Early Resolutions for the New Year


This week is IBD Awareness Week.  I haven’t done much or even been on this blog for a long time.  But, I wanted to write something up for this week and there is something that has been on my mind.

Part of living with IBD is that you can’t always do what you want to in life.  Sometimes the pain and the constant bathroom trips stop you from doing things.  Well, for me that is going to change.

Lately I have been hearing the song I Lived by OneRepublic a lot.  Part of the chorus has really stuck in my head.  It is “I, I did it all.  I, I did it all.
I owned every second that this world could give.  I saw so many places, the things that I did.  With every broken bone, I swear I lived.”

I thought back on my life so far.  I have done a lot and have traveled to many places, but I really haven’t lived life or owned every second.  This actually bothered me when I thought about it.  I thought why can’t I?  Just because I have a disease doesn’t mean I shouldn’t live life.  So, going forward I refuse to let this disease stop me from doing anything.  It might slow me down some times but it won’t stop me.

I posted on my Facebook account a list of things I want to accomplish within the next year.  I want to share that list again here.

  1. Finish school with a B average (I can’t get an A anymore but I can work on the B)
  2. Find a job that I enjoy doing (We should all enjoy the work we do)
  3. Pass 2 IT certificates (This goes hand in hand with 1 & 2)
  4. Get in shape
  5. Lose weight
  6. Make a new friend (We can never have too many friends)
  7. Travel somewhere I have never been before
  8. Read at least 5 books (Knowledge is power)
  9. Learn to ski (I have wanted to do this for over 20 years.  Anyone want to teach me?)
  10. Bring IBD awareness to more people

To start of my list, here is some information from The Intense Intestines home page.

IBD FACTS

It’s estimated that around 1.4 million people are affected by an IBD condition in the United States alone.

In the U.S. about 100-200 people per 100,000 are affected with ulcerative colitis.

And 30-100 people per 100,000 are affected by Crohn’s disease.

Crohn’s can affect all areas of the digestive tract.  The digestive tracts covers the following areas

Mouth, Esophagus, Stomach, Small Intestine, Large Intestines, Rectum and Anus.

Ulcerative colitis just affects the following areas:

Colon, Rectum, and Anus.

What Causes Inflammatory Bowel Disease:

Unfortunately, no one knows exactly what causes IBD.  All we know is that something in your body causes your immune system to overreact.  Different stimuli may be the cause of IBD in different people.  For instance it might be a kind of bacteria, something in your own intestines or even your family history.

In fact scientists now believe it is a combination of all these factors.  if youhave IBD, you may have inherited a unique gene in your immune system.  Then something happened to trigger that gene, causing the overreaction, which then cause the inflammation in a patients intestines.

Who Gets IBD:

IBD can be found in both men and women.  it may run in families, in fact 20% of people diagnosed with the disease have a blood relative with some form of IBD.

It is usually diagnosed between the ages of 20-30, all though people of all ages can suffer from an IBD.  People of Jewish heritage have a greater rush of developing the disease while people of African American heritage have the least amount of risk.

Symptoms:

Abdominal pain and diarrhea are the most common symptoms of IBD.  Other symptoms include rectal bleeding, weight loss, arthritis, skin problems, inflammation of the eyes and fever.  The range of severity of symptoms can vary.  A diagnosis of IBD may involve blood tests, stool tests, upper GI, colonoscopy, sigmoidoscopy, or biopsy.

IBD-Facts-symptoms-awareness-week-13

Beyond the Bathroom


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.

Beyond the Bathroom

 

 

IBD Workshop on Nov 8th 2014


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

We Will Beat IBD

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!

Lyfebulb Social Club


This past week I was lucky to have been invited to Lyfebulb’s Social Club.  It was a cocktail party  in Rockefeller Center and brought together guests to connect and learn about emerging and personalized therapies in IBD.

For anyone that doesn’t know what Lyfebulb is, they are an organization dedicated to helping people achieve their optimal lifestyle by addressing general and chronic health concerns.  The founder of the company, Dr. Karin Hehenberger was there and started this company to help connect people with chronic illnesses.  Their main focus had been on diabetes, but now they are moving on to include people with IBD.

 

Low Res_Dr. Karen Hehenberger Addresses The Crowd

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.

Lyfebulb is fairly new to the scene and this was their third get together.  They have many more things planned for the future including a radio station where people can call up to talk about their disease.

Many of you might be thinking that this sounds fun and exciting and how do you sign up for this.  For starters, you can check out their website here.   Right now they are based in NYC and I believe only holding events there.  For me, I got lucky to have found this group…or I should say they found me.  I had gotten an email from someone from a PR firm that works with them inviting me to this party.  When I asked how she found me I was told that she found my blog online.  I was so happy to know that my blog was very easy to find.

Low Res_Guests Attend Lyfebulb Social Club

I think Lyfebulb has some great ideas.  I met Dr. Hehenberger at the party and she really is an amazing woman.  She has so many great ideas on how to bring together the chronic disease community.  I know many of us in the IBD community tend to just talk with others in it, but as you know, we usually suffer from more than just one disease.  A company like this will bring many of the communities together as one so there is so much more opportunities to share your stories and hear others.  As well, we will all be able to find out new treatments that we might not know exists which benefit everyone.

I really want to thank Lyfebulb to letting me join their community and I look forward to going to more events with them.  Hopefully, down the road, I will have more information on treatments and different ways to help everyone.

 

 

Follow up to “Crohn’s Disease in Teens Jumps 300% in 10 Years Fulled by Junk Food”


All our complaints over Dr Mitton’s comments made a difference.  Below is a statement she put out today.

 

20th June 2014

First and foremost I would like to apologise for the distress that I have caused by what was shown on the BBC to all Crohn’s disease and ulcerative colitis patients. I was unable to respond more quickly to the reactions to this report due to very heavy clinical commitments. I feel that what I said and the subsequent coverage has been misinterpreted and I would like to clarify this now.

I said that Crohn’s disease occurs in those who are genetically susceptible and that the unexplained recent increase in numbers diagnosed amongst young people in the UK is likely to be related to life style. I did mention pre diagnosis diet and multiple courses of antibiotics as possible factors preceding the development of overt disease in some cases. I did not say that junk food or frequent courses of antibiotics CAUSE Crohn’s disease. I am very aware there are many patients with IBD who eat a very healthy and nutritious diet and have always done so before their diagnosis.

However, since the initial report on 18th of June there have been subsequent newspaper and television reports that focus on the assumption that Crohn’s Disease seems to be “caused” by junk food and multiple antibiotics. This is not my belief and is a distortion.

I did not mean to imply any element of self-infliction and I am appalled to think this could set back public perception of IBD or that sufferers might be blamed for their own pain and misfortune.

I would like to sincerely apologise again for the distress that my comments have caused.

Dr Sally Mitton
Consultant Paediatric Gastroenterologist

Crohn’s Disease in Teens Jumps 300% in 10 Years Fulled by Junk Food


Junk Food

Now that I have your attention…the above headline came out today all over the internet.  It was from The Telegraph, a British paper.  The article can be found here – http://www.telegraph.co.uk/science/science-news/10908884/Crohns-disease-in-teens-jumps-300-per-cent-in-10-years-fuelled-by-junk-food.html.

What I wish, is that people would really think before they speak…or type.  First, the claim is that antibiotics used early in life is causing the IBD.  Coupled with that is the intake of “junk food”.  My favorite quote comes from a Dr. Sally Mitton.  She says, “Definitely, if you have a lot of junk food before your diagnosis it actually makes it more likely that you will develop Crohn’s Disease”.  Really?  REALLY?  This is by far one of the worst statements I have heard yet on Crohn’s.  If I eat bad right before a diagnosis then that was the cause.  So by her reasoning, if you are petting a dog and suddenly have a heart attack, then the petting of the dog caused the heart attack.

I really don’t know how someone is allowed to put this in writing without any sort of empirical data to back it up.  So let’s look at my life.  Before diagnosis I hadn’t really had any antibiotics so that isn’t what killed my gut.  As far as junk food, I did eat junk food but I also ate healthy food.  And what about all the people who had IBD before mass-produced sugar products?  What is the reason they got IBD.

Oh wait, it’s coming back to me know.  IBD is genetic and hereditary.  It is something that gets passed down and is in our DNA.  I guess that well-educated doctor didn’t read those articles.

Dr Sally Mitton goes on to say that people can manage their disease by altering their diet.  Um…again not true.  Yes, food can play a role for many people.  But what about people who can’t touch food at all and have to go on TPN?  As we know, there is no one diet for IBD.  Everyone is different.

I swear, every time I think we are making progress with these diseases, something comes out to push us back.  How many people are going to read this article and believe it.  Now we are going to have to hear people say.. “Stop eating junk food and you will cure yourself”.  Ugh.  Ignorance.  I can’t stand it.

As far as the antibiotics go, does she realize that antibiotics are also a treatment for CD?  Hmmm.  It can cause it and then cure it.  Amazing.

Honestly I don’t know what is worse.  A doctor that believes all this, a reporter that will write the article or a paper that will print it.

IBD Support


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.