Upcoming Blogs


Just a quick update.  I am looking to start writing again and I would love to change my format a little.  I want to get you, my viewers, more involved.  So, here is what I want to do.  I am going to list some things I will be writing about soon and I would love for you to let me know if you have any experience or stories you want to share.  You can email me at aguywithcrohns@gmail.com.  It can be a couple of sentences or a couple of paragraphs.  I will respond to you and if I choose to publish what you wrote, I will get your approval first.  I would never publish anything without permission.

So what will I be talking about.  Well, if you have anything to say about the following, let me know:

IBD and arthritis

IBD and weight loss or gain

IBD and depression

Starting a new job with IBD

For now, that is all I have in the works, but of course, if you have an topics you would like me to talk about, let me know.  I look forward to hearing from everyone with their stories and ideas.  Can’t wait to see what we can all transform this blog into.

Barney

 

Crohn’s Disease and Depression (Repost)


Since this is Mental Health Awareness Month I thought I would repost my thoughts on depression.  This was one of my first post I wrote when I was still using Tumblr.  I then reposted it here last year so in a sense, this is the 3rd time, but for many of you this might be the first time you see it.  I just want to add that I always say with IBD you are never alone…and that really goes with depression also.  If you are feeling depressed, please talk it out with someone.

 

It is coming up on the year mark on when I started to embrace that I have Crohn’s Disease and with it comes depression.  Depression is a big part of the disease and not something that is regularly talked about.  I never had a doctor tell me that this would be one of the side effects of Crohn’s.  It was something I have had to find out for myself and learn to deal with on my own.

Everyone diagnosed with either Crohn’s Disease or Colitis will go through some sort of depression at least once in their life time.  Anyone with the disease will probably back me up on this and can easily recall their first time experiencing it.  For most of us, it is when the doctor comes into the room and informs us of his diagnosis.  If anyone is like me, our first reaction is …”What?  What the H*LL is Crohn’s Disease (or Ulcerative Colitis)”.  After we are given the breakdown of what it is and find out it is incurable, that is when that sad feeling usually will hit.  Then we are told how we will be on meds all our lives and if it goes like when I got diagnosed, you will be told that you will have at least one surgery within our lifetime due to the disease.  That rumbling cloud that was closing in, is now over your head and pouring.  Depression will now sink in.

Now I am not saying that you will experience a curl up into a ball, never talk to anyone again, I just want to die depression.  It could just be a “Why me?” experience that last a couple of minutes.  But, it is there and truthfully, it will never really go away.

I was never one to open up to anyone with my feelings.  I have always kept them inside and dealt with things as they came.  As a kid with CD, I went to a shrink per my doctors orders and I still couldn’t open up.  I felt, no one feels the way I do, so why bitch about it.  Certainly a shrink won’t understand what I am going through..so no way will I open up to him.  I was 15 at the time and didn’t know better.

When I was in college, my first real bout of depression set in.  I went to school in Upstate New York in the Adirondack mountains.  I remember sitting in my suite, looking out the window at the snow-capped mountains in the distance.  It was such a beautiful sight and I felt so alone.  I felt like there was this gloom hanging over me.  Here I was in the prime of my life, having fun and I felt so depressed.  Eventually it would pass and I didn’t dwell on it.  I did take notice on how I felt and vowed that if it came on again I would get help.  Of course I would ignore myself.

Over the years, depression would come and go.  Last year I would experience not one but two bouts of it and it would change my life.  A day after my birthday in May 2011, my father in law, who had Colitis passed away.  He had been having problems (from what I was told) brought on from his ostomy bag.  I would learn later on after his death that it was from his internal pouch that caused his problems.  My father in law was a strong person and never let his condition get to him.  I saw him battle with IBD for years and it gave me some sort of inner strength.  We never discussed IBD which I now regret. 

His death hit me hard, but I had to be strong for my wife and mother in law.  I couldn’t let myself break down so I never really got to grieve.  For the rest of the year I would think about him and my own struggle with CD.  Then in December I got sick.  I was taking antibiotics and Metformin (for my blood sugar).  I was in bad shape from the two.  By January I was getting worse.  I would be going to the bathroom 30 times a day and in pain.  Depression again sank in.  I was at the point that I didn’t know what to do.  Med were not helping me at all.  No one knew what to do.  I was convinced my guts had finally gave up and that they were going to have to come out.  My father in law kept coming to my mind and his struggle and I fell so deep into depression.  I am 38 and have my whole life still ahead of me.  I didn’t want to end it with more problems. 

Finally, a switch clicked in my head.  It finally hit me that I have CD.  For 23 years I never really accepted it or dealt with it.  I didn’t even know what a truly had.  So I went onto the internet.  I did a lot of research.  I looked at pictures of what an ostomy bag was (first time I ever did that).  In my research, I stumbled upon some great strong women on YouTube that gave me strength.  I found a number of social websites where I found I wasn’t alone.  I finally realized just what my purpose is and what I had to do.  I was going to advocate and educate.  I wanted to help the millions of people out there with IBD.

So, here it is May 2012.  The one year anniversary of my father in laws death in upon me.  And this time, I won’t get a deep depression.  I will get strength from it.  I know he would be proud of me for what I am doing. 

I now know that depression is normal with IBD.  We all feel it.  The trick to it, is to not let it run our lives.  We must acknowledge it and get strength from it.   Sometimes, we need to seek some professional help and that is ok.  I now know that.  Sometimes, we need to take meds for the depression, and again that is ok.  It just means you are aware that you have it, and you can grow from it.

Do let depression run your life.  If you get it, acknowledge it and seek out help.  It can be professional help. It can be the help from a friend.  It can be from online…but get help.  It is normal to feel it.  Just remember you are not alone.

The Health Activist’s Writers Month Challenge – Day 20 Burnout


What gets you OUT of the pit of despair when nothing is going your way?

 

This topic got me thinking a lot.  Well, more or reminiscing.  It wasn’t that long ago that I was at my burnout point.  January 2012.  By now if you are a regular reader you know the date.

There I was, constantly running to the bathroom, dealing with cramps, having no appetite and ready to give in.  I was sinking into depression and wanted an end to it all.  Well, not all…I didn’t want to committ suicide..but it did enter my mind.  What I wanted was to be done with my Crohn’s.  I wanted to call my dr and tell him to yank my colon out.  I had had enough.  No meds were working.  I saw no relief ahead and I had no fight left in me.

Basically, I was burned out.  Over the years I have had some depression every now and then.  There were days where I had no energy and didn’t want to get out of bed.  Everytime that brick wall hit, I would just try to keep positive thoughts and would get myself out of my funk quickly.

This time around was different.  I couldn’t think of any reason to go one.  I was dealing with too many emotions and couldn’t handle it.  I felt like a crash test dummy hitting the wall at 100 mph.  My body was giving up and so was I.

And then, as many of you know, I found myself.  I found my voice.  Basically, I found my community.  Where I saw no future for myself, I now saw warriors fighting back and saying “I won’t give up”.  I watched videos from Sara, Kelly and Maggie (you know the names by now) and they showed me that I CAN’T give in.  My life was worth so much more than my disease.

Over the past year I have been doing pretty well.  There have been some times when the diseaes brings me down and I jump back to my community.  So the answer to what gets me out of despair….is YOU.  My IBD community.  Whether it is on Twitter, a group on Facebook or some posting on a IBD website.  My fellow Crohnies (and UCers) help me recover and get my sense of worth back.

Thank You.

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.

Inspiratation – Where do you find it?


Recently, I watched a video from a fellow IBDer and she was talking about seeing other people do amazing things like running races and she was at a point in her life where she couldn’t do those things because of her fight with IBD.   I wrote her a letter to help cheer her up and as I was writing it, I realized how much of an inspiration she really had been to me.   She was one of the first people I watched on YouTube when I started flaring last year.  She showed me that even though we have a chronic illness and it can affect us greatly at times….we should still live our lives.

When I wrote her, I also came to another realization.  I have never had a mentor in my life.  Whenever I had started a new job, so one ever took me under their wing.  I never really had anyone I could say that I truly looked up to.  But, she really changed my life and I always find myself looking at what she is doing and try to be a little like her or more specifically, try to be like her in helping people with IBD.  To this end, she has kind of been like a mentor to me even though she didn’t know it.

Now, she isn’t the only one that has inspired me.  There are so many people out there and if you look back over my blog, you will see who they are.  Some of them I have written about.  Others, I have included in my “Follow Friday’s”.  There are so many great people out there advocating and giving me inspiration to get on with my life.

Recently, I have been starting to flare again and I felt some depression setting in.  As usual, I started to withdraw within myself like I used to.  But then I saw that video and wrote my online friend.  I wrote her to cheer her up but it also was very therapeutic to me.  I was able to get some things off my chest.  Realizing how much of an inspiration she was in the past, helped to inspire me again.  So, I am back fighting again. 

Next week is a big part of the battle for me.  I see my GI and I will be asking him to switch my meds from Humira to LDN.  Since this isn’t a typical treatment for Crohn’s just yet, it will be a battle, but I am ready.  If I let the depression sink in, I wouldn’t be able to have the conversation with my GI and argue it effectively.   But thanks to my inspiration..I am going in guns blazing.

So, now I ask…..who are your inspiration.  I would really love to hear back from you on who inspires you.  Whether it is just to continue your fight with IBD, or someone who pushes you to blog, or helps you to get out and about with your life.  Is your inspiration a person, a group of people, or a website? 

I want to leave you with a quote I found online about inspiration:

“Inspiration is like picking up one of those blinky things in a video game that makes you invincible for a while. You can do anything, go anywhere, and you don’t have to worry about it.

Those blinky things exist in real life too. It may be a picture, or some words, or a sound, or an idea, or a mistake, or a moment. Whatever it is, pick it up and run with it. Run with it like you stole it.

You can’t bottle up inspiration. You can’t put it in a ziplock, toss it in the freezer, and fish it out later. It’s instantly perishable if you don’t eat it while it’s fresh.

Inspiration is a magical thing, a productivity multiplier, a motivator. But it won’t wait for you. Inspiration is a now thing. If it grabs you, grab it right back and put it to work.”

 

And just incase you are reading this and trying to figure out who my inspiration is…I wasn’t going to say because I don’t like to mention people’s names on here …but it is Sara from Inflamed and Untamed.

Mood Music…What is Yours?


IBD, as with any chronic illness, can bring a person down.  Between the gut pain, joint pain, butt pain, etc. a person can get really depressed.  I know, I have been there.  So one way to get out of the funk I have found is to listen to music.  But not just any music.  It is what I call Mood Music.  This would be songs that help you relate to the world, songs that get you into a good mood.  Lately I have been listening to the same couple of songs on my computer.  I have been doing a lot of talking with fellow IBDers online and these songs keep popping into my head.  So I want to share a little of what has been getting me motivated and moving lately.  Be Warned…some of the songs are cheesy..but they help.

So here is a short list of the songs I am listening to right now and why I have chosen to listen to them.

1) Inside Job by Pearl Jam.  – This song was written by Mike McCready about his experience with Crohn’s Disease.  I love Pearl Jam but have never listened to this song before.  I never got into their late 90’s and 2000 songs.  I regret that now because this song is really good.

2) Call Me Maybe by Carly Rae Jepson – Ok, this is cheesy.  But I have been reading lately a lot about people with IBD and how hard it is to have a relationship.  This just reminds me of how hard it is just to meet someone when you are sick with a disease.

3) What Makes You Beautiful by One Direction – So many people feel ugly with Crohn’s and Colitis.  They have so much pain at times that they don’t want to beautify themselves.  Then when they look in the mirror all they see are the scars of the disease.  But everyone….EVERYONE is beautiful.  This song just is a reminder of that.

4) Beautiful by Christina Aguilera – This again plays into the previous message.  But really listen to the words.  This song is about believing you are beautiful no matter what anyone says.  This is showing your self-confidence, which all IBDers need.

5) What Doesn’t Kill You (Stronger) by Kelly Clarkson – This is just a powerful song that gets you up out of your chair and moving.  You are strong and can do anything.  These disease make us all stronger.  We live through the pain and depression.  We go through so much and that just makes us stronger.

 

So that is just a sampling of my music selection that I have been listening to lately.  I would love to hear some suggestions on what to add to that list.  I also would love to hear what other people are listening to.  Let me know.

Crohn’s Disease and Depression


It is coming up on the year mark on when I started to embrace that I have Crohn’s Disease and with it comes depression.  Depression is a big part of the disease and not something that is regularly talked about.  I never had a doctor tell me that this would be one of the side effects of Crohn’s.  It was something I have had to find out for myself and learn to deal with on my own.

Everyone diagnosed with either Crohn’s Disease or Colitis will go through some sort of depression at least once in their life time.  Anyone with the disease will probably back me up on this and can easily recall their first time experiencing it.  For most of us, it is when the doctor comes into the room and informs us of his diagnosis.  If anyone is like me, our first reaction is …”What?  What the H*LL is Crohn’s Disease (or Ulcerative Colitis)”.  After we are given the breakdown of what it is and find out it is incurable, that is when that sad feeling usually will hit.  Then we are told how we will be on meds all our lives and if it goes like when I got diagnosed, you will be told that you will have at least one surgery within our lifetime due to the disease.  That rumbling cloud that was closing in, is now over your head and pouring.  Depression will now sink in.

Now I am not saying that you will experience a curl up into a ball, never talk to anyone again, I just want to die depression.  It could just be a “Why me?” experience that last a couple of minutes.  But, it is there and truthfully, it will never really go away.

I was never one to open up to anyone with my feelings.  I have always kept them inside and dealt with things as they came.  As a kid with CD, I went to a shrink per my doctors orders and I still couldn’t open up.  I felt, no one feels the way I do, so why bitch about it.  Certainly a shrink won’t understand what I am going through..so no way will I open up to him.  I was 15 at the time and didn’t know better.

When I was in college, my first real bout of depression set in.  I went to school in Upstate New York in the Adirondack mountains.  I remember sitting in my suite, looking out the window at the snow capped mountains in the distance.  It was such a beautiful sight and I felt so alone.  I felt like there was this gloom hanging over me.  Here I was in the prime of my life, having fun and I felt so depressed.  Eventually it would pass and I didn’t dwell on it.  I did take notice on how I felt and vowed that if it came on again I would get help.  Of course I would ignore myself.

Over the years, depression would come and go.  Last year I would experience not one but two bouts of it and it would change my life.  A day after my birthday in May 2011, my father in law, who had Colitis passed away.  He had been having problems (from what I was told) brought on from his ostomy bag.  I would learn later on after his death that it was from his internal pouch that caused his problems.  My father in law was a strong person and never let his condition get to him.  I saw him battle with IBD for years and it gave me some sort of inner strength.  We never discussed IBD which I now regret. 

His death hit me hard, but I had to be strong for my wife and mother in law.  I couldn’t let myself break down so I never really got to grieve.  For the rest of the year I would think about him and my own struggle with CD.  Then in December I got sick.  I was taking antibiotics and Metformin (for my blood sugar).  I was in bad shape from the two.  By January I was getting worse.  I would be going to the bathroom 30 times a day and in pain.  Depression again sank in.  I was at the point that I didn’t know what to do.  Med were not helping me at all.  No one knew what to do.  I was convinced my guts had finally gave up and that they were going to have to come out.  My father in law kept coming to my mind and his struggle and I fell so deep into depression.  I am 38 and have my whole life still ahead of me.  I didn’t want to end it with more problems. 

Finally, a switch clicked in my head.  It finally hit me that I have CD.  For 23 years I never really accepted it or dealt with it.  I didn’t even know what a truly had.  So I went onto the internet.  I did a lot of research.  I looked at pictures of what an ostomy bag was (first time I ever did that).  In my research, I stumbled upon some great strong women on Youtube that gave me strength.  I found a number of social websites where I found I wasn’t alone.  I finally realized just what my purpose is and what I had to do.  I was going to advocate and educate.  I wanted to help the millions of people out there with IBD.

So, here it is May 2012.  The one year anniversary of my father in laws death in upon me.  And this time, I won’t get a deep depression.  I will get strength from it.  I know he would be proud of me for what I am doing. 

I now know that depression is normal with IBD.  We all feel it.  The trick to it, is to not let it run our lives.  We must acknowledge it and get strength from it.   Sometimes, we need to seek some professional help and that is ok.  I now know that.  Sometimes, we need to take meds for the depression, and again that is ok.  It just means you are aware that you have it, and you can grow from it.

Do let depression run your life.  If you get it, acknowledge it and seek out help.  It can be professional help. It can be the help from a friend.  It can be from online…but get help.  It is normal to feel it.  Just remember you are not alone.