Mulligan

 
I cannot emphasize enough how much a strong, fighting mentality helps deal with Crohns.  I have always considered myself a fighter.  I think I have probably told my daughter Jill 1000 times in her life to "never give up" on anything.  Having said that, when I started to get sick again after my last surgery in December 2002, I felt that strong, fighting will starting to leave.  It was now March of 2003 and I just could not believe that 3 months after surgery, I was sick again.  I was single, living by myself and rarely left the house.  I basically went through the motions every day, just waiting for the next day to come, hoping I would feel better, but not doing anything to help.  It was at that point that I decided to get a dog.  I really don't remember what triggered the thought, however, I have always loved dogs and never had one of my own.  I guess I figured, "better late than never".  On April 12, I came home with an 8 week old female English Bulldog pup that I named Mulligan.  To this day, I still say that dog saved my life.  She needed me and I always had to be there for her.  She gave me back that fighting spirit that was beginning to slip away.  I certainly had family that loved and needed me but this was different, she gave me the kick in the ass that I needed.  At this point in time I knew I needed to really do something drastic to get myself better.  One of the first things I did was to think about the past 35 years of dealing with Crohn's and the things that had caused flare ups.  Since I first got sick, I had always kept a food diary.  Unfortunately, there was nothing really consistent in the diary.  Sure, there were certain things that would almost always cause a flare up, however there were many inconsistencies.  The one thing in common in all of the food diary's I had kept was right in the title...FOOD.  It was that day that I made a drastic change in my diet.  I am going to get into the specifics of what I do every day of my life in my diary, which will begin on January 1, 2012.  Just know that my search for liquid meal replacements that I would best tolerate began that day.  By the end of April, the Crohns went into remission.

The story of Mulligan has a sad, yet, in many ways, a happy ending.  I am not a very religious person, however, I know that Mulligan was put on this planet to be my guardian angel.  Over the next year and a half as she grew into an adult dog I got healthier every day.  In the summer of 2005 I met my future wife, Emily.  We bought a house and moved in together in December of 2006.  Emily has 2 boys and also had a dog (a Welsh Springer Spaniel named Hudson).  All of us were very happy when in the summer of 2007 I found a lump on Mulligans belly.  It was cancer and she left us in November of 2007.  I truly believe that she saw that I was in so much of a better place than the day I took her home.  She knew that her job was done.

The Next 20 Years

As difficult as it is to deal with Crohn's disease, you would think all of us would do everything we could to avoid a flare up.   I cannot tell you how many times I have either eaten or drank something that would knock me on my ass.  I still mess up today although not nearly as much as I did in the past.

Five years after Angela and I were married, we were divorced.  Thinking that just because I was married and had a child that I had "caught up" with my friends, obviously was not the case.  The next 15 years of living by myself, learning who I was is really when I grew up and matured as an adult.  Unfortunately, too many late night meals and too much alcohol consumption led me down a path of self destruction as far as my Crohn's was concerned.  Many of the medications associated with helping ease the symptoms of Crohn's disease are sulfur based.  Unfortunately, I am allergic to sulfur, therefore all of my flare ups were treated with huge cycles of prednisone.  In fact, I was on and off prednisone for a total of 33 years.  Can't even begin to describe what that has done to my body.  It has been 9 years since I have taken prednisone.  I can confidently say that no matter what happens to me, I will never again take that awful medication.  During the 15 years after my divorce, I had 3 more surgeries.  Two were Crohns related and the 3rd was to remove my gall bladder.  My last surgery was in December of 2002.  After that surgery, I was left with about half of my colon and precious few feet of my ileium.   Unfortunately, by early in 2003, Crohns was back.   I knew that I had to do everything and anything that I could to prevent any more surgeries.  It was at that point in my life that I made the change that finally put me in control of Crohn's rather than Crohn's being in control of me.

"Growing Up"

I had my first surgery right after I started my freshman year at Rutgers in the Fall of 1974.  Went back to school the following Fall.  It was really difficult being physically and mentally so far behind everyone in my high school graduating class.  Now, on top of that, they were all a year ahead of me in school.  I try and not have any regrets for anything I have or have not done in my life, but looking back now, I kind of wish I was mentally tougher than I was at that time.  After 2 1/2 semesters in school, I quit.  I think I just wanted to change everything about my life and kind of start over.

I got a job working as a clerk for New Jersey Bell  ( which eventually became Bell Atlantic and is now Verizon).  As far as the Crohns was concerned, I constantly suffered from symptoms (mainly diarrhea) with some good days and a lot of bad days.  As anyone that suffers from any form of IBD can attest, one of the keys to life is knowing where every bathroom is located in as many towns as possible and which one was the closest based on where you were at that moment.  Another key is to mentally be able to deal with the fact that, at times, none will be close enough.

In life, I was doing relatively well.  Within a period of 3 years, I was promoted twice at NJ Bell and also had my first relationship.  I met Sonia at a company Christmas Party in 1978.  Her sister and I worked together and she brought Sonia as her guest.  Sonia lived and worked in Manhattan.  About 6 months after our relationship started she moved out of her apartment in NYC and moved into her sisters home (next town over from me) in her basement.  About 6 months after that, we moved into a 1 bedroom apartment in Avenel, N.J.  Sonia was 2 years older than I was, which, made her about 10 years mentally older than me.  We were on and off over the next few years, more off than on.  By that time, I was 25 and still very much a kid.  Around that same time, most of my friends from school were married, some of them already had kids of their own.  My next relationship would lead to marriage.  I met Angela in the Fall of 1983 (I was a month shy of turning 27).  We were friends for about 6 months before it became a relationship.  We were mentally in the same place.  She was 19 and living at home with her parents and 2 sisters.  She was ready to move to the next step in life and I was determined not to get left behind yet again and thought I was also ready for that next step.  We were married in March of 1985.  I learned at that time how much stress can affect Crohns Disease in a negative way.  I got really sick in the months leading up to our wedding.  I was always pretty thin and probably lost close to 20 lbs. in those last few months.  Thankfully, the Crohns went into remission almost immediately after we were married.  Two years later, our lives changed in an amazing, beautiful way.  Our daughter Jill was born.  I had finally caught up...

Post Surgery

It’s much more relevant to write about life in general after surgery, rather than specific post-surgical details.  Having said that, I will say that the infection I got after surgery nearly killed me.

Surgery was on  October 8, 1974.  I was two weeks shy of my 18^th birthday.  As I have mentioned previously, I was (and still am) a big sports fan.  As much as baseball was always my favorite sport, I was also a huge boxing fan at that time, in particular, a fan of Muhammed Ali .  The first time I remember smiling after my surgery was 22 days later when my brother Larry got home after sneaking in to the local drive-in theater with a few friends and watched Ali beat George Foreman.  I can clearly remember when he came home and told me that Ali had won.  I can actually say that was the first thing I can remember after surgery.  The first three weeks are, I guess, buried somewhere in my subconscious?

Now that the diseased intestine was removed (large section of my ileum, smaller section of my colon and my appendix) I was, once again able absorb those nutrients that I had previously been unable to.   Unfortunately, having missed those 4 years of puberty, I needed some “help” to get it kick-started once again.  At that time I was 18 years old,  5’1” and around 85 lbs.  I was sent to an endocrinologist, who did a series of x-rays and blood tests.  Through the series of tests, it was determined that my full height potential was 6’1”.  A series of hormone shots were scheduled which, according to the endocrinologist, should get me to around 5’8” (I actually topped out at 5’9”).  I also have a very clear recollection of getting that very first hormone shot.  I was lying face down on the doctors table and the shot was injected into my rear.  Within seconds of receiving the shot I got my first erection in, you guessed it, four years.  That erection lasted about 6 months…talk about embarrassing.

It was a long, long road to get the physical strength back to first just live a normal life and then to be able to compete in some of the sports that I had grown up playing.  When I was in high school, because I was so sick all of the time, I could not compete in baseball at the level I wanted to.  I looked for a sport that would not require as much physically and would still allow me to compete.  I started playing golf and eventually made my high school team.  Golf was the first sport I was able to participate in after surgery.  Eventually, in my early 20’s, I started playing baseball again (this time it was softball).  It was tough, because as a kid, I was a pretty good player.  Now, I considered myself a below average player.  I think I got the most physically out of what I could do, unfortunately, it was not enough to really compete at a high level.  Today, at the age of 55 I am still getting stronger every day.  As far as I am concerned, I will never reach the physical peak that I would have if I had not gotten Crohn’s disease.  This is a great thing.  Because I have this attitude, I work every day of my life, striving to reach this “unattainable” goal.  Today, this is one of the reasons I am winning the never ending battle with this disease.