It’s Survey Time


So as some of you know I am a fan of WEGO Health and what they have to offer the medical community.  Well, starting today they are holding a survey on the online Crohn’s and Ulcerative Colitis communities.  They have asked me to share the survey to make sure that they get as many patients and caregivers involved as possible.   The survey will take about 10 minutes.  Please take the time and come here to take it..

https://www.surveymonkey.com/s/G8S8FTY.

As a thank you for the survey, WEGO Health will be making a donation to a charity of my choice.

 

Thank you for helping out.

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Recipe for Success – Repost


I was looking over past post’s and I saw this one  from August 2012 and thought I had to repost it.  I also thought that since I have lost some of my way in life, that rereading this would maybe help me get back on track.

 

“Two weeks ago at my Weight Watchers meeting we were talking about recipes.  We were encouraged to bring in a recipe to swap with everyone.  When it was my leaders turn, she gave us a recipe…but not for food.  I looked it over and thought, this isn’t just relevent to food…this is good for life.  So, I decided to share the wisdom of my leader and give you…The Recipe for Success

Ingredients:

1 Cup of Vision         1 Cup Commitment         1 Cup Discipline       1 Cup Self-Control    1 Cup Sacrifice   1 Cup Conviction              1 Cup Imagination

Directions:

In a large part of your life, add 1 cup of vision.  Make up your mind which direction to go and strive for it everyday.  Add 1 cup commitment.  Commit yourself every day to reaching your goal.    Add 1 cup discipline.  Discipline yourself to do what you must to keep the committment and hold on to the vision.  Add 1 cup of self-control.  No matter what temptation comes, remember you have a choice.  Add 1 cup of sacrifice.  Be willing to give up bad habits for good habits.  Add 1 cup conviction.

Have the courage to stand your ground knowing that you are mixing the right ingredients together in your life.  Add 1 cup of imagination.  Imagine what all this cooking will achieve in the end.  Bring all of these things to a boil.  Now pour it all into the rest of your life and you have the recipe for success.  Keep it always on simmer.

As I read this in the meeting, I was no longer thinking about food.  I know she gave this to us to help us stay on course and keep up with our weight loss.  But I saw a bigger picture.  Living with a chronic illness will do that to you.  I didn’t just see food…I saw a recipe to beat an illness.  I saw a recipe for me to get through life.

I know at times life with Crohn’s or Colitis can be hard.  Sometimes we want to just throw in the towel and say I quit.  But that is when we need this recipe.  Sometimes, we need to alter a recipe and add a little more spice to it.  There are days we might need 2 cups of self-control.  Maybe we need a gallon of vision because all we see is our blanket covering our eyes.  Whatever the day…keep this recipe close at hand.  Make it your first meal.  Make it your last.  Make a big batch of it on the weekend for the whole week.  Whatever you do…make sure to make it at least once a week.”

World IBD Day 2013


HAPPY WORLD IBD DAY!!!!!!

The time has come once again for us to celebrate our disease and spread awareness.  This year I was inspired by CCFA’s poor attempt at marketing IBD.  As you know from previous posts that I was not for their Escape The Stall campaign.  I felt their campaign didn’t show just what our disease is or can do.

So, to keep this brief, I made my own video to show just what this disease is to us.  I hope you enjoy it.

 

IBD and Relationships (Repost)


In the spirit of World IBD Month and my busy schedule, I have been reposting my old posts.  Today, I will be reposting my post about relationships.  Keep in mind that I am a guy so this is from a man’s view.  I know women have their own thoughts which may vary. 

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 than 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 guy’s 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 you’re a guy and your want to look strong, then telling the truth is being strong.  Opening up to a woman 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 you’re 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 (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.

A Man With Crohns (Repost)


I originally posted this on May 31 2012.  I thought this would make a nice repost.  I chose this one to repost because within the past year I have gotten many followers and most are women.  When I first started to advocate one of my goals was to get more guys to open up.  I have to say, within the past year I have met a lot more men (and boys) with IBD but I almost feel like it is a woman’s club 🙂  So, this was my guys take on IBD.

 

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.