Category Archives: Advocacy

Decency, IBD, and Blogs….What should be allowed?


So yet another blog inspired by a fellow blogger. This one is about someone that is in the hospital at the moment. She is having a tough time and is on pain meds. This is causing her to no be completely “with it”. In her haze she posted a blog with pictures. Of course, this is showing the dark side of the disease. She has been requested to remove the blog by some loved ones and she doesn’t know what to do.

This brings me to my topic…what is considered decent enough to blog about? IBD has big ups and downs. When the downs hit, they usually hit hard and for many people there are more downs than ups. Some people spend a lot of time in hospitals on pain meds. This is a fact and a way of life for so many people. It can’t be avoided. I have seen so many people talk about how bad they are doing and wondering if they should go to the ER. Whether they are having stricture problems, fistules, abcesses, gallbladder problems, overall pain or a number of other issues it always comes down to “am I sick enough to go to the ER?”.

Now for some of them, they are avid bloggers. If they are spending a lot of time in the hospital, should they just stop writing because they aren’t home? Should blogging just be done when your having a good day? The point of blogging is to get things off your chest and let others know out there that they aren’t alone and inform them of what the disease is all about. That includes hospital stays.

In my opinion, I don’t see anything wrong with blogging from a hospital bed. If you want to take pictures of your ragged self in a gown, then that is fine. It is your choice. If you want to make a video and the hospital allows it, more power to you. People have a choice to veiw these or not. A lot of people like to post pictures of their surgeries and their scars. This could be graphic and again, as long as you post a warning to your blog, and you are ok with showing them..then do it.

What people need to understand is that IBD is an ugly disease. There are a lot of problems that arise from it. If we were to just blog about the good days, there would hardly be anything to blog about. Luckily I haven’t had any really bad days since I started blogging but rest assure, if I do, it won’t stop me.

Plagiarism on the internet


Earlier today I saw my online friend Sara from Inflamed and Untamed complaining.  Now if anyone of you have seen her videos or read her blogs, you know she is a kind-hearted person.   For her to be pissed off, something bad had to have happened.  Sure enough, she was writing how someone stole her story and put it for themselves.  The worst thing is that this time (yes I said this time) it was a guy stealing the info.

Over the past month or so, Sara has been talking about how people are selling her bracelets as their own and using parts of her blog as their own also.  They give no credit to Sara and they are passing their work off as their own.   Today I think was the last straw when it was a guy doing it.  He took her “about me” section of her blog and posted it on his site to make it look like his.

My first question is Why?  Why would you want to steal someones elses bio to make it look like your own.  I don’t get it.  Also, why would you want to steal any of the blog?  If you are choosing to create a blog online and open yourself up to others…then do it.  Give out your own details.

Now when I sit down to write my blogs, I never look at someone else’s first.  I just log on and write what is on my mind.  Blogging is like a journal only everyone in the world can see it.  What I write comes from my heart and mind.  I refuse to use someone else’s words.  What would be the point.  Also, I want to point out that blogging is a choice.  No one is forced to write a blog.  It is a conscious choice one makes.  so why steal someone else’s words.  I don’t get it.

My second question, and this is directed to anyone plagiarizing, Who the hell do you think you are?  Where do you get off stealing someone else’s thoughts and words.  Sara is very popular in the IBD community.  Did you think no one would notice that you are stealing her words?

Now I am still small potatoes.  Not many people are reading this right now, so I don’t worry about plagiarism.  But one day I want to be as big and popular as Sara.  And when I am that big, I hope no one chooses to steal my work.  I, like every blogger out there, have chosen to open our hearts to the world.   They are our thoughts.

Now, there is a way to copy-write your work online.  Sara has recently done that, but from what she told me, it only covers her blog, not her bio.    To me this is just wrong.  It should be that if you get a copy write, it should be for all information not just some.  In real life, if you steal someones name and information and use it elsewhere, you can go to jail.  It is illegal.  But if you go online and do the same, apparently it is ok.  There is something wrong with that.

I hope anyone that reads this will agree with me but please do not repost this as your own work.  You may share the blog, but do not pass this work off as your own.  I am from NY originally.   We don’t take kindly to theft.  Also, I truly believe in the words of David Banner…”Don’t make me angry.  You won’t like me when I’m angry”.

And Sara, if you are reading this…I know I joked about it on Facebook, but I hopefully didn’t steal any of your work.  🙂

IBD and Sensitivity


Over the weekend my eyes were opened to just how insensitive people can be, especially to someone with IBD.   Most names will be left out so as not to totally offend the parties involved in the incident.

Many of you might read Crohn’s Advocate and recently read an article in there about Mike McCready who is the lead guitarist for Pearl Jam.  The article talks about his struggles with Crohn’s Disease and how he turned it into a positive experience.   I found this article to be great and I found a new respect for him and Pearl Jam.   So, on Friday night, while on Facebook, I saw a link from The Great Bowel Movement directing everyone to Like a comment made by another activist to a radio DJ in Chicago.  Turns out this DJ made a comment (I believe on air) about how Mike McCready should have stayed silent about his disease and referenced the article on their Facebook page.

Well, that was enough to set me off.  Attack a fellow IBDer from one of my favorite bands of all time.  Gloves were off.   The original activist that heard the comment was heading out and couldn’t continue to fight this battle, so I picked up the baton and ran like the wind.   I must have posted in 10 different groups on Facebook with a link and description of what happened.  I then went to Twitter and Tumblr and again posted.  I also Twitted Mike himself to let him know what happened.  I don’t know if he read the Tweet.

As of 7:30 pm on Saturday there are 91 comments on the Facebook page from many IBDers.  Everyone was attacking the DJ.  Eventually the DJ tried to apologize, but he compared what we go through with his withdrawal from drugs.  Needless to say that drew more irate comments.

I truly couldn’t believe how many people flocked to Mike’s defense.  It brought tears to my eyes that I could not only rally so many people to help out Mike but that so many people could be so open about their disease.

People…Crohn’s and Colitis is a serious disease.  It isn’t just a stomach flu or some slight tummy ache.  There is a lot going on within the body with these diseases.  When will people realize that they are serious diseases.  If your going to talk about any disease, joking or not, make sure you know about it.  Don’t be ignorant.

Mike McCready…if you are reading this (I know your not but I can dream), you have a community behind you.  You have done so much for us and we have your back.  Thank you for all that you have done, all the money you have raised, and blessing us with your sweet sound that your fingers make.  Keep up the great work and help stamp out not only IBD but stupidity and insensitivity.

IBD Advocacy….It’s Not Just For Women


I have had Crohn’s for 23 years now and never in all that time have I thought I would want to advocate for the disease.  In fact, I kind of denied that I even had it.  I didn’t want to face it.

Earlier this year in January I was at the lowest point with this damn disease.  I was going to the bathroom 30 times a day and having a lot of pain.  Nothing, not even my meds, was helping.  It was then that I realized that I had to face this disease head on and acknowledge it.

I went online to look for help for the first time in my 23 years.  I thought I was so bad that I was going to have to have my intestines removed so I started researching ostomies.  And that is when I found Maggie on YouTube.  From there, I saw she watched some videos which I eventually did also…and that is how I found Sara (inflammed and untammed).  Doing some more research led me to Kelly (I Have a Bad Tummy).  All 3 women have a following and have different issues with IBD.  They have a strong voice for advocacy and made me want to reach out to others for support.  I then found a number of other strong women who advocate (Full Frontal Ostomy, The Great Bowel Movement, Blood Poop and Tears) and many other sites.  One thing I started to notice is that every one of these people were women.  Where are all the guys?

Within my search for support I have found some guys out there.  Brian Greenberg of Intense Intestines is one.  There is Jason from the Crohns Disease Support Network.  Both are big advocators within the community.  Another person who is a little low key but has a following is Patrick Leger aka SCDPat.  He is known for spreading the good word of the Specific Carb Diet.  I recently spoke with him on Twitter to get some insight on building a following.  He gave me some great advice.

One of the things I mentioned was that I wanted to form a “Band of Brothers”  Recently a bunch of the women I mentioned went to Chicago to advocate and they called themselves the Girls with Guts (or something like that).  I thought that was great.  They had always been separate..but banded together they can do a lot more. 

So here I am.  There aren’t many guys out there advocating and alone, we are just one voice.  So I am reaching out.  GUYS….if your reading this, help us out.  I would love to get a group together to advocate.  Patrick suggested “Crohnie Boys” but I don’t want to exclude our other IBD brothers.  If you want to help raise awareness please let me know.  Let’s get a group together.  Together we can be powerful.

IBD Advocacy.  It’s not just for women.  Let’s show them how us guys do it.  Let’s speak up and be heard.