Tag Archives: IBD

Day 29 #NHBPM – “If I could accomplish one thing (anything) in 2013 it would be…”


2012 is almost done and what a roller coaster ride it was this year.  I started the year in the worst flare of my life yet and I am ending it (hopefully) completely out of a flare and feeling better than I have in years.  So now that I am feeling better, what do I want to accomplish in 2013.

Wow, so many things cross my mind, but to pick one thing….for 2013 I want to help make a difference in the lives of people with IBD.  There are a number of ways to do this, but I have one big one that I am working on and I need the help with as many people as possible.  Sadly, this one thing will be limited to just the people in the United States, but for everyone else, feel free to lend some support.

I have talked with some people about my idea.  It started when I started reading stories from fellow IBDers.  I saw a pattern emerging of people having to stop on the side of the road to poop.  I myself have experienced this problem of driving on a long road to have to bathroom in site.  I know in more rural areas it is hard to have a bathroom in the middle of nowhere.  So, I got to thinking and already contacted my state senators.  I asked if it would be possible to get port-a-potties put on the side of the interstates and thruway’s.  Of course it isn’t as simple as it sounds.  A small rest area would need to be created so no one causes traffic.  But for those roads where you can go 20 miles without a rest stop or exit, this would be great.

What I would love is for anyone in America to start emailing and contacting your state representatives.  Let’s get the ball rolling.  Now I am not sure who exactly is in charge of doing something like this and would love any feedback if anyone knows.  This is a project that I can’t do alone and would love any help.  And this would be great to accomplish within 2013.  I know it is a slim chance that it will happen within a year, but I would love to show just how vocal we can all be for something we believe in.

Day 27 #NHBPM – If I Could Go Anywhere….


If I could go anywhere.  Well, who is to say I can’t do that now?  Maybe I will leave work, grab a suitcase, and head to the airport to jump on the first plane to leave..no matter where it is going.  Ok, that won’t happen.  But, there really is nothing stopping me from traveling with the exception of money.  I don’t have a bottomless bank account so I can’t go where I want.

I am one of the lucky ones.  My disease doesn’t prevent me from traveling (see earlier post on traveling with IBD here), or at least I try not to let it prevent me.  For the past couple of years now my wife and I try to go somewhere in the summer for a week just to get away and see the world.

So if I had to pick one place to go….now that is a tough one.  There are so many places to see that I don’t think I could pick just one.  For starters, I want to see Europe.  I want to see the ancient ruins of Italy.  Take a gondola ride through Venice.  I want to look out from the cliffs of the Greek Isles and see the Mediterranean Sea.  After there, I would love to head to Spain to eat some authentic tapas and sangria.  Then travel north to a place I have wanted to visit most of my life, France.

Since taking French classes in Jr. High school, I have wanted to visit France.   I enjoy French food so that doesn’t worry me.  I would love to walk down the Champs Elyse in Paris and take in the sight of the Eifel Tower.  I would even just enjoy standing on a bridge overlooking the Seine river.  After taking in the sights of Paris, I want to visit some of the vineyards to see just what makes french wine so great.  After I have had my fill, I want to go to Northern France to see the fields of Normandy.  I am a big WWII buff and want to see just where the invasion took place.  I would also visit all the heroes that are buried there to give them a thanks.

Wow, I can go on for hours talking about places to visit, but I notice as I am writing that France really sticks out on places to go.  I guess to answer the topic then, it would be France.  But I wouldn’t stop there.  I want to see most of Europe and Scandinavia, some of the Baltic states, some places in Asia, Australia and New Zealand, Hawaii, California and a number of US States.  There are areas in the Middle East and Africa I want to see also but I want to wait until civil unrest slows down.

Through all of this though, I never once think about my Crohns and how it will slow me down…because when it comes to my dreams, nothing will ever stop me from achieving them.

Day 26 #NHBPM – Why I decided to leave an online community


This was a tough decision I made.  I still go there sometimes but overall, I just ignore the site.  My decision to leave was tough and a sad one. 

I had been going to HealingWell.com for a couple of years.  It was one of the first online forum places I found and joined in regularly.  It is a place where they have boards for all sorts of conditions and of course I posted in the Crohn’s Forum.  I had gotten some great advice over the years and was able to help others as well.

I had always felt like I could be open and honest there.  In turn, I met some great people who really needed some help and support there.  The site was also regularly monitored so if anything got out of hand, it was corrected pretty fast.  Abusive people were closed out and topics that were banned were deleted fast if they were brought up.

So why did I leave if it was such a great place?  Well, to put it simply…it WAS a good place.  I no longer feel it is.  About  two years ago, a lot changed in the forums.  First people in there seemed to be more abusive.  Some of the posters seemed to pick on others.  They would push their “cure all” advice and never accept other opinions.  The Mods (moderators) tried to curtail these posters, but the owner of the site seemed to not care what was going on and didn’t stand behind the Mods to well.  Eventually these bad posters would start verbally attack other members.  I was so horrified by this.  We all have the same disease and we are attacking each other instead of helping.  WTF!

The final straw came when some of the Mods, who I had gotten to know and were truly great helpful people, were let go and replaced.  They weren’t even really told why.  When this came to light in the room…all hell broke loose.  The room was divided into two factions..those for the now former Mods and the abusive people.

The board used to be a loving caring place to talk open and honestly.  It fast turned into an abusive not caring advertising board.  This was not going to work for me.   I was sad to leave it because I had gotten to know a bunch of the people on there and was going to miss them.

Luckily, the best people from the board started a closed group on Facebook and I was lucky enough to be invited …. yeah!  So now I can still talk to them, help them out, be helped out and just enjoy their company without the abuse.  The more I stayed away from the site, the better I feel and the feelings I had towards the site has left me also.

Do I ever regret leaving that community….never.  I felt like I had to make a stand to make a point and I feel I chose well.  Now I won’t lie…..I have been back a couple of times to check it out, but I hardly go back anymore.  It just isn’t the same place as when I joined up.  I have since found other great place to go and other wonderful people to talk to (you all know who you are).

Day 25 #NHBPM – How have your goals as a patient / advocate / person evolved?


Well, we are in the home stretch on the blogs and this is one that will really make me think.  In the beginning of the month I didn’t give much thought to my post, now, I am spending probably too much time on them 🙂  This one will be no different.
When I first started down the IBD road, I didn’t give it much thought.  I went through my years of being sick and I never had a goal in mind.  I just wanted to feel better and live my life.  I didn’t even know too much about the disease.  Growing up in the 1980’s the only resource around was the local library and since there wasn’t much written about Crohn’s there wasn’t much to read.

Over time, decades would pass.  During the 1990’s,  I started feeling a lot better to the point that I went off all medicines.  Since I didn’t know much about the disease, I didn’t know that this was a bad idea, and I didn’t see any point in learning more about my disease.  I went through life ignorant of what I had.

With the coming of a new century, my life changed.  In the 2000’s I started seeing a new GI who wanted me back on meds.  This started my downward spiral with medicine.  For some reason, I still never really felt the need to learn more about my disease or treatments.  Time would go on and living 20 years would come with me still ignorant about my disease.  I would go to some symposiums by CCFA and would read things here in there but by now I chose to just play dumb.  Why not?  I have been getting by without having to do much research.

By 2011, my life with the disease would change, and so would my goals.  My father in law who suffered with UC in his life and had a ostomy bag passed away.  This hit me because I looked up to him in my battle with IBD.  He was an inspiration in how he lived his life.  Second, I went into my biggest flare ever.  I started going through depression and felt like my life was going downhill real fast.

I started to feel useless in my battle.  After 23 years, I felt it was time.  It was time to finally find out just what I am living with.  I went online and realized just how much information was out there.  My life was about to change.  I was no longer going to be a patient, but an advocate.  I won’t go into the big details as I have talked about them a number of times already in other posts.   You know who I found online to be inspired by, who I learned from and just who could really help me.

After all is said and done, this blog now serves as my sounding board to help others.  I have gotten some really good feedback to show that what I stated out to do is working.  My main goal now is not educating myself but educating others.  I want to let other IBDers know just what options they have with their treatments, how to find a good GI and mainly just let them know that they aren’t alone with their disease.

My Facebook friends list has more IBDers than real friends.  Same for my Twitter account.  I talk to more people with UC and CD then I have ever.  Sometimes I learn some new information from them.  Sometimes I help them.  As 2012 draws to a close I look at where I have come from and how far I have traveled this year.  I went from feeling depressed, lonely and useless to being strong, confident and helping others.  I couldn’t have done it without the support of my fellow IBDers.

As for the future, I don’t know what it entails.  I want to become more active with CCFA.  I will probably work Camp Oasis this summer.  Anything else…I don’t know.  I guess we will have to wait and see.

Day 24 #NHBPM – “If I had more than 24 hours in a day…” (Or unlimited spoons or funds)


Wow…more time on my hands.  What would I do?  I know of some other people with IBD that will love this post because they are limited to what they can do at the moment because of their disease.  I however am not in that place right now.  That doesn’t mean I don’t wish I had more time in the day.

So what would I do?  Well, first I spend so much time right now working on this blog.  It takes up not just time but energy.  An extra hour would be great to help focus more on my words to get them right.  I am usually distracted because I have the TV on or the wife is wanting some household chore done or something in life is just getting in the way.  More time means…more time.

I would also like to do more volunteer work for the IBD community.  I want to help with CCFA more.  Because of transportation issues, any office is too far.  The NYC office is close but I rely on mass transit so it takes forever to get home.  New Jerseys office is just too far of a drive at this time.  I don’t want to spend the gas.  More time in the day would give me the time to spend for travel so I can help out more.

More time in the day would also mean more time with my loved ones.  I can spend more time with my wife.  There is nothing better than having more time with the person who you love.  In life we never spend enough time telling someone how much we care about them.  This extra time would help with that.

And then there is my online family.  Facebook, Twitter…I love you all but don’t have enough time and sometimes energy to write to everyone.  I wish I had an extra hour or two to connect with my IBD family to see how everyone is doing and help out where I can.

Even now, as I end this blog I wish I had more time.   But reality is 24 hours.  So let’s start the day.

Day 23 #NHBPM – Write about what it’s like to travel with your condition


Today, I take a little break from our regular broadcast.  I decided to use a bonus topic, as I am a little tired and needed a topic I don’t have to think too much about. 

Travel and IBD.  Just the word travel causes a lot of us to get our stomach tied into a knot.  Travelling with any chronic illness is not easy, but with IBD….whoa Nelly.  Just thinking about taking a vacation a million things go through my head.  So let’s take a look at some of the issues.

Bathrooms.  #1 on the list of things to worry about.  I am quickly reminded of the Humira commercial where the person is in an airport walking in circles with the bathroom right next to him.  That is my #1 worry when travelling.  Where will there be a bathroom and will it be clean.  When I fly, I worry about using the planes bathroom.  There is always a line and sometimes you can’t get out of your seat (thank you FAA rules).   I know when I travel, I get nervous so my stomach is on overtime.  Wherever I am in the airport, I have an eye out for the bathroom. 

Not everyone fly’s though.  Sometimes it is a road trip.  Lately I have been hearing more stories about people pulling over and pooping on the side of the road.  In the region I live in, there are rest stops along the interstates and thruways.  But for some areas, these don’t exist.  You have to wait until you come to an exit and then try to find a place.   The problem sometimes is we can’t wait for the next exit or rest stop.  When we have to go, we have to go.  For many with IBD we have seconds to make that decision on where to go.

Then there are cruises.   I love them and if I could take a cruise every year, I would.  Somthing about being out on the ocean.  It is so calm and peaceful.  Getting to the ship can be stressful but once you are on the ship, don’t worry.  I know many people will think..but what will happen.  Are there enough bathrooms?  What if I get sick?  First, there are bathrooms everywhere on a ship.  I have never had a problem with that.  Second, if you do get sick there is a doctor on board.   As long as you don’t have any major issues like a blockage, they should be able to help.

So how do we cope with these issues.  Well, first,  a lot of us have travel bags.  In them are toilet paper, sanitizers, extra underwear, etc.  I have talked about this in previous posts as well as other bloggers have talked about them.  These bags are life savers for many of us.  In them are another life saving item that we use…Immodium.  When you are going 10 times a day normally and then more from nerves of travelling…Immodium can help us cope.

I know to some of you this seems really sad and you are probably wondering why we even bother to travel.  I can tell you from experience…it is all worth it.  We might have to use a bathroom more and have a little more anxiety, but overall we want the experience of travelling.  We want our vacations.  I remember this past summer I went to the Dominican Republic.  So much of the trip scared me.  I didn’t know what to expect once we got there.  Would I be able to find a decent bathroom?  Will it be clean in such an unclean place?  Would the food and water affect me?  So much worry.  But once I got there I tried to take in the scenery and just relax.   In the end I had no major issues and all the worry was in my head.

So for anyone with IBD….I say try to relax.  Yes we have issues, but it is nothing we haven’t experienced already and we all know we will get through it.  When you travel, try to focus on the good things and the fun you will have.  Everything will fall into place.

Day 22 #NHBPM – What Am I Thankful For?


Today is Thanksgiving in the United States.  It is a time when the Pilgrims came together peacefully with the indians in the area and had a feast for the fall harvest.  Over time, it has become a holiday where we look back at our lives and give thanks to the things we have.

So what am I thankful for this year?  There is so much to give thanks to.  I can give thanks to my doctor.  With so many unsympathetic doctors out there that don’t care about their patients, mine took the time to listen to me, do reasearch on his own time and put his trust in my hands to let me try a different course of treatment for my Crohn’s.  So far it is working so thank you Dr. Potack.

I want to give thanks to my wife.  She has stuck by my side through the good days and the bad.  Through flares and scopes.  When I was sick and depressed she was there to tell me everything will be alright and to offer advice.  She supports my choice to go gluten free which was a life saver.  Thank you Heather.

I want to thank my dog.  She is a stubborn dog that likes to bark at the slightest noise in the building hallways.  But she is quick with her hello’s when I come home and is there to cuddle me when I am sad.  She gives me unconditional love when  I need it most and never asks for anything in return.  She knows when I need to be cheered up and will try to play with me.  I couldn’t ask for a more beautiful soul.  Thank you Sable.

This year I embarked on a new journey and started talking publicly about my disease.  Out of a bad flare came a new life.  I have started this blog and have met a lot of great people.  I have become more involved in helping others with IBD.  But without the help of others, I would never had taken the first step.  I have thanked many of these people before, both privately and publicly, but today is special so I will do it again…because without their support and help, I wouldn’t be doing what I do.  Thank you (in no particular order):

Kelly – www.sickgirldiary.com 

Sara – www.inflamed-and-untamed.com

Alyssa – www.loveformutantguts.wordpress.com

Stephen – http://sdempster.com/ (The Road Less Traveled)

Jackie – www.bloodpooptears.com

Amanda – www.stopthinkingstartwriting.blogspot.com

Adam – www.IhaveUC.com

Jason – www.crohnsdiseasesn.com

This is just some  of the great inspiration I have had this year.  There are so many more people to thank that I don’t have the space to thank them all.  So my biggest thank is to the IBD community.  You have all opened up your heart to me and gave me so much love and inspiration.  No one will ever really understand what it meant to me.

Day 21 #NHBPM – Mental Health


Yes I have Crohn’s Disease.  Yes it is a physical ailment.  That doesn’t mean it doesn’t affect our minds though.  When people hear the words mental health, many will think of diseases like schizophrenia.  However, just because we have a problem with our gut, doesn’t mean we can’t also have a problem with our mind and need some mental help.

Within my first year of being diagnosed with Crohn’s Disease, I was seeing a shrink.  I was only 16 and it was not my choice to see one.  My doctor wanted me to see him because he felt that I should be able to go to school and the reason I wasn’t going was mental.  (Nice GI dr I had).

 

Over time I have dealt with a number of issues with my disease one of which is depression.  Many people with IBD will experience depression at least once in their life, some will experience it many times.  I myself have had numerous bouts with it, the last time being the beginning of 2012.  I was so fed up with my disease and didn’t want to go on anymore.  I was spending all day in the bathroom, in constant pain, and had to sight of relief.

My problems were real, but I would soon learn that what I was going through was nothing compared to others.  What about all the people with IBD that have to have surgery for a resection or worse, have part of their intestines removed.  I can’t even start to imagine what goes through someone’s mind when they are told they will have to have an ostomy bag for the rest of their life.

Mental health is overlooked when it comes to IBD but in fact, from experience, it goes hand in hand with our psychical disease.  The problem is many GI’s are not educated on how to help.  Psychologists and psychiatrists get a bad rap, but we need to put our hands in theirs.  We must seek them out and learn to use them as much as we use a GI doctor.

There is no shame it seeing a shrink.  Just because you go to one doesn’t make you bad.  All it means is that you need some help sorting out your feelings.  And really, if it helps us feel better, isn’t it worth it.

Day 20 #NHBPM – Write about alternative treatments / regimens / medicine.


This post will have a double meaning to it.  It will serve as my post for National Health Blog Post Month and it will server as an update on my treatment.  If you follow me, then you know what I am about to write about.

I want to talk a little about an alternative drug treatment for Crohn’s Disease that is growing in popularity.  Now, it isn’t  a supplement that is over the counter or some herbs.  It is a prescriptive medicine but I say it is alternative because currently, it is not an approved treatment for IBD.  I am talking about Low Dose Naltrexone or LDN.

Over the years I have tried every type of medicine for my Crohns.  It started with the sulphur drug Azulfidine and has ended with the biologic Humira.  I have done Prednisone, Dipentum, Azacol, Remicade, Cortiform, Lialda and possible some others that I can’t remember.  None of these meds helped me and in fact I usually got sicker on them and developed other issues.  With Humira I developed a bad case of psoriasis.  After 24 years of traditional therapy, I was open to something new.

Naltrexone has been around for years.  It is mainly used to help drug addicts get off drugs.  It works by blocking the euphoric feelings from opiates.  It was found that it can be used in a small dose, 4.5 mg compared to 50 mg, and still work.  During a study on the drug it was found that by blocking these receptors, it was helping in the body fight off inflammation and heal itself.  So a person can take Naltrexone in a low dose, not get major side effects and have it heal their IBD.

The downside to Naltrexone is that it is an old drug.  It has been around for many years.  This has made the drug very inexpensive.  Because there is no money to be made on the drug, why would the pharmaceutical companies spend millions to research it?  For a month’s supply I pay $15.  I don’t even put it through my insurance. 

So how well does it work you ask.  Well, to start, the beginning is rough.  There are some side effects in the beginning so beware.  For the first 2-3 weeks, you will have insomnia.  The drug works by kicking in your endorphins at night, around 3 in the morning.  It will keep you up when this happens.  You will also have very vivid dreams that seem extremely real.  Don’t worry..this will all pass.  Eventually your body gets used to the endorphin rush and you will sleep.  In fact, Naltrexone helps with producing serotonin so it helps you to sleep better.

As for my use, I have been on LDN for about 2 months now.  Overall I feel great.  I can finally say that I am no longer in a flare, which started in early 2011.  I was having a real rough time and even though going gluten-free helped, it never fully took me out of the flare.  Now, I am feeling normal again.  I go to the bathroom around 3-4 times a day…something I haven’t done in many years.  My best day would be 8-10 times a day.  I have no gut pain, no joint pains, no eye problems.  My psoriasis from Humira is healing and going away.  I am starting to feel like a normal person again. 

On Monday, I saw my GI.  As I have mentioned in the past, I am his first patient to use LDN.  It is an experiment for both of us.  He seemed very happy that I was doing so well.   I am happy that I am well, but I am really happy because if I do real good on it, he might decide to use it as a therapy for other patients.  This really makes me happy because not only does it open up a lot of doors for people who are in my situation, but the fact that I would be able to change a doctor’s mind on treatment options.  I have always liked my GI as I felt he listened well and was open to new ideas.  I wish other doctors would follow his lead.

Day19 #NHBPM – Life & Death


 

I think everyone thinks about their life and how they live.  When you’re a kid you are carefree.  You run around playing all the time thinking you are immortal and nothing can hurt you.  As you get older, you learn to appreciate life and when  you have  a family you get insurance.

Growing up with IBD really makes you appreciate life even more.  When all your friends are in school or outside playing, a lot of times we are in bed with pain.  When kids get together to have  a pizza party we are sipping tasteless broth.  We look at ourselves in a mirror and ask why.  Why can’t I have a normal life..and we start to really appreciate what we do have.  After awhile we learn that even though we are sick, we are alive.   After you have lived some years with the disease, you see that you can live and start to want to do things.  We have all been there.  We look at what we haven’t done and think, what can I do to enjoy life.  Maybe it is taking up jogging since you can stay local and near bathrooms.  For others, maybe it is skydiving for charity.  But we learn that just because we have a disease, it doesn’t have to end our lives.

Over time we learn to live with our pains and drug side effects.  We know there will be hospital visits and stays in our life.  We know there are days we won’t get out of bed…or the bathroom.  But we also know we have a life to live and we try to live it to it fullest capacity.

When I was 15, I got sick and was in bed for a week.  After I got diagnosed, I went back to school and tried to live a normal life.  Within half a year, I got pneumonia and that put me in a horrible flare.  I stopped going to school.  I never saw my friends.  My life was staying in bed watching TV (this is before cable).  It was watching certain shows that made me realize I was wasting my life.    I found a new hobby while I was sick.   I started to love cooking and I was watching a number of cooking and food shows.  I then started to realize that if I stayed in bed I would never amount to anything.

So, my parents got me some teachers that would come to my home to teach me.  I caught up on my schoolwork and eventually graduated.  I wanted to live life again so I decided to chance it and go away to college.  I wanted the full experience and yes, I did get it.  I decided that I wasn’t going to let my Crohn’s run my life.  I got my education and degrees.  I met some great people and eventually also me my wife.

Over the years I would have some Crohn’s related issues, but I would always think back to my bed ridden days and vow to continue living life.  I would not ever let my disease get to me.

And then my life changed.  My father in law lived with Ulcerative Colitis for years.  He had it so bad that he had to have his intestines removed and lived with an ostomy for a number of years.  I saw life in him.  He had numerous problems because of the bag but he always chose to fight on and live.  And then his and my world crashed.  He was in and out of the hospital with an unknown problem.  Eventually it affected his heart too much and he passed away from a heart attack.  His ostomy caused him to have electrolyte problems which eventually caused a lot of problems for him.

I say my world crashed because he was an inspiration to me.  He always tried to stay positive with his situation and I could only wish to be half a man if I was ever in his situation.  During his funeral, his friends would talk about how he was always full of life and had such a drive.

Part of me never grieved for him.  I never had the chance.  My wife and mother in law were devastated and I had to stay strong for them.  I was hurting on the inside but could never show it.  As the days went on, it was harder to show my feeling.  Here it is a year and half later and I still have the pain.  It still is deep in me and I don’t know how to release it.   Not only do I hurt because I lost a great father in law, but I hurt to know that one day I can be in that same situation.

Medicine has not helped me over the past 24 years.  I am on the last medicine available and even this is experimental for Crohn’s. I know I have a mild case but if I fail on meds and have to eventually go off all meds, my Crohn’s will get worse.  Where will that lead me.  Will I need surgery?  Will I have to have my colon removed?  Will I be like my father in law and end up with tons of problems?

No one likes facing their mortality.  As I kid I did a lot of dumb things.  Now, with my 40th birthday creeping up to me, I look to what I have left in my life.  I know that I won’t live forever.  My question is how will I live it though.  Will I spend each day thinking will this be the day my medicine stops working?  Or will I live it like it is my last and have a blast.  Right now I take it one day at a time.  I try to enjoy the time I have here.  I do what I can and try to help who I can in the moment.  If I am here tomorrow, then I will continue on.  But unlike when I was 6, I know I have an expiration date.  Hopefully, it won’t be for another 50 years as I still have a lot to do with my life.