Day 6 – #NHBPM – News Style Post

Nov6

Since the explosion of the world wide web, many people have turned to going online to look for help for problems. For many people with IBD, going to a doctor doesn’t always help. They treat the physical problems, sometimes, and very rarely treat the mental problems. Because of the lack of a bedside manner, patients with IBD look for treatment online in the form of forums, social medias and medical based sites.

One new site designed to help those with many illnesses, including IBD is http://www.meddik.com. This is a new site which just came on the scene. It was developed by 2 medical students, one of which has a relative with IBD. The site is a user based site but also carries links to medical articles. The design behind the site is that you can research not just the inner workings of your disease but get first hand help from people who also suffer from the same.

Another site, with a heavier user base is http://www.crohnology.com. This site is made so that you can connect with people who not only have your disease but live near you. You can also ask questions to everyone on the site. You can look up people taking the same meds as you or have the same side effects or even symptoms.

If you are looking for an upbeat site with a dose of comedy, turn to http://www.ihaveuc.com. Adam has UC and treats his disease with comedy. He believes that laughter heals. He also has on his site a place to post and answer questions from other IBDers. Adam also post informative information about the disease and the treatments used.

If you’re looking for a feminine side to IBD, there is no shortage of that either. Sara at http://www.inflamed-and-untamed.com is probably the most recognizable face for IBD. She talks about a lot of personal dealings with Crohn’s and having a J-Pouch. She has become an inspiration to so many people and when she is ill, she in overwhelmed with well wishers.

Another person who is big on helping others is Kelly. She has a page on Facebook called I-Have-A-Bad-Tummy-With-An-Optimistic-Mind-Chronic-Illness-Support. Kelly is the face of being brave and strong with IBD as she has been very sick this year but still manages to come online to help others. She is yet another big inspiration to many.

If you have an ostomy and love videos then check out Maggie at www,youtube.com/LetsTalkIBD. She shows everyone that just because you don’t have part or all of your intestines doesn’t mean you can’t live life. She shows that you can do whatever you want to do, whether it is swimming in a bikini or going to college. Your life doesn’t stop just because you wear a bag on your side. In fact she shows just how life is just starting after surgery.

Are you athletic? Do you have IBD? Well, your life isn’t over. Brian at http://www.intenseintestines and Heidi from http://www.ostomyoutdoors.com both show that just because you have a disease doesn’t mean you can’t enjoy exercise. Whether it is hiking, running or biking..you can do it all.

With so much help out there online doctors need to step up their game. They can’t give the advice that any of these sites can offer. Most doctors don’t have enough time to spend with their patients to find out what is going on in their minds. It is no wonder why everyone turns to the internet now.

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.

Follow Friday for Oct 19th

Oct19

This has been a busy week for me. Three blogs in one week..wow. I was going to hold off on this one, but I felt like I wanted to put down what was fresh in my mind.

Last night, I had the pleasure of being in a focus group for a brand new website. It is still in its infacy and still trying to improve itself. But from what I see of it, it will go far. The website I had the honor to advise on is www.meddik.com. If you visit this right now, please please please remember that it is still being tested out so if you have problems let them know and give them some time to improve.

The site right now is based on people with Crohn’s, Colitis, and Celiac disease. But, anyone with any medical condition can go on it. There are posts from people with these diseases looking for help and advice. You can ask questions or answer others. One feature of theirs right now is that everyone for the most part is anonymous. That was one of the features we discused in the group and this might change.

One good article about this site was written here http://mashable.com/2012/05/29/meddik-video/. Lauren Hockenson talked with the co-founder Tim Soo and I thought this article best explains the site better than I could. I got to meet Tim last night and he is a really outgoing overall nice guy.

Now I know there are a lot of sites out there to get info and many more social sites. What will make this site different and better is that it will kind of work like Google. It will find results based on your preferences. You can filter what your needs are and it will find results that are like you and others that are realted in a sense. Do if you put a filter to look for Crohn’s Disease, it will pull and show you posts for CD. It will also find ones for IBD, Colitis, etc but …it will let you know how many finds are for your direct filter and how many are sort of related.

So, go check them out and let them know how you like it. If you really have strong feelings on how to help them, you can email me and I will forward it to them. Sometimes emails are better than a message on a website.

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

Recipe for Success

Aug14

Two weeks ago at my Weight Watchers meeting we were talking about recipes. We were encouraged to bring in a recipe to swap with everyone. When it was my leaders turn, she gave us a recipe…but not for food. I looked it over and thought, this isn’t just relevent to food…this is good for life. So, I decided to share the wisdom of my leader and give you…The Recipe for Success

Ingredients:

1 Cup of Vision 1 Cup Commitment 1 Cup Discipline 1 Cup Self-Control 1 Cup Sacrifice 1 Cup Conviction 1 Cup Imagination

Directions:

In a large part of your life, add 1 cup of vision. Make up your mind which direction to go and strive for it everyday. Add 1 cup commitment. Commit yourself every day to reaching your goal. Add 1 cup discipline. Discipline yourself to do what you must to keep the committment and hold on to the vision. Add 1 cup of self-control. No matter what temptation comes, remember you have a choice. Add 1 cup of sacrifice. Be willing to give up bad habits for good habits. Add 1 cup conviction.

Have the courage to stand your ground knowing that you are mixing the right ingredients together in your life. Add 1 cup of imagination. Imagine what all this cooking will achieve in the end. Bring all of these things to a boil. Now pour it all into the rest of your life and you have the recipe for success. Keep it always on simmer.

As I read this in the meeting, I was no longer thinking about food. I know she gave this to us to help us stay on course and keep up with our weight loss. But I saw a bigger picture. Living with a chronic illness will do that to you. I didn’t just see food…I saw a recipe to beat an illness. I saw a recipe for me to get through life.

I know at times life with Crohn’s or Colitis can be hard. Sometimes we want to just throw in the towel and say I quit. But that is when we need this recipe. Sometimes, we need to alter a recipe and add a little more spice to it. There are days we might need 2 cups of self-control. Maybe we need a gallon of vision because all we see is our blanket covering our eyes. Whatever the day…keep this recipe close at hand. Make it your first meal. Make it your last. Make a big batch of it on the weekend for the whole week. Whatever you do…make sure to make it at least once a week.

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.

Traveling with IBD

Jul19

I just came back from vacation and for the first time in my life, I was really scared about traveling with Crohn’s Disease. In the past I never worried about it. On the days where I would actually be traveling, I would take Imodium and that would be that. I never worried about food choices either because in the past food wasn’t an issue with my Crohn’s.

This year was different. For the first time in my life, I was staying in a Caribbean country. I went to the Dominican Republic for 7 days. Now the trip there didn’t worry me. I have flown many times and was just excited not nervous so my stomach behaved. My biggest worries would be the food this time around as my breakfast choice was going to be hard. As a reminder to everyone, I have gone Gluten Free and eggs upset my CD. Originally I bought some Chex cereal and almond milk to bring with me, but there was no room in the suitcase for them so I had to leave them behind.

When I got to the resort it was so beautiful and relaxing I thought, this would be great. By dinner time, my worries kicked in. Now at the resort I stayed in, there was a buffet for breakfast and lunch and for dinner you could do the buffet or you had a choice of 2 restaurants. There were a total of 4 restaurants but only 2 were open each day. As I looked at the menu’s of the restaurant I saw it was going to be very difficult to eat a GF diet. Just about everything had gluten in it. From every menu, there was maybe one item that was just naturally GF but of course I would have to worry about cross contamination. I could deal with that though. So for the first night, I survived, but the food didn’t taste good.

Come morning, it was buffet time. I knew this would be a challenge so I brought my digestive enzymes just in case I had to eat eggs. Turns out food would be the least of my worries. The dinning area was opened all around so birds were flying in constantly. They would walk all over the tables and fly to the food. They would even peck and eat at the food on the buffet. The workers there didn’t seem to care and this started to turn my stomach. I quickly learned that food sanitation and safety meant nothing here. The food workers wore no gloves, used utensils to touch raw and cooked meat together, and the food never seemed hot enough and sometimes not cooked enough.

So needless to say, keeping myself healthy was going to be a real challenge. Just looking at the dinning building would turn my stomach. I lost my appetite pretty quickly that first morning and for a week I hardly ate anything. The restaurants didn’t have bird issues but they still had the other issues. I couldn’t wait to leave and get home to eat a real meal.

Over all, my CD never acted up (surprisingly) and I survived DR. It was a very relaxing trip aside from the food and I didn’t want to leave. But this trip opened my eyes to what many other people with IBD must go through. Someone with active CD or UC might have gotten really sick from those conditions. It also made me realize that for any future vacations, I am really going to have to plan and research places well. I will never go clueless on vacation again.

So here are some advice to others with IBD for traveling:

1) Make sure you have anti-D meds with you and enough of your regular meds.

2) If you are going to a resort, see if they can send you menus of their restaurants. Also ask them if they can accommodate any special diet you might have.

3) Bring some IBD friendly foods with you.

4) If your staying at a hotel, look online for some IBD diet friendly restaurants. Most restaurants these days post their menus online.

5) Check to see if they have a doctor where you are staying. If you’re in a tropical country, the nearest hospital can be hours away.

6) Make sure you have up to date medical records with you and if your on meds, keep a list of them in your wallet just in case of an emergency.

7) Never be afraid to ask. If you don’t see something, ask if they carry it. If your GF and you don’t see any GF foods, they might have some and just don’t put it out.

8) Tip the staff well. They will remember you and help you out more than someone who isn’t as appreciative.

Well, that is all I can think of for now. I hope these tips can help you out the next time you travel. I know I will be planning my next trip out very meticulously and won’t make the mistakes I made this year.

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.