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A PGA pro's battle with ulcerative colitis

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#1 zakkozuchowski

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Posted 26 December 2012 - 07:21 PM

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A PGA pro's battle with ulcerative colitis

By Rob Kenny

GolfWRX Contributor

It was April 2010, and things in my life were going great. I was engaged to my dream girl, and was getting started at a brand new job, working as an assistant golf professional at a private club in Markham, Ontario. Not only that, but I was working with a great friend of mine, as well as one of the top head golf professionals in the province.

It was the perfect place for me to be at that point of my career. In my third year, I working under a great team at a great club. And on top of that, I had the opportunity to play a lot of local PGA events, which I was very excited about. Playing and competing at a high level is something I love and cherish, and I was pumped for the opportunity.

We were just getting things started at the club, setting up the pro shop and preparing for what was to be a great season. But things took a wicked turn for me in my own life. I found myself needing to go to the bathroom a lot more than normal, and experiencing quite a bit of stomach pain. I just sort of brushed it under the rug in the beginning, thinking it was nothing to worry about that it would go away on its own. Boy, was I wrong.

It continued to happen, increasing in frequency as well as in the urgency to go. When I had to go, I had to go NOW -- no waiting around what so ever. The tipping point came when I began to notice blood in my stool. I knew this was something that was not going to go away on its own. I needed to get help.
I went to the doctor, and thus began a wild series of events that just never seemed to end. There were countless doctors and tests to try to determine what was wrong and why this was happening to me. In the beginning, I was told it was a bowel disease called “Ulcerative Proctitis.” They told me it was nothing major, and a series of medication were supposed to calm everything down and get things back to normal. I had been sick for about four months, so was excited to hear the news and happy to get my life back on track.

After taking the doctor’s advice and medication I was no better -- maybe even a bit worse. I went back to the specialist and told him that there was no progress. Like me, he was concerned, and booked a colonoscopy. For anyone who has had this done, you know it is no fun at all, but at the same time it needed to be done so the doctors could see exactly what was going on. What the doctors found was worse than the original “scope” showed -- more of my colon was affected, and my doctor was confident that I had “Ulcerative Colitis.”

For those who aren't familiar with Ulcerative Colitis, it is an inflammatory bowel disease that unfortunately has no known cause, and only one cure; surgery. The symptoms are many, and include living in a bathroom (at the worst, I would have to go about 20 or more times a day). It also causes constant stomach pain, fatigue, weakness and other bad things.

Even though there was only the one cure, the doctor was nowhere near ready to make me go under the knife. He recommended a high-strength steroid (prednisone) that he thought would calm things down and ease the swelling of the colon, sending the disease into remission. There are thousands of people who have Crohns and Colitis and can live a normal life through medication and treatment, and we were hoping I would be one of them -- David Garrard, a former Jacksonville Jags QB is a well-known athlete who has Crohns.

Of course, this made things at the golf club a lot tougher. I was in so much pain and in the bathroom so often. It affected my performance in the shop and on the course. I tried my best while there, but it was not easy. I played when the pain was not as high, but my game suffered. I was only able to play in two events all year, and they were both poor outings -- a missed cut in the Ontario PGA Championship and a tough day two in our Assistants summer Championship that had me at the back of the pack.

Playing two consecutive days of tournament golf with this disease was tough, and the fatigue and pain caught up to me in the end. I knew that that was probably going to be it for me for tournaments for 2010, and that was tough to deal with. I knew I was just not healthy enough to play and compete at that level. I just wanted to put all of my energy to getting better and beating the disease. I ended up leaving the club just before the end of the season, as the pain and stress of it all was just too much for my body to handle.

It was now October, and all of these pills and medications were not doing anything for me. I felt I was getting worse and no progress was being made. I went back to the doctor and he knew at this point that the prednisone was not the answer. What I needed was a new drug treatment called Remicade. This was a new treatment for UC patients, but it had offered great results for some. The problem with this treatment is that you have to be approved through the government for it, and you have to get an insurance company to support you, as this treatment costs over $4000 per dose (it is an IV style treatment that goes directly into the blood stream.)
After a long wait and a number of phone calls, emails and paperwork, I was finally approved for the treatment. I had three appointments booked, and they had told me that this should get things into remission. Well, three treatments and more than $12,000 later, I was still not any better, and I knew the surgery was the next step. I was now a year into it and so sick and tired of being so sick and tired. I could not wait to have the surgery and be 100 percent cured of this disease. The main setback with this was the fact that I would have a colostomy bag on the outside of my stomach. It would be a major thing to get used to, but I knew I could do it. I felt it would be a piece of cake!

It was now August 2011 and almost one year since I had last played a round of golf. I remember being in the waiting room waiting to be called into the OR, and I kept thinking of all the things I was going to do when I was better. Golf was high on that list. Getting out to play and compete again was a high priority, and one I could not wait for! It took a while before that first round, but it was all worth it!  I remember playing late in 2011, just one round. I was playing with my wife and in-laws at a course I knew well, and standing on that first tee was very special. After all that I had been through, all the hard times and struggles, I was back! I shot a high number that day, but the thrill of being back on the links was so special, and a round I will never forget.

I really appreciate GolfWRX allowing me the opportunity to share my story with the community here. I have left this off with a lot more to add to my story and I hope you enjoyed the read. For anyone looking for more information on the disease, I urge you to check out the websites below, and feel free to PM with any questions you may have in regards to the disease

http://www.ccfa.org/  and  http://www.ccfc.ca/


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#2 moegolfer11

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Posted 26 December 2012 - 07:53 PM

Thank you for posting this. I also suffered from Ulcerative Colitis earlier in my life, but it has now progressed into Crohn's Disease and Primary Sclerosing Cholangitis (Same disease Walter Payton had). It is very much of a struggle, you never know when you have to go, constantly living with cramps and the fear that you cannot make it to the bathroom. It really puts a strain on golf as well. Playing College golf when we have to play 36 in a day becomes a struggle. I also take remicade and actually have my next infusion friday. I commend you for being vocal about our disease. Yes the disease is not curable but we can fight harder and harder to live normal lives. How was the colostomy bag? My remicade has been working less and less and it is an option I have if I don't get better. Thanks GolfWRX and thanks Rob Kenny.
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#3 Sean2

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Posted 26 December 2012 - 08:15 PM

Rob, I hope you are well on the road to recovery. I know what it's like to have a chronic condition. Best of luck as you move forward. :-)
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#4 davidw88

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Posted 27 December 2012 - 06:35 AM

I have had crohns disease for around 4 years and only played a couple in the first year, but starting to get out more now, the hardest thing for me is the mornings.  Hope the medication is helping you

#5 canadiangolfpro

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Posted 27 December 2012 - 08:24 AM

Rob  I am a PGA of Canada Life Member and my father suffered from this disease and passed away on the operating table while having the operation many years ago. Since then techniques have improved and incredibly, a young guy who worked for me in the golf shop in the early '80's suffered from the same disease. This kid was a great player and suddenly his game disappeared because of his problems. Different drugs did not help so at the young age (i'm guessing about 17) he underwent the operation and has lived with the bag ever since. Before his operation he wrote a letter to Al Geiberger (Mr. 59) asking his opinion as Geiberger had the same operation. Not only did Geiberger reply, he phoned the young guy and assured him it was the best way to go and it was. I have a huge amount of respect for Geiberger for taking the time and it resulted in this young guy regaining his game, winning the  provincial amateur championship and representing Canada in world competitions. He now has countless club championship trophies and is one of the province's best players. Just a great story and he is an example of how you can learn to live with the condition and succeed.Good luck to all of you.


#6 qrispy2

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Posted 27 December 2012 - 10:37 AM

Thanks for sharing, makes it easier I believe.
I was diagnosed with diverticulitis in June and had a colon resection and colostomy added in August.
Doctors said I would be able to play golf in a few months, but I was not very confident about how that would work with a bag hanging from my belly.
First few weeks after surgery where total misery, so painful, and hard to be positive.
But just as doctors had said, I was back to playing golf in about two months.
Lost some distance and putting stroke changed for the worse due to bag being in the way of my hands at address.
I am so much happier now that I can play again.
Hang tough and you will play again.
Play it as it lies!

#7 corky

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Posted 27 December 2012 - 11:44 AM

My Cousin has just had her surgery and at 28 years old seems far too young to be having this kind of illness, but she too is looking forward to being unchained from the bathroom.

Good luck and thanks for posting


#8 philsRHman

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Posted 27 December 2012 - 12:14 PM

Thanks for sharing. I was just hearing a story last night about the daughter of a woman in my mom's office. She's in her late 20s and had the surgery. They said in 6 months she will potentially get a rebuilt colon and won't have the bag the rest of her life. Hopefully the advances in medicine will make your situation better with time.

#9 pgarob

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Posted 27 December 2012 - 12:42 PM

Thanks so much for all the positive responses so far.  I was very "private" when I was sick, and did not really want anybody to know, but you can't hide from this disease.  I am much more open now about what I went through, and I am doing what I can to help raise awareness about this crazy disease.

It was so tough being so sick for so long.  I was very limited in what I could do and where I could go, but I fought hard.  Working at a golf course with this was beyond tough.  I honestly don't know how I managed, and have some awful stories from it, but I did it, and am very proud of myself for it.

I am excited to write again, and have a lot to add and share about my 2012 season, as well as my 2013 plans.

Thanks again to this great community.  I feel very fortunate to be able to share my story with all of you.
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#10 pgolf22

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Posted 27 December 2012 - 12:59 PM

Great story and I wish you all the best for the future.


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#11 sheppy335

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Posted 27 December 2012 - 02:14 PM

Bless you and glad you are better! Hope you stay this way and continue to get better.
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#12 John Kreese

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Posted 27 December 2012 - 03:04 PM

Thanks so much for sharing your story!

#13 chiva

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Posted 31 December 2012 - 04:09 PM

Great story! Get well and play well. Reading these stories really makes me thankful for good health. It is something we shouldn't take for granted.

#14 REF3

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Posted 03 January 2013 - 01:27 PM

Thanks for sharing Rob!  I hope you have continued success in rebuilding your career and golf game.  I too was diagnosed with UC.  It hit me just about 5 years ago just after my 28th birthday.  I had been playing a lot more golf and really getting into it.  That all changed.  Early on prednisone in huge doses helped but other drugs didn't  seem to make a difference.  Finally went on colazal and had some decent success for about 1.75 years.  I was then hospitalized with a large infection in my lung that the docs determined was a reaction to the colazal and took me off of it immediately,  After visiting more specialist and more test I went on Remicade.  That had some initial success but never really got going.  After over a year on that with diminished success I switched to humira with no real change. Finally, last fall I saw a new doc that suggested we try my one last pre-surgery option.  An older drug called mercaptopurine (6-MP) was prescribed and I Was told it would be 4-6 weeks to see results.  Within two weeks I was doing better and have continued to improve.  I'm now almost completely off the prednisone (something I haven't done in more than a year) and have *fewer* worries about being on the golf course (will an IBD suffer ever feel completely comfortable on the course again??).

I still remember my first "round" after diagnosis.  I hadn't played in well over a year and I was just aching to play.  Mornings were (and still are but lesser so) the worst time.  My wife setup a "date night" but just took me out to a lighted executive course (we ate after, not before...IBD suffers understand).  She doesn't play but she rode in the cart with me.  I didn't play so hot but it was awesome to be out there again.

Fortunately I've been able to play a lot of golf sense then.  My life/schedule is now a more limiting factor than my health.  I still take some precautions before playing - like eating nothing or very very light before hand and never on the course (nutritionist are probably falling out of their chairs right now).  I drink as much water as I can but its not the same as real nutrition.  'm sure my game suffers near the end of rounds due to lack of nutrients for muscles and concentration but the extra strokes are well worth the peace of mind (and I'm a very competitive person!).

I hope I never need the surgery and for the first time in five years the last couple months have made me feel that might be possible.  It is comforting to know there is good golf that can be played after the surgery!  Best of luck to you and your wife.

#15 moegolfer11

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Posted 03 January 2013 - 01:56 PM

I wish I could take 6-MP, I heard that stuff does wonders. Only problem for me is I have PSC and the 6-MP has an effect on the liver. What does your upcoming season look like Rob? anything exciting planned?

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#16 pgarob

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Posted 04 January 2013 - 02:56 PM

View PostREF3, on 03 January 2013 - 01:27 PM, said:

Thanks for sharing Rob!  I hope you have continued success in rebuilding your career and golf game.  I too was diagnosed with UC.  It hit me just about 5 years ago just after my 28th birthday.  I had been playing a lot more golf and really getting into it.  That all changed.  Early on prednisone in huge doses helped but other drugs didn't  seem to make a difference.  Finally went on colazal and had some decent success for about 1.75 years.  I was then hospitalized with a large infection in my lung that the docs determined was a reaction to the colazal and took me off of it immediately,  After visiting more specialist and more test I went on Remicade.  That had some initial success but never really got going.  After over a year on that with diminished success I switched to humira with no real change. Finally, last fall I saw a new doc that suggested we try my one last pre-surgery option.  An older drug called mercaptopurine (6-MP) was prescribed and I Was told it would be 4-6 weeks to see results.  Within two weeks I was doing better and have continued to improve.  I'm now almost completely off the prednisone (something I haven't done in more than a year) and have *fewer* worries about being on the golf course (will an IBD suffer ever feel completely comfortable on the course again??).

I still remember my first "round" after diagnosis.  I hadn't played in well over a year and I was just aching to play.  Mornings were (and still are but lesser so) the worst time.  My wife setup a "date night" but just took me out to a lighted executive course (we ate after, not before...IBD suffers understand).  She doesn't play but she rode in the cart with me.  I didn't play so hot but it was awesome to be out there again.

Fortunately I've been able to play a lot of golf sense then.  My life/schedule is now a more limiting factor than my health.  I still take some precautions before playing - like eating nothing or very very light before hand and never on the course (nutritionist are probably falling out of their chairs right now).  I drink as much water as I can but its not the same as real nutrition.  'm sure my game suffers near the end of rounds due to lack of nutrients for muscles and concentration but the extra strokes are well worth the peace of mind (and I'm a very competitive person!).

I hope I never need the surgery and for the first time in five years the last couple months have made me feel that might be possible.  It is comforting to know there is good golf that can be played after the surgery!  Best of luck to you and your wife.

I got goosebumps reading that.  Totally similar to what I went through.  My issue was that no drug treatment or anything was working.  I really went into the surgery positive, and knew it would give me my life, and golf, back, and it has.  I still don't eat much before or during, as my ostomy bag fills up faster when I do, so I totally know what you mean.  I had a few rounds this summer where I was 1 or 2 under coming down the stretch and failed to break par.  Part poor mental game for sure, but part lack of energy and fatigue.
I really hope that you have continued good health and keep getting better.  All the best to you pal, and if you ever need a person with a lot of experience to talk to, feel free to PM me.
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#17 cardoustie

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Posted 04 January 2013 - 03:06 PM

Rob
I am up in Aurora.  Great reading and thanks for sharing
Hope you continue to progress in golf and in health
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#18 lbj273

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Posted 04 January 2013 - 09:34 PM

Great read, as someone who has Crohn's Disease and works at a golf course I completely sympathize with being in the bathroom all day.  Thanks for a great article!

#19 Brazz

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Posted 05 January 2013 - 08:02 PM

Seriously.....as someone who thinks getting up some days is difficult, you guy's have shown me the meaning of take life by the balls and live it. You are such great role models for the rest of us that take things for granted. You just never know what life is gonna throw at you........it's people like you that define " Bring It ! " Its so easy to crawl in hole and hide but you guy's fight on because this one life is a pretty darn precious thing.

Thanks for putting a sock in any excuse I have for not giving today and tomorrow all I got !

Brandon

#20 lbj273

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Posted 05 January 2013 - 11:11 PM

View Postmoegolfer11, on 03 January 2013 - 01:56 PM, said:

I wish I could take 6-MP, I heard that stuff does wonders.
6-MP is great, I was on it while on prednisone, unfortunately it wasn't something I could be on long term.  The remicade treatment was great as while until it stopped working.  I've been on Humera for the past few years and it has been the best thing for me.  When I started it was still a new treatment for Crohn's and was marketed for rheumatoid arthritis, but without it I would probably have a colostomy bag right now.

The tough thing about the different forms of IBD is that treatment for everyone is so drastically different.  For some people a diet change works wonders and others need heavy medication and others still need surgery.  Hopefully someday there will be a cure but in the meantime all we can do is spread awareness and lean on those close to us for the strength to get through each and every day


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#21 Doc Mcstuffins

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Posted 05 January 2013 - 11:19 PM

Rob-
Good luck my friend. I'm 35 now and was diagnosed with UC 10 years ago. Never have I been so sick in my entire life as I was when I was first diagnosed. Mine is in the lower part of my colon and thankfully it hasn't been as debilitating as it is for many others. Literally for the first 8 years or so I battled "flare-ups" 3/4 times per year. I would be sick months at a time. For whatever reason I started on probiotics (in addition to my meds...Asacol) 2 years ago and I've been healthy and in remission ever since. In fact, the last time I had a flare-up was when I ran out of my probiotics. I'm convinced this single handedly has helped improve my quality of life. Hopefully you'll find the right treatment that lets you move forward with your life pain free.

Stay strong Rob :wave:
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#22 earls682

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Posted 14 January 2013 - 09:02 AM

Rob,
Thank you for your story. I had Ulcerative Colitis for about 40 years, from the age of 24 to 66. I got some relief at about age 47 when I began taking a lot of Pepto Bismol which kills bactera. I finally achieved nearly 100% relief when I began taking colostrum 3 years ago. It is an auto immune enhancer from the first milk of a cow that has just given birth. I can only say it absolutely worked for me. I now get minor symptoms when I eat spagetti three days in a row, but I’m cured. Best of luck with you golf. Can you tell me how to cure my golf game?
Tom Earls
Sturbridge, MA

Posted to GolfWRX 1/3/12

#23 moegolfer11

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Posted 14 January 2013 - 11:05 AM

View Postlbj273, on 05 January 2013 - 11:11 PM, said:

View Postmoegolfer11, on 03 January 2013 - 01:56 PM, said:

I wish I could take 6-MP, I heard that stuff does wonders.
6-MP is great, I was on it while on prednisone, unfortunately it wasn't something I could be on long term.  The remicade treatment was great as while until it stopped working.  I've been on Humera for the past few years and it has been the best thing for me.  When I started it was still a new treatment for Crohn's and was marketed for rheumatoid arthritis, but without it I would probably have a colostomy bag right now.

The tough thing about the different forms of IBD is that treatment for everyone is so drastically different.  For some people a diet change works wonders and others need heavy medication and others still need surgery.  Hopefully someday there will be a cure but in the meantime all we can do is spread awareness and lean on those close to us for the strength to get through each and every day

Humira has been an option for me we just haven't taken it. Remicade seems to work one time and it doesn't the next. Instead of taking it every 8 weeks I'm taking it every 6. So I will talk to my docs about Humira. I recently have gotten a stent put in my liver to open my bile duct because there was a backup. I was in the hospital for a week because I also got pancreatitis from the ERCP. All I can say is I am totally ready for winter to be over to get back on the course and forget about this whole hospital and health stuff! Here's to a healthier 2013 for all of us!
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#24 smuhunter

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Posted 14 January 2013 - 01:04 PM

PGA Tour winner Heath Slocum has battled Ulcerative Colitis for almost 15 years.  He is a national spokesman for the CCFA and has done at lot for charity on behalf of Ulcerative Colitis...

http://www.examiner....-off-the-course

#25 RenoGolf

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Posted 31 January 2013 - 04:23 PM

It's awesome for me to see so many people overcoming the struggles that IBD can cause. My personal story is that I was diagnosed with UC at age 14 (now 38) and was able to manage it with oral meds until 1998. In January of that year, I weighed 165 and by May, I was down to 121. Due to the extent of my disease, my only real option at that time was to have a total colectomy (entire large intestine removal) with an internal pouch or "j" pouch. It was a complete life changer for me. However, about 2 years ago I again began to have struggles and was diagnosed with Crohn's. I've done Remicade, Humira, and just recently started Cimzia. I refuse to allow this condition to be my identity. That being said, I think it's important to be open with others about the condition. The reality is that this condition is not 'cool' and will put you in some embarrassing situations. I have found its important to be able to laugh at those times, otherwise it will demoralize you. Take care and good luck to you Rob.


#26 kal32473

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Posted 31 January 2013 - 06:52 PM

View Postzakkozuchowski, on 26 December 2012 - 07:21 PM, said:

Posted Image

A PGA pro's battle with ulcerative colitis

By Rob Kenny

GolfWRX Contributor

It was April 2010, and things in my life were going great. I was engaged to my dream girl, and was getting started at a brand new job, working as an assistant golf professional at a private club in Markham, Ontario. Not only that, but I was working with a great friend of mine, as well as one of the top head golf professionals in the province.

It was the perfect place for me to be at that point of my career. In my third year, I working under a great team at a great club. And on top of that, I had the opportunity to play a lot of local PGA events, which I was very excited about. Playing and competing at a high level is something I love and cherish, and I was pumped for the opportunity.

We were just getting things started at the club, setting up the pro shop and preparing for what was to be a great season. But things took a wicked turn for me in my own life. I found myself needing to go to the bathroom a lot more than normal, and experiencing quite a bit of stomach pain. I just sort of brushed it under the rug in the beginning, thinking it was nothing to worry about that it would go away on its own. Boy, was I wrong.

It continued to happen, increasing in frequency as well as in the urgency to go. When I had to go, I had to go NOW -- no waiting around what so ever. The tipping point came when I began to notice blood in my stool. I knew this was something that was not going to go away on its own. I needed to get help.
I went to the doctor, and thus began a wild series of events that just never seemed to end. There were countless doctors and tests to try to determine what was wrong and why this was happening to me. In the beginning, I was told it was a bowel disease called “Ulcerative Proctitis.” They told me it was nothing major, and a series of medication were supposed to calm everything down and get things back to normal. I had been sick for about four months, so was excited to hear the news and happy to get my life back on track.

After taking the doctor’s advice and medication I was no better -- maybe even a bit worse. I went back to the specialist and told him that there was no progress. Like me, he was concerned, and booked a colonoscopy. For anyone who has had this done, you know it is no fun at all, but at the same time it needed to be done so the doctors could see exactly what was going on. What the doctors found was worse than the original “scope” showed -- more of my colon was affected, and my doctor was confident that I had “Ulcerative Colitis.”

For those who aren't familiar with Ulcerative Colitis, it is an inflammatory bowel disease that unfortunately has no known cause, and only one cure; surgery. The symptoms are many, and include living in a bathroom (at the worst, I would have to go about 20 or more times a day). It also causes constant stomach pain, fatigue, weakness and other bad things.

Even though there was only the one cure, the doctor was nowhere near ready to make me go under the knife. He recommended a high-strength steroid (prednisone) that he thought would calm things down and ease the swelling of the colon, sending the disease into remission. There are thousands of people who have Crohns and Colitis and can live a normal life through medication and treatment, and we were hoping I would be one of them -- David Garrard, a former Jacksonville Jags QB is a well-known athlete who has Crohns.

Of course, this made things at the golf club a lot tougher. I was in so much pain and in the bathroom so often. It affected my performance in the shop and on the course. I tried my best while there, but it was not easy. I played when the pain was not as high, but my game suffered. I was only able to play in two events all year, and they were both poor outings -- a missed cut in the Ontario PGA Championship and a tough day two in our Assistants summer Championship that had me at the back of the pack.

Playing two consecutive days of tournament golf with this disease was tough, and the fatigue and pain caught up to me in the end. I knew that that was probably going to be it for me for tournaments for 2010, and that was tough to deal with. I knew I was just not healthy enough to play and compete at that level. I just wanted to put all of my energy to getting better and beating the disease. I ended up leaving the club just before the end of the season, as the pain and stress of it all was just too much for my body to handle.

It was now October, and all of these pills and medications were not doing anything for me. I felt I was getting worse and no progress was being made. I went back to the doctor and he knew at this point that the prednisone was not the answer. What I needed was a new drug treatment called Remicade. This was a new treatment for UC patients, but it had offered great results for some. The problem with this treatment is that you have to be approved through the government for it, and you have to get an insurance company to support you, as this treatment costs over $4000 per dose (it is an IV style treatment that goes directly into the blood stream.)
After a long wait and a number of phone calls, emails and paperwork, I was finally approved for the treatment. I had three appointments booked, and they had told me that this should get things into remission. Well, three treatments and more than $12,000 later, I was still not any better, and I knew the surgery was the next step. I was now a year into it and so sick and tired of being so sick and tired. I could not wait to have the surgery and be 100 percent cured of this disease. The main setback with this was the fact that I would have a colostomy bag on the outside of my stomach. It would be a major thing to get used to, but I knew I could do it. I felt it would be a piece of cake!

It was now August 2011 and almost one year since I had last played a round of golf. I remember being in the waiting room waiting to be called into the OR, and I kept thinking of all the things I was going to do when I was better. Golf was high on that list. Getting out to play and compete again was a high priority, and one I could not wait for! It took a while before that first round, but it was all worth it!  I remember playing late in 2011, just one round. I was playing with my wife and in-laws at a course I knew well, and standing on that first tee was very special. After all that I had been through, all the hard times and struggles, I was back! I shot a high number that day, but the thrill of being back on the links was so special, and a round I will never forget.

I really appreciate GolfWRX allowing me the opportunity to share my story with the community here. I have left this off with a lot more to add to my story and I hope you enjoyed the read. For anyone looking for more information on the disease, I urge you to check out the websites below, and feel free to PM with any questions you may have in regards to the disease

http://www.ccfa.org/  and  http://www.ccfc.ca/

I was sick for 2 years before I finally went to a specialist and was diagnosed with Crohn's.  Had 2 colonoscopies which obviously were no fun but at least they were able to figure out what was wrong.  Knowing first hand what you ae going through, I wish you nothing but the best of luck from here on out, on and off the golf course.

#27 dcaput02

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Posted 31 January 2013 - 11:54 PM

You open your eyes in the morning and you immediately have to go to the bathroom. This is the third time you've visited the toilet through the night. Or maybe the fourth. You can't remember.  There is still an hour to go before your alarm clock goes off but there is no point in lying back down. It takes nearly that long for the pain to diminish enough so you can fall back asleep. You start the bath instead and slip into the hot water. You want to stay in the tub all day but it's only a matter of time before you have to quickly hop on the toilet, still dripping wet because your colon is not going to wait until you dry yourself. You get dressed and brush your teeth making sure to avoid the mirror because you lost 50 pounds over the last year and you look like a skeleton. You've been able to eat less lately because it causes pain and whatever you do force yourself to eat does not have time to be absorbed properly. You're probably anemic from blood loss and you're certainly dehydrated. You lie down for a few minutes to gather the fortitude to start your commute. Of course you skip breakfast; you have a 45 minute drive and eating anything beforehand is playing russian roulette with your trousers. You go to the bathroom one last time before you jump into the car. You are mentally and physically drained and you haven't even started your day yet.

Crohn's has stolen years of my life. I'm in awe of anyone who has an 'active' job and battles with an IBD. I'm glad to see the awareness growing and hope everyone that suffers can find a treatment program that works for them. Remicade has been a life saver for me but we all live in constant fear of flare ups.



#28 mr smith

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Posted 01 February 2013 - 05:14 AM

View Postzakkozuchowski, on 26 December 2012 - 07:21 PM, said:

Posted Image

A PGA pro's battle with ulcerative colitisOp Pp Pp Pp Pp Pp Op Pp Pp

By Rob Kenny

GolfWRX Contributor

It was April 2010, and things in my life were going great. I was engaged to my dream girl, and was getting started at a brand new job, working as an assistant golf professional at a private club in Markham, Ontario. Not only that, but I was working with a great friend of mine, as well as one of the top head golf professionals in the province.

It was the perfect place for me to be at that point of my career. In my third year, I working under a great team at a great club. And on top of that, I had the opportunity to play a lot of local PGA events, which I was very excited about. Playing and competing at a high level is something I love and cherish, and I was pumped for the opportunity.

We were just getting things started at the club, setting up the pro shop and preparing for what was to be a great season. But things took a wicked turn for me in my own life. I found myself needing to go to the bathroom a lot more than normal, and experiencing quite a bit of stomach pain. I just sort of brushed it under the rug in the beginning, thinking it was nothing to worry about that it would go away on its own. Boy, was I wrong.

It continued to happen, increasing in frequency as well as in the urgency to go. When I had to go, I had to go NOW -- no waiting around what so ever. The tipping point came when I began to notice blood in my stool. I knew this was something that was not going to go away on its own. I needed to get help.
I went to the doctor, and thus began a wild series of events that just never seemed to end. There were countless doctors and tests to try to determine what was wrong and why this was happening to me. In the beginning, I was told it was a bowel disease called “Ulcerative Proctitis.” They told me it was nothing major, and a series of medication were supposed to calm everything down and get things back to normal. I had been sick for about four months, so was excited to hear the news and happy to get my life back on track.

After taking the doctor’s advice and medication I was no better -- maybe even a bit worse. I went back to the specialist and told him that there was no progress. Like me, he was concerned, and booked a colonoscopy. For anyone who has had this done, you know it is no fun at all, but at the same time it needed to be done so the doctors could see exactly what was going on. What the doctors found was worse than the original “scope” showed -- more of my colon was affected, and my doctor was confident that I had “Ulcerative Colitis.”

For those who aren't familiar with Ulcerative Colitis, it is an inflammatory bowel disease that unfortunately has no known cause, and only one cure; surgery. The symptoms are many, and include living in a bathroom (at the worst, I would have to go about 20 or more times a day). It also causes constant stomach pain, fatigue, weakness and other bad things.

Even though there was only the one cure, the doctor was nowhere near ready to make me go under the knife. He recommended a high-strength steroid (prednisone) that he thought would calm things down and ease the swelling of the colon, sending the disease into remission. There are thousands of people who have Crohns and Colitis and can live a normal life through medication and treatment, and we were hoping I would be one of them -- David Garrard, a former Jacksonville Jags QB is a well-known athlete who has Crohns.

Of course, this made things at the golf club a lot tougher. I was in so much pain and in the bathroom so often. It affected my performance in the shop and on the course. I tried my best while there, but it was not easy. I played when the pain was not as high, but my game suffered. I was only able to play in two events all year, and they were both poor outings -- a missed cut in the Ontario PGA Championship and a tough day two in our Assistants summer Championship that had me at the back of the pack.

Playing two consecutive days of tournament golf with this disease was tough, and the fatigue and pain caught up to me in the end. I knew that that was probably going to be it for me for tournaments for 2010, and that was tough to deal with. I knew I was just not healthy enough to play and compete at that level. I just wanted to put all of my energy to getting better and beating the disease. I ended up leaving the club just before the end of the season, as the pain and stress of it all was just too much for my body to handle.

It was now October, and all of these pills and medications were not doing anything for me. I felt I was getting worse and no progress was being made. I went back to the doctor and he knew at this point that the prednisone was not the answer. What I needed was a new drug treatment called Remicade. This was a new treatment for UC patients, but it had offered great results for some. The problem with this treatment is that you have to be approved through the government for it, and you have to get an insurance company to support you, as this treatment costs over $4000 per dose (it is an IV style treatment that goes directly into the blood stream.)
After a long wait and a number of phone calls, emails and paperwork, I was finally approved for the treatment. I had three appointments booked, and they had told me that this should get things into remission. Well, three treatments and more than $12,000 later, I was still not any better, and I knew the surgery was the next step. I was now a year into it and so sick and tired of being so sick and tired. I could not wait to have the surgery and be 100 percent cured of this disease. The main setback with this was the fact that I would have a colostomy bag on the outside of my stomach. It would be a major thing to get used to, but I knew I could do it. I felt it would be a piece of cake!

It was now August 2011 and almost one year since I had last played a round of golf. I remember being in the waiting room waiting to be called into the OR, and I kept thinking of all the things I was going to do when I was better. Golf was high on that list. Getting out to play and compete again was a high priority, and one I could not wait for! It took a while before that first round, but it was all worth it!  I remember playing late in 2011, just one round. I was playing with my wife and in-laws at a course I knew well, and standing on that first tee was very special. After all that I had been through, all the hard times and struggles, I was back! I shot a high number that day, but the thrill of being back on the links was so special, and a round I will never forget.

I really appreciate GolfWRX allowing me the opportunity to share my story with the community here. I have left this off with a lot more to add to my story and I hope you enjoyed the read. For anyone looking for more information on the disease, I urge you to check out the websites below, and feel free to PM with any questions you may have in regards to the disease

http://www.ccfa.org/  and  http://www.ccfc.ca/
I know the experts say there is no known cause fo diseases like this but logic would say that something you are putting into your body is reacting violently with your bowels. I have found that very little if any research is done in regards to prevention and nutrition, doctors are guided by pharma companies who want money for treatments. I find that the whole medical industry revolves around profits from people being sick. They want you to get better, but only by taking their product and being chained to treatment for life. I have read that whole food, raw, plant based diets can have miraculous benefits for people with chronic gastrointestinal conditions. I would recommend anyone with this type of condition consult with a nutritionist, preferably a vegan nutritionist.

#29 lbj273

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Posted 02 February 2013 - 12:55 AM

View Postdcaput02, on 31 January 2013 - 11:54 PM, said:

You open your eyes in the morning and you immediately have to go to the bathroom. This is the third time you've visited the toilet through the night. Or maybe the fourth. You can't remember.  There is still an hour to go before your alarm clock goes off but there is no point in lying back down. It takes nearly that long for the pain to diminish enough so you can fall back asleep. You start the bath instead and slip into the hot water. You want to stay in the tub all day but it's only a matter of time before you have to quickly hop on the toilet, still dripping wet because your colon is not going to wait until you dry yourself. You get dressed and brush your teeth making sure to avoid the mirror because you lost 50 pounds over the last year and you look like a skeleton. You've been able to eat less lately because it causes pain and whatever you do force yourself to eat does not have time to be absorbed properly. You're probably anemic from blood loss and you're certainly dehydrated. You lie down for a few minutes to gather the fortitude to start your commute. Of course you skip breakfast; you have a 45 minute drive and eating anything beforehand is playing russian roulette with your trousers. You go to the bathroom one last time before you jump into the car. You are mentally and physically drained and you haven't even started your day yet.

Crohn's has stolen years of my life. I'm in awe of anyone who has an 'active' job and battles with an IBD. I'm glad to see the awareness growing and hope everyone that suffers can find a treatment program that works for them. Remicade has been a life saver for me but we all live in constant fear of flare ups.
this literally describes my mornings almost perfectly

#30 jokerusn

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Posted 02 February 2013 - 12:05 PM

I'm also a Rob diagnosed with Crohn's disease.  Mine came on rather suddenly about 2 years ago and within 3 months, I lost 40 lbs.  I was nauseous just thinking about food and couldn't eat more than a half of a dry turkey sandwich before being too nauseous to go on. Prednisone helped push it back and since then, I've gone through numerous meds - lialda, apriso, entocort (which worked great at first but worked less and less over time) and their generics to finally Humira which is AMAZING!!   I haven't been this free in years.  Even before I was diagnosed, I had digestive issues and had the same worry lots of you guys have mentioned.  I am also taking a probiotic religiously which, I believe is one of the reasons for my lack of symptoms.  After lots of trial and error, I know what I can and can't eat anymore and what I need to do/eat/avoid on the golf course to not have mid round runs to the bathroom.  Otherwise, I'm lucky to be able to eat everything I love as long as I maintain a fairly regular routine.   To those of you still not finding the right combination or if nothing works for you, I hope you have relief soon.  I know what you're going through and wouldn't wish it on anyone.

Edited by jokerusn, 02 February 2013 - 12:11 PM.

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