Why I Write About My Health

Nov1

So here is my first of many posts for Wegohealth.com National Health Blog Post Month. The challenge for this is to blog about different things (they give us the topics) every day for a month. So here is my first post and the topic is Why I Write About My Health.

It all started in 2011. I was going through the worst flare up of my Crohn’s Disease in my life. I was going to the bathroom a good 30 times a day and really couldn’t live my life. I had been on numerous medicines throughout my life for my Crohn’s but nothing seemed to really help me. By the time January 2012 came around, depression had set in. I felt so alone with my disease and felt like I had no one to turn to. I knew very little about my disease and knew no one with it.

I was diagnosed in 1988 and didn’t have the internet back then. Whatever I learned about the disease came from outdated books and pamphlets. For most of my life I survived and got through my problems. My disease never really interfered with my life so I let it be. Now, that it was taking over my life, I didn’t know where to turn to.

Like most people with problems, I turned to the internet. In all honesty, I was so bad I thought I was going to need surgery and was looking up just what an ostomy bag was. I had never seen one before and knew nothing about it. I wanted to prepare myself mentally for what I thought was to come. My first searches took me to YouTube where I found some great videos from other people with Crohns. The people I found in these videos would go on to be my inspiration.

One thing these fellow Crohnies showed me was that no matter how bad things were, we could overcome the bad times. I soon realized that I had ignored the internet all these years. I started doing more searches and found so many websites. I then turned to one of the biggest social networks out there, Facebook. I started to see how people were coming together with their disease and helping each other. I thought back over my life and wished that I had something like this growing up. It was then that I decided I wanted to help out. I made up my mind that I wanted to help others out and let everyone out there with IBD know that they don’t have to be alone like I was.

My first attempt was to make some videos but this wasn’t for me. I felt very awkward talking to a camera. I also couldn’t interact with anyone doing this. So, I decided to write instead of talking and turned to Tumblr. This was fine for a little while but I soon learned that the site was more for sharing Memes. Finally I turned to WordPress and now I have this website. I have my own space to share my experiences and a place for others to feel comfortable to open up about their experiences.

Here it is now at the end of 2012. I have come a long way in such a short time. My main goal from the start has not changed though and that is why I write about my health……I don’t ever want anyone with IBD to feel alone.

UCLA Center for Inflammatory Bowel Diseases

Oct23

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 21^st 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.

One Really Cool Website

Oct12

Recently, I was going through my bookmarks and I saw one I made for a website which I hadn’t been to in a while. I clicked the link and when I got there, I saw there were a bunch of changes and all for the better. I saw there were new people to link up with and I began exploring a great site that I remember loving when I first joined.
The website I am talking about is http://www.Crohnology.com. Crohnology is a social health network for people with Crohn’s & Colitis to share and learn what treatments work, meet others near them, and track and share their health. It is a fairly new site and has been featured in numerous places including the Summer 2012 edition of Crohn’s Advocate.

So what is the site all about. Well, first off, everyone on the site has IBD. So whoever you talk to will be able to understand just what you are talking about. Second, you can look on a map and find people in your area. You can see who is taking the same meds as you, or have had the same surgery’s. You can ask questions to everyone regardless if you are following them. You can also write blogs on there and share them with everyone.

So what makes this different from other sites. Well, for one thing, the guy that started it, Sean Ahrens, has Crohn’s disease. He understands what we go through and molds his site to those needs. The other uniqueness is the map feature. On most sites you don’t know where anyone is from unless they tell you. From the moment you sign on, you can see all the people who live near you. There is also a feature where you can create a Meet Up so you can plan a get together.

Right now, it is still in its infancy so expect to see more great things from them. I can see them being a leading social website for people with IBD. No one there will judge you. They all have gone through the pain that we have at one point and many are there to help you through the rough time. I know because I have had some questions answered there myself.

I look forward to seeing what the next year brings for this great website. So, after you are finished reading my blog, head on over and join up. You won’t be disappointed. You can also find them on Twitter @Crohnology and on Facebook https://www.facebook.com/Crohnology

World Ostomy Day

Sep30

A fellow activist asked if I could post something about World Ostomy Day and I thought, why didn’t I think of this. I don’t have an ostomy but many of my online buddies do and my father in law did also.

So, on Oct 6, 2012, the world will be celebrating those people with ostomies. Go out and help spread the word and if you have one, show it off. Be loud and proud.

There are a bunch of things going on sponsored by the UOAA (United Ostomy Association of America, Inc) and can be found on their website here http://www.ostomy.org/wod_2012_promotions.shtml

If you can’t celebrate in the real world, you can do it in the virtual world. One group on Facebook is throwing a virtual picnic. It can be found here https://www.facebook.com/events/424515670918844/
To everyone with an appliance – you are strong and brave. Show off your beauty on Saturday and let the world know that you won’t go down fighting.

Feeling the IBD Love

Aug10

This week I was asked to do a guest post for a great website..which leads into this weeks “Follow Friday”. Usually the advice I give can be used by everyone but I normally have adults in mind. Well, this week I am here to talk to the youth.

So, this week I want to single out a great website that is run by The Crohn’s & Colitis Foundation of Canada or CCFC. It is a site called The Gutsy Generation: (http://www.thegutsygeneration.ca/site/c.buLTK7OQLpK8E/b.6247843/k.C798/Connect.htm). The post I did can be found on their blog site which is http://thegutsygeneration.blogspot.com/.

Now I am not talking about them because I did a post for them. I am talking about them because they target a huge audience….the kids. Looking over their website, I was reminded of my own youth. I was 15 when I was diagnosed with IBD and essentially that is when my childhood ended. I remember the feelings and the pain like it was yesterday…yet it was 24 years ago. When I was first asked to write the post, I didn’t know what to write. I wanted to connect with the kids today that suffer, but wasn’t sure what to say. When all my memories started to flood me I said to myself….”That is what I am going to write”. I said from the beginning that I wanted to help people know they aren’t alone with their IBD and that was what I was going to do. By showing the youth out there that even us adults have gone through the pain and hurt…and survived it….I can help them to know that they also will survive.

It has been 2 days since I wrote the post and I still keep thinking about those first days. So much has changed thanks to the Crohn’s. I was a shy kid growing up. I didn’t have the best self-esteem and I was very unsure of myself. I was an average student and never knew my purpose in life. College helped me a lot to discover who I am, but my Crohn’s helped me become who I am. I had to get courage to overcome it. It helped me to speak up and speak my mind. I directed me where to go in my life because as we all know, a lot of what we do, we do tailored around the disease. When I got sick last year and then started doing research on IBD, again it moved me into a new direction. Here I am now, toting my wisdom and trying to help others.

I grew up alone with the disease. Back in the 80’s no one knew what IBD was. Worst of all, there weren’t many treatments for it. There was no internet so it was very hard to find people with the disease. All that I learned about my disease I learned through pamphlets from The Crohn’s and Colitis Foundation of America. They helped…but never really taught me about my disease. I grew up ignorant of what I have.

Now, things are different and websites like The Gutsy Generation exist. No one has to go at their disease alone anymore. All they have to do is reach out. The last paragraph of my post for TGG sums up my feelings and I will end this post with that paragraph:

“As I look back into the mirror, I can still see that 15-year-old. The lines are growing. The hair is changing. But I can see him in the eyes. I see the twinkle. I have made it 24 years with the disease. No matter what happens…I can live life. The disease hasn’t beaten me…and it never will. And that is the best advice I can give anyone….Never let it beat you…you are too strong.”

Inspiratation – Where do you find it?

Aug6

Recently, I watched a video from a fellow IBDer and she was talking about seeing other people do amazing things like running races and she was at a point in her life where she couldn’t do those things because of her fight with IBD. I wrote her a letter to help cheer her up and as I was writing it, I realized how much of an inspiration she really had been to me. She was one of the first people I watched on YouTube when I started flaring last year. She showed me that even though we have a chronic illness and it can affect us greatly at times….we should still live our lives.

When I wrote her, I also came to another realization. I have never had a mentor in my life. Whenever I had started a new job, so one ever took me under their wing. I never really had anyone I could say that I truly looked up to. But, she really changed my life and I always find myself looking at what she is doing and try to be a little like her or more specifically, try to be like her in helping people with IBD. To this end, she has kind of been like a mentor to me even though she didn’t know it.

Now, she isn’t the only one that has inspired me. There are so many people out there and if you look back over my blog, you will see who they are. Some of them I have written about. Others, I have included in my “Follow Friday’s”. There are so many great people out there advocating and giving me inspiration to get on with my life.

Recently, I have been starting to flare again and I felt some depression setting in. As usual, I started to withdraw within myself like I used to. But then I saw that video and wrote my online friend. I wrote her to cheer her up but it also was very therapeutic to me. I was able to get some things off my chest. Realizing how much of an inspiration she was in the past, helped to inspire me again. So, I am back fighting again.

Next week is a big part of the battle for me. I see my GI and I will be asking him to switch my meds from Humira to LDN. Since this isn’t a typical treatment for Crohn’s just yet, it will be a battle, but I am ready. If I let the depression sink in, I wouldn’t be able to have the conversation with my GI and argue it effectively. But thanks to my inspiration..I am going in guns blazing.

So, now I ask…..who are your inspiration. I would really love to hear back from you on who inspires you. Whether it is just to continue your fight with IBD, or someone who pushes you to blog, or helps you to get out and about with your life. Is your inspiration a person, a group of people, or a website?

I want to leave you with a quote I found online about inspiration:

“Inspiration is like picking up one of those blinky things in a video game that makes you invincible for a while. You can do anything, go anywhere, and you don’t have to worry about it.

Those blinky things exist in real life too. It may be a picture, or some words, or a sound, or an idea, or a mistake, or a moment. Whatever it is, pick it up and run with it. Run with it like you stole it.

You can’t bottle up inspiration. You can’t put it in a ziplock, toss it in the freezer, and fish it out later. It’s instantly perishable if you don’t eat it while it’s fresh.

Inspiration is a magical thing, a productivity multiplier, a motivator. But it won’t wait for you. Inspiration is a now thing. If it grabs you, grab it right back and put it to work.”

And just incase you are reading this and trying to figure out who my inspiration is…I wasn’t going to say because I don’t like to mention people’s names on here …but it is Sara from Inflamed and Untamed.

Iota Beta Delta – This one is for the women

Jul23

I decided to post this for 2 amazing health activists.

This one if for all the ladies out there with IBD or any chronic illness. Are you in college right now but don’t feel like you can join a sorority because your illness won’t allow you the time. Or did you not have the chance to do it while you were in college but now your out and you want that feeling of sisterhood. Maybe you’re at the point where you can’t even go to school right now because of your illness.

Well, Maggie and Kelly have started a sorority just for you. It is called Iota Beta Delta (IBD). This is not an actual accredited sorority but they want to give that feeling to the women that couldn’t join one for whatever reason.

Check out their site at http://iotabetadelta.webs.com.

My First Interview

Jul9

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

Jul6

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

Jun29

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.