Step out of the Norm


Today I am stepping out of my norm…and I won’t really be talking about IBD.  Today, the thing on my mind is my weight loss and a revelation that I had.

I have mentioned it in some other posts and I don’t hide the fact that I am one of those overweight people with IBD.  When you hear statistics about obesity in America…I am in those statistics.  I never saw myself as obese..but my weight told a different tale.  I am 5 Foot 8 inches and before my weight loss journey I weighed around 240 lbs.  Now I knew I was overweight and had some issues because of it.  My blood sugar was high and my cholesterol was high.  My Crohn’s Disease was out of control and I was in a flare I just couldn’t control.  I knew I had to do something.

One day everything seemed to snap into place.  I was starting to get a new outlook on life with my Crohn’s so I decided to take it another step and control my weight.  I knew this wasn’t going to be easy.  I have been overweight all my life except when I first got sick with IBD.  I knew I had to get my weight down to the 160’s so I had a long road ahead of me.  The trick to this was finding what would work for me.  I have tried eating healthy before (high fiber, whole grains) but that would just anger my CD.  The things my tummy liked were white bleached products like white rice and white bread…the unhealthy stuff.  So this time around I did some research.

At the end of January of 2012, I went Gluten Free.  This was one of the best things I have done in my life for both my health and my Crohn’s.  Besides this, I also joined Weight Watchers..for the 3rd time in my life.  I swore to myself this would be the last time.

Here it is August 2012  and I have done pretty good.  So far I have lost 25 lbs and that is now where the trouble is starting.  The gluten-free diet has been trying some days but I have managed to stay on it.  The Weight Watchers is another story.  One thing they teach you and say you should do every day is track your food.  This helps in keeping tack of your daily points for the day.  Overall I have enough points right now to keep my satisfied.  But lately, I find myself on the weekend skipping the tracking.  Needless to say for the past 2 weeks I have gained some weight back.

Now one of the things they asked us is in a meeting was what keeps you motivated.  WW has this idea of anchors.  You should find something that when you look at it or touch it..it keeps you grounded and remind you why you are doing this.  I felt I never needed an anchor.  My biggest reason for losing weight was not only my bloodwork..but it was to keep my Crohn’s in check.  That is my biggest reason and my main reason to never be overweight again.  However, these past two weeks I have pushed that out of my head and ignored my body.

Last night as I travelled home, I reflected on the past couple of weeks.  I was trying to figure out why I am self sabotaging myself.  I have been doing so well with my journey.   And then it hit me.  All my life I have been overweight.  When I look in the mirror I see a slimmed down version (although still overweight) of myself and I am starting not to recognize him.  All I know is being overweight.  Since I refuse to be that anymore…what is my life going to be like?  How will I survive?  Will I be able to maintain that life?

Some of my thoughts were a little irrational but I know they are in my head so I have acknowledged them.  Whether the thoughts are rational or not, they are there and affecting me.  So I looked into my fear in the eyes.  I stared him down.  I have been sick for too long and I swore I would get better.  So here is this monster with chains in his hands telling me to come with him.  Well…not today.  You can take those chains and find someone else, because you won’t get me anymore.

I want to be healthy.  I want to be in remission.  I want to look in a mirror and say “Damn…who is that sexy guy?”  For years I have wanted to feel like a skinny person.  Well, I am going to get that chance..one day.  I know my fears will come back and haunt me probably for the rest of my life.  But I am done being overweight.  I want to live.  I want to enjoy life.  I want to be around for a long time. 

So, my journey continues.  I have hit a fork in the road and a chose a path.  So far, it is a clear path.  I remember where I am heading and I am back on the yellow bricks again.  My companions are by my side to guide me along.

My courage helped me face those dark fears.  My brains helped me see those fears for what they were.  My heart helped in clearing a path so I can step around the fears.  And my little dog was there to lick my face and show me that everything is alright and I can continue on my way home.  So I take those first steps again on the long road home.  I will get there.  It won’t be a short trip and there will be other obstacle.  And if any of those obstacles are flying monkies..I am running.

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.

Feeling the IBD Love


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?


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.