We Interrupt Your Regularly Scheduled Programming….


I hadn’t planned on adding anything this month since I am doing the Writers Challenge and posting a post a day.  But I had an idea and I want to put this out there to get some help.

 

This goes out to anyone reading this that has IBD.  If you don’t have IBD, you can ignore this post :)

 

Ok….now that the normal people are gone, we can talk about them.  He he. 

 

What I am needing from my IBD community are some photo’s.  I am planning on making a video for World IBD Day and an idea hit.  Since so many of us were upset over CCFA’s handling of our condition in their advertising, I want to do a video to show just what it is truly like to have IBD.  So, I need pictures of you at your worst.  Do you have a bad moon-faced?  Do you have pictures of your hospital stay?  Maybe you have a stoma you want to show off.  I want to make a nice collage of them in a video. 

I will also need some triumph pictures but the majority that I need are the downside pictures.  If you have some you would like to send, please mail them to aguywithcrohns@gmail.com.  If you want yourself mentioned in the picture, please give me your name, twitter handle, website address, blog address, date of diagnoses and what condition you have.

 

Thank you everyone for your help.  I now return you to our regular programming.

Health Activist Writer’s Month Challenge – Day 4 Sharing Resources


 Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one. Remember to include sites that lead to successful self advocacy!

I won’t say much here today.  I am going to let my fellow activist to all the talking.  So here are some links to some great people and great sites.  Some you might know, others you are finding for the first time.  Enjoy.

Inflamed and Untamed – www.inflamed-and-untamed.com

Blood, Poop & Tears – www.bloodpooptears.com

The Great Bowel Movement – www.thegreatbowelmovement.org

The United Colon Blog – www.ucvlog.com

I Have UC – www.Ihaveuc.com

Girls with Guts – www.girls-with-guts.org

The Crohn’s and Colitis Foundation of America – www.ccfa.org

Love For Mutant Guts – www.loveformutantguts.wordpress.com

Intense Intestines – www.intenseintestines.org

Chronology – www.chrohnolgy.com

Karen Langston – Mind, Body, Soul – www.karenlangston.com

Crohns Disease Warrior Patrol – www.crohnsdiseasewarriorpatrol.org

My Journey With Crohns – http://www.myjourneywithcrohns.com

The Crohn’s Diaries: Living Sick with Inflammatory Bowel Disease – http://livingsick.com/

There are so many more that I could put down, but I would be typing for days.  So go check out these sites and from there you will find many others.  Have fun and let them know how you found them.

Health Activist Writer’s Month Challange – Day 2 Introductions


 

 Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?

Hello.  My name is Jeffrey and I am a Crohnie.  Well, that is how I would imagine an introduction would go in an anonymous IBD support group.  Of course, an intro like that kind of has a negative stigmatism to it because it reminds us of intro’s used in AA which, even though it is a good group, you go there because of an addiction.

Well, having IBD is kind of like an addiction.  It is something always on our minds.  We take drugs to forget the pain we are in.  And no matter how much we want to forget about it, we seek out others who have the same so we can relate and fit in.  But, IBD is NOT bad. 

That is #1.  IBD is not something we can control and it is not contagious.   IBD is an auto-immune disease and we have no control over it.  Like many addictions, IBD is condition that happens and we have no control on how it will act.  We can try to manipulate it with medicine, exercise and diet but it will ultimately act however it wants.  It is the body attacking itself so there is nothing that will spread to someone else when you cough, sneeze or bleed.  You can’t give it to someone else.  It is a genetic disorder that needs a lot more understanding.

#2 – People with IBD at times are in a lot of pain.  There are different types of disease under the IBD umbrella.  They all act differently and there are different severities to them.  But over time,  anyone with IBD will experience pain.  The worst thing about this is that the casual observer may not know this as you can’t tell just by looking at someone.   People with IBD get good at hiding their pain so you might not know just how much pain they are experiencing.  But know, it is there.

#3 – A lot of people with IBD feel alone. They don’t know anyone else with the disease and because it isn’t a well-known disease, no one understands what they are going through.   This lead me to my activism.  I grew up alone and in the dark with my Crohn’s.  There was no internet.  It was hard to find information about IBD, let alone meet people who had it.  Now with our global community, I have taken to the web to let as many people with IBD know that You Are Not Alone.  Within the past year I have learned so much about my disease and met so many great people.  This is the main reason I do what I do.  I don’t want anyone to grow up in the dark.  Whether you are 8 or 68, you are not alone with your disease.

#4 – IBD is not a death sentence.  Many people with IBD feel like their life is over.  For some that spend months at a time in a hospital, living a normal life seems impossible.  For some, they have to live with a stoma and feel like they can’t live like that.  From what I have seen and learned this past year, you can live a great life.  IBD does not kill.  I know I can get into a debate over this because IBD can cause other problems, which in turn can kill a person….but IBD alone will not end your life.  You will survive.   I recall words from a fellow activist who is currently struggling herself “You are strong, you can do this.  You are a fighter”.   IBD can and will cause depression but just know that you will live and get on with your life.  Try not to focus on the past and all the problems.  Instead try to look at what you want to do with your life and try to make it happen.  Baby steps.  Don’t try it all at once.  But you will find that if you make the attempt, you just might succeed.  The more you focus on the good, the less you will think about the bad.

#5 – IT IS NOT YOUR FAULT!!!!  I think everyone with IBD at one point in their life looks in a mirror and asks why me.  They try to look at what they did in their life to bring on their disease.  Was it something you ate, or a procedure that you went through.  As I have stated before, this is a genetic disease.  You did nothing but be born with a gene.  Nothing you did brought on the IBD.   It just chose to rear its ugly head when it did.  I have learned that instead of asking the Why Me question, I know ask, what can I do to calm the beast.

IBD really is a bitch of a disease.  It is still largely unknown to the general public and a lot more research is needed.  We need to bring more awareness to this disease.  I speak up now to help educate others.  If you meet someone with IBD, don’t be scared of them.  Don’t ask how they are because odds are they won’t tell the truth.  Deep down, they are probably hurting.  Instead, give them a hug and be there for them.  Listen to their words. No matter the age of the person, I think we are all still a scared little kid just wanting some comfort and to know that everything is alright.

Health Activist Writer’s Month Challange – Day 1 Getting Started


HAWMC 2012 slider 2 resized 600

 

Here we go again.  Seems like just yesterday I was blogging everyday for WEGO Health.  Well, it is a new year and a new challenge.  So, without further adieu, let’s jump right into it.

 Why HAWMC? This is our third year of the Health Activist Writer’s Month Challenge – why did you get involved this year? Are you a newbie to #HAWMC or a veteran?

I have to say I was torn on whether to do this or not.  Last year I got burned out from writing every day and it kind of turned me off of blogging for a bit.  When I got the email for the challenge I didn’t know if I wanted to participate.  Now I read this question, and I know why I am doing this.

I got involved this year because when I blog, it isn’t always about me.  What I write is more to inform and help others.  I am doing what I do so others can learn and know that they aren’t alone with their disease.  Yes, the stories are about me and my experience but I don’t tell them to be vain or brag.  I tell my stories to inform others.  I share my experience with LDN and Gluten Free so anyone thinking about them can see what it is like.  I don’t even write to get recognition.  I just want to help.

To answer the second question..I don’t view myself as a newbie but not quite a veteran either.  I have been blogging for a little over a year now.  I have gone from not knowing anyone online to being part of a great community.  I have met so many great people and have even been told how my blog has helped them.  Since I have been blogging almost every month since starting and already doing a Writer’s Month Challenge, I can’t say I am a newbie.  For me this is now sort of repetitious.  But I do it for you, the reader.

Now that you have read this, and if you read my blog often, I want to ask you a question.  Why aren’t you participating?  Well, for some of you, maybe you are.  But for the ones that aren’t why not.  Why not start blogging yourselves.  I can say it is definitely therapeutic and helps in releasing stress.  It is a great way to meet others in the same situation.  And it is a great way to help others.    If you do have a blog,  leave me a message telling me what your site is.  Share it with everyone.  Let’s make our great community even bigger.

Crohn’s Disease Warrior Patrol: A Charity Is Born


This is a repost from http://www.healthline.com/health-news/crohns-warrior-patrol-charity-sponsors-hospital-visits-031313  The article was written by Jaime Weinstein, a fellow online health activist

 

Crohn's Charity

No matter where you turn these days you see commercials and print ads featuring #Hashtags, links to Facebook and Twitter pages, and QR codes for corporate contests. However, social media isn’t just for advertisers; it’s for patients too.

Social networks are a means for patients living with IBD who are located across the globe to reach out to and communicate with one another. It was also the catalyst for Michael A. Weiss to create the Crohn’s Disease Warrior Patrol (CDWP).

A Beautiful Idea

In the late fall of 2012, Weiss, a lawyer, author, and long-time Crohn’s disease survivor, blogged about the need for patient support from others who understand things that only other IBD patients can. A few weeks later, Weiss was contacted via social media about meeting with a young patient named Damon, his mothers, and his older brother.

Ivy Lindsay of Comfort Ostomy Covers by Ivy was originally contacted by one of Damon’s moms to create personalized ostomy covers for Damon, who was having a hard time coping with not one but two stomas (ports in the abdomen that are used to remove waste from the body). One of Weiss’ blog readers and Facebook friends who also happens to be an IBD advocate, Jeffrey LeVine, told Lindsay to speak with Weiss about her young client.

They talked at length about the young patient and his needs, but something was still missing: another IBD patient with an ostomy whom Damon could relate to. In came Marisa Troy. LeVine introduced Troy into the fold, and few phone calls later, arrangements were made for the trio to embark on their mission to meet Damon and raise his spirits.

“Marisa was amazing with Damon and I was impressed with her ability to make him feel at ease while she was also being so candid about her own experiences,” Weiss said of Troy. You can read more about the CDWP’s inaugural visit with Damon here.

This was the kind of interaction Weiss envisioned when he blogged, “Patients helping patients is the best medicine.”

The Birth of a Non-Profit

After meeting with Damon, Weiss embarked on a quest to expand the CDWP. He wanted to create an organization to connect Crohn’s “warriors” and advocates with hospitalized IDB patients to offer them comfort and a friendly, in-person visit.

Several of Weiss’ social media contacts referred him to Alex Fair, CEO of Medstartr.com, a website that utilizes crowd funding for healthcare start-ups. With the help of Fair, a few lawyer friends, Wall Street financiers, and Foundation executives, Weiss crafted a multi-phase business plan for the CDWP and will file for Tax Exempt Status from the IRS as a Charitable Foundation under section 501(c) 3 within the next few weeks.

The CDWP: Not Just for Crohn’s Patients

The CDWP is not just for Crohn’s patients, it’s for all IBD “warriors.” And through the Medstartr initiative, Weiss is hopeful that CDWP will be embraced by IBD medical practices, psychological practitioners, hospitals, and pharmaceutical companies.

If you would like to become an IBD “warrior” helping other patients in your area, you can sign up at: http://crohnsdiseasewarriorpatrol.org/.

 

I was happy to be involved in this meeting with Damon.  I felt like my part wasn’t that big and I was just doing what needed to be done.  My original post about this can be found here http://aguywithcrohns.com/2012/12/31/goodbye-2012-hello-2013/.  

“Ah The Sweet Nectar of the Gods”


Every morning I think this as I take my first sip of coffee.  Ever since my days working in Starbucks I have had a love for coffee and I look forward to it every morning.

But this post is not about coffee.  Today, this phrase will be said about another liquid, a liquid that has been around for centuries.  This liquid is used in every culture in one form or another.  It is so old that it is even mentioned in the Bible, I believe starting with Noah.  He drank this after he found land when the flood receded.  This sweet nectar is of course wine.

A couple of months ago on Twitter someone wrote that wine seemed to help their Crohn’s.  For whatever reason, whenever they drank wine, they felt better.  Another person and I started joking about it but it got me thinking.  What if there is some connection between wine and IBD.  What if drinking a glass a day somehow could reduce symptoms and help.

By now most people know of the health benefits of wine.  We know they have tons of antioxidants. 

“Antioxidants in red wine called polyphenols may help protect the lining of blood vessels in your heart. A polyphenol called resveratrol is one substance in red wine that’s gotten attention.  Resveratrol might be a key ingredient in red wine that helps prevent damage to blood vessels, reduces “bad” cholesterol and prevents blood clots.” – http://www.mayoclinic.com/health/red-wine/HB00089

 

Lower Your Cholesterol

Alcohol also can have a very powerful effect and increase HDL “good” cholesterol by 20% if used moderately and in the context of a healthy diet along with regular physical activity, says Rimm. Higher HDL levels are linked to lower risks of heart disease.

“The research evidence points to ethanol, or the alcohol component, of beer, wine, or spirits as the substrate that can help lower cholesterol levels, increase ‘good’ HDL cholesterol,” he says.

Boost Your Brain

A recent study shows a boost in brain power for women who enjoy a little alcohol. The study, published in the Jan. 20 issue of The New England Journal of Medicine, evaluated more than 12,000 women aged 70-81. Moderate drinkers scored better than teetotalers on tests of mental function. Researchers found a boost in brainpower with one drink a day. Moderate drinkers had a 23% reduced risk of mental decline compared with nondrinkers.

source – http://www.webmd.com/food-recipes/features/wine-how-much-is-good-for-you

 

Now of course as you can see, none of these studies have anything to do with IBD…so I decided to do my own experiment.  I have never been a big wine drinker and when I do drink wine, it is usually white wine.  Over the years though I have wanted to get into red wine so now was a good time to start.  I have a bunch of reds just sitting in my apt.  Many were gifts that I received and of course never drank.  So I took one that was supposed to be really good and cracked it open. (Yes it was really good..best red wine I have ever had)  I limited my self to only one glass per sitting so it took about a week for me to finish it.  Funny thing happened…I started feeling better.  I had been having a flare and it was now going away.  My trips to the bathroom were slowing.  Could it be the wine was actually helping.  I decided to go a couple of days before my next bottle.  

In the non wine days, nothing bad happened but I didn’t feel like I was reaching some great breakthrough either.  So, crack open another bottle.  This time I started spacing out the days I was drinking it.  There were days I just wasn’t in the mood for it, other days I had work to do and didn’t want to drink that night.  So it started to become a rarity that I was drinking and I have to say, I have started to feel bad again.  The past couple of days I have had some depression.  My bowel movements have increased again.  I have been having some pain in the mornings.

So this up coming week, I will try to drink more wine again and see what happens.  It is hard to believe that something that is so simple can be a big help.  I will keep you updated on how the experiment is going.  If I start to feel better again, I might start actually keeping a journal to document this as it might be a real worth while experiment. 

Today is Friday.  It is snowing outside.  It is cold.  This week at work has not been good.  I can think of nothing better than ending the night and week with a little libation.  Let’s raise a glass of vino to our health and hope that maybe one day we can all literally drink our troubles away….or at least our diseases.

World Rare Disease Day


Today is World Rare Disease Day.  One of the first things I thought when I heard this was, “Do I fall in this category?”  Yes I have a disease but is it considered a rare disease?  Just because so many people have no idea what IBD is doesn’t necessarily make it rare.

According to the National Institute of Allergy and Infectious Diseases (NIAID), a division of the US Department of Health and Human Services that accumulates and publishes the statistics for Crohns disease and other health problems, one in 500 people suffer from Inflammatory Bowel Disease (IBD), the group of diseases that includes Crohns syndrome and ulcerative colitis. The National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK) reports similar numbers. Approximately 544,000 people suffer from IBD in the United States. There are typically three or four new cases per 100,000 people reported annually.  – Article Source: http://EzineArticles.com/289309

Looking at those numbers, 1 in 500 people suffer from IBD, I would say no.  But go online to a social media site like Twitter and anyone with IBD is proudly letting everyone know they are celebrating the day.  As much as I love advocating for my disease and help bring awareness to it, is it right to drown out others trying to raise awareness for really rare diseases?

As I was pondering this at 8:00 in the morning, I was forwarded an article found here http://bites.today.com/_news/2013/02/27/17121375-restaurant-to-non-patron-you-must-pay-to-pee?lite  This isn’t necessarily about any illness but anyone with IBD understands the problems with this kind of thinking.  And that leads into how so many people don’t know about IBD. 

So is it a rare disease because people don’t know about it?  About 10 years ago most people probably didn’t know what HPV was.  Now it is known that it is the main cause of cervical cancer.  It wasn’t a known disease yet it was far from rare as it was determined that almost everyone that has had sex has at one point in their life had the disease.

I talk to a woman online who is pretty big in the IBD community.  She suffers from a condition that causes inflammation all over her body.  Everyday is a challenge for her.   No one even knows how to treat it at this point because not that many people suffer from it.  To me, this is a rare disease.  This is something we should spend the day talking about and educating people on.

I love advocating.  I love everyone I have met doing it.  I talk to so many great people who have decided to speak up for IBD.  We have a big community and we are becoming very vocal.  But are we rare?  I wish I could say yes, but we aren’t.  I think we need to put our needs aside for one day and focus on those that really need help, because with rare diseases, there is little help out there.  There are almost little amounts of treatments available and even less cures.  For us with IBD we have a lot of options, even if they aren’t helpful.  There are many that suffer with no treatments available.  Today I will think of them and hope for some help.  It is the least I can do.

Wego Health HAAWards Finalists


I know I haven’t written much in the past month.  I have been really busy with so many things that I haven’t had the time to come on here.  But, I do now and I have great news (well, great for me)  :)

Last year Wego Health opened up nominations for their Health Activist Awards and I was nominated for the Ms?Mr Congeniality award.  This past week they announced all the finalist and I made the cut.  So I am now one of 5 finalists.  Sadly I am not up for any of the other awards I was nominated for but that is ok.  Just being nominated is an honor.

So, I was sitting here thinking about this award and just what the category is all about.  Mr. Congeniality.  Anyone that knows me might say I am far from this in real life.  I can be very loud at times and even rude.  I would have to agree with those people because, yes, I am.  I know I am and I am ok with it.  But online, I am another person.  When it comes to an illness, you have to be different.  I don’t mean in a talk in hush tones and walk on eggshells different.  It is just that I know what it is like to be sick with a disease no one really understands except for the people with it.

Part of going through life with IBD is that no one can see it and most definitely most people don’t understand it.  Heck, CCFA wants to show everyone it is a pooping disease.  Because of this many of us are depressed, angry and just can’t cope.  It isn’t easy to deal with a disease when no one around you can help you out.  I understand all of this and I know if I spoke to anyone with IBD in a nasty tone, it would not go well.  So I have to alter who I am.  When it comes to people with any illness, I turn into a caring person.  I used to not want to deal with illness but now, I have made it a part of my life.  And I am using it to grow.  Because I change who I am to people online, I am trying to be a better person in my real life also.  I am trying to be more caring, more understanding and less abrasive.

People online see me as a congenial person and when my wife saw I was nominated for this award she laughed.  This really hit me as it was really then that I noticed I was two different people (that’s the Gemini in me).  So just being nominated for this award has already helped in changing me.  I am now trying to be a better person.  Not just to sick people, but to everyone.

As for the award, I share the honor the honor with some other people who have now opened my eyes to some other illnesses that I didn’t even know existed.  I hold nothing against these people even though I am battling with them for the award so I want to share who they are and their site.  They are:

Barby Inglewww.barbyingle.com

Pamela Sloatehttp://dystoniamuse.com/

Peachy Painswww.peachypains.com

Tosha Sisler – www.bottledtime.wordpress.com

Good luck to everyone for the final spot and no matter who is given the award, we are all winners.

Gluten Free Rant


I went out to eat this weekend and something jumped into my head that really got me thinking.  Many restaurants are now serving gluten-free meals.  They recognize there is a big issue out there and they are now catering to the many people out there that can’t or won’t eat gluten.  I like that.  I am happy for that.

I work in the hospitality industry.  Maybe one day I will own my own restaurant.  What I know is that when you open a restaurant and create a menu, you can’t keep that same menu forever.  You have to change it over time to keep up with trends and what the customers want.  Many restaurants do this and are now moving to keep up with the gluten-free movement.  This is a good move on their part.  There are even gluten-free restaurants which I think is great.

Now, here is my rant.  I went into a big national chain restaurant (who will remain nameless) and they had a gluten free menu.  I loved it because items I thought had gluten in them on the regular menu turned out to be gluten-free.  I placed my order (my wife ordered from the regular menu) and then they brought out the bread.  Before I went GF I loved their bread.  Now, I looked at it and drooled knowing I can’t touch it.   On another day I was in a diner and again, the bread basket comes out with delicious looking items.

With this big push to be Gluten Free sensitive the one thing that hasn’t really changed is the bread basket.  As anyone on a GF diet knows, this item is a major no-no.   Bread is a big component of gluten.  So why isn’t anyone focusing on this item.  This is one item to change very easily.  There are tons of GF breads and rolls out there.  There are GF bread sticks and crackers.  Why can’t restaurants include these items for us GF customers.  Why are we forced to either drool over the regular bread baskets or sit there alone.    Now, I am not asking these restaurants to make their own.  I know there are many places that are real small and don’t have the kitchen space.  I am fine with that.  But you can buy them and put them in their own basket for us GF dieters.

What also gets me is in the chain restaurant they at least asked if we wanted the bread.  In many places they don’t ask. I know first hand bread costs have gone up.  If they would stop bringing out the bread automatically they would probably save money which they can spend on the GF bread.

Eating out in a restaurant should be an enjoyable experience.  I used to love going out to different places.  Since going GF I enjoy it less and my selection of restaurants have decreased.  Being teased at a restaurant makes the experience even worse.

Ok, rant over.  And now I want a slice of bread.