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.