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.

The Foul Bowel – A Book Review


I recently finished reading The Foul Bowel: 101 Ways to Survive and Thrive with Crohn’s by John Bradley and I have to say, if you suffer from IBD, especially Crohn’s Disease, then you must read this book. 

First let me say that it took quite awhile to read this book but that is no reflection on the books part.  I usually read my Kindle going to and from work and at night I wind down by watching TV.  So I basically read this book in some spare time or before going to bed if nothing was on TV.  So it was my own fault for taking a long time to read it. 

I actually thought this book was interesting.  It is a recap of John’s journey with Crohn’s disease from his young adult life to the present.  He talks about his numerous surgeries (13 of them) and how he deals with the disease in his life.  He learned to tailor his lifestyle around his disease instead of letting his disease run his life.  He stays upbeat throughout his struggles and always looks on bright side of life (couldn’t pass on the Monty Python reference since John is British). 

What really got me about John is that even when he was near death, he focused on the good things in life.  John is inspirational to so many people.  Even though throughout his life he suffers, he manages to hold a job, find love, and live his life.  He deals with tons of incompetent doctors all the time and still doesn’t let that slow him down.

Throughout the book John gives his words of wisdom…all 101 of them.  They are his versions of how to deal and beat this disease.  They are usually right on the money and I found myself thinking…why didn’t I think of that before.    John also uses humor to liven up his story.  Without it you would look at his life and cry for all his pain but he looks at his life and chooses to laugh.  Laughter is a source of healing and it is no wonder why John has continued to beat this disease.

Check out the website , read the reviews, then order your copy.  Then go to Twitter and let John know how much you loved the book.

“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.