“I No Longer Have Crohn’s, This So-Called Incurable Disease”


Now that I got your attention…no I did not cure my Crohn’s.  This is a quote from a writer/blogger that claims she cured her Crohn’s from practicing Buddhism.

As you can guess, I am about to go on a rant because this infuriates me.  I have said it before, and will say it again.  IBD is incurable.  My last post was a repost from a friend who explains how even by removing the disease portion of your intestines with UC you are not cured.  It helped open my eyes because I was one of those that used to say that if you remove UC, then you are cured.  I know I was wrong in that thinking now.  Now, we have this person that says if you just think your disease away you can cure yourself.

Before I go any further, please go read the article, which was put out by a news agency.  https://open.abc.net.au/posts/my-freedom-from-bowel-disease-75ut3na

That’s right…a news agency.  The same people who should be reporting facts are now reporting opinions. 

Now, I don’t want to dismiss the whole mind/body connection.  I do believe in it.  For years I felt I controlled my disease by my thoughts.  But I only controlled it.  I would never say I cured myself, even though I had no symptoms and was off all meds.  I was in remission.  It is possible to use your mind to help control the body.  I think her becoming a Buddhist helped her to clear and focus her mind.  Meditation is good for the body.  I won’t argue any of that.  Also, I won’t argue that stress plays a big factor in our disease and by removing it you get better.  Removing stress from the body at any time will help it heal against any disease.

“What became abundantly clear to me was that how we ‘think’ creates chemical reactions in the body. This in turn affects and can damage the cells within us. With no stress, the immune system works extremely well. By practicing acceptance, which prevents all stress, I got through breast cancer, skin cancer, and both my brothers dying of cancer. With each of these tests, the so-called incurable Crohn’s disease never returned.”

This was probably one of the few things I was able to agree with in the article.  I am happy that this author was able to tackle Cancer and still remain in remission.  I think it would take a very focused mind and it seems like she has one.  I applaud her for that. 

The one quote that worries me though was this.. “In my understanding I no longer have Crohn’s, this so-called incurable disease. Some doctors still find this hard to believe and often just say to me “So you are managing your Crohn’s disease well!” I manage nothing but my mind.”  It worries me because she isn’t managing her Crohn’s.  She is treating this like she is cured, and even the doctors don’t say she is.  I think when she gets a flare she is going to spiral downwards real quick and probably suffer from some bad depression.

I sort of hope that Kit Campbell reads this and comes to the realization that she isn’t cured.  I hope that she eventually sees what we all see, and that she needs to be treated.  But I know reality and the truth is my job as an activists just got harder because of people like her telling stories that are best kept for the campfires.

World IBD Day 2013


HAPPY WORLD IBD DAY!!!!!!

The time has come once again for us to celebrate our disease and spread awareness.  This year I was inspired by CCFA’s poor attempt at marketing IBD.  As you know from previous posts that I was not for their Escape The Stall campaign.  I felt their campaign didn’t show just what our disease is or can do.

So, to keep this brief, I made my own video to show just what this disease is to us.  I hope you enjoy it.

 

The Health Activist Writer’s Month Challange – Day 6 Letters


Write a letter to your condition – what do you want to get off your chest?

Dear Crohn’s;

We have known each other for about 25 years now.  We have had some good days and we have had some bad days.  We have laughed together and we have cried.  Well, this letter is to put you on notice.

I have learned a lot since the early days.  I remember when we were first introduced to each other.  It was at L.I.J. hospital and I was just a scared teenager.  I thought I was going to be sick forever and then the doctor told me about you.  After bothering me for the next 2 years, we called a truce and you left me alone for my college years.  I was very thankful for that.  What I didn’t like was that you never told me about yourself.  You remained a mystery to me and I never really got to know you.

Flash forward many years to the year 2010.  For some time now we were reintroduced and you have given me trouble, but I had learned to live with you.  Then tragedy struck.  Your cousin, Ulcerative Colitis, was very cruel and took my father in law from us.  This hurt me very deeply.  To add to the hurt, you decided to start causing trouble.  For 2011, there was nothing but pain and despair with you.  You were nothing but cruel to me.  I wanted you gone once and for all.

Little did I know that the pain you were causing would help change my life.  When you gave me my darkest days in January 2012, I would see my life change.  Your cruelty would cause so much joy in my life.  Something awoke inside of me and I decided to finally learn about you.  I did my research and while doing that I got to meet some of the greatest people in the world.  Not only do they live with your relatives, but they would be some of the most inspirational people I would get to know.  They would show me that you don’t run my life but I do.  No matter how hard you try to cause me problems, I would no longer let you.

These people you forced me to meet, and I am thankful for that, would give me the strength to fight back.  They would show me that the foods you wanted me to eat were not good for me and my health, so I would change.  I know you don’t like me being gluten-free because you won’t survive.  Sorry, but I have to look after my health.

I know you loved all the meds I was taking because they didn’t seem to hurt you, only me.  So once again, I am not sorry that you don’t like the naltrexone that I am taking.  Those people you force me to meet, well they told me that this drug would be great for me and would maybe help you make the decision to move out.  Sorry, I have to listen to them.  You have stayed here for too long.

I know have learned what you are.  I have learned that I don’t have to let you run my life.  So I am putting you on notice.  I know you will never leave me, but you have to leave me alone.  I will not take any of your “crap” anymore.

Crohn’s Disease Warrior Patrol: A Charity Is Born


This is a repost from http://www.healthline.com/health-news/crohns-warrior-patrol-charity-sponsors-hospital-visits-031313  The article was written by Jaime Weinstein, a fellow online health activist

 

Crohn's Charity

No matter where you turn these days you see commercials and print ads featuring #Hashtags, links to Facebook and Twitter pages, and QR codes for corporate contests. However, social media isn’t just for advertisers; it’s for patients too.

Social networks are a means for patients living with IBD who are located across the globe to reach out to and communicate with one another. It was also the catalyst for Michael A. Weiss to create the Crohn’s Disease Warrior Patrol (CDWP).

A Beautiful Idea

In the late fall of 2012, Weiss, a lawyer, author, and long-time Crohn’s disease survivor, blogged about the need for patient support from others who understand things that only other IBD patients can. A few weeks later, Weiss was contacted via social media about meeting with a young patient named Damon, his mothers, and his older brother.

Ivy Lindsay of Comfort Ostomy Covers by Ivy was originally contacted by one of Damon’s moms to create personalized ostomy covers for Damon, who was having a hard time coping with not one but two stomas (ports in the abdomen that are used to remove waste from the body). One of Weiss’ blog readers and Facebook friends who also happens to be an IBD advocate, Jeffrey LeVine, told Lindsay to speak with Weiss about her young client.

They talked at length about the young patient and his needs, but something was still missing: another IBD patient with an ostomy whom Damon could relate to. In came Marisa Troy. LeVine introduced Troy into the fold, and few phone calls later, arrangements were made for the trio to embark on their mission to meet Damon and raise his spirits.

“Marisa was amazing with Damon and I was impressed with her ability to make him feel at ease while she was also being so candid about her own experiences,” Weiss said of Troy. You can read more about the CDWP’s inaugural visit with Damon here.

This was the kind of interaction Weiss envisioned when he blogged, “Patients helping patients is the best medicine.”

The Birth of a Non-Profit

After meeting with Damon, Weiss embarked on a quest to expand the CDWP. He wanted to create an organization to connect Crohn’s “warriors” and advocates with hospitalized IDB patients to offer them comfort and a friendly, in-person visit.

Several of Weiss’ social media contacts referred him to Alex Fair, CEO of Medstartr.com, a website that utilizes crowd funding for healthcare start-ups. With the help of Fair, a few lawyer friends, Wall Street financiers, and Foundation executives, Weiss crafted a multi-phase business plan for the CDWP and will file for Tax Exempt Status from the IRS as a Charitable Foundation under section 501(c) 3 within the next few weeks.

The CDWP: Not Just for Crohn’s Patients

The CDWP is not just for Crohn’s patients, it’s for all IBD “warriors.” And through the Medstartr initiative, Weiss is hopeful that CDWP will be embraced by IBD medical practices, psychological practitioners, hospitals, and pharmaceutical companies.

If you would like to become an IBD “warrior” helping other patients in your area, you can sign up at: http://crohnsdiseasewarriorpatrol.org/.

 

I was happy to be involved in this meeting with Damon.  I felt like my part wasn’t that big and I was just doing what needed to be done.  My original post about this can be found here http://aguywithcrohns.com/2012/12/31/goodbye-2012-hello-2013/.  

“Ah The Sweet Nectar of the Gods”


Every morning I think this as I take my first sip of coffee.  Ever since my days working in Starbucks I have had a love for coffee and I look forward to it every morning.

But this post is not about coffee.  Today, this phrase will be said about another liquid, a liquid that has been around for centuries.  This liquid is used in every culture in one form or another.  It is so old that it is even mentioned in the Bible, I believe starting with Noah.  He drank this after he found land when the flood receded.  This sweet nectar is of course wine.

A couple of months ago on Twitter someone wrote that wine seemed to help their Crohn’s.  For whatever reason, whenever they drank wine, they felt better.  Another person and I started joking about it but it got me thinking.  What if there is some connection between wine and IBD.  What if drinking a glass a day somehow could reduce symptoms and help.

By now most people know of the health benefits of wine.  We know they have tons of antioxidants. 

“Antioxidants in red wine called polyphenols may help protect the lining of blood vessels in your heart. A polyphenol called resveratrol is one substance in red wine that’s gotten attention.  Resveratrol might be a key ingredient in red wine that helps prevent damage to blood vessels, reduces “bad” cholesterol and prevents blood clots.” – http://www.mayoclinic.com/health/red-wine/HB00089

 

Lower Your Cholesterol

Alcohol also can have a very powerful effect and increase HDL “good” cholesterol by 20% if used moderately and in the context of a healthy diet along with regular physical activity, says Rimm. Higher HDL levels are linked to lower risks of heart disease.

“The research evidence points to ethanol, or the alcohol component, of beer, wine, or spirits as the substrate that can help lower cholesterol levels, increase ‘good’ HDL cholesterol,” he says.

Boost Your Brain

A recent study shows a boost in brain power for women who enjoy a little alcohol. The study, published in the Jan. 20 issue of The New England Journal of Medicine, evaluated more than 12,000 women aged 70-81. Moderate drinkers scored better than teetotalers on tests of mental function. Researchers found a boost in brainpower with one drink a day. Moderate drinkers had a 23% reduced risk of mental decline compared with nondrinkers.

source – http://www.webmd.com/food-recipes/features/wine-how-much-is-good-for-you

 

Now of course as you can see, none of these studies have anything to do with IBD…so I decided to do my own experiment.  I have never been a big wine drinker and when I do drink wine, it is usually white wine.  Over the years though I have wanted to get into red wine so now was a good time to start.  I have a bunch of reds just sitting in my apt.  Many were gifts that I received and of course never drank.  So I took one that was supposed to be really good and cracked it open. (Yes it was really good..best red wine I have ever had)  I limited my self to only one glass per sitting so it took about a week for me to finish it.  Funny thing happened…I started feeling better.  I had been having a flare and it was now going away.  My trips to the bathroom were slowing.  Could it be the wine was actually helping.  I decided to go a couple of days before my next bottle.  

In the non wine days, nothing bad happened but I didn’t feel like I was reaching some great breakthrough either.  So, crack open another bottle.  This time I started spacing out the days I was drinking it.  There were days I just wasn’t in the mood for it, other days I had work to do and didn’t want to drink that night.  So it started to become a rarity that I was drinking and I have to say, I have started to feel bad again.  The past couple of days I have had some depression.  My bowel movements have increased again.  I have been having some pain in the mornings.

So this up coming week, I will try to drink more wine again and see what happens.  It is hard to believe that something that is so simple can be a big help.  I will keep you updated on how the experiment is going.  If I start to feel better again, I might start actually keeping a journal to document this as it might be a real worth while experiment. 

Today is Friday.  It is snowing outside.  It is cold.  This week at work has not been good.  I can think of nothing better than ending the night and week with a little libation.  Let’s raise a glass of vino to our health and hope that maybe one day we can all literally drink our troubles away….or at least our diseases.

The Great Experiment Part 2


Last January I was in a nasty flare.  I was going to the bathroom 30 times a day.  I was obese with high cholesterol and high blood sugar.  My body was a mess and I wasn’t treating it nicely.  So, I decided to make some changes as many of you already know.  I joined Weight Watchers to lose weight, which I was pretty good with.  For the year I lost about 30 lbs.  I also went Gluten-Free to help with my Crohn’s.  I wanted to give my intestines a rest from the harsh fiber of wheat.  Also, this was supposed to help in reducing my blood sugar levels.  Lastly, and this happened later in the year, I switched meds.  I went off Humira and started Low Dose Naltrexone.

For the most part everything was working well.  I achieved what seemed like remission.  I lost weight.  I feel good and healthier.  I was finally on the right track.  And then it all came to a crashing halt.  The Dreaded Holidays!!!   Anyone that knows me knows I like to eat.  Well, the holidays give me that opportunity.  Pecan Pie, Pumpkin Pie, Chocolate covered anything.  With New Years Eve, there is a lot of eating, then some drinking, then some more eating and yes, more drinking.

Well, it is now January 2013.  My weight has been fine and I don’t think I have gained too much weight back as my clothes still fit.  However, the past week or so I have been going to the bathroom more.  I am not feeling as healthy as I should and I know the reason.  I have been putting garbage into my body again and have completely looked away from eating right.  I am now paying for it.

So now I know that diet most definitely plays a part in IBD.  Today is Friday night.  This weekend is my last hurrah.  As of Monday I start up my experiment with nutrition and IBD and get back to eating correctly.  I am going back onto the Weight Watchers plan.  I am going to stop putting nasty chemicals into my body.  I am going to start treating my body like it should be treated.

A lot of people still say that nutrition means nothing when it comes to IBD.  I think I might have proven this past year that it does.  When I ate healthy with all natural products I was doing great.  When I started eating junk again, I felt like I was on the verge of a flare.  I have learned a lot in 2012 and I know that I need to stop NOW.  I need to practice what I preach.

So I will continue on my journey come Monday.  I won’t look back.  I won’t second guess myself and I won’t regret it for one minute.  I want to be completely healthy.  I want others to look and me and say, “If he can do it, then anyone can” because I couldn’t do it for so many years.  I denied the nutrition connection and ignored my weight. 

The holidays are done.  My denial is over.  I had my fill and now I need to continue my journey and my experiment.  Welcome to Jeff 2.0.  Time to take all I have learned and put it into practice.  And there is nothing better on a journey than some company…so Who Is With Me?

Goodbye 2012, Hello 2013


 

As we close the door to another year, I look back to see if I have grown this year.  Of course I don’t mean physically, but mentally and spiritually.  Every year I treat New Years Eve like any other day.  I haven’t made a bid deal about it in years.  This year I have changed inside and I now sit here reflecting on the person I have become.

I went into this year in the biggest flare that I have ever had.  I was depressed, in pain and living in the bathroom.  I was alone with my disease and felt like I had no one to turn to.  I now exit this year in remission, running a blog to help others and feel like I am part of the best community out there.  I am part of a group that no matter how they feel, they will still give all they can to help out others.  It is a very unselfish community and one I am proud to be in.

This past weekend I was able to contribute to this unselfish community.  An online friend who runs an ostomy cover company alerted a lot of people about a 9 yr old that was in the hospital.  He had 2 ostomies and was having a hard time with them.  Originally I was just going to donate a little bit to help cover the cost of the covers she was making for him.  When I spoke with this friend she mentioned that he was in a hospital fairly close to me.  I thought she wanted me to bring him the covers but she mentioned that maybe I could visit him.  I don’t have an ostomy so I didn’t know how much of a help I could be but I put out a call online.   2 wonderful people stepped up to the plate.  One, Michael A Weiss, is a seasoned hospital patient and is very big on patient advocacy.  The second, Marisa Troy, is an ostomate and would be able to give any information that she could. 

I was hesitant to go when I heard the kid didn’t necessarily have IBD, but after Michael and Marisa still were going, I knew I had to.  It was the right thing to do.  So Sunday, we all met at the hospital and visited one of the bravest 9 yr olds I have ever met.  It went through so much with blockages, septic shock, seizures, surgery and just the mental anguish that goes with this.  When we got there, he was sitting on a couch with his family.  He was very shy but I could see the life in his eyes.  I knew he was going to get through this ordeal.  I could see the fighter in him.  His mom’s told us his whole story and he has not had an easy life. 

After our 90 minute visit, I knew I did the right thing by going.  It felt so good.  He might not have said much and didn’t interact with us but I think we helped out his mom’s a lot.  I think we eased their minds a little and gave them not only some answers but hope.  They said that he felt so alone and now both him and his mom’s will know that no matter what, he is never alone.  There are tons of us out there willing to help….no matter what.

So I sit here looking back and I see that this year I definitely grew.  My heart and mind are bigger now.  I understand the whole “holiday spirit” thing.  Doing good things unconditionally feels great and makes me want to do more.  I ended 2012 on a great note and I hope to continue going into 2013.  I don’t know what this year will bring but I know that I still have room to grow….and I look forward to it.

 

You only get 2 feel #Humanity when U GIVE of urself.  Visit a kid in a #hospital.  http://bit.ly/UhiWFg   #26Acts

Such a Loving Community I Live In


Last night I went online to check my email and saw I had a mention in Twitter.  I shot over to Twitter to see @Caringforcrohns nominated me for a Reality Blog Award.  I didn’t know what this was until I read about it, and I have to say that I am honored by it.  It just shows how much love there is in our IBD community.

reality-award1

 

Of course there is a guideline to the award.  You have to answer 5 questions which I am more than happy to do.

1. If you could change one thing what would you change?  If I could change one thing, it would be teaching doctors how to relate to patients.  A lot of doctors don’t actually listen to their patients and treat them based on how they were taught.  Many are unwilling to use non-traditional treatments or won’t use the newest methods because they don’t know about it.  Doctors need to listen to us, the patients, and if we want to try something, they should learn more about it and support us.  Support will ease our minds and this will help the healing process.

2. If you could repeat any age, what would it be? This is hard because I have learned not to dwell in the past.  But if I really have to choose, I would be 18 again.  I would love to be young and redo my college years.  They were care free days where my Crohn’s didn’t bother me that much.  I learned so much about my self that I would love to rediscover it all again.

3. What one thing really scares you?  One thing that scares me is my lack of good reactions to meds.  I don’t react well to almost all the Crohn’s meds out there so there really isn’t much for me to take.  If I fail on my current med, LDN, there is nothing for me to try next.  That means my Crohn’s can get worse and put me in a hospital.  That really scares me.  But I have to stay positive and right now, I am doing well.  There is no reason to believe this won’t last.

4. What is one dream you have not completed, and do you think you’ll be able to complete it?  One of my dreams is to open my own restaurant.  Right now, being gluten-free, I notice it is hard to eat out and I would love to open a completely GF restaurant.  I don’t know if I will ever get to do it.  The one thing that stands in my way is the money.  I need an income and don’t have the money to open my own place.  It is something I would have to work out…but maybe one day.

5. If you could be someone else for one day, who would it be?  Honestly, there is no one I would want to be.  I love being who I am and would not change it for the world.  I think everyone should like who they are and strive to be the best they can be.  Never give up on yourself.

So, enough about me.  Now the real fun is here.  I get to nominate some other people for the award.  Here are my nominations in no particular order:

Alyssa from Love For Mutant Guts – http://loveformutantguts.wordpress.com/  No matter what is going on in her life, she will tell it to you straight.  She doesn’t hold back and will even post the most unflattering pictures just to show you what this disease can do to a person.  To me that takes guts and no matter how much of them she is missing, she has tons of them.

Sara from Inflamed and Untamed -  http://www.inflamed-and-untamed.com/ Sara is probably the most recognized face of IBD.  Everyone knows her and has watched her video.  But most important is that Sara is inspirational.  She has gone through so much and still manages to hold her head high.  She manages to lift the spirits of so many people.

Kelly from http://sickgirldiary.tumblr.com/ – What can I say about Kelly. She is so young and has gone through so much.  She is yet another inspirational woman who despite all the pain she is in, she manages to give out inspiration to so many people.  She maintains her videos and website despite all that she is going through.  Anyone that knows her knows that she has a love for life that she will never give up on and I am honored to call her a friend.

Amanda from http://stopthinkingstartwriting.blogspot.com/ – Amanda is one of those people who has been sick for years yet can’t seem to get a diagnosis.  She has been in a ball in the corner of the room on the floor with no hope.  But a light went on in her and she now has nothing but inspiration for people.  Even without a diagnosis, she keeps moving through life and doesn’t let her pain stop her.

Julie from http://www.semicolongirl.com/ – Julie is such an inspiration.  Despite have a disease and despite having half a colon, she is still out there being active.  She runs a lot and just got involved with the CCFA Team Challenge run in Vegas.  She shows everyone that an illness shouldn’t slow you down no matter what.

For the nominees - here are the guidelines in accepting the award.

  1. Visit and thank the blogger who nominated you.
  2. Acknowledge that blogger on your blog and link back to them.
  3. Answer the 5 questions presented.
  4. Nominate up to 20 blogs for the award and notify them on their blogs.
  5. Copy and paste the award on your blog somewhere.

So, finally, I want to thank Caring for Crohns again for the lovely nomination.  I am loving the love I have found in our community this year and I hope that this next year brings out even more from us.

Crohns & Colitis Awareness Week – Dec 1 – Dec 7 2012


Ok, I lied in my last post.  Here is another one, but this will be short and sweet.

Starting tomorrow, we celebrate Crohn’s and Colitis Awareness Week here in the US.   So how is everyone going to show their support.  Here is one site that explains it best .  Everyone should wear something purple this week.  You can also wear one of your “Ask Me” shirts from The Great Bowel Movement, which is what I will do as I don’t really own anything purple.  If you don’t have one, come here to buy one.

Go out, have some fun, and spread the love.  While you do that, take some pictures and send them to me.  I will post as much as I can on here for everyone to see just how great we are at advocacy.

Day 28 #NHBPM – Interview with a community member


For today’s post, I chose to interview someone I recently met in the IBD community.  She has a great website and I wanted to help spread her word around.   I won’t spend much time talking about it.  Instead, you can read the interview and explore her sight.  So without further adieu, here is Sarah from www.myjourneywithcrohns.com)

1. What is the name of your blog and how did you come up with that name?
The name of my website is called My Journey with Crohns (
www.myjourneywithcrohns.com) and what inspired me to come up with the name
was my last visit to the hospital. I was laying in that hospital bed and
was talking to my mom about it, and I said to her “Wow this is going to be
with me forever, such a journey to go through.” And from that I came up
with the name :).

2. What/who inspired you to create your blog?
My last flare/attack, which led me to my first “real” hospital stay,
inspired me to create this website. I had wished for a place I could go to
that obtained, not only a western medicine approach to treatment but
eastern, as well as stories of others who were diagnosed with crohns,
recipes, news updates, funny stories (always good to try to laugh) and more
. I also wanted a place I felt I could connect to someone who knew what I
was going through. I also had such an urge to help others who are going
through what I was going through. My heart goes out to everyone who suffers
with it because I understand how unfair it can be and I just have so much
compassion for my Crohns Community, so if I can help in any way then I will
do it. So with that, I began this website, but with that I also discovered
so many others that share their stories and tools through their own blogs.
That is the amazing thing about Crohn’s Disease, the community behind it is
incredible. That is why I also share on my web site others who have
website/blogs of their own and have their take on their experience with
crohns and things they feel they would like to share.

3. When were you first diagnosed with Crohn’s Disease and how did it
affect your life at the time?
I was diagnosed at the age of 14 but had suffered from symptoms since I was
12, after returning from a trip to Lebanon where I had got a horrible
stomach virus. If there is a connection there, who knows, but I think that
virus woke up this autoimmune disease with no off button.
In terms of it affecting my life, it definitely made being a teenager in
high school a bit more difficult. I would miss a lot of school and be asked
why I would appear to fluctuate in weight all the time. I am pretty sure
some may have thought I had issues with eating. Little did they know, but I
also never shared that I had Crohn’s Disease. I think I never shared for
two reasons. One, I was a teenager and it was tough enough dealing with the
issues that come with that, let alone to share that I had a disease that
made me poop a lot and gave me a lot of pain. Second, I didn’t really
understand what I had to begin with or how serious it was, so how can I
explain something to some when I did not even really know what I was
talking about. Back when I was diagnosed, there was still little studies
done about Crohns and it was not something ever talked about in society.

4. When was your Ah Ha moment when you decided to start speaking up about
IBD.
My Ah Ha moment was this year actually. When I got sick (again, but this
time really bad) and realized that this disease can really impact the rest
of my life if I don’t take it seriously. One of the ways for me to do that
was to open up about having it, because as crazy as it sounds, half my
family STILL had no idea that I had Crohn’s Disease till this year, 14
years after being diagnosed (let alone half my friends). I never shared
because I never thought it deserved to be shared because it was not a big
deal. I had it under control, at least I thought I did. The last 6 months I
dropped 20 pounds, going from 125 to 105, which is very noticeable and hard
to give excuses for. I became pale, lost all my energy and just wanted to
move back to LA to be near my family because I could tell something bad was
coming. I was right, I got an obstruction and I was hospitalized and at
that moment I realized, I have Crohns. Not my version of Crohns, where it
was a normal to go to the bathroom after every meal and have these mini
attacks, but CROHNS, the one that, if I don’t take seriously can really F
up the rest of my life! I hope I am explaining that right, hard to express
that eye opening moment but maybe some of you can relate to it.

5. Who are your inspirations in the IBD community and what makes them
special?
My inspirations are all my twitter friends and Facebook friends I have met
who have Crohns. That community is a combination of moms, dads, sisters,
brother, students, bloggers, teenagers and so on, who help support one
another and show compassion to those who are struggling with their Crohns.
This community has touched my heart and the work I do and hope to
accomplish, I do for them!

6. If you could meet anyone in the IBD who would it be?
I would love to be able to have a huge party with all my twitter and
Facebook friends who have Crohns, and meet them all! Sounds silly, but I
feel it would be a great party. I can not just pick one to meet!

7. What advice would you give someone who is recently diagnosed with
Crohn’s?
I would say that I know it may seem daunting and scary BUT you are not
alone and to reach out to others who have it, it helps a lot. Also know,
you will be ok. Especially during those scary/painful flares, to remind
yourself, that it will pass. I would also say that it is ok to feel all the
emotions that come with it and share it, it is important to have a good
support network that you can talk to about it. If you can not find that
support at home, you will definitely find it on twitter, Facebook and so
many other great websites that have great forums just for that.

8. Has Crohn’s Disease ever stopped you from doing something?
Only once, it stopped me this last time from continuing to work but it
became a blessing in disguise because then I would have never found the
time to create www.myjourneywithcrohns.com and this has become my heart and
love!

9. What is your biggest pet peeve about myths people believe about Crohn’s?

The most annoying thing I encounter is the common thread of people
thinking, “oh crohn’s is the pooping disease, that is why you are so
skinny.” It is the ignorance of others not knowing that it is way more then
“pooping” and that being “skinny” is not a plus from it (as it is usually
said in a way that implies, “oh that is why you are so lucky to be so
skinny.”) That is another bit of a pet peeve (going on a tangent for a
minute), because this past year, before I got sick, I was “fit”, I went to
yoga and palates every other day and was eating right. For the most part my
Crohns was under control, and the second someone found out I had Crohns, I
would always here “Oh that is why you are skinny” (in a way that sounded
like they got their answer as to why I looked the way I did and the world
made sense) and all I wanted to say was, “No, I actually work very hard to
take care of myself, this is not from Crohns. I do this to help prevent me
from getting a Crohn’s Flare.” There are two types of “skinny” with Crohn’s
in my opinion, and people do not get this. The “sick” skinny and the “fit,
I actually take care of myself” skinny. Sorry this just annoys me because I
have heard other friends with Crohns get that taken away from them, the
credit that they take care of themselves and thus may be “fit” from it.
Bottom line, people need to stop commenting on every pound you lose and
gain, especially because you never know the true story behind that person.

10. Do you think there will be a cure in your lifetime?

I hope so