“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