2018 Orangeyes Open Summary

[sutomcat]

I was privileged to play in the tournament yesterday. We had a good turnout (12 teams), with many others joining us later for dinner. Niko Taumarian, who was close to Dan and a very good friend to him, played in the tournament and served as the emcee afterwards. He gave a great speech reminding us of what a good person Dan was and how we all should try and emulate his positive attitude, take the time to make others feel important and welcome and enjoy the time that we have.

Eric Israel, the community director of the Chron's and Colitis Foundation of Western and Central NY was the featured speaker. He talked about his son, who has the disease, reminded us all of the challenges of living with it and why it is so important to raise money to find ways to fight it and make it go away.

The event raised $5239, the second greatest amount raised in the 5 years we have been doing the tournament.

It was a weird day. There was times the sun came out and it was hot and humid, but it was mostly cloudy and overcast. It rained a few times but never hard and never for very long. But it was really windy, and at times was what we golfers call a 3 club wind.

Thanks to Niko for getting some great gifts for the silent auction, thanks to cto for again donating her fabled courtside seats for a game for a prize (it always earns the most money of any donated gifts. OrangeOnions and the rest of the Johnson family did a great job getting donated gifts for auction and Brian and his family did a wonderful job running the tournament. The Johnson family has become a well oiled machine running this thing and is impressive to see/ His daughter Sophia is also the cutest ticket number reader ever.

Jim Noble and his crew had Foxfire in great shape and Pasta's on the Green, the restaurant located above the clubhouse where dinner was held, did a fine job preparing dinner and hosting us.

Jen Buck won the ladies long drive and closest to the pin. Sixteen year old Ian Rivers won the long drive, leaving his drive about 15 yards short of the green on # 10 (the whites are listed at 359 on the Foxfire scorecard). I don't remember the name of the guy who won the men's closest to the pin but I know he placed his shot inside 3 feet on a day where the wind was gusting strongly in every direction. Impressive.

Carlos Oquendo's team won the team competition, going 16 under, which I believe is a new record for the event.

Lots of people showed up from the board, too many to mention, but I will give give a shout out to RayInVa and his wife Carol for coming up all the way from Virginia. Awesome. We appreciate everyone who came or otherwise supported the cause!

A good time was had by all. We have penciled in August 3rd, 2019 as the date for the tournament next year. I hope many of you can make it.

 

[llandz]

Not sure everyone associated with this will see my post. I don't want to put it on the board as a new thread. It really is for the crowd that knows about Crohn's.
So all summer I knew that my son in LA was most likely heading for his 2nd surgery. He had a colonoscopy in early August, but they were not able to successfully complete it for the 2nd year in a row as he was too blocked. Last summer they decided to try to medically reduce the blockage. After testing for what was most likely a "false positive" for TB he had to go through 3 months of treatment for TB before he could start his new medication. Treatment for any potential of TB is required by the CDC. He then was able to start a new injectable, Stellara. So August became the time to determine if it had helped, and it had not. At this point he was told, at the age of 35, that he would most likely need an ileostomy, and he would need a bag for the rest of his lifetime; it could not be reversed. They ran some more tests (MRI) and after a couple of weeks of adjusting to the thought of a colostomy bag, he was told he most likely did not need it. Last week he had a consultation with his surgeon, who did his last surgery. There are many questions if he will be covered for the surgeon. But today, they went ahead and scheduled his surgery as it is considered a near emergency situation. So it is this Friday. At this point we will have to pay for the surgeon out of pocket a small fortune. But hoping this gets straightened out by Friday. We believe it is covered. The surgeon is listed in his plan.
The good news...he is happy that he won't miss the launch date of this years Call of Duty Game. Seriously that is what he is happy about. Because last year his boss screwed up, couldn't be there, and David was left in charge of the launch. So now he can "hold this over him" come raise time. He also plans to work from the hospital He is expected to be in the hospital for about a week after the surgery.
Please keep my son in your thoughts this Friday...
Next year I am coming, and I want to be the featured guest...I am pissed at this disease...

 

[shu 49]

Not sure everyone associated with this will see my post. I don't want to put it on the board as a new thread. It really is for the crowd that knows about Crohn's.
So all summer I knew that my son in LA was most likely heading for his 2nd surgery. He had a colonoscopy in early August, but they were not able to successfully complete it for the 2nd year in a row as he was too blocked. Last summer they decided to try to medically reduce the blockage. After testing for what was most likely a "false positive" for TB he had to go through 3 months of treatment for TB before he could start his new medication. Treatment for any potential of TB is required by the CDC. He then was able to start a new injectable, Stellara. So August became the time to determine if it had helped, and it had not. At this point he was told, at the age of 35, that he would most likely need an ileostomy, and he would need a bag for the rest of his lifetime; it could not be reversed. They ran some more tests (MRI) and after a couple of weeks of adjusting to the thought of a colostomy bag, he was told he most likely did not need it. Last week he had a consultation with his surgeon, who did his last surgery. There are many questions if he will be covered for the surgeon. But today, they went ahead and scheduled his surgery as it is considered a near emergency situation. So it is this Friday. At this point we will have to pay for the surgeon out of pocket a small fortune. But hoping this gets straightened out by Friday. We believe it is covered. The surgeon is listed in his plan.
The good news...he is happy that he won't miss the launch date of this years Call of Duty Game. Seriously that is what he is happy about. Because last year his boss screwed up, couldn't be there, and David was left in charge of the launch. So now he can "hold this over him" come raise time. He also plans to work from the hospital He is expected to be in the hospital for about a week after the surgery.
Please keep my son in your thoughts this Friday...
Next year I am coming, and I want to be the featured guest...I am pissed at this disease...

I am so sorry and I hope everything works out but doesn’t all the indecisiveness seem a bit crazy. Shouldn’t they know exactly what needs to be done instead of the back and forth decisions on the surgery. It’s a one way ticket once it’s done as in he can’t go away from bag ever correct.

 

[ForCuseSake]

Not sure everyone associated with this will see my post. I don't want to put it on the board as a new thread. It really is for the crowd that knows about Crohn's.
So all summer I knew that my son in LA was most likely heading for his 2nd surgery. He had a colonoscopy in early August, but they were not able to successfully complete it for the 2nd year in a row as he was too blocked. Last summer they decided to try to medically reduce the blockage. After testing for what was most likely a "false positive" for TB he had to go through 3 months of treatment for TB before he could start his new medication. Treatment for any potential of TB is required by the CDC. He then was able to start a new injectable, Stellara. So August became the time to determine if it had helped, and it had not. At this point he was told, at the age of 35, that he would most likely need an ileostomy, and he would need a bag for the rest of his lifetime; it could not be reversed. They ran some more tests (MRI) and after a couple of weeks of adjusting to the thought of a colostomy bag, he was told he most likely did not need it. Last week he had a consultation with his surgeon, who did his last surgery. There are many questions if he will be covered for the surgeon. But today, they went ahead and scheduled his surgery as it is considered a near emergency situation. So it is this Friday. At this point we will have to pay for the surgeon out of pocket a small fortune. But hoping this gets straightened out by Friday. We believe it is covered. The surgeon is listed in his plan.
The good news...he is happy that he won't miss the launch date of this years Call of Duty Game. Seriously that is what he is happy about. Because last year his boss screwed up, couldn't be there, and David was left in charge of the launch. So now he can "hold this over him" come raise time. He also plans to work from the hospital He is expected to be in the hospital for about a week after the surgery.
Please keep my son in your thoughts this Friday...
Next year I am coming, and I want to be the featured guest...I am pissed at this disease...

I look forward to celebrating both our first win of 2018 and news of your son’s successful surgery on Friday.

Good luck!

 

[OburgOrange]

Not sure everyone associated with this will see my post. I don't want to put it on the board as a new thread. It really is for the crowd that knows about Crohn's.
So all summer I knew that my son in LA was most likely heading for his 2nd surgery. He had a colonoscopy in early August, but they were not able to successfully complete it for the 2nd year in a row as he was too blocked. Last summer they decided to try to medically reduce the blockage. After testing for what was most likely a "false positive" for TB he had to go through 3 months of treatment for TB before he could start his new medication. Treatment for any potential of TB is required by the CDC. He then was able to start a new injectable, Stellara. So August became the time to determine if it had helped, and it had not. At this point he was told, at the age of 35, that he would most likely need an ileostomy, and he would need a bag for the rest of his lifetime; it could not be reversed. They ran some more tests (MRI) and after a couple of weeks of adjusting to the thought of a colostomy bag, he was told he most likely did not need it. Last week he had a consultation with his surgeon, who did his last surgery. There are many questions if he will be covered for the surgeon. But today, they went ahead and scheduled his surgery as it is considered a near emergency situation. So it is this Friday. At this point we will have to pay for the surgeon out of pocket a small fortune. But hoping this gets straightened out by Friday. We believe it is covered. The surgeon is listed in his plan.
The good news...he is happy that he won't miss the launch date of this years Call of Duty Game. Seriously that is what he is happy about. Because last year his boss screwed up, couldn't be there, and David was left in charge of the launch. So now he can "hold this over him" come raise time. He also plans to work from the hospital He is expected to be in the hospital for about a week after the surgery.
Please keep my son in your thoughts this Friday...
Next year I am coming, and I want to be the featured guest...I am pissed at this disease...

Best of luck to your son

 

[llandz]

I am so sorry and I hope everything works out but doesn’t all the indecisiveness seem a bit crazy. Shouldn’t they know exactly what needs to be done instead of the back and forth decisions on the surgery. It’s a one way ticket once it’s done as in he can’t go away from bag ever correct.

No. Even his first surgery they did not know the intestines attached to the stomach wall, and they had to remove a portion of the wall. With any surgery, of any kind, you can find unknowns once you actually go inside. No test or machine is perfect. They knew last summer that he had the limit of bad intestines, and even 1 more cm would result in a bag. When they did the MRI they saw he did not get any worse. The surgeon even thinks he can get away with a little less than the gastro thought. I think it is better that he had the worse prognosis. He will be there someday, and he adjusted to the idea now, so when it does happen, he will be better about it. And really there is still a slight chance that he will come out of surgery on Friday with a colostomy bag.

 

[PhatOrange]

Not sure everyone associated with this will see my post. I don't want to put it on the board as a new thread. It really is for the crowd that knows about Crohn's.
So all summer I knew that my son in LA was most likely heading for his 2nd surgery. He had a colonoscopy in early August, but they were not able to successfully complete it for the 2nd year in a row as he was too blocked. Last summer they decided to try to medically reduce the blockage. After testing for what was most likely a "false positive" for TB he had to go through 3 months of treatment for TB before he could start his new medication. Treatment for any potential of TB is required by the CDC. He then was able to start a new injectable, Stellara. So August became the time to determine if it had helped, and it had not. At this point he was told, at the age of 35, that he would most likely need an ileostomy, and he would need a bag for the rest of his lifetime; it could not be reversed. They ran some more tests (MRI) and after a couple of weeks of adjusting to the thought of a colostomy bag, he was told he most likely did not need it. Last week he had a consultation with his surgeon, who did his last surgery. There are many questions if he will be covered for the surgeon. But today, they went ahead and scheduled his surgery as it is considered a near emergency situation. So it is this Friday. At this point we will have to pay for the surgeon out of pocket a small fortune. But hoping this gets straightened out by Friday. We believe it is covered. The surgeon is listed in his plan.
The good news...he is happy that he won't miss the launch date of this years Call of Duty Game. Seriously that is what he is happy about. Because last year his boss screwed up, couldn't be there, and David was left in charge of the launch. So now he can "hold this over him" come raise time. He also plans to work from the hospital He is expected to be in the hospital for about a week after the surgery.
Please keep my son in your thoughts this Friday...
Next year I am coming, and I want to be the featured guest...I am pissed at this disease...

Geez. I'm really sorry to hear all this. Definitely in our thoughts. Here's to success and good luck!

 

[rrlbees]

Not sure everyone associated with this will see my post. I don't want to put it on the board as a new thread. It really is for the crowd that knows about Crohn's.
So all summer I knew that my son in LA was most likely heading for his 2nd surgery. He had a colonoscopy in early August, but they were not able to successfully complete it for the 2nd year in a row as he was too blocked. Last summer they decided to try to medically reduce the blockage. After testing for what was most likely a "false positive" for TB he had to go through 3 months of treatment for TB before he could start his new medication. Treatment for any potential of TB is required by the CDC. He then was able to start a new injectable, Stellara. So August became the time to determine if it had helped, and it had not. At this point he was told, at the age of 35, that he would most likely need an ileostomy, and he would need a bag for the rest of his lifetime; it could not be reversed. They ran some more tests (MRI) and after a couple of weeks of adjusting to the thought of a colostomy bag, he was told he most likely did not need it. Last week he had a consultation with his surgeon, who did his last surgery. There are many questions if he will be covered for the surgeon. But today, they went ahead and scheduled his surgery as it is considered a near emergency situation. So it is this Friday. At this point we will have to pay for the surgeon out of pocket a small fortune. But hoping this gets straightened out by Friday. We believe it is covered. The surgeon is listed in his plan.
The good news...he is happy that he won't miss the launch date of this years Call of Duty Game. Seriously that is what he is happy about. Because last year his boss screwed up, couldn't be there, and David was left in charge of the launch. So now he can "hold this over him" come raise time. He also plans to work from the hospital He is expected to be in the hospital for about a week after the surgery.
Please keep my son in your thoughts this Friday...
Next year I am coming, and I want to be the featured guest...I am pissed at this disease...

Good luck to your son Linda. We'll all be thinking of him and you.

 

[shu 49]

No. Even his first surgery they did not know the intestines attached to the stomach wall, and they had to remove a portion of the wall. With any surgery, of any kind, you can find unknowns once you actually go inside. No test or machine is perfect. They knew last summer that he had the limit of bad intestines, and even 1 more cm would result in a bag. When they did the MRI they saw he did not get any worse. The surgeon even thinks he can get away with a little less than the gastro thought. I think it is better that he had the worse prognosis. He will be there someday, and he adjusted to the idea now, so when it does happen, he will be better about it. And really there is still a slight chance that he will come out of surgery on Friday with a colostomy bag.

Sucks my aunt had that. Praying for him.

 

[LongShanks44]

Not sure everyone associated with this will see my post. I don't want to put it on the board as a new thread. It really is for the crowd that knows about Crohn's.
So all summer I knew that my son in LA was most likely heading for his 2nd surgery. He had a colonoscopy in early August, but they were not able to successfully complete it for the 2nd year in a row as he was too blocked. Last summer they decided to try to medically reduce the blockage. After testing for what was most likely a "false positive" for TB he had to go through 3 months of treatment for TB before he could start his new medication. Treatment for any potential of TB is required by the CDC. He then was able to start a new injectable, Stellara. So August became the time to determine if it had helped, and it had not. At this point he was told, at the age of 35, that he would most likely need an ileostomy, and he would need a bag for the rest of his lifetime; it could not be reversed. They ran some more tests (MRI) and after a couple of weeks of adjusting to the thought of a colostomy bag, he was told he most likely did not need it. Last week he had a consultation with his surgeon, who did his last surgery. There are many questions if he will be covered for the surgeon. But today, they went ahead and scheduled his surgery as it is considered a near emergency situation. So it is this Friday. At this point we will have to pay for the surgeon out of pocket a small fortune. But hoping this gets straightened out by Friday. We believe it is covered. The surgeon is listed in his plan.
The good news...he is happy that he won't miss the launch date of this years Call of Duty Game. Seriously that is what he is happy about. Because last year his boss screwed up, couldn't be there, and David was left in charge of the launch. So now he can "hold this over him" come raise time. He also plans to work from the hospital He is expected to be in the hospital for about a week after the surgery.
Please keep my son in your thoughts this Friday...
Next year I am coming, and I want to be the featured guest...I am pissed at this disease...

Very sorry to hear this. I was diagnosed with UC about 5 years ago which is like crohns twin sister. I had an ileostomy w bag for almost 2 years before my 3rd surgery “take down” this summer for the j pouch. Living with the bag was no fun but it was a hell of a lot better than feeling like i was going to die everyday. You can still live a full, enjoyable, life but it is without a doubt challenging at times.

Please PM me if you’d ever like to chat or your son needs to talk with someone who’s been through it... People would say to me “I cannot imagine what that’s got to be like” and my response was always “No. No you cannot”.

 

[llandz]

Very sorry to hear this. I was diagnosed with UC about 5 years ago which is like crohns twin sister. I had an ileostomy w bag for almost 2 years before my 3rd surgery “take down” this summer for the j pouch. Living with the bag was no fun but it was a hell of a lot better than feeling like i was going to die everyday. You can still live a full, enjoyable, life but it is without a doubt challenging at times.

Please PM me if you’d ever like to chat or your son needs to talk with someone who’s been through it... People would say to me “I cannot imagine what that’s got to be like” and my response was always “No. No you cannot”.

Oh he has been like this for over half of his life. Over 20 years at this point. He is a pro at this unfortunately.

 

[LongShanks44]

Oh he has been like this for over half of his life. Over 20 years at this point. He is a pro at this unfortunately.

Sorry I misinterpreted your post... I sincerely hope he finds some relief soon and the suffering stops. God speed.

 

[OrangeOnions]

Sorry to hear all of this Linda. I will pray all goes well. You will most definitely be a guest speaker if you can make it. Book it!

 

[llandz]

Very sorry to hear this. I was diagnosed with UC about 5 years ago which is like crohns twin sister. I had an ileostomy w bag for almost 2 years before my 3rd surgery “take down” this summer for the j pouch. Living with the bag was no fun but it was a hell of a lot better than feeling like i was going to die everyday. You can still live a full, enjoyable, life but it is without a doubt challenging at times.

Please PM me if you’d ever like to chat or your son needs to talk with someone who’s been through it... People would say to me “I cannot imagine what that’s got to be like” and my response was always “No. No you cannot”.

When he thought he was going to have the bag, he also said anything to feel better. Sorry for all you go through also. It all is terrible to have.