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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.

Meetup 1

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

Colonoscopy Time


Recently I went for a colonoscopy. This is by far the worst time of the year for me. Every year during President’s week in February I go in for a couple of hours to have my GI dr. look at my insides. This in itself is nothing for me. I am put to sleep and don’t feel a thing. It is the day and night before that really kills me. colonoscopy

Before you can get scoped, you have to be cleaned out. That means you have to take powerful laxatives that keep you in the bathroom all night. Growing up, I used to have to drink this nasty liquid from a gallon jug. Of course, I could never get the stuff down. It was by far the worst tasting stuff ever. Over the years they improved things…a little. Now there are choices. You can do this small bottle of phosphate soda which to me is also nasty. There are pills that are the size of horse tranquilizers that you can take. They are also nasty as they are very salty. The easiest form for most people and I think is probably the most popular one now is Miralax mixed with water, soda, Gatorade or any other liquid. However, I can’t get that down my throat either.
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The prep is very stressful on my body and I get the worst nausea ever. I am sure a lot of it is mental but it is still there. So, my prep is very easy…as far as consuming goes. I take 3 pills of Dulcolax followed by another 3 about 4 hours later. Now I must stress…this is not a normal prep so please don’t do it unless you talk it over with your GI dr. Luckily, I don’t have many issues with my gut. I have no strictures and have had no surgeries. So, this prep method cleans me out fine enough. It does however kill my guts. It gives me the worst cramps and eventually the nausea is so bad that whatever liquid I drank that day comes back out. Once I am cleaned out, the dry heaves start. I get really bad and I feel like I am dying. I do know that it will pass and that thought alone gets me through it.

The other down side to the day before is that you can’t eat anything. You have to be on a clear liquid diet. That means Jello, broth, tea and lots of water. This year, I spent my prep day watching a lot of television. Of course what do I see every 2 seconds…but something advertising food. I watched tons of episodes of Breaking Bad and they were either eating or at a restaurant or having something to do with food. UGH!!!toilet

As you can see, I survived my ordeal. For me, this is a fairly simple procedure. However, I know for many people this isn’t easy. I feel for those people because I know I have it easy and yet it doesn’t feel simple. I have actually seen someone get a number of these scopes within a year. I can’t imagine doing this multiple times within a year. My heart really went out to this person.

My only advice I can give to anyone that has this procedure done is to keep your chin up. The day of prep is just that…a day. It is for one day only. As bad as it seems, it will be over soon. In fact, the prep is worse than the scope itself. So when you are sitting on the throne, doubled over in pain, just remember. Tomorrow, you will get some great meds and a nice deep sleep. And then you can wake up to some juice and crackers, go home and have the best tasting low fiber food around because after not eating for a day, everything taste delicious.

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”

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.

RIP Karrie Jacobs


Karrie Jocobs

This week I learned again just how dangerous IBD can be.   This week we lost another warrior in the battle against Crohn’s Disease.  Karrie Jacobs, mother of 2 little kids and a wife to a loving husband, died from complications of the disease.  I don’t know the whole story but it is being said that she had some issues with strictures and was having trouble breathing.  She called 9-1-1 and by the time the paramedics got there, she had stopped breathing and had pasted on.

I got to know Karrie from a IBD group on Facebook.  She was very kind to others and had a great heart.  I wasn’t aware she had some issues go on so this was a big shock to me as well as everyone else.  But is also shows just how deadly these invisible illnesses can be.

This isn’t the first time I have seen IBD take away someone.  As many of you know, my Father in Law passes away because of complication due to Ulcerative Colitis.  I never knew before him how IBD can be deadly.  Now that I have learned more about both CD and UC I am seeing that they can be as deadly as any other disease.  What makes this worse is that many people don’t know this.

When someone gets Cancer, they get Chemo.  If you have clogged arteries, there are medicines that you can take to lower cholesterol.  But when it comes to IBD, there is still tons of guess work going on and the meds we take don’t always help.  A lot of the times the doctor “tries out” the medicine to see if it will help.

This all frustrates me so much.  Because of the lack of education and funding for IBD, more people will pass away from the diseases.  People that shouldn’t have to if more money was given into finding cures.  Because so many people have no clue what IBD is, the government doesn’t focus on it.  Instead it is left to smaller charities like CCFA to fund the research.

Recently, I joined up with IIF (Intense Intestines Foundation).  They are a smaller charity that raises money and awareness for IBD.  I decided to join because I would be working on something that is near and dear to my heart….education.  I will be working on helping to educate both patients and medical professionals.  I have wanted to do this for so long now and finally my chance is here.

My personal goal is to help bring IBD into the foreground so that we are finally recognized as a serious illness.  I don’t want anymore people to die from these disease because, reality is, they shouldn’t be.  We need a cure and we need it now.  This won’t come until people get educated and help fund the research.

Karrie, you will be missed by so many people.  Just know, you will be remembered.  You were definitely loved and I want to make sure that no one has to go through what your family is going through now.  A cure will be found….I want to make sure of that.

“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.

Book Review – The IBD Healing Plan and Recipe Book


Here is another book review.  This one is about diet and IBD.  The full title is The IBD Healing Plan and Recipe Book: Using Whole Foods to Relieve Crohn’s Disease and Colitis.  It was written by Christie A Korth, CHC, AADP.

The IBD Healing Book

So you are probably wondering just what is the book about and what makes the author a specialist on this.  Well, at age 19, she was diagnosed with Crohn’s Disease.  Like most of us, she went through many different diagnoses and it took 10 years to get the proper one.  Again, like many of us, she then ran the gambit of meds to have none of them work.  After years of suffering, she started to experiment with her diet and found that it would play a major role with her healing process.

Christie starts the book talking about IBD.  From there, she goes into how nutrition helps the body.  She talks about different food intolerance’s  and how people with IBD may suffer from some of them like lactose intolerance, gluten intolerance, etc.  By the end of the book she gives recipes that are based on what she talks about and are sensitive to the food allergies.

Overall, I found this book pretty helpful.  I got a new insight into diets role with IBD.  It took me a little over 20 years to see just how important diet is with IBD.  I went years eating whatever I wanted.  Now that I am gluten-free I have been enjoying living a symptom free life for about a year now.

Sadly, because life has been so busy lately, I haven’t had time to explore and make some of the recipes she includes with the book.  They do look interesting and tasty and one day I will make them.  One recipe I want to try is the Apply Rosemary Cornish Game Hen.  Another recipe which might go well with the hens is the Yummy Healthy Onion Rings.  I miss onion rings (they aren’t gluten-free) and this recipe is gluten-free.

Overall, I would recommend this book to anyone with IBD, especially if they are having a tough time with symptoms.  She gives great insight into the disease and how food plays a part with it.

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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