A Guy with Crohn's

Check out my best post yet @ http://thegutsygeneration.blogspot.com/2012/08/guest-post-jeffreys-story.html  It was a guest post for The Gusty Generation which is a great site for our youth with IBD.  Every young person with IBD should know…They are not alone with their disease.

It’s Friday…so it’s time for some more recommendations.  These sites are for people with IBD.

http://crohnology.com/ - Not sure if I recommended this one in the past.  It is a great place to find people with IBD in your area.

http://www.crohnsdiseasesupport.co.uk/ - This is a UK based site.  It has some good information for patients.

http://ucvlog.com/ - This one is for people with Ulcerative Colitis and is put out by 2 great people, Nadia and Dennis.

http://www.girls-with-guts.com/ - This one is a brand new site put out by some great women …  Sara, Jackie, and Charise.  These ladies are well known in the IBD community.  They have just banded together to create a site for women with IBD.

This week, I want to toot my own horn also.  Check out my new page on Facebook.  http://www.facebook.com/BathroomTalk  This is a place to get a laugh and tell some stories with people with IBD.

I hope you enjoy these sites, and if you discover some real good IBD sites, let me know and I will promote them here next Friday.  Have a wonderful Pain Free weekend..and remember -Tomorrow, May 19th is World IBD Day.

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.

Eveyone 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 uncurable, 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 getitng worse.  I would be going to the bathroom 30 times a day and in pain.  Depression agian 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 truely 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 stregth.  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 pround 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.

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 evetually got better.  When I was 16, I came down with pnumonia 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 not 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 Adamsnow 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 weak 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.

Today is Wednesday, which is offically known as Hump Day.  I then started thinking, this would make a good blog.  So my question today is…what and when was your hump?  Now I am not talking about the dirty type of hump.  I am talking about the bump in the road.  I am talking about that little obstacle that slowed you down but didnt’ stop you.

My hump happened in Dec 2011 & Jan 2012.  In December for no reason at all I started going to the bathroom a lot.  I don’t mean 10 times a day.  I am talking 30.  I spent almost all my time in the bathroom.  And with these trips came the pain.  Severe pain where I would double over and get teary eyed.  I would take Immodium but that didn’t even touch me.  Now at the time I was taking Metformin (Glucophage) for high blood glucose levels.  I am now convinced this was the cause of my problems. I called my Endocrinologist and told him what was happening and he told me to stay on the pills.  Needless to say, that was the last time I ever spoke with him and I took myself off the pills.  I also tried to call my GI but he was on vacation.  Luckily there was another great GI around he was prescribed me Lamotil.  This was a lifesaver.  It helped slow things down and the pain started to go away.

Now, I was starting to get things in order, but the underlying problem was still there.  I was scheduled for a colonoscopy in February and I couldn’t wait for it.  But I was scared at the same time as I kept thinking that things were going to be so bad that I was going to be told my colon has to come out.  I stumbled into depression and felt so alone.  I had no one to talk to that would understand what I am going through.  The only person I knew of that could have helped me was my father in law because he had his intestines removed from Colitis…but he had passed away in May 2011.  I was at the lowest point in my life…and had hit “The Hump”.

I decided to finally confront this disease that I have had for 23 years.  I finally started to do some research online and found so many wonderful people.  I heard so many inspiring stories and learned that even if I did lose my colon, my life would still go on.  I started to have hope and determination to move on.  I started climbing the hump. 

At the end of January, I decided to take my life back into my own hands.  I needed to lose weight and get my health back in order.  I joined Weight Watchers and took a really big step by going Gluten Free. 

When I finally had my colonoscopy, it turned out that not only was it not that bad but my illium had healed to the point where you wouldn’t know it was diseased. 

To date (May 2012) I have lost 16 lbs.  I go to the bathroom about 3-4 times a day.  I have little to no pain.  I do have some issues still like a low Vitamin D level, but overall I am improving.  My depression has subsided.  I haven’t used Lamotil or Immodium in months.  I have gotten over my hump.

I now know that no matter what life throws at me…I can take it.  I can get through what ever comes my way. 

I have had Crohn’s for 23 years now and never in all that time have I thought I would want to advocate for the disease.  In fact, I kind of denied that I even had it.  I didn’t want to face it.

Earlier this year in January I was at the lowest point with this damn disease.  I was going to the bathroom 30 times a day and having a lot of pain.  Nothing, not even my meds, was helping.  It was then that I realized that I had to face this disease head on and acknowlege it.

I went online to look for help for the first time in my 23 years.  I thought I was so bad that I was going to have to have my intestines removed so I started researching ostomies.  And that is when I found Maggie on YouTube.  From there, I saw she watched some videos which I evenetually did also…and that is how I found Sara (inflammed and untammed).  Doing some more research led me to Kelly (I Have a Bad Tummy).  All 3 women have a following and have different issues with IBD.  They have a strong voice for advocacy and made me want to reach out to others for support.  I then found a number of other strong women who advocate (Full Frontal Ostomy, The Great Bowel Movement, Blood Poop and Tears) and many other sites.  One thing I started to notice is that every one of these people were women.  Where are all the guys?

Within my search for support I have found some guys out there.  Brian Greenberg of Intense Intestines is one.  There is Jason from the Crohns Disease Support Network.  Both are big advocators within the community.  Another person who is a little low key but has a following is Patrick Leger aka SCDPat.  He is known for spreading the good word of the Specific Carb Diet.  I recently spoke with him on Twitter to get some insight on building a following.  He gave me some great advice.

One of the things I mentioned was that I wanted to form a “Band of Brothers”  Recently a bunch of the women I mentioned went to Chicago to advocate and they called themselves the Girls with Guts (or something like that).  I thought that was great.  They had always been seperate..but banded together they can do a lot more. 

So here I am.  There aren’t many guys out there advocating and alone, we are just one voice.  So I am reaching out.  GUYS….if your reading this, help us out.  I would love to get a group together to advocate.  Patrick suggested “Crohnie Boys” but I don’t want to exclude our other IBD brothers.  If you want to help raise awareness please let me know.  Let’s get a group together.  Together we can be powerful.

IBD Advocacy.  It’s not just for women.  Let’s show them how us guys do it.  Let’s speak up and be heard.

I have been seeing a lot of this online lately associated with IBD.  This will probably be the subject of my next video.  So, I would love to know…..How do you deal with the depression that this disease causes.

I know at some point anyone with IBD has had some depression.  Whether is was when you first got diagnosed, or just living with it or when your in the hospital with a terrible flare.   Do you see a therapist to help get you through it?  Do you take meds?  Or do you keep yourself busy and just plow through it? 

I would really love some feedback so that I may help educate others that have been in your shoes.  If you don’t feel like making you comments public, please send me a message and I will keep it confidential.   I know this is a touchy subject and I would really love your help.

Thank you everyone that will help me out. 

So for the second time in a month I have had a nasty argument with someone who claims they are cured from Crohn’s.  This guy says he is a scientist and cured himself with Vitamin D.

Why are these so called Doctors and Scientist so ignorant about IBD.  Worse, why is it when I ask to see their studies and proof, they have none.  They are in the medical industry.  One, they should know IBD is uncurable.  Two, especially as a scientist, you know never to say something is positive unless you have backup to prove it.

The worse thing about this, is that people will believe them.  All they are doing is praying on helpless people.

EVERYONE READING THIS…..HEAR ME NOW. CROHN’S DISEASE IS INCURABLE.  At least today it is.  In the future a cure might be found….but right now there is no cure.  I am sorry, but it is the truth.

Anyone that claims to be cured, is not cured…just in remission.  Do not confuse the two.  Please do your reasearch.  Read the facts out there.  Don’t just take my word for it.  FDA says there is no cure.  CCFA says there is no cure.  Any reputable GI will tell you there is no cure.

Anyone claiming to be cured is just hurting our advocacy of the disease.  Let them know that.  So many people don’t know what Crohn’s Disease is and when people throw lies out there…it hurts us.

To those saying your cured…..STOP IT!!!!!!!!!!!!!!! 

I had been doing some thinking and I wanted to start up a room for people with IBD to let off some steam and have some fun.  A lot of the rooms out there have some really serious topics going on and I know we have a lot of issues…but sometimes we need a laugh also.

So, I created on Facebook a page called Bathroom Talk.  It can be found at http://www.facebook.com/bathroomtalk.  They say laughter is the best medicine.  So come here for some stories, laugh at some pictures and feel free to add to the fun.  If you want, you can share some of what is on your mind.  If you need to get serious, that is ok also.  I want everyone that comes to feel comfortable.  We are all in the same boat and have the same issues.

Come on over, click the like button if you like the page (I hope you will) and have some fun.  I look forward to seeing you there.

I had been doing some thinking and I wanted to start up a room for people with IBD to let off some steam and have some fun.  A lot of the rooms out there have some really serious topics going on and I know we have a lot of issues…but sometimes we need a laugh also.

So, I created on Facebook a page called Bathroom Talk.  It can be found at http://www.facebook.com/bathroomtalk.  They say laughter is the best medicine.  So come here for some stories, laugh at some pictures and feel free to add to the fun.  If you want, you can share some of what is on your mind.  If you need to get serious, that is ok also.  I want everyone that comes to feel comfortable.  We are all in the same boat and have the same issues.

Come on over, click the like button if you like the page (I hope you will) and have some fun.  I look forward to seeing you there.

I had been doing some thinking and I wanted to start up a room for people with IBD to let off some steam and have some fun.  A lot of the rooms out there have some really serious topics going on and I know we have a lot of issues…but sometimes we need a laugh also.

So, I created on Facebook a page called Bathroom Talk.  It can be found at http://www.facebook.com/bathroomtalk.  They say laughter is the best medicine.  So come here for some stories, laugh at some pictures and feel free to add to the fun.  If you want, you can share some of what is on your mind.  If you need to get serious, that is ok also.  I want everyone that comes to feel comfortable.  We are all in the same boat and have the same issues.

Come on over, click the like button if you like the page (I hope you will) and have some fun.  I look forward to seeing you there.

So I forgot to post earlier my picks on who you should look into following or reading.  This week I was introduced to two new sites.

http://kidsorteenswithcrohnsdiseaseoranileostomybag.webs.com/

This website is made by a teenager and is for kids with Crohn’s Disease or an ileostomy.  I think it is great that our young adults are reaching out to help one another through a tough time in their lives. 

http://crohniebolognaibd.blogspot.com/2012/04/know-your-meds-people-who-have-ibd.html

https://www.facebook.com/CrohnieBolognaIbd

The next links are the same person.  They have their own site as well as a facebook page.  They are Crohnie Bologna IBD.  It is written by Christy who has Crohn’s disease and an ostomy.

I hope you enjoy these sites and if you find some new ones, let me know.