The Health Activist’s Writers Month Challenge – Day 23 Technology


Write about how your life would change if there was no social media.

I kind of touched on this is some of the other posts that I have written.  What would I do, or better yet have done, if there were no social media?

No social media.  That means no Facebook, no Twitter, no Instagram, no Pinterest…etc.  That would be almost no interaction with other people with my disease.  Well, for most of my diseased life, I didn’t have any social media.  I grew up and was diagnosed in the 80′s.  There was no internet.  Computers were still in their infancy.  And  I think by now you know how I dealt with my disease.  I ignored it.  I didn’t know anyone else with IBD.  I didn’t talk to anyone about my disease.   I just lived day to day ignorant of what my disease was all about.

In all honesty, I haven’t been on social networks for that long.   I have only been on Facebook for maybe 5 years…Twitter for a little less.  Since I have had my disease for about 25 years, social media has played a small part overall in my life.  However, it has made a major impact.  It has helped me come to terms with what I have.  I have found an outlet to help speak my mind and deal with issues.

Social media has really helped me in one way.  It helped me get the courage to start this blog.  It was only after talking to some people that I decided to do this.  I would never have met them without social media.  It all started with YouTube.  That is where I saw videos of inspiration.   I then went to Facebook to talk to these inspirational people.   Without those two sites, I would still be alone with my disease.

Social media is also allowing me to help others.  One of my main goals now is to help others so they don’t feel alone with their disease….like I did.  Without social media, I probably wouldn’t be successful at it.  I could still write a blog but not many people would know about it or read it.

Our disease is often overlooked.  It doesn’t get the best research.  It doesn’t have tons of money thrown at it.  Many people don’t know what IBD is.  Social media is helping to change all that.  Us IBD Warriors are now coming together and spreading the word.  Thanks to social media, we have a voice now and maybe one day a cure.

The Health Activist’s Writers Month Challenge – Day 14 Spread the Love


Thank a few of your fellow Health Activists for what they have done. Call them out by name or twitter handle. Share your love.

This is more of a repeat of day 4.  I have talked about resources then and linked up to a lot of great sites.  I have talked previously about some of the people who are inspirational to me.  I have mentioned many people over the past year.  But in the spirit of this challenge, I will do it again.  Some of these names may seem very familiar.  Some might be new to you.  What I do want to say though is not everyone I mention will have IBD.  Most will, but there have been some inspiring people who have other illnesses.

Sara Ringer – http://www.inflamed-and-untamed.com/ -  @Sara_Ringer

Kelly Fricke – youtube.com/user/Kellbear2…   -  @SickGirlDiary

 Amanda Kasper – http://stopthinkingstartwriting.blogspot.com -    @Akasper513

Adam Scheuer – http://www.ihaveuc.com/ -   @IhaveUC

Marisa Troy – http://keepingthingsinsideisbadformyhealth.wordpress.com/ -   @MarisaTroy

Brian Greenberg – http://www.intenseintestines.org/  -  @BrianIIF

Sean Ahrens – http://crohnology.com/ - @seanahrens

Wade S – http://wadeszworld.tumblr.com  -   @WadeszWorld

Sarah Choueiry – thecrohnsjourneyfoundation.org  -  @SarahChoueiry

Michael A Weiss – http://www.hospitalpatient.com  - @hospitalpatient

Jackie Z – http://www.bloodpooptears.com - @JackieZimm

Ryan Stevens – http://www.crohnsguy.com/ - @ryan_crohnsguy

Alyssa Zeldenrust – loveformutantguts.wordpress.com  - @UnstuffedAlyssa

Charis Kirk – http://fullfrontalostomy.com/ - @OstomyLife

Julie – http://www.semicolongirl.com/ - @SemiColonGirl

Sharon Saeed - https://www.facebook.com/groups/ibdjourneys/  and also http://www.ibdjourneys.com/

Ok, so I know I will probably piss some people off, but this list can go on forever.  If I didn’t add you, I am sorry.  It is no reflection on you.  In fact, I probably just couldn’t think of everyone, so if you would like me to add you, send me an email to aguywithcrohns@gmail.com with your info and I will review it.  If I like it, and I most likely will, I can always add you onto the list.

The Health Activist’s Writers Month Challenge – Day 11 Favorites


Write about your favorite social network. Do you love Twitter? Facebook? Pinterest? Why?

I can remember being a kid growing up in the 1980′s.  We would spend the day outside playing with our friends and having fun.  After school we would come home and actually do homework.  If we behaved we got to watch about an hour or two of television before going to bed.  Things were simple and fun.

Now, I can’t imagine not having a computer and on top of that, not having social media.  After I boot up my computer and checking emails, the first sites I go to are social media.  If I have a question or problem, I no longer Google them, but go to a group online and ask away.

But what is my favorite?  Honestly I don’t know.  I spend most of my time when I am home on Facebook.  I have met many people on there and belong to a number of groups…some IBD related, some not.  I was thinking of mentioning some of the groups but then I realized that they are closed groups so the people running them might not want me to mention them.  So I won’t.  But if you have IBD, just do a search and you will find a lot of groups that deal with IBD.  I have met so many great people from these groups and they really have helped me to deal with my disease.  It is the one thing that was always missing from my life…meeting people with my disease.

Another great thing about Facebook is that it is Real Time.  You can chat with people instantly.  Not only have I met some great people, but I have talked with them one to one and gotten to know them better.  I have gotten to speak to some of my IBD idols and not only have they helped me out but I have been able to help them out also.  We can be there to be a pick me up for each other when needed. 

Besides Facebook, I use Twitter a lot.  Again, I have been lucky to meet a lot of people with IBD with this site.  Again, like Facebook, you can talk to someone in real-time.  The only drawback is that you are limited to the amount you can say.  A tweet has to be no more than 140 characters.  That may sound like a lot of letters but believe me, it isn’t.  There can also be a lag at times with Twitter so it isn’t always instant.

The last type of social media site I like, but don’t use as often is YouTube.  It was the site that helped get me started on my IBD journey.  It is where I got inspiration when I was sick.  It is where I learned I wasn’t alone.  It is where I met Sara, Maggie, Kelly, and many other inspirational people.  I myself tried using YouTube to start my blogging journey.  I quickly learned that I was a camera person and I can do better by typing out my thoughts.

Now, there are many more sites out there and some of you might like them.  That is fine.  I am not against sites like Pinterest or Instagram..I just don’t use them much for IBD related things.  Many people do use them so my advice is to go out and explore.  Don’t just take what I have to say as an end all.  Search the internet.  Explore around and find sites that are a good fit for you.  There are so many different websites out there.  Go out there and have some fun.  Just don’t forget to come home for dinner :)

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/.  

Day 25 #NHBPM – How have your goals as a patient / advocate / person evolved?


Well, we are in the home stretch on the blogs and this is one that will really make me think.  In the beginning of the month I didn’t give much thought to my post, now, I am spending probably too much time on them :)  This one will be no different.
When I first started down the IBD road, I didn’t give it much thought.  I went through my years of being sick and I never had a goal in mind.  I just wanted to feel better and live my life.  I didn’t even know too much about the disease.  Growing up in the 1980′s the only resource around was the local library and since there wasn’t much written about Crohn’s there wasn’t much to read.

Over time, decades would pass.  During the 1990′s,  I started feeling a lot better to the point that I went off all medicines.  Since I didn’t know much about the disease, I didn’t know that this was a bad idea, and I didn’t see any point in learning more about my disease.  I went through life ignorant of what I had.

With the coming of a new century, my life changed.  In the 2000′s I started seeing a new GI who wanted me back on meds.  This started my downward spiral with medicine.  For some reason, I still never really felt the need to learn more about my disease or treatments.  Time would go on and living 20 years would come with me still ignorant about my disease.  I would go to some symposiums by CCFA and would read things here in there but by now I chose to just play dumb.  Why not?  I have been getting by without having to do much research.

By 2011, my life with the disease would change, and so would my goals.  My father in law who suffered with UC in his life and had a ostomy bag passed away.  This hit me because I looked up to him in my battle with IBD.  He was an inspiration in how he lived his life.  Second, I went into my biggest flare ever.  I started going through depression and felt like my life was going downhill real fast.

I started to feel useless in my battle.  After 23 years, I felt it was time.  It was time to finally find out just what I am living with.  I went online and realized just how much information was out there.  My life was about to change.  I was no longer going to be a patient, but an advocate.  I won’t go into the big details as I have talked about them a number of times already in other posts.   You know who I found online to be inspired by, who I learned from and just who could really help me.

After all is said and done, this blog now serves as my sounding board to help others.  I have gotten some really good feedback to show that what I stated out to do is working.  My main goal now is not educating myself but educating others.  I want to let other IBDers know just what options they have with their treatments, how to find a good GI and mainly just let them know that they aren’t alone with their disease.

My Facebook friends list has more IBDers than real friends.  Same for my Twitter account.  I talk to more people with UC and CD then I have ever.  Sometimes I learn some new information from them.  Sometimes I help them.  As 2012 draws to a close I look at where I have come from and how far I have traveled this year.  I went from feeling depressed, lonely and useless to being strong, confident and helping others.  I couldn’t have done it without the support of my fellow IBDers.

As for the future, I don’t know what it entails.  I want to become more active with CCFA.  I will probably work Camp Oasis this summer.  Anything else…I don’t know.  I guess we will have to wait and see.

Day 15 #NHBPM – Why Healthcare Companies (or healthcare professionals) Should Use Social Media


This is an interesting topic because you can look at it from a number of different ways.  Do you want to be friends with your doctor on Facebook, or do you just want him/her to see what the community thinks?  To what extent should they be using social media for?

I currently go to Mount Sinai in NYC to see my GI doctor.  In the past couple of years they have started using a system called MyChart.  It is a system where you can have access to your charts and labs but also, and this is the part I love, you can send a message to your doctor and have him/her respond back.  I have used this a number of times and it is definitely faster than email.  Yes, it isn’t social media, but it is a first step. 

 

So what is social media.  Those words get thrown around a lot, but do you know what it is?  Wikipedia describes it as the following:

Social media employ web- and mobile-based technologies to support interactive dialogue and “introduce substantial and pervasive changes to communication between organizations, communities, and individuals.” Social media are social software which mediate human communication. When the technologies are in place, social media is ubiquitously accessible, and enabled by scalable communication techniques. In the year 2012, social media became one of the most powerful sources for news updates through platforms such as Twitter and Facebook.”

Now, should your doctor be accessable on sites like Twitter and Facebook?  Remember your doctor is spending a lot of time treating patients in their practice and then probably spend time in the hospital seeing patients or doing procedures.  Do you want them to spend less time with patients so they can tweet “Going to stick a scope up a bum..Wow..What a view”?  Personally, I don’t mind that I can’t chat with my doctors in chat rooms.  It means that they are working and I like that.  We shouldn’t be pals or friends with them.  The relationship should be kept professional.

 

Now, what about the practice themselves like a hospital or lab or even your doc’s private practice.  Now a days, businesses have Twitter and Facebook accounts to help drive business.    I am not against this.   It would be nice to be able to get information from these sites instead of trying to call.  I remember a couple of years back when I was getting Remicade infusions.  There was a big storm the night before and I didn’t know if anyone would be there to administer the medicine.  It turns out there wasn’t.  I had to rely on the phone though to get this info and getting through was not easy.  It would have been nice to just log on to Twitter and see a tweet..”Big storm, nurses snowed in, no infusions today..please reschedule”  Not only would this save time in contacting everyone but I would know not to bother trying to get in.

I would love to hear everyone’s thoughts on this topic.  I am sure there will be a big debate on this.  Please leave a comment and let’s get the discussion rolling.

UCLA Center for Inflammatory Bowel Diseases


Recently I was contacted by a member of the UCLA Center for Inflammatory Bowel Diseases on Twitter.  They wanted to do a small guest post.   I felt honored to be approached by such a prestigious center.  Of course I said yes.  For anyone that doesn’t know what UCLA is, it is a very big university in the USA.  The letters stand for University of California – Los Angeles.  The website to the center is here http://www.uclaibd.com. You might have seen articles about the work they did.  Recently they have created some programs to help in communication between doctors and patients, which is what they briefly wanted to write about.  So, without further adieu, here is their guest post.

 

“In its summer 2012 issue, the Crohn’s Advocate did a cover story on how the digital age is transforming patients’ self-management of their disease. “The 21st Century Patient: Managing Crohn’s in a Digital World,” talks about online health management platforms that provide patients with direct access to their health information so that they can take action on it. If you’re as excited about the idea of being actively involved in the management of your health as we are then we’d like to tell you how we think it can work.

Our UCLA Center for Inflammatory Bowel Diseases and Rochester General Health System were the two online health management platforms featured in the Crohn’s Advocate article. Both of our platforms enable your medical teams to capture, store and share information about your health with you electronically and in real-time. Using such systems, you and your medical team are able to track how your health is progressing and adjust treatment and care accordingly with real data to support those decisions. We see this as a big shift in patients’ participation in their own care and where healthcare is heading in the future.

Our Homecare program at the UCLA Center for Inflammatory Diseases provides patients with an online patient care portal that they can access via the iPad or their home computer. One of our goals in the program is to make it as easy as possible for patients to access the portal anywhere and at any time for their health information and to communicate with their care team via email or online chat. Firm believers that our patients are co-owner of the care delivery process, we have developed a program that puts the tools in patients’ hands to manage their own health. Using the online portal, our program participants can access their medication information, clinic visits and lab schedules, answer questionnaires about various aspects of their health, and review resources about Crohn’s disease and ulcerative colitis.  The information provided by our program participants along with test results are continually monitored by our team of inflammatory bowel diseases (IBD) specialists to ensure that treatments are going according to plan and any health concerns are addressed in a timely manner in between office visits so they do not become bigger issues. Our Homecare program also provide support tools for participants to address aspects of their lives that might be affected by their illness such as mental health, work or school and social life.

 We’re excited by a future in which patients can work with their doctors and nurses to actively management their illness and achieve better health. We hope to see systems like ours and Rochester General Health Systems be made available to every patient with Crohn’s disease and ulcerative colitis.”

 

Now normally, I wouldn’t post anything else with a guest post..but I wanted to touch a little on this.  I have actually started using a program similar to what they are talking about, which is also featured in the Crohn’s Advocate article.  I think the direction that the great minds at UCLA Center for IBD are taking  are wonderful and is the wave of the future.  In my advice, if your doctor isn’t using any form of digital platforms then it doesn’t hurt to ask them about it.  If they are part of a big university or hospital then you can ask the head of the dept or even the patient care advocate.  The more we pressure the medical community to be on our side, the more they will help us.

I want to thank Lam Nguyen for the post from UCLA Center for IBD.  Please take the time to look over their site.  You can also follow the center on Twitter at @UCLAibd.  There are also links on their homepage to their facebook page, YouTube page, and other sites.  Feel free to drop them a line and let them know how good a job they are doing for us.

My First Interview


Recently I was contacted by the good people over at WEGO Health.  They wanted to do a little interview with me to help get my message out.  In exchange, I would help get their message out.

First off, here is the interview.. http://blog.wegohealth.com/2012/07/09/featuring-health-activists-jeffrey-of-a-guy-with-crohns/

For anyone that doesn’t know who they are, WEGO Health (www.wegohealth.com) is a site dedicated to bringing awareness to just about any health issue.  They do articles on different topics, highlight an illness for a month, hold Twitter chats and help bring people with same the same illnesses together.

Now, for anyone that knows me, knows I won’t advocate for something I don’t believe in.  I am true to my word and beliefs.  I wouldn’t spread WEGO Health’s words if I didn’t believe in them.  So, check them out and maybe you can find some answers to some problems you might be having.

I have to say, I was so happy to be asked to do this interview.  One, I love getting the guy’s view of IBD out there and this is a big step in that direction.  Second, it is showing me that people are seeing my posts and like what I have to say.   A big reason I liked the interview, is I got to publicly thank some of the people who inspired me to get on with my life and to speak up.  Thank you Sara Ringer, Kelly Frick, Jackie Zimmerman, Charis Kirk and Maggie Baldwin for setting me down this road.

Of course there are so many others that have been an inspiration to me and that is why I do the Follow Friday thingy here.  It is my way of saying thank you.  I can’t go and list everyone because the list would just keep going.  Every week I seem to meet inspiration people and if you read my blog, you would see that.

Now, I don’t do what I am doing for fame.  I hate being in the spotlight.  I do it so anyone with IBD would know that they aren’t alone.  I grew up all alone with this unknown disease.  In the 80′s and 90′s before there was the internet, it was hard to now only learn about Crohn’s Disease but to meet people with it.  Now, I can meet someone new everyday.  And hopefully, no one has to feel like I did.  That is why I do what I do.  And if you ever feel alone, just look me up and say Hi.

My biggest thank you I have saved for last.  It is to everyone that reads my blogs and Tweets with me and is there to keep me moving.  It is to all the people who are there to pick me up when I’m down.  It’s to everyone that leaves me comments saying thank you.  Mainly, it is to YOU, the reader.  Thank You.

The Men of IBD


Today is Friday. So that means it is my time for suggestions on who to follow and read. This week, I want to highlight the men of IBD. There are so many good men out there advocating that I couldn’t even begin to name them all. I will tell you of some of them and if you know of anymore or want them highlighted in the future, drop me a line at aguywithcrohns@gmail.com and I will post them in a future post. So without further delay here is my list of The Men of IBD.

http://www.ihaveuc.com/ – Meet Adam. He has written books. He has YouTube videos. He has a website dedicated to helping people with UC. He also has Ulcerative Colitis.

http://www.crohnsdiseasesn.com/ – This site is run by a number of moderators but was started by Jason Leitman. He also has a group by the same name on Facebook. Check it out.

http://www.intenseintestines.com/ – This site was started by Brian Phillip Greenberg. He has IBD and doesn’t let it slow him down. He runs, hikes, climbs..he does it all. He is an inspiration for all of us. He shows us that even though we have a chronic disease, we don’t have to let it run our lives.

http://crohnology.com/ – This site was started by Sean Ahrens. This is a great site to help meet people with IBD in your area.

http://www.crohnsdiseasesupport.co.uk/# – This site is run by Peter Buckers. This website shows that IBD is not just a local disease but worldwide. He also runs a great Facebook page called Bowel Disease One Global Family.

http://storify.com/SCDPat – Pat Leger. You see him all over. He is on Facebook and Twitter. If you see him, say hi..he is such a great guy. He is also known for being very successful on the SCD diet.

http://beingapatient.blogspot.com/ – Michael Seres aka the guy with the intestinal transplant. Read what it was like to go through intestinal failure and a transplant while also fighting IBD.

http://www.foulbowel.com/ – John Bradley. If you haven’t read his book yet, read it. It is about his experience with IBD.

http://ucvlog.com/ – I was on the fence to include this one today, but I will. It is a great site, but I was on the fence because 2 people run it, one of which is a woman. But the other is a great guy – Dennis Frohlich. Nadia – You are wonderful too :) Both have IBD and make some great video’s.

Well, that is my list for today. Again, if I missed anyone let me know. If you have a website, send me a link to check out. Have a great weekend and hopefully it is a pain-free one.

Follow Fridays is Back


I realized this morning that since I changed domains from Tumblr to WordPress, I hadn’t done any of my follows on Fridays. I have been preoccupied with my blogs and haven’t focused much on them..so I apologise.

So, to restart the follows, I am going to highlight a website that I have been looking at a lot more lately. This one is http://www.wegohealth.com and it doesn’t just focus on IBD. The great thing about this site is that they cover almost any health condition out there. It is an interactive site, meaning there are groups where you can write and connect with other people. What is great is since a lot of people with IBD suffer from other ailments also, you can connect and get information from all your ailments on this one site. This site also has articles to read and they seem to highlight and talk about different diseases every month. If you are on Twitter, they can be found at @wegohealth and every Tuesday they run an interactive chat.

Another site that I think is really good is http://stopthinkingstartwriting.blogspot.com/ This one is written by a woman named Amanda. She, like so many others with a disease, is having a rough time. She has been undiagnosed now for almost 4 years but is a tough trooper and is still fighting. A lot of her symptoms point to IBD but as many of us know, sometimes it is just hard to pinpoint the area that is affected and causing the problems. Her blog is very well written and one day she will be a famous writer. For all you caring people out there, don’t be scared to reach out to Amanda if you think you can help or just want to lend some support. Too much support never hurt anyone.

Well, that is my picks for this week. Enjoy your weekend and stay safe this July 4th.