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

2015 Super Bowl Pool ~ for The Intense Intestines Foundation


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.

Super Bowl Pool 2015If 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


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!

What Is Wrong With Me??


Have you ever asked yourself this question? You can be sitting there, just trying to think of a word that has slipped your mind and you think what is wrong with me. Or you can be seriously ill, can’t get diagnosed by a competent doctor and again, you ask the question.

These past couple of months have been very busy. I am sorry I haven’t kept up with this blog. When I last left off, I was in the process of changing GI doctors. Since then, I have seen the new GI, been in a bad flare, and have had knee pains from arthritis every day. My body feels like it is falling apart and I have started to ask, what is wrong with me? I used to be able to do so much.

So much is happening in my life and I don’t even know where to start. For my Crohn’s, around February or March (can’t remember when) I went off the gluten free diet. Since then I have slowly felt sick again, entering into a flare. When I saw the new GI, he wanted to try some other meds, including Prednisone. I kind of talked him out of it as I don’t react well to it. He allowed me to just take Immodium. Hopes were that this would slow the diarrhea, help hydrate me, and ultimately help me heal. After a week of that, I failed at it. It’s been about a month and I am doing better, but still flaring. I see him again in November and I worry what the results of the meeting will be. I am thinking of going off LDN and trying a new biologic. What is really comes down to is that I think ultimately I will have to keep a gluten free lifestyle for the rest of my life…and that doesn’t make me happy.

One good thing that has happened lately, is that I participated in a research study from 23 and Me (https://www.23andme.com/ibd/). From this research I found out so much about my DNA. First, I found a second cousin which has led me to find out so much about a part of my family I didn’t know existed. So Cool!! Also, from this, I was able to have my DNA analyzed (www.promethese.com). I found out from there that I am more prone to get Crohn’s Disease (really??) and that I have a higher chance of being a celiac. Gluten Free is really sounding like it is the way to go.

The third major part of my life is my knee. I have developed arthritis in my knee. Physical therapy didn’t help one bit. Every day I am in pain. I hate it and now I have to decide what is the best course of action. Do I get injections for years which only helps temporarily? Or do I insist on a knee replacement, which means surgery. It means hospital stays, rehab, and missing work for who knows how long.

When did I get old? When did my body start to betray me? What is wrong with me? I wish I had answers to my health. I know many of you with IBD wish you had answers for your issues.  So now I want to know…how do you feel?  What is wrong with you and what are you doing to fix the situation?  Do you have any suggestions for me?

Goodbye To My Old Life


Good Bye

 

This happens to many people every year.  Many of them deal with it and move on.  For us with incurable diseases, it is a major issue.  I now have to deal with it and I am scared.  I am talking about changing doctors.

For years I didn’t have a General Practitioner (GP) and I was fine with that.  I have been jumping around from doctor to doctor and that really hasn’t bothered me.  I always had my GI I could talk to and help me work out any problems.  With my insurance, I can see any specialist without a referral so I felt like I didn’t need a GP.  My GI doctor is a whole other story.  I have been seeing this one for about 6-7 years now and have built up a great relationship with him.  If you read my blog you know some of the issues I have had and how caring my GI has been to them.

Yesterday I came home and saw a letter from Mt Sinai.  I thought it was junk mail and wasn’t going to open it.  Something made me though and I am glad I did.  It was a letter saying my GI was leaving.  I felt so scared all of a sudden.  I don’t worry so much about finding a new one because there are a couple of GI’s with Mt Sinai I know of that are really good.  What scares me is that I have to start over.  I have to share my entire history.  I have to work with a new thought pattern from the doctor.  Worst of all, I have to hope the new GI will approve the LDN I am taking.  That is what scares me the most.

I know in the long run, things will be fine.  I know I really shouldn’t worry as much as I am, but I can’t help it.  Going into something new like this always worries me.  It is just who I am.  Luckily, I have had some good support online from some great people.  They are helping to reduce my stress.

What I would like to know, is how many of you have had to deal with this and how did it turn out?  Did everything go smoothly?  What are your thoughts on changing GI’s when you have a great one?

I do have to say, I will miss my GI a lot.  Luckily he is actually moving closer to me. I just can’t get there and get to work in the same day.  He won’t have weekend hours so I don’t think I will be able to see him anymore, hence I have to look for a new GI.

Crying

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.