Tag Archives: Colitis

Decency, IBD, and Blogs….What should be allowed?


So yet another blog inspired by a fellow blogger. This one is about someone that is in the hospital at the moment. She is having a tough time and is on pain meds. This is causing her to no be completely “with it”. In her haze she posted a blog with pictures. Of course, this is showing the dark side of the disease. She has been requested to remove the blog by some loved ones and she doesn’t know what to do.

This brings me to my topic…what is considered decent enough to blog about? IBD has big ups and downs. When the downs hit, they usually hit hard and for many people there are more downs than ups. Some people spend a lot of time in hospitals on pain meds. This is a fact and a way of life for so many people. It can’t be avoided. I have seen so many people talk about how bad they are doing and wondering if they should go to the ER. Whether they are having stricture problems, fistules, abcesses, gallbladder problems, overall pain or a number of other issues it always comes down to “am I sick enough to go to the ER?”.

Now for some of them, they are avid bloggers. If they are spending a lot of time in the hospital, should they just stop writing because they aren’t home? Should blogging just be done when your having a good day? The point of blogging is to get things off your chest and let others know out there that they aren’t alone and inform them of what the disease is all about. That includes hospital stays.

In my opinion, I don’t see anything wrong with blogging from a hospital bed. If you want to take pictures of your ragged self in a gown, then that is fine. It is your choice. If you want to make a video and the hospital allows it, more power to you. People have a choice to veiw these or not. A lot of people like to post pictures of their surgeries and their scars. This could be graphic and again, as long as you post a warning to your blog, and you are ok with showing them..then do it.

What people need to understand is that IBD is an ugly disease. There are a lot of problems that arise from it. If we were to just blog about the good days, there would hardly be anything to blog about. Luckily I haven’t had any really bad days since I started blogging but rest assure, if I do, it won’t stop me.

Plagiarism on the internet


Earlier today I saw my online friend Sara from Inflamed and Untamed complaining.  Now if anyone of you have seen her videos or read her blogs, you know she is a kind-hearted person.   For her to be pissed off, something bad had to have happened.  Sure enough, she was writing how someone stole her story and put it for themselves.  The worst thing is that this time (yes I said this time) it was a guy stealing the info.

Over the past month or so, Sara has been talking about how people are selling her bracelets as their own and using parts of her blog as their own also.  They give no credit to Sara and they are passing their work off as their own.   Today I think was the last straw when it was a guy doing it.  He took her “about me” section of her blog and posted it on his site to make it look like his.

My first question is Why?  Why would you want to steal someones elses bio to make it look like your own.  I don’t get it.  Also, why would you want to steal any of the blog?  If you are choosing to create a blog online and open yourself up to others…then do it.  Give out your own details.

Now when I sit down to write my blogs, I never look at someone else’s first.  I just log on and write what is on my mind.  Blogging is like a journal only everyone in the world can see it.  What I write comes from my heart and mind.  I refuse to use someone else’s words.  What would be the point.  Also, I want to point out that blogging is a choice.  No one is forced to write a blog.  It is a conscious choice one makes.  so why steal someone else’s words.  I don’t get it.

My second question, and this is directed to anyone plagiarizing, Who the hell do you think you are?  Where do you get off stealing someone else’s thoughts and words.  Sara is very popular in the IBD community.  Did you think no one would notice that you are stealing her words?

Now I am still small potatoes.  Not many people are reading this right now, so I don’t worry about plagiarism.  But one day I want to be as big and popular as Sara.  And when I am that big, I hope no one chooses to steal my work.  I, like every blogger out there, have chosen to open our hearts to the world.   They are our thoughts.

Now, there is a way to copy-write your work online.  Sara has recently done that, but from what she told me, it only covers her blog, not her bio.    To me this is just wrong.  It should be that if you get a copy write, it should be for all information not just some.  In real life, if you steal someones name and information and use it elsewhere, you can go to jail.  It is illegal.  But if you go online and do the same, apparently it is ok.  There is something wrong with that.

I hope anyone that reads this will agree with me but please do not repost this as your own work.  You may share the blog, but do not pass this work off as your own.  I am from NY originally.   We don’t take kindly to theft.  Also, I truly believe in the words of David Banner…”Don’t make me angry.  You won’t like me when I’m angry”.

And Sara, if you are reading this…I know I joked about it on Facebook, but I hopefully didn’t steal any of your work.  🙂

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.

IBD and Sensitivity


Over the weekend my eyes were opened to just how insensitive people can be, especially to someone with IBD.   Most names will be left out so as not to totally offend the parties involved in the incident.

Many of you might read Crohn’s Advocate and recently read an article in there about Mike McCready who is the lead guitarist for Pearl Jam.  The article talks about his struggles with Crohn’s Disease and how he turned it into a positive experience.   I found this article to be great and I found a new respect for him and Pearl Jam.   So, on Friday night, while on Facebook, I saw a link from The Great Bowel Movement directing everyone to Like a comment made by another activist to a radio DJ in Chicago.  Turns out this DJ made a comment (I believe on air) about how Mike McCready should have stayed silent about his disease and referenced the article on their Facebook page.

Well, that was enough to set me off.  Attack a fellow IBDer from one of my favorite bands of all time.  Gloves were off.   The original activist that heard the comment was heading out and couldn’t continue to fight this battle, so I picked up the baton and ran like the wind.   I must have posted in 10 different groups on Facebook with a link and description of what happened.  I then went to Twitter and Tumblr and again posted.  I also Twitted Mike himself to let him know what happened.  I don’t know if he read the Tweet.

As of 7:30 pm on Saturday there are 91 comments on the Facebook page from many IBDers.  Everyone was attacking the DJ.  Eventually the DJ tried to apologize, but he compared what we go through with his withdrawal from drugs.  Needless to say that drew more irate comments.

I truly couldn’t believe how many people flocked to Mike’s defense.  It brought tears to my eyes that I could not only rally so many people to help out Mike but that so many people could be so open about their disease.

People…Crohn’s and Colitis is a serious disease.  It isn’t just a stomach flu or some slight tummy ache.  There is a lot going on within the body with these diseases.  When will people realize that they are serious diseases.  If your going to talk about any disease, joking or not, make sure you know about it.  Don’t be ignorant.

Mike McCready…if you are reading this (I know your not but I can dream), you have a community behind you.  You have done so much for us and we have your back.  Thank you for all that you have done, all the money you have raised, and blessing us with your sweet sound that your fingers make.  Keep up the great work and help stamp out not only IBD but stupidity and insensitivity.

Who runs our medical community?


As someone with Crohn’s Disease, I use a lot of medicine over the course of the year.  Whether it is medicine for my Crohn’s, supplements, other ailments (thanks to CD), or just routine medicine, I spend a lot of money.  Recently, I received a letter in the mail from my prescription insurance saying that I am only allowed to get 90 days worth of a med from a pharmacy and then I have to use their mail order service.

Ok, so let me get this straight.  Instead of being able to go to my local pharmacy of my choice to get a med that I might need right away, I now have to use a service run by an insurance company and wait days to get it in the mail.  REALLY????

I need to say first that this is my own opinion.  I am not speaking on behalf of anyone but myself.

So, when did corporate America start running our healthcare system.  I know it has been going on for a long time..but come on.  Not only can you not see any doctor you want, but now I can’t use any pharmacy I want.  It was bad when HMO’s came around and all of a sudden they started telling you which doctors you can see and not see.  You want to see an allergists?  Well, first go to your general practitioner, have them look at you and then get a referral.   And you can’t just see anyone. No he has to be in our network.  Oh the closest doctor in our network is 30 miles away…we don’t care.  Now they are doing the same with our medicine.

The best was when I needed to get approval to take Humira.  My insurance wouldn’t cover it.  They wanted me to take Methotrexate first.  So an insurance company that doesn’t know me or my history is telling me what medicines to take.  I think not.  And now they are telling me where to get my meds.

What really gets me is what happens when you don’t have any insurance.  Well, then you are screwed.  If you can’t afford insurance, then the drug companies assume you can’t afford the medicine so you’re not getting it.  The same with doctors.  No insurance…we then you can’t afford to see me so I can’t see you anymore.

What happened to the days of house calls.  What happened to “I’ll take whatever you can afford”.  When did doctors stop caring?

Now I know a lot of doctors will be mad at me for writing this..but I don’t care.  I hate that it takes weeks to find a doctor.  I hate that they all work 9-5 Monday thru Friday.  I hate that I have a chronic illness and it is so hard to get treated for it.  I live in a very big metropolis area.  If I find it hard…what do people in small towns do?

We need to start listening to and caring about our sick a lot more. We need to tell corporations…get out of our medical community.

Thank you CCFA for the exercise.


On Sunday, June 4th, I took part in the Take Steps for Crohn’s and Colitis organized by The Crohn’s and Colitis Foundation of America.   It was held in Liberty State Park in Jersey City, New Jersey.  I never realized just how historic this park was until I got there.  There boats for tours to Ellis Island and the Statue of Liberty leave from here.  What makes them historic is that immigrants used to come here and catch a train to either New York or further into New Jersey.

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When we arrived, it was raining a little, but not too much.  By the time I reached the check in tent, it had stopped.  My wife and I checked in and then walked the grounds waiting for the start of the walk.  I had brought my dog along because she likes walking and could use the exercise.  While my wife rested, my dog wanted to start and ran around.

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At 5:00 they called everyone to the start line and we were off.  Now, I knew ahead of time that the walk was 3 miles and in the past I would have had no problem with that.  I didn’t realize just how far it is until I started walking.  We walked 1.5 miles one way, turned around, and walked back.  At the 1 mile mark, my legs were starting to feel the burn.  My little dog seemed to be holding up better than me. 

During the walk, the sun was shining and it was beautiful.  On the way back though, the sky got dark and the rain came.  My wife was smart and had an umbrella but I forgot mine.  I had a poncho in my backpack, but was too tired to take it out.  As we reached the base camp, the rain stopped and we were greeted by a great site.

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Overall, I had a good time.  My legs were aching later that night and I was beat.  My dog looked beat also and slepted real well.  CCFA does this walk all over the country.  This year was my first walk and I raised $506.  I was worried I wouldn’t raise any so this amount shocked me.  I plan on doing this again next year and hopefully I will be in better shape.  The best part of the walk was seeing all the support for us sufferers of IBD.  One group raised over $27,000.  The love is out there for us.  YEAH.

IBD and Relationships


I have seen a lot of questions and discussions about this topic.  Crohn’s Disease is such a private and sometimes gross disease.  Many people ask “When in a relationship should I tell my partner that I have Crohn’s?”  On top of this, I hear “How do I tell my partner I don’t feel sexy/want to have sex?”  For women, in my opinion, this is easier to deal with then men.

First let’s tackle the first question.  A lot of people feel ashamed about having IBD.  Whether it is Colitis or Crohn’s, a lot of people don’t want to talk about it for feel that people will look at them differently.  When it comes to dating, this is a real big issue.  I know women don’t want a guy to know because they don’t want to disgust them or turn them off.  When you first start dating, for a woman, they want to feel and look sexy.  But what about a guys view?  What does it say to a women when a guy has to go to the bathroom 5 times during a date.  The first thought might be, “He’s doing drugs”.  Another thought is, “Maybe he doesn’t like me and is calling another woman”.   Truth is guys have the same thoughts and feelings as women.  We want to look good also.  We want to feel strong in a woman’s presence.  Most guys want to be able to take control and treat a woman right.  We can’t do that if we are in pain or running to the bathroom.  We can’t do it if we are constantly feeling sick.

So I say, as far as telling that new person, tell them right away.  It is a lot to deal with, but a lot of times IBD will run our love life so let them get used to it.  I wouldn’t tell them when I first meet the person, but talk to them on the first date.  Let them know that if you have to run to the bathroom..it isn’t their fault.  Let the other person know you want to be there to talk to them but you have to leave for a brief moment.  If your a guy and your want to look strong, then telling the truth is being strong.  Opening up to a women is being strong.  Honesty is the best policy.  It will help strengthen the relationship.

Now, if the other person gets scared at this and runs..well then it really wasn’t meant to be.  You should know if the other person can handle your disease right away.  Now I don’t think you have to tell your whole life story with the disease on the first date.  Just let your partner know what they can expect.  You can go into details another time.

Now, later on in the relationship (or marriage) IBD and sex will come up.  There will be times you won’t want to have sex because of the symptoms.  Again…be open and honest.  If your having sex, then you should be in a place in the relationship where your partner knows your disease and can understand it a little.  Let your partner know, it isn’t their fault that you don’t want to have sex.  For a guy this is rough since we are made to look like sex addicts…like we want sex 24/7/365.  Truth is, there are plenty of times we don’t want to have sex.  There are times our arse hurts and is sore.  We might be sick to our stomach.  We might have joint pains.  None of this is going to make us want sex.  And these symptoms can last for days and weeks.  That is why I say be open and honest with your partner.  If you aren’t having sex for weeks, and you don’t talk about, your partner may wonder what is wrong.  They may feel like you aren’t attracted to them anymore or worse…is having an affair.  Let your know partner know it isn’t them.

So, overall..be open and honest.  Don’t be ashamed of your disease.  You are going to have it the rest of your life.  Let your partner into your life and let them know that they are in the relationship with both you and your disease.  I have found that overall, if the person can’t handle it…they aren’t worth being with anyways.

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.

A Man With Crohn’s


When I hear the word manly or macho, I tend to think of a guy, muscular, wearing a sports jersey, sitting on a couch surrounded by friends, chips and dip on the coffee table, watching football.  I probably got this image thanks to numerous commercials depicting this.  Some people may have a different image.  Some tend to think of a tall lumberjack in plaid.  Some may think of a fireman running through flames or a cop rescuing someone.  Still others may think of a soldier in uniform fighting for his country, saving innocent people caught up in a crossfire.  My point to this is no one thinks of a guy laying in bed double over in pain who has to jump out of bed to run to the bathroom.  Then on his return trip to the bed, picks up a garbage can to vomit.

Sadly, that is what a lot of us go through with Crohn’s Disease.  Growing up in the 80’s I was what we would now call a nerd.  I was into video games, Dungeons & Dragons, playing with GI Joe figures and spend my Friday nights at Boy Scout meetings.  I would watch some sports (Go Yankees).  I never liked alcohol.  I also was not a ladies man.  I was never macho..but I was still a guy and acted as one.  When I was 15 I got sick with Crohn’s and it would forever change me. 

For about 2 weeks I was so sick I would stay in bed all the time.  I lost a lot of weight and eventually ended up in the hospital where I got diagnosed.  I was put on Azulfadine and eventually got better.  When I was 16, I came down with pneumonia and this caused me to flare.  I would not recover and missed my junior and senior year of High School.  I was growing up, starting to form the person I would be and this was all taken away from me.  I would spend my days in bed watching TV.  I also started to learn to cook and do laundry since I was home and had nothing better to do.  Let me tell you…this does not make you feel manly or macho. 

Flash forward 23 years.  I am now a grown adult still battling with Crohn’s.  I have found my way in the world.  I met the woman of my dreams.  I do feel like a man now.  I still love my Yankees and try to go to some games every year.  I still cook, but that has become a man’s job now (Bobby Flay, Emerel Lagasse, Guy Fiere, Mario Batalli just to name some).  I like beer (miss my Sam Adams now that I am gluten-free).

But I still have my pains.  I still run to the bathroom.  What my point is, as a guy, we can’t worry about image.  We don’t have that luxury.  Guys…you can feel weak.  At times you will get depressed.  You will have pain.  You will have a fever.  For some of us, we will spend time in a hospital unable to control anything.  None of this make you less of a man or a person.  Do not let social media tell you how you should be.  You are a man no matter what.  You are strong and can get through anything.  If anyone tells you otherwise, then they aren’t worth your time.

It is not week to break down and cry sometimes.  It is not weak to have pain and suffer from depression.  It is human.  We all go through it.  You are not alone.  You are still a man…no matter what.