Tag Archives: Inflamatory Bowel Disease

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.

Post 18 #NHBPM – Write about your advice for someone caring for a patient with your condition


 

Dear Sir/Madam:

This letter is to inform you that you are now caring for a patient with Crohn’s Disease.  There are a bunch of things you should know about the disease and how it will affect your life.

First, remember that the person you are taking care of has the disease, not you.  Right now they are probably scared because they have a uncurable chronic illness.  What they need most is love, affection and some sympathy.  They are in constant pain and will probably never feel “normal” again.  It is your job to help them get back to normal as best as THEY can.

Second, listen to them.  Don’t ever assume you know what they are going through or what they feel.  If they say they have pain, believe them.  Sometimes they may seem alright, but most times there is a pain within their gut.  Think about how you feel when you have a sunburn.  Well, Crohn’s is like a sunburn on the inside of the intestines and it is constantly being touched.  Ah, I see the lightbulb go on above your head…you have an idea now on what they are feeling like.

Next, don’t try to force feed them.  An appetite is a tricky thing for someone with Crohn’s.  One day they can be nauseous and not want to eat.  Other days, they will want to pig out.  Also, they are going to find that there are a bunch of foods that don’t agree with them.  If they want to try a specific diet, let them.  If they say they can’t eat a certain food…believe them.  Don’t try to make them eat something because it is healthy.  Not everything healthy is good for someone with Crohn’s.

Your patient is not going to like the medicines that they are on.  If they are taking Prednisone, they are going to get depressed.  You should know right now, they will gain weight.  Their face will swell up and this is called a “Moon Face”.  Just let them know that it is normal, they are still beautiful or handsome, and that it is temporary.  One day they will come off the steroid and their weight will come down.  Now, sometimes if they are in a constant flare, they may lose weight.  Try to give them some supplemental foods like Ensure to help maintain their weight.  Don’t ever mention how skinny they look.  They know they are losing weight and don’t want to be reminded of it.

My last advice I can give is never ever ever say they are sick.  They have a chronic disease that will be with them all their life.  They know how they feel and they want to try to look and act normal.  To them, it is something that is now part of their life.   To them, being sick is like catching a cold or a flu.  Having Crohn’s doesn’t mean your life ends..so why should they think they are sick.  Treat them as you would treat anyone else.  Play with them.  Talk with them.  Give them hugs and kisses.  Let them know that their life will move along and that they have nothing to be ashamed off.

Thank you for taking the time to read this letter.  I hope it will help you in caring for your new patient.  If you have any questions, feel free to ask me.  There is also a huge community of people with their condition online.  Turn on your computer and look for them.  They will accept you and your patient into their family with no questions asked.  You are now about to embark on a great journey.

sincerely;

Dr. Ira B. Darling

Day 17 #NHBPM – My Strengths and Weaknesses List


Today we had a choice for our post to list our strengths and weaknesses or make a playlist.  Well, if you read my blog, you will see that I have done the playlist before, so I figured I will do something new..and list my strengths and weaknesses.

Strengths:

My first strength is compassion.  It used to be a weakness but lately, I have had so much of it.  It wasn’t until I had my worst flare that I started to understand my disease.  I never truly understood it before so my compassion towards others wasn’t as strong.  Now that I have had a healthy dose of reality, I feel for everyone.  It has been my driving force behind this blog.

Determination.  When I put my mind to something, I go for it.  This blog is proof of it.  I wanted to really start to help people.  I first started with video but didn’t like it.  Instead of just stopping I decided to try writing.  I tried 2 other sites previously but didn’t like how the blog was coming out.  I could have given up again.  Instead, I kept looking for a good website to use and here I am.

Willing to Learn.  I am like a sponge.  I try to absorb as much information as I can about a subject.  In this past year alone I have learned more about my disease and treatments then I knew about it all my life.

 

Weaknesses:

Stubborn.  My wife will agree with this one.  I am a very stubborn person and sometimes this will stop me from learning things.  If I think I am right or know something, sometime it takes a while to convince me otherwise.  I am trying real hard lately not to be as stubborn.  I think it is working as it has caused me to be more empathetic towards others.

Ignorance.  I say this because for many years I kind of chose to be ignorant about my disease.  I didn’t choose to learn more over time and never chose to learn about new treatments.  Of course, this is changing also and I have decided to open my eyes more.

Lack of concentration.  This I blame on the CD because…….wait…what I was I just thinking… 🙂  Just kidding.  I say this one because sometimes I have a really good idea and try to come through on making it happen.  But then I lose sight of it and just stop focusing on it.

 

Well, I am sure there are more of both strengths and weaknesses.  I am curious if anyone notices something in me they would say is a strength of weakness.  Let me know.  I want to improve myself and would love any feedback.