The “R” Word


According to Ali G it is Respek.  According to another IBD blogger, Mary Claire, it would be Resiliency.  For me it is bigger then both of those words put together.  This week, I heard the “R” word officially for the first time since getting Crohn’s Disease…Remission.  My colonoscopy was back in February and I knew I was healed more than the previous year.  Sadly the pictures didn’t save so I couldn’t actually see the results.  This week was my first appointment with my GI since then.  After a little chit-chat and a quick exam, he went on his computer, pulled up the scope results, and mentioned how there was no Crohn’s activity and that I was in remission.Happy

Needless to say I was a little shocked.  I knew I was doing well.  I don’t show many symptoms these days.  I didn’t know I was completely in remission though.  I was so happy.  But like all things, the moment has now passed.  Of course, I am still happy, but just because the Crohn’s is in remission, doesn’t mean I still don’t get symptoms.  Because this is such a nasty disease, even if my intestines are healed, I can still show signs of the damn disease.

The first sign is my joint pains.  Both my knees and my knuckles get bad arthritic pain at times.  Then there are the mouth sores that come on at any given time.  Next are the skin problems like rashes and pimples.  The list can go on and on.

But what does remission mean..to me.  Well, it actually means a lot to me.  For the first time in a long time, my medicine is working.  After years of throwing poisonous medicine into my body without any results, I switched over to a non-conventional drug.  2 years after starting the med, I am in remission.  I would say it is working perfectly and scientist really need to start studying the role Naltrexone can play in IBD.  Another great thing in all this is that my doctor is also convinced that LDN works and might start giving it to other patients.  I was his first and his guinea pig.  I would say the test has been successful.

Another thing this means to me is that diet does in fact play a role in IBD.  For years I ate what I wanted and never healed up.  Along with the change in meds, I also went gluten-free.  It has been a bumpy road in my gluten-free journey and I really have to fight some cravings every now and then.   But ultimately it really has helped in my healing process.

Now, please just know, I am not saying that if everyone took LDN and went GF that they would achieve remission.  Everyone is different.  What works for one person not might work for someone else.  My results may not be typical.  I don’t know since there are no studies showing a correlation.  So please, don’t stop your current therapies to try mine just because I got results.  Whatever you are doing might give you the results you need.  If you are not there yet, be patient.

So for now I will sit back and enjoy what this word means to me because I know like so many others know…that this feeling can go away at any minute.

Crohn’s Forum


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This is just a little post to let you know of some more good things happening.  Recently I was asked to do a monthly post for The Crohn’s Forum’s blog page.  So far there are three others doing post’s for them and many of you will know these names.  They are Jackie from Girls With Guts, Jessica from Uncover Ostomy, and Kathleen from Crohnological Order.

So far all of the post’s I have done for them have been different from what I post on here, and that has been the challenge for me.  As you know, my posting have declined lately.  One of the reasons for that is I don’t know what to talk about.  I have been very busy lately and haven’t had time to focus on my disease.

So, I know I have asked in the past…but what would you want me to talk about.  Are there any topics I haven’t covered that you would want me to talk about?  I am pretty open to anything and as you know, I won’t hold back.  While you think about it, go check out the Crohn’s Forum’s blog site and while you are there check out the rest of the site.  You might meet some new people there and find a new friend.

I do have to say, one really cool thing about their site is their doctor directory.  They have a list of doctors from all over the world with reviews from patients.  If you need to find a new doctor, this can be a great tool for you.

 

IBD Support


In a previous post I had said I was working on some projects and I would let you know what they were when I could.  The first was the IBD prom which sadly, had to be rescheduled to 2015.

The second project I am happy to announce now is a support/meetup group.  I have been working with The Intense Intestines Foundation to organize a support group for the Northern New Jersey area.  Today we have finalized the details.  On May 28th we will hold our first meet up.

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Over the years I have found that CCFA has been losing touch with people with IBD.  I personally asked for a support group to be formed by them in the Northern NJ area but they denied it.  So, when Brian from IIF heard I wanted to start up a group, he asked me to join on to help IIF in bringing groups to the NY, NJ and CT area.  This will be the first of many new groups.

If you actually live in the area and want to come please let me know or email the IIF at Info@IntenseIntestines.org

I Have A Dream


MLK I Have a Dream

Today, January 20th, it is Martin Luther King Jr Day in the USA.  For anyone that doesn’t know who he is, MLK was  an American pastor, activist, humanitarian, and leader in the Civil Rights Movement.  One speech he is well-known for is his “I Have A Dream” speech.    Part of his speech was, “I have a dream that one day this nation will rise up and live out the true meaning of its creed: “We hold these truths to be self-evident, that all men are created equal.”  Also, “With this faith, we will be able to hew out of the mountain of despair a stone of hope. With this faith, we will be able to transform the jangling discords of our nation into a beautiful symphony of brotherhood. With this faith, we will be able to work together, to pray together, to struggle together, to go to jail together, to stand up for freedom together, knowing that we will be free one day.

Now of course, MLK was talking about racism and how one day everyone will be judged as equal and not be looked at for the color of their skin.  This speech was given on August 28th, 1963.  Times were definitely different back then.  Looking at our times now, a lot has changed.  To start, we have a black president of the USA.  Segregation is illegal.  In most places, you aren’t judged by the color of your skin.

But, when you do look closely at the times, some things haven’t changed.  Back in 1963 the president was John F Kennedy.  As many people now know, he suffered from many illnesses, which back then were kept secret.  One of those illnesses that he is thought to have had was IBD.  Not much was known about it then and there weren’t a lot of treatment options.

Fast forward 50 years and a lot more is known about IBD.  We have many treatment options to us, both medicinally and surgical.  However none of these treatment options are cures.  Anyone with IBD has it for life.  Sadly, a lot of us won’t even be able to experience some of these treatments because once again we have inequality.

Instead of race being an issue, this time it is wealth.  Crohn’s Disease and Ulcerative Colitis can occur within anyone.  It is said that about 1.4 million Americans suffer from IBD.  The disease doesn’t care if you are white, black, asian, or hispanic.  However, where the inequality comes in, is in the treatments.  Many of the drugs are expensive.  If you don’t have the money, you can’t have the drugs.  There are some exceptions and the drug companies do help some people.   Sadly though, there are many people out there suffering every day because they aren’t being treated.  They are ignored because they don’t have health insurance.  They are out of work and don’t have the thousands of dollars needed for a month’s supply of medicine.  These people are pushed aside and told that they can’t have something because of their status in life.

MLK had a dream.  His dream was that African-Americans would be treated as equals.    For the most part, his dream has come true.  Now, I have a dream.  I have a dream where one day people will be allowed to be given medicine regardless of the amount of money they have.  I have a dream where one day people will be treated for their illnesses because they are sick and not because they can pay a bill.  I have a dream that one day IBD will be looked at as life ending diseases and a cure will be researched and found.  I look forward to when IBD will be given the respect it is deserved.  And I will end this with the final words of MLK’s speech:

And when this happens, and when we allow freedom ring, when we let it ring from every village and every hamlet, from every state and every city, we will be able to speed up that day when all of God’s children, black men and white men, Jews and Gentiles, Protestants and Catholics, will be able to join hands and sing in the words of the old Negro spiritual:

                Free at last! Free at last!

                Thank God Almighty, we are free at last”

Happy New Year – A look into 2014


Wow, it has been awhile since I posted anything.  I am sorry for that everyone.  Life has been real busy, especially at work.  A lot of good things are happening though so even though I am busy, it is a good thing.

I recently started working with The Intense Intestines Foundation (www.intenseintestines.org).  I don’t want to say just yet what I am working on but I will definitely reveal that in a couple of months once all the details are worked out.  I will say it has to do with supporting others with IBD and I can not wait to get started.  I also have been working with The Crohn’s Journey Foundation (http://thecrohnsjourneyfoundation.org/).  Again I can’t say just yet what it is I am working on but that will be revealed next month if all goes well.

So how was everyone’s holiday season?  Did you have fun and do anything special?  I know a lot of people I talk to online spent it in the hospital.  Myself, I spent it on a cruise down south.  My wife and I took a Christmas cruise to Florida and the Bahamas.  It was reflecting on the cruise that got me to write this blog.  I was wondering how many of you with IBD find it hard to travel and go somewhere? 

This was my first cruise where I am gluten free.  We had done some research and had read that there would be plenty of options for food for me.  I really didn’t worry about it.  I should have.  My first clue was when we first got on the ship and went to lunch.  The only thing listed as gluten free was the mashed potatoes.  Good thing I know what normally has gluten in it so I was able to play it safe.  This theme of lack of gluten free items would carry on throughout the cruise.  Most of the desserts were not gluten free.  I started to get annoyed because the reality is that it isn’t hard to do.  They did have GF bread and it was ok.  My dinners were altered to be GF and I was happy for that.  But for desserts, they could have made a flourless chocolate cake.  I am sure many people would eat it.

Overall, I had fun on the cruise.  We went to Cape Canaveral in Florida, Nassau Bahamas and their private island in the Bahamas.  I was lucky and had no major issues with my Crohn’s.  I was able to go out and have some fun.  I even was able to indulge in a little alcohol…ok…it was more then a little.  I did worry at times that I might have some problems but luckily my guts stayed quiet.

I would like to know what some of your tricks are travelling.  Do you pack extra clothes?  Do you take certain meds to calm the guts?  I remember take Lamodal on one cruise about 3 years ago.  I helped me enjoy myself and gave me a life off of the toilet.  Thankfully, I didn’t need it this time around.

Well, vacation time is over and it is a new year.  I think this is going to be a great year.  I myself am working on so many IBD related things.  Besides IIF and TCJF I will be working with GYGIG again in June.  I might do the CCFA Takes Steps this year.  So much to look forward to this year.  I hope to post more often and will let everyone know about everything that is going on.  I do want to say that if you live in the NYC tri state area, we have some good things for you this year.  But that is another post for another time.

Let’s all help fellow IBD Advocate Dennis Frohlich


Recently I had the pleasure to do an interview with Dennis from www.UCVlog.com for his dissertation.  He is doing a research study on how the online inflammatory bowel disease community is created and maintained and how viewers and readers use these websites.  It was very interesting to talk to another guy with IBD and hear some of his views also.  As part of the interview, he asked me to share his request and ask people to fill out a survey for him.  Here is his request:

“Hello everybody!

 I am a graduate student at the University of Florida and also somebody with ulcerative colitis. I maintain the United Colon Vlog (http://UCVlog.com), which you may be familiar with.

 For my dissertation, I’m conducting a research study on how the online inflammatory bowel disease community is created and maintained and how viewers and readers like you use these websites. I’m looking for people 18 or older to complete a short survey about your activity in the online community.

 As long as you have Crohn’s disease or ulcerative colitis you are eligible to participate; it doesn’t matter how long you’ve had IBD or how bad your disease is. If your IBD is indeterminate, or you are still going through diagnostic tests, you can still participate! And whether or not you’ve had surgery, you are still eligible.

 The survey will take approximately 10-15 minutes. Please click the link below to access the survey. Thanks for your invaluable help!

 https://ufl.qualtrics.com/SE/?SID=SV_cAqPW1khdSsFuC1

 If you have any questions at all, please let me know.

 Sincerely,

Dennis Frohlich

University of Florida

dennis.frohlich@ufl.edu”

If you haven’t checked out his site yet, please go look at it.  He runs the site with Nadia who I have also talked with online and she is a wonderful person also.  The two of them do some great work together. 

I stumbled upon UCVlog early on in my research about IBD.  When I first starting heading down the “advocacy” road, UCVlog was one of the first sites I found.  I found their openness to the diseases refreshing and empowering.  Dennis was also one of the first guys I saw advocating for IBD and this became a big inspiration for me to jump in and start advocating.  As I have been saying for 2 years now…we need more guys to speak up.

Thank you Dennis for letting me be part of your research.  With so much bad news about this disease going around lately (way too many deaths), it was nice to talk to someone who is inspiring and helped renew my faith that we can educate and one day maybe find a cure.

“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.

Get Your Guts in Gear 2013


On June 7-9 I attended my first Get Your Guts in Gear ride.  For anyone that doesn’t know who they are, Get Your Guts in Gear or GYGIG is a non-profit organization that raises money for IBD through bike rides.  This years ride was the 10th anniversary of the New York ride.

When I first heard about the ride I thought this was something that was part of CCFA and I didn’t realize it was a separate organization.  I also wasn’t to interested because I haven’t rode a bike in many many years so I knew there was no way I would be able to do a 200 mile ride.  Then a friend and co-IBDer told me I can crew.  The crew are the people who support the riders in a number of different ways from making sure the road is clear of debris to manning a rest stop to just cheering them on to raise their spirits.  This sounded more like my style so after some thinking, I signed up.

As time went on, Marisa, the friend that told me to crew, kept telling me how much fun I would have and how it would change my life.  I knew it had changed a lot for her and I didn’t know what it would hold for me.  I would soon find out.

When I arrived at the site for the shuttle bus, I was the first one there.  Like most things, I was the first one and I was alone.  Eventually others would arrive and the first ones to come were friends that I have spoken to online and have followed in blogs, but never met.  It was like a book coming to life.  People I have only read about I was now meeting.

GYGIG 2013

That first night was a rough one.  A tropical storm was drenching us and there was no escaping the rain.  One of my jobs was to help load the equipment truck so I was soaked by the end of the night.  I would be the last to come back to our bunk.  I would see everyone in one area chatting and getting to know one another.  I was alone. wet and cold.  But I was welcomed with open arms and right away I felt like part of a family.

GYGIG - Marisa and Frank

For many of us, this was our first time with GYGIG and even the first time meeting each other.  Yet when we all tried to go to bed and someone’s snoring kept us all awake, we truly were like a family as we all yelled at the snorer (who will remain nameless).  What we found from this was within hours, we truly were a family.

The next two days would be rough for me.  My job assignment was Camp.  This entailed making sure the equipment truck was loaded and unloaded, the campsites were cleaned and nothing got left behind when we left, setting up the camp for everyone’s arrival, making sure snacks and drinks were provided, keeping morale up…ok I am getting tired again just thinking about it all.  I have had problems with sleep and I seem to always be tired.  My back has been hurting on and off from my degenerative disks.  Overall I am a mess but this weekend, all of that went away and it was like I was 18 again.  I had so much energy.  I think I got it because even though it was hard work, I enjoyed doing it.

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The best part of the weekend though were the people who I met.  Some I had met before.  Others I had spoken to online but met the first time here.  Many others I was meeting for the first time ever.  Not everyone on this ride had IBD but were somehow connected to it.  At night, the group I hung out with would share stories about our lives and IBD.  This was the first time I was with a large group of IBDers and they were all being so open with their disease.  I loved it.

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At the end of the weekend, I snapped a photo.  It would be one of my last memories for the weekend.  It was a breathtaking view of the mountain and water.  It described my weekend perfectly.  Wet, some ups, some downs but overall breathtaking.  Some of my Camp crew dropped me off to get my bag before I left.  I started this journey alone..  I left being part of a family.  When I first signed up for GYGIG I only planned on doing it the one time.  Now, I can’t see my life without it.   It is an experience that I never want to forget and hopefully can relive it every year.

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Take Steps 2013


Yesterday I participated in the Take Steps for Crohns and Colitis which is run by CCFA.  Better yet, I volunteered.  Last year I was wiped out from walking so I decided this year I would help out instead.  Ok, that took its toll on my body even more. Today my back and neck are achy and my feet are sore.  But it was soooo worth it.

One thing I like about the walk is the location.  I was helping out at the Liberty State Park walk and the views from there are breathtaking.

 

Freedom TowerStatue of Liberty 

 

 

 

 

 

 

 

 

After I take this in I head over to my assigned area, the food tent.  This year I decided to put my talents to use.  I helped get donated food for the walk.  I was able to get some coconut water, vitamin water, Smartwater, fruit and chips. 

 

Food tent 2

 

Food tent 3

 

Food tent 1

 

After we got set up, I decided to look around before it got real busy.  There were tents for some drug reps (Humira, Remicade),  Team Challenge sign ups, the Kids Corner with bouncy house, and the DJ.  All was quiet before the storm.

 

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As you can see from the pictures, it looked like a storm was coming but luckily, the rain held off.  The wind was pretty powerful though.  With the almost 90 degrees and humidity, the wind was refreshing.

At 4:00, the walkers were off for a 2.15 mile walk.  When they came back that was when the real fun began.  Our tent got mobbed.  Aside from what I brought, we also had sandwiches, cookies, granola bars, orange juice and spring water.  Pretty much everything went.

One thing I have noticed about these walks, and it disturbs me a little is that everyone chats but no one really talks about the disease …. which is why we are all here.  I was talking with one of the volunteers and he asked why I was there.  I mentioned I had Crohns.  He said his son has Crohns and that was it.  No further discussion.  It really hit me that although everyone comes out to bring awareness and come together, no one really wants to talk about it still.  My only conclusion is because it isn’t just the patient but friends and family there also that they don’t feel like opening up.  I can understand that.

This up coming weekend is Get Your Guts in Gear.  I know a lot of the volunteers that will be there.  I know we will be talking about it a lot more but we will also have fun and talk about other things.   2 weeks and 2 awareness events.  It is enough to tire these old bones.  After the walk, I feel achy.  Hate to see what next week brings.   Stay tuned for a recap.

 

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