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.

 

The Inspirational Blogger Award


The Inspirational Blogger Award!

 

very inspiring blog award

  • Thank and link the amazing person who nominated you
  • List the rules and display the award
  • Share seven facts about yourself
  • Nominate fifteen other amazing blogs and remember to comment on their blogs to let them know you’ve nominated them. (provide a link to your post)
  • This rule is optional you can proudly display the award logo anywhere on your blog e.g. on your sidebar and also follow the blogger that nominated you.

So first,  a very big thank you to Meranda Roben O’Hara whose blog can be found here.  It is nice to be recognized by the community.  It even nicer to know that my blog is helping someone.  Meranda, I love your blog and find you just as inspirational.  Keep up the great work you are doing.

Seven Facts About Me:

  1. I was afraid of dogs before I got my little Sable.  She was only 4 lbs when we got her.  She was very scared of us and wouldn’t interact much in the beginning.  When she finally warmed up to us, she got in play stance and barked at me.  I got scared cause I thought she was angry and wanted to attack me.  4 1/2 years later, she is my little baby and I have no fears of her.  She has taught me many things about enjoying life.
  2. I had Crohn’s Disease for about 25 years before I really understood what I had and opened up to others.  I went through life pretty ignorant of what I had and just dealt with it.  It wasn’t until I went into my worst flare that I decided to go online and do research.
  3. I am very big into Star Trek.  I wouldn’t call myself a Trekkie or Trekker, but I know quite a bit about the franchise.  I have seen every TV episode and movie, more than once.
  4. I am gluten free.  2 years ago, I went gluten free to help with a flare and have never looked back.  It is now part of my life and has become another lifestyle that I preach.  You can check out recipes I am posting on my other blog, The Gluten Free Gluttonous Chef.
  5. I have been very lucky to meet some famous IBDers.  Sadly, they aren’t celebrities like Mike McCreedy, but are still big within our community.  I have gotten to meet Megan of TGBM, Sara from Inflammed and Untammed, Brian from Intense Intestines Foundation, and Frank Garufi Jr of The Crohn’s Colitis Effect, just to name a few.
  6. I am a trained chef.  I originally went to school to cook professionally and I have the degree to back it all up.  However, I couldn’t take the heat (literally) so I left the kitchen.  I do cook at home though and have tons of fun doing it.
  7. I have worked in almost every aspect of the hospitality industry.  I have worked in airports, hospitals, nursing homes, restaurants, quick service coffee shops, and hotels.  I have been both front of the house (dealing with customers direct) and back of the house (behind the scenes).

My Nominations

  1. My first nominations (and I think she doesn’t like these kind of awards) is Marisa from http://keepingthingsinsideisbadformyhealth.wordpress.com/.  Marisa, you are so inspiring to so many people.  Even though your advocacy is still young, you have gotten many people to not only listen to your story but open up about their own.  I know you still struggle, but that is all part of what makes you inspirational.  You speak from the heart and show us not only the good but the bad.
  2. Next is Jacquie from http://gutwrenchingtruthaboutcrohns.wordpress.com/.  Her blog is about her adventures with IBD.  She talks about the side effects which at some point we all experience but sometimes don’t want to talk about.
  3. Third is Amanda from http://warriorchick32.wordpress.com/.  I have gotten to know Amanda a little from our chats on Twitter.  Recently she was on a reality show on TLC called America’s Worst Tattoos.  Not only does she talk about her life with IBD, but also post’s recipes which always look so delicious.
  4. Fourth is Michelle from http://digestingmythoughts.com/.  Michelle talks about what it is like for a young adult to go through this horrible disease of IBD.
  5. Can’t forget my IBD brothers.  Fifth is Josh from http://jrobinjrob.wordpress.com/.  Reading an IBD blog from a guys point of view is rare.  It is always nice to hear it.  Josh is always trying to help educate others and I love that.
  6. Next, and I can’t forget her, is Sharon from http://www.ibdjourneys.com.  Sharon has been dealing with the negative parts of IBD for way to long.  Her site is a place where everyone can come together to talk about their IBD journey.
  7. Another wonderful person is Stacey from http://staceydearest.wordpress.com/.  She is another young adult and is from the heart of America.  She talks about her life with IBD.
  8. Shari from http://ihaveulcerativecolitis.wordpress.com/ is yet another inspirational person.  Her blog is about her life with UC and her stoma Fred.
  9. Another IBD brother I like is Rasheed from http://rasheedclarke.com/  Not only does he show how UC doesn’t have to stop you from doing things but he has also written a book of short stories.
  10. Of course, no list would be complete without mentioning Ryan of http://www.crohnsguy.com/.  This guy swam Lake Erie to raise awareness for IBD.  Lake Erie….one of the Great Lakes.  Just shows you that IBD won’t stop some people.
  11. Next, Mary Claire from http://www.resiliencyspace.com/.  Not only has she come along way in dealing with her disease, but she shows just how strong you can be with it (literally).

The last set of nominations were listed in my seven facts about me.

 

 

The “R” Word


According to Ali G it is Respek.  According to another IBD blogger, Mary Claire, it would be Resiliency.  For me it is bigger then both of those words put together.  This week, I heard the “R” word officially for the first time since getting Crohn’s Disease…Remission.  My colonoscopy was back in February and I knew I was healed more than the previous year.  Sadly the pictures didn’t save so I couldn’t actually see the results.  This week was my first appointment with my GI since then.  After a little chit-chat and a quick exam, he went on his computer, pulled up the scope results, and mentioned how there was no Crohn’s activity and that I was in remission.Happy

Needless to say I was a little shocked.  I knew I was doing well.  I don’t show many symptoms these days.  I didn’t know I was completely in remission though.  I was so happy.  But like all things, the moment has now passed.  Of course, I am still happy, but just because the Crohn’s is in remission, doesn’t mean I still don’t get symptoms.  Because this is such a nasty disease, even if my intestines are healed, I can still show signs of the damn disease.

The first sign is my joint pains.  Both my knees and my knuckles get bad arthritic pain at times.  Then there are the mouth sores that come on at any given time.  Next are the skin problems like rashes and pimples.  The list can go on and on.

But what does remission mean..to me.  Well, it actually means a lot to me.  For the first time in a long time, my medicine is working.  After years of throwing poisonous medicine into my body without any results, I switched over to a non-conventional drug.  2 years after starting the med, I am in remission.  I would say it is working perfectly and scientist really need to start studying the role Naltrexone can play in IBD.  Another great thing in all this is that my doctor is also convinced that LDN works and might start giving it to other patients.  I was his first and his guinea pig.  I would say the test has been successful.

Another thing this means to me is that diet does in fact play a role in IBD.  For years I ate what I wanted and never healed up.  Along with the change in meds, I also went gluten-free.  It has been a bumpy road in my gluten-free journey and I really have to fight some cravings every now and then.   But ultimately it really has helped in my healing process.

Now, please just know, I am not saying that if everyone took LDN and went GF that they would achieve remission.  Everyone is different.  What works for one person not might work for someone else.  My results may not be typical.  I don’t know since there are no studies showing a correlation.  So please, don’t stop your current therapies to try mine just because I got results.  Whatever you are doing might give you the results you need.  If you are not there yet, be patient.

So for now I will sit back and enjoy what this word means to me because I know like so many others know…that this feeling can go away at any minute.

Crohn’s Forum


logo

 

This is just a little post to let you know of some more good things happening.  Recently I was asked to do a monthly post for The Crohn’s Forum’s blog page.  So far there are three others doing post’s for them and many of you will know these names.  They are Jackie from Girls With Guts, Jessica from Uncover Ostomy, and Kathleen from Crohnological Order.

So far all of the post’s I have done for them have been different from what I post on here, and that has been the challenge for me.  As you know, my posting have declined lately.  One of the reasons for that is I don’t know what to talk about.  I have been very busy lately and haven’t had time to focus on my disease.

So, I know I have asked in the past…but what would you want me to talk about.  Are there any topics I haven’t covered that you would want me to talk about?  I am pretty open to anything and as you know, I won’t hold back.  While you think about it, go check out the Crohn’s Forum’s blog site and while you are there check out the rest of the site.  You might meet some new people there and find a new friend.

I do have to say, one really cool thing about their site is their doctor directory.  They have a list of doctors from all over the world with reviews from patients.  If you need to find a new doctor, this can be a great tool for you.

 

IBD Support


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.

Meetup 1

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

I Have A Dream


MLK I Have a Dream

Today, January 20th, it is Martin Luther King Jr Day in the USA.  For anyone that doesn’t know who he is, MLK was  an American pastor, activist, humanitarian, and leader in the Civil Rights Movement.  One speech he is well-known for is his “I Have A Dream” speech.    Part of his speech was, “I have a dream that one day this nation will rise up and live out the true meaning of its creed: “We hold these truths to be self-evident, that all men are created equal.”  Also, “With this faith, we will be able to hew out of the mountain of despair a stone of hope. With this faith, we will be able to transform the jangling discords of our nation into a beautiful symphony of brotherhood. With this faith, we will be able to work together, to pray together, to struggle together, to go to jail together, to stand up for freedom together, knowing that we will be free one day.

Now of course, MLK was talking about racism and how one day everyone will be judged as equal and not be looked at for the color of their skin.  This speech was given on August 28th, 1963.  Times were definitely different back then.  Looking at our times now, a lot has changed.  To start, we have a black president of the USA.  Segregation is illegal.  In most places, you aren’t judged by the color of your skin.

But, when you do look closely at the times, some things haven’t changed.  Back in 1963 the president was John F Kennedy.  As many people now know, he suffered from many illnesses, which back then were kept secret.  One of those illnesses that he is thought to have had was IBD.  Not much was known about it then and there weren’t a lot of treatment options.

Fast forward 50 years and a lot more is known about IBD.  We have many treatment options to us, both medicinally and surgical.  However none of these treatment options are cures.  Anyone with IBD has it for life.  Sadly, a lot of us won’t even be able to experience some of these treatments because once again we have inequality.

Instead of race being an issue, this time it is wealth.  Crohn’s Disease and Ulcerative Colitis can occur within anyone.  It is said that about 1.4 million Americans suffer from IBD.  The disease doesn’t care if you are white, black, asian, or hispanic.  However, where the inequality comes in, is in the treatments.  Many of the drugs are expensive.  If you don’t have the money, you can’t have the drugs.  There are some exceptions and the drug companies do help some people.   Sadly though, there are many people out there suffering every day because they aren’t being treated.  They are ignored because they don’t have health insurance.  They are out of work and don’t have the thousands of dollars needed for a month’s supply of medicine.  These people are pushed aside and told that they can’t have something because of their status in life.

MLK had a dream.  His dream was that African-Americans would be treated as equals.    For the most part, his dream has come true.  Now, I have a dream.  I have a dream where one day people will be allowed to be given medicine regardless of the amount of money they have.  I have a dream where one day people will be treated for their illnesses because they are sick and not because they can pay a bill.  I have a dream that one day IBD will be looked at as life ending diseases and a cure will be researched and found.  I look forward to when IBD will be given the respect it is deserved.  And I will end this with the final words of MLK’s speech:

And when this happens, and when we allow freedom ring, when we let it ring from every village and every hamlet, from every state and every city, we will be able to speed up that day when all of God’s children, black men and white men, Jews and Gentiles, Protestants and Catholics, will be able to join hands and sing in the words of the old Negro spiritual:

                Free at last! Free at last!

                Thank God Almighty, we are free at last”

Happy New Year – A look into 2014


Wow, it has been awhile since I posted anything.  I am sorry for that everyone.  Life has been real busy, especially at work.  A lot of good things are happening though so even though I am busy, it is a good thing.

I recently started working with The Intense Intestines Foundation (www.intenseintestines.org).  I don’t want to say just yet what I am working on but I will definitely reveal that in a couple of months once all the details are worked out.  I will say it has to do with supporting others with IBD and I can not wait to get started.  I also have been working with The Crohn’s Journey Foundation (http://thecrohnsjourneyfoundation.org/).  Again I can’t say just yet what it is I am working on but that will be revealed next month if all goes well.

So how was everyone’s holiday season?  Did you have fun and do anything special?  I know a lot of people I talk to online spent it in the hospital.  Myself, I spent it on a cruise down south.  My wife and I took a Christmas cruise to Florida and the Bahamas.  It was reflecting on the cruise that got me to write this blog.  I was wondering how many of you with IBD find it hard to travel and go somewhere? 

This was my first cruise where I am gluten free.  We had done some research and had read that there would be plenty of options for food for me.  I really didn’t worry about it.  I should have.  My first clue was when we first got on the ship and went to lunch.  The only thing listed as gluten free was the mashed potatoes.  Good thing I know what normally has gluten in it so I was able to play it safe.  This theme of lack of gluten free items would carry on throughout the cruise.  Most of the desserts were not gluten free.  I started to get annoyed because the reality is that it isn’t hard to do.  They did have GF bread and it was ok.  My dinners were altered to be GF and I was happy for that.  But for desserts, they could have made a flourless chocolate cake.  I am sure many people would eat it.

Overall, I had fun on the cruise.  We went to Cape Canaveral in Florida, Nassau Bahamas and their private island in the Bahamas.  I was lucky and had no major issues with my Crohn’s.  I was able to go out and have some fun.  I even was able to indulge in a little alcohol…ok…it was more then a little.  I did worry at times that I might have some problems but luckily my guts stayed quiet.

I would like to know what some of your tricks are travelling.  Do you pack extra clothes?  Do you take certain meds to calm the guts?  I remember take Lamodal on one cruise about 3 years ago.  I helped me enjoy myself and gave me a life off of the toilet.  Thankfully, I didn’t need it this time around.

Well, vacation time is over and it is a new year.  I think this is going to be a great year.  I myself am working on so many IBD related things.  Besides IIF and TCJF I will be working with GYGIG again in June.  I might do the CCFA Takes Steps this year.  So much to look forward to this year.  I hope to post more often and will let everyone know about everything that is going on.  I do want to say that if you live in the NYC tri state area, we have some good things for you this year.  But that is another post for another time.