Health Activist Writer’s Month Challange – Day 2 Introductions


 

 Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?

Hello.  My name is Jeffrey and I am a Crohnie.  Well, that is how I would imagine an introduction would go in an anonymous IBD support group.  Of course, an intro like that kind of has a negative stigmatism to it because it reminds us of intro’s used in AA which, even though it is a good group, you go there because of an addiction.

Well, having IBD is kind of like an addiction.  It is something always on our minds.  We take drugs to forget the pain we are in.  And no matter how much we want to forget about it, we seek out others who have the same so we can relate and fit in.  But, IBD is NOT bad. 

That is #1.  IBD is not something we can control and it is not contagious.   IBD is an auto-immune disease and we have no control over it.  Like many addictions, IBD is condition that happens and we have no control on how it will act.  We can try to manipulate it with medicine, exercise and diet but it will ultimately act however it wants.  It is the body attacking itself so there is nothing that will spread to someone else when you cough, sneeze or bleed.  You can’t give it to someone else.  It is a genetic disorder that needs a lot more understanding.

#2 – People with IBD at times are in a lot of pain.  There are different types of disease under the IBD umbrella.  They all act differently and there are different severities to them.  But over time,  anyone with IBD will experience pain.  The worst thing about this is that the casual observer may not know this as you can’t tell just by looking at someone.   People with IBD get good at hiding their pain so you might not know just how much pain they are experiencing.  But know, it is there.

#3 – A lot of people with IBD feel alone. They don’t know anyone else with the disease and because it isn’t a well-known disease, no one understands what they are going through.   This lead me to my activism.  I grew up alone and in the dark with my Crohn’s.  There was no internet.  It was hard to find information about IBD, let alone meet people who had it.  Now with our global community, I have taken to the web to let as many people with IBD know that You Are Not Alone.  Within the past year I have learned so much about my disease and met so many great people.  This is the main reason I do what I do.  I don’t want anyone to grow up in the dark.  Whether you are 8 or 68, you are not alone with your disease.

#4 – IBD is not a death sentence.  Many people with IBD feel like their life is over.  For some that spend months at a time in a hospital, living a normal life seems impossible.  For some, they have to live with a stoma and feel like they can’t live like that.  From what I have seen and learned this past year, you can live a great life.  IBD does not kill.  I know I can get into a debate over this because IBD can cause other problems, which in turn can kill a person….but IBD alone will not end your life.  You will survive.   I recall words from a fellow activist who is currently struggling herself “You are strong, you can do this.  You are a fighter”.   IBD can and will cause depression but just know that you will live and get on with your life.  Try not to focus on the past and all the problems.  Instead try to look at what you want to do with your life and try to make it happen.  Baby steps.  Don’t try it all at once.  But you will find that if you make the attempt, you just might succeed.  The more you focus on the good, the less you will think about the bad.

#5 – IT IS NOT YOUR FAULT!!!!  I think everyone with IBD at one point in their life looks in a mirror and asks why me.  They try to look at what they did in their life to bring on their disease.  Was it something you ate, or a procedure that you went through.  As I have stated before, this is a genetic disease.  You did nothing but be born with a gene.  Nothing you did brought on the IBD.   It just chose to rear its ugly head when it did.  I have learned that instead of asking the Why Me question, I know ask, what can I do to calm the beast.

IBD really is a bitch of a disease.  It is still largely unknown to the general public and a lot more research is needed.  We need to bring more awareness to this disease.  I speak up now to help educate others.  If you meet someone with IBD, don’t be scared of them.  Don’t ask how they are because odds are they won’t tell the truth.  Deep down, they are probably hurting.  Instead, give them a hug and be there for them.  Listen to their words. No matter the age of the person, I think we are all still a scared little kid just wanting some comfort and to know that everything is alright.

Day 30 #NHBPM – What a Journey


Here it is.  The last day of National Health Blog Post Month.  It also means the end of another month.  Seems like just yesterday I was sitting here thinking about what to write for my first post and wondering how I was going to do 30 in 30 days.

Looking back over the month I see I have come a long way.  I used to post about once a week and sometimes less than that.  I would look at my screen and not really know what to write.  It was definitely nice to have the topics given to us for the month so I didn’t have to worry about thinking about what topic to write about.

This past month has really opened my eyes.  I have read a number of stories on other blogs and have gotten to know some fellow IBDers a little better.  I also got to meet online some new people who really have some amazing stories.  One of them, Sarah, did an interview for me which was posted 2 days ago.  Sarah has come a long way in her journey and hopefully her little trip down the road will be easier now that she has our community behind her.

Speaking of journeys, I am thinking about the posts that were written about travelling with IBD.  I touched on the subject in 2 posts and actually had a lot of people without IBD reading them.  One response I got from my post on travelling was from someone with IBD and how on his bike ride through Spain he mentioned how he had to constantly stop on the side of the road.  I have heard so many of these stories lately that it has inspired me to start to help make a change in the USA. (See yesterdays post).

Not everything was happy with the posts.  I think about how open I became with my feelings.  I let out how I am still torn up inside over the loss of my father in law.  Writing about it helped me to realize that we all carry burdens with us, even when we aren’t thinking we are.   Accepting these burdens and acknowledging them help make us stronger in the end and it helps me to be a better activist.

Being an activist.  Something I never thought I would be.  In the past year though I have had the urge to help others.  My letter to new care takers is something I wish every new parent of a child with IBD would read.  It came from the heart and experience.  I was in such a dark place and no one knew it.  I had so much going on in my head that I didn’t want to share with anyone.  Now, I put it all down here for everyone to see and it truly makes me feel better.

Living stress free and free of burdens is something we all need to strive to do.  We all need to find an outlet to release our stress and my dog definitely helps.  Little Sable is such a great dog.  I don’t know how I ever lived without one before.  She can’t take away the burdens but she makes the stress just melt away.

And all of this brings me back to the first post of this series  -  Why I write about my health.  I write to relive my burdens.  I write so I can see my problems on paper and it makes it easier to tackle them.  I write to tell my story.  But most important, I write because of you.  I write for anyone that reads these post and realizes that they are not alone.

Thank you, whoever you are, for reading and possibly sharing these posts.  I hope I have eased your mind of your problems and taken some of your burdens.  I have come a long way in 30 days and have shared so much.  In 31 days, we have a new year.  Hopefully, we can lean on each other more for support and really bring our community together.  I look forward to the day when we can come together in a large crowd, stand tall, raise our hands in the air and say ” I have IBD and I am proud of it”.

Now that the month is done, I will probably take a small break from writing.  Holidays are coming and work is busy.  Life doesn’t stop though regardless of the times and if something pops into my head, you know I will be back here.  I look forward to the upcoming year and the challenges that it brings.

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 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 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.

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