Tag Archives: inflammatory bowel disease

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.

Dark Side – Part 2


Yesterday I wrote about analyzing Kelly Clarkson’s song Dark Side and how it relates to my disease.  I wanted to really open up, but then I closed up and didn’t really put down in words what I wanted to say.  Yes, I felt a connection to the song but I didn’t really explain to well how I have that connection.  I never really said what I felt my dark side was.

This was going through my head and then last night I read a post in a Facebook group that I belong to.  I really made me think of one of my dark sides to the disease.  I got to thinking and actually shared my story that I have kept inside for a number of years now…and it felt good to get it out. 

The post was about how this person had to stop on the side of the road to “relieve herself”.  She felt ashamed to have to do this and I could see the pain in her words.  Now anyone with Crohn’s disease knows this is normal and probably most of us has at one time had real bowel emergencies and have done things they wouldn’t normally do.  I reassured the poster that what she did was normal for us and that she is just one of us.   Other people spoke up and she then commented that she felt better thanks to her family (meaning everyone posting).   Her pain made me think of my dark side story and I shared it with her.   I wasn’t worried about it getting out as it is a closed group and everyone keeps the stories there.  Now you are thinking I just told her story..but I am keeping all names out of this so as not to embarrass anyone. 

So, now I bet you are wondering…what was my story.  I thought about it long and hard and I didnt’ know if I was ready to let this one out into the general public.   But I guess I should take my own advice…we have all been there.  For any Crohnie reading this…I am sure you know just how I felt at the time.  For anyone without IBD reading this…just know, we all go through this problem.

First a little back story to mine.  What brought this on was someone saying they had to go to the bathroom on the side of the road because they had to go and there were no bathrooms around.  For many people this is easy to imagine.  I have been on interstates where there are nothing but trees lining the road for miles.  For me though, I grew up in NYC.  Every highway has numerous exits with plenty of bathrooms to go to.  The only time I would think about squatting on the side of the road is when there is an accident and the traffic isn’t moving.  But my time did come and I wasn’t on a highway or interstate.   I was walking.  It was early morning and nothing was open.  I was heading to my bus and then the “Urge” came on.  I knew I didn’t have time to turn around and go home.  If I did I would be really late to work.  The only building close by with a bathroom was the library..and it was closed.  I knew I was going to have an “accident”.  And then my mind raced.   Off to my right was a wooded area with a lot of trees.  I knew that if I went into the area, no one would probably see me.  I was feet from the sidewalk but being early morning, no one was around.  I had seconds to make a decision.  So I headed into the brush, squatted and did what I had to do.  Luckily I had my emergency toilet paper with me.  After I was done, I tried to cover it up as best I could, made sure the coast was clear, and continued on to my bus. 

I felt so ashamed of what I did.  I knew it wasn’t the worst thing as everything left behind was biodegradable.  Also, the creatures that luck around (racoons, squirrels, etc) do this everyday.  But I felt like this was not normal.  Yes cavemen used to do this, but we have plumbing now.  It stayed on my mind all day.  Over the years I would think back to that day and remember how low I felt.  It has always been my dirty little secret.  When I read the post last night, I thought of the story again and felt like it was time to get in off my chest. 

So now you know some of my secrets and part of my Dark Side.  It feels good and theraputic to tell the story and get it off my chest.  My main purpose for telling it though is to not help relieve my thoughts.  I made some peace with what I did long ago.  My real purpose is to help others with this damn disease.  It is to show them that we are all the same and have the same problems.  Like I have stated so many times before….you are not alone with your disease.  For all my Crohnie brother’s and sister’s, don’t ever be embarressed by your disease.  Most of what you go through is normal.  We have all been there at one point.

Recipe for Success


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.

Inspiratation – Where do you find it?


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


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


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


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.

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.