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.

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”

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.

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.

What’s Your Trigger


Lately I have been thinking about how lucky I am in the food categories, compared to many others with IBD.  I see people on TPN or liquid diets and think, “Well, at least I can eat solid food”.    Even though I have some restrictions, every day I feel like I am lucky to be in the position I am in.

But today, I really thought about it and I have started to question, “Am I really lucky”.  After my major flare, eggs which were a safe food for me became an enemy.  So did bananas.  I also realized that gluten products were not helping me to get well.  I went gluten-free and cut out eggs.  But, cravings would hit.  I found the egg issue was a big one.  After talking to others with digestive issues, I found out about Papaya Enzymes.  I started taking them every time I ate eggs and they really helped.  I would get no pain, wouldn’t have to rush to the bathroom 10 times a day and my outlook on food changed.

But now, there is a shift in my life.  I take 5 enzyme pills when I eat eggs (bottle recommends 2-3).  They used to help but now lately I have been getting some pains when I eat eggs.  I know that means my body is adjusting to the pills and the efficiency of them is diminishing.  Along with eggs, salad has now also become an issue.  I used to be fine with any leafy vegetable.  But now within less than an hour it runs its course and comes out almost as fast as it goes in.  Slowly, my dietary choices are getting slim.  I am back to trying to lose weight so I have to watch what I eat and my choices are shrinking.

So I was sitting here this morning, eating scrambled eggs and thinking, am I still lucky.  As many of you know, I love food.  I enjoy the flavors and smells.  I love the entire experience surrounding food.  I don’t feel I can survive on a very strict diet but that is where I am heading.  Things I onced love to indulge in I can no longer eat.  It has been almost 2 years since I had a slice of NY pizza or a bagel, chinese dumplings or pastries.  So many foods that I took for granted I might never eat again.  And that scares me.  I am trying not to feel depressed over this but it is hard.  I went to school originally to be a chef and I work in the hospitality industry.  I buy food every day for work.  It is my life.  To look at a bounty of great looking food and know that I can’t touch it really saddens me.

Some of you might think this is self pity, and part of it is.  I know there are others worse off than me.  But most people don’t realize just what food means to me.  It isn’t just a nutritional, life sustaining thing.  It is a way of life and is a part of mine.  I feel like today, a part of me has died. 

So where does this leave me know.  I am still struggling with my weight and trying to eat healthier.  I am trying to diet.  But this latest development hurt things.  But I can’t give in and I won’t.  I am done with excuses.  I will find a way to get to my goal and overcome my obstacle.  Hopefully, my passion for food will rise like the phoenix and renew itself.  There are so many new foods out there to try.  It might be time to explore options and see just what my diseased body can handle.

And worst case…as I am sure a friend of mine might suggest…there are always gummy bears to live off of.  But that, is another story.

Absence Makes The Heart Grow Fonder


I want to start off by apologizing.  It has been over a month since I have posted and for anyone looking for a new posts to come here and find none I am sorry.  Life has been very busy and sadly I haven’t had the time to get online to write a post.

Now that the summer is winding down and autumn is on the horizon, things will start to slow down a little.  Work has been very very busy but after September all will quiet down there.  At home, I am still doing board of director stuff and again, in October that might slow down also.

One thing I want to talk about while I have the chance is diet.  As many of you know, weight has been an issue with me.  I have talked about my journey with weight loss and doing a diet through Weight Watchers.  This past year had me so busy that I stopped going to meetings and eventually stopped the program.  I had hoped that I would finally be ok and keep the weight off.  Sadly, I am now back in the boat of weight gain.  It is slowly coming back and like Crohn’s…it is annoying the F out of me.Weight

Like IBD which can flare up at any time, weight gain comes when it wants.  So I am back with my demons trying to figure out what to do.  I am still Gluten Free and that makes my diet issues even worse.  I feel so loss on what to eat and what to do.  As anyone knows, when you feel loss you feel stress.  Stress then causes me to eat and the vicious cycle starts.  Stress also makes IBD worse and causes flares.

Overall, I am still doing well with my CD.  I see my GI in just over a week and I know it will be an uneventful meeting.  He will probably won’t have me return for 6 months (I hope) which means my next visit after this could be the colonoscopy time.  Ugh!!  I am still on LDN though so I am curious how it is affecting my insides and if it has helped in the healing processes any.  I feel great so I hope there is some significant healing.

But back to the diet.  I went into a very big IBD chat group on Facebook to find out what other overweight IBDers have done as far as diets.  Sadly, I didn’t get the answers I was hoping for.  I did get some good advice, but overall it wasn’t what I was really looking for.  A big advice was to cut back on carbs, which I will try.  It isn’t easy as I have realized that I have an addiction to carbs.  The other big advice was to increase protein.  It was recommended that for breakfast, instead of cereal to eat leftover dinner protein.  Um….no.  That may be fine for some people and for some foods I can maybe do that…but overall, no.  When I eat breakfast, I am still half asleep and so are my taste buds.  They don’t need a shock of BBQ sauce or Teriyaki  in the morning.

What I am curious, and I hope some people will feel ok to open up, what do some of you with IBD do to lose weight.  I know most automatically lose weight, but for those of you that are like me and still have weight issues, what do you do.  What works and what doesn’t.  Feel free to leave a comment or even email me.  I would love help from everyone and I really could use some direction.