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.

Hump Day…What is Your Hump?

Every Wednesday officially known as Hump Day.  I started thinking, this would make a good blog.  So my questionis…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 didn’t’ 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 Imodium 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 ilium 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 Imodium 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.

IBD Advocacy….It’s Not Just For Women

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 acknowledge 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 eventually 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 separate..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.