you are in the Southern Connecticut area on November 8th, there is a free IBD workshop being help by my good friends at The Intense Intestines Foundation.

http://www.intenseintestines.org/ibdworkshop/

Intense Intestines Crohn’s & Colitis Workshop

The IIF team is excited to host our first Crohn’s & Colitis Workshop at Equinox of Greenwich on Saturday, November 8th. We will continue our mission to help as many patients with Crohn’s disease, ulcerative colitis and ostomies.

Where: Equinox Club of Greenwich, 16 Old Track Road, Greenwich, CT 06830

Date: Saturday, November 8th

Time: 1:00pm – 3:30pm

Cost: Free to first 50 participants (RSVP required. Reserve ticket by below)

During the first half of the workshop, our panel will cover a wide ranges of topics: pain management, healthy habits, living with IBD, surgeries options, the mental battle with IBD, and much more.

The second half of the workshop will feature a Q&A session. This will be a time for patients and their loved ones to engage with our knowledgeable speakers and learn more about Crohn’s disease, ulcerative colitis, and ostomies.

The panel is made up of an extraordinary group of people who know how difficult living with these diseases can be:

Dr. Freitas: Surgeon at Colon and Rectal Surgery Stamford and Stamford Hospital

Brian Greenberg: Founder and President of the Intense Intestines Foundation

Bob Baker: Ulcerative colitis patient and colon cancer survivor

Jessica Grossman: Founder of Uncover Ostomy

Join us for this free workshop for the Crohn’s disease, ulcerative colitis and ostomy communities. You can register below.

We look forward to seeing you there!

IBD Support

May30

If you haven’t already, head on over to The Crohn’s Forum to check out my latest post for them about IBD Support. It can be found here.

IIF-Never-Stay-Quiet

Now that you have come back, let me update you a little more. Since the climb, I have done even more support for the IIF. This past Wednesday, the IIF had their first support/meetup group. I had helped in organizing it and getting it together. Sadly there were only 3 IBDers that showed up, but it was a start. And I do have to say that the people who did come were amazing.

One girl who came was 15 but looked 12. I thought this group would be a little out of her league when I first saw her, but after she opened her mouth I was amazed. Now, I feel that when you run a support group, you should be the inspirational person. You should be the one to install confidence in others and help guide them on their journey. However, I felt humbled when this girl spoke. She was the bravest 15 yr old I have ever met and had the best outcome on life. She clearly was not going to let IBD stop her from living.

Another person that was there was just the opposite. He had never been to a support group before and was still a little new to IBD. He hadn’t really opened up yet about it with others. Thankfully, we all have been there so we were all comforting to him. So much great advice flowed from us that I hope he feels a lot more confidence in living his life with IBD.

The third person that showed up was someone I convinced to come. I met her on the climb and I wanted to have someone who was at a point in their life where they were comfortable with their IBD to really open up. I think her story is definitely a great one and I think she helped the others in understanding this damn disease a little better.

This was the first group. We will be having one every month and I already can’t wait for the next one. Hopefully we will have more people there. I love hearing the different stories and journeys people have taken. If you are in the Northern New Jersey area, and want to attend, let me know. I will give you all the information.

IBD Support

Mar19

In a previous post I had said I was working on some projects and I would let you know what they were when I could. The first was the IBD prom which sadly, had to be rescheduled to 2015.

The second project I am happy to announce now is a support/meetup group. I have been working with The Intense Intestines Foundation to organize a support group for the Northern New Jersey area. Today we have finalized the details. On May 28th we will hold our first meet up.

Over the years I have found that CCFA has been losing touch with people with IBD. I personally asked for a support group to be formed by them in the Northern NJ area but they denied it. So, when Brian from IIF heard I wanted to start up a group, he asked me to join on to help IIF in bringing groups to the NY, NJ and CT area. This will be the first of many new groups.

If you actually live in the area and want to come please let me know or email the IIF at Info@IntenseIntestines.org

RIP Karrie Jacobs

Oct20

This week I learned again just how dangerous IBD can be. This week we lost another warrior in the battle against Crohn’s Disease. Karrie Jacobs, mother of 2 little kids and a wife to a loving husband, died from complications of the disease. I don’t know the whole story but it is being said that she had some issues with strictures and was having trouble breathing. She called 9-1-1 and by the time the paramedics got there, she had stopped breathing and had pasted on.

I got to know Karrie from a IBD group on Facebook. She was very kind to others and had a great heart. I wasn’t aware she had some issues go on so this was a big shock to me as well as everyone else. But is also shows just how deadly these invisible illnesses can be.

This isn’t the first time I have seen IBD take away someone. As many of you know, my Father in Law passes away because of complication due to Ulcerative Colitis. I never knew before him how IBD can be deadly. Now that I have learned more about both CD and UC I am seeing that they can be as deadly as any other disease. What makes this worse is that many people don’t know this.

When someone gets Cancer, they get Chemo. If you have clogged arteries, there are medicines that you can take to lower cholesterol. But when it comes to IBD, there is still tons of guess work going on and the meds we take don’t always help. A lot of the times the doctor “tries out” the medicine to see if it will help.

This all frustrates me so much. Because of the lack of education and funding for IBD, more people will pass away from the diseases. People that shouldn’t have to if more money was given into finding cures. Because so many people have no clue what IBD is, the government doesn’t focus on it. Instead it is left to smaller charities like CCFA to fund the research.

Recently, I joined up with IIF (Intense Intestines Foundation). They are a smaller charity that raises money and awareness for IBD. I decided to join because I would be working on something that is near and dear to my heart….education. I will be working on helping to educate both patients and medical professionals. I have wanted to do this for so long now and finally my chance is here.

My personal goal is to help bring IBD into the foreground so that we are finally recognized as a serious illness. I don’t want anymore people to die from these disease because, reality is, they shouldn’t be. We need a cure and we need it now. This won’t come until people get educated and help fund the research.

Karrie, you will be missed by so many people. Just know, you will be remembered. You were definitely loved and I want to make sure that no one has to go through what your family is going through now. A cure will be found….I want to make sure of that.