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Hockey player goes public with UC and his desire to help.

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Ulcerative Colitis
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Posted 4/8/2009 8:24 AM (GMT 0)
http://www.nhl.com/ice/news.htm?id=416969

Website said...
After going to numerous specialists and finally finding the right medicine, Pisani started to get healthy again. But he didn't stop there. Not only did he divulge his illness to the media, he decided to use his status as an athlete and public figure to help others suffering from ulcerative colitis. Pisani started to visit other patients and speak to them about their battles with the disease.

"When you realize that kids were suffering the way I did, I just can't imagine how they do it," Pisani said. "I mean, I'm an athlete, in top shape and it beat me down, so what happens to a poor child?"

Pisani figured that if he could help show these children and as many ulcerative colitis patients as possible that even pro athletes share their suffering and feelings, maybe he could help them battle through and also help further research on the disease. Last month, Pisani teamed with Centocor Ortho Biotech Inc. and their "In the Zone for UC" campaign to form the "Shoot and Score Against Ulcerative Colitis" program. For each point Pisani has scored or scores in the remaining games this season, Centocor Ortho Biotech Inc will donate $5,000 to the Crohn's & Colitis Foundation of America.

Found this on the homepage of nhl.com. It's nice to see sports figures that can act as role models, raise awareness, and show what it's like to struggle with UC in the public light. It's unfortunate that anyone comes down with such an abomination, but good for him for having the courage and ability to use his otherwise good fortune to help battle against it.

And who knows, maybe the stem cell research will provide a boost in our quest for amelioration one day. Just thought I'd share.

Cheers.
Posted 4/8/2009 11:47 AM (GMT 0)
:) Very nice! Not that he has it but he is willing to let others know the battle we face. Thank you for sharing!
Posted 4/8/2009 12:09 PM (GMT 0)
I've been following his story since it first came out and it's great that he's back to playing well, and also giving back to the community. We need more public figures who have UC to speak about it so that there's more public awareness, and hopefully increased funding towards finding a cure.
Posted 4/8/2009 3:28 PM (GMT 0)
Wow, that's great. I hope he scores A LOT of goals!!!
Posted 4/8/2009 4:19 PM (GMT 0)
Um, saw, just about everything about UC could make him unable to play hockey. There's no way I would have been able to play when I was flaring so badly. I barely was able to take care of myself, and definitely couldn't take care of my son. My husband definitely had more than his share of baby care and housework when I was sick. Could you have played hockey when you were in so much pain? Doubful.
Posted 4/8/2009 4:52 PM (GMT 0)
Good for him! I often wonder how many celebrities and athletes are dealing with UC and don't come forward. I know Shannon Doherty has Crohn's. When I read about Josh Hartnett being hospitalized for stomach pains I thought to myself, I wonder if he has IBD?

www.people.com/people/article/0,,20270153,00.html
Posted 4/8/2009 5:10 PM (GMT 0)
I'm pretty sure Theron Fleury might have missed a few games due to his crohn's...he had a hard time dealing with getting sick with crohn's and hit the alcohol really hard, he had to recover from the alcohol addiction on top of battling CD...he now runs a flooring business with some of his siblings (and wife too I think) in Calgary. But he also started up the "Golfing for Crohn's and Colitis tournament" they still have every yr to raise money for our disease.

:)
Posted 4/8/2009 5:20 PM (GMT 0)
Oh, I see, saw. I was definitely too sick to do something as physically taxing as playing hockey for longer than 45 days, as I'm sure many other people who have UC are. I didn't start on pred right away, though, because I was hoping the 5ASAs alone would work. He might want to avoid pred because of the osteoporosis risk...brittle bones and hockey aren't a good match!
Posted 4/8/2009 5:50 PM (GMT 0)
Actually doing muscle and bone strengthening exercises/sports are a good way to keep osteo and arthritis from hitting IBDers quickly, because Pisani is already in great physical condition he has a better chance at keeping osteo and arthritis at bay compared to those that don't exercise regularly or are involved in sports.

IBD can hit hard and you certainly have to listen to your body and rest when you need it at the same time turning into a couch potatoe will only end up putting you at risk for all around deterioration of your health.


:)
Posted 4/8/2009 6:07 PM (GMT 0)
Oh, I wasn't saying that not exercising is good, I was just saying that hockey is a physical sport (you know, all that slamming each other into the walls and the ice) and even people without osteoporosis are at a pretty high risk of getting a fracture.  So, because of that, he might especially want to avoid prednisone, even though it can bring immediate relief. 
Posted 4/8/2009 6:19 PM (GMT 0)
Yes, he does have to be especially careful now...plus alot of people (saw included) don't realize that for professional athletes, including hockey, it's not just about being laid back and doing nothing before hitting the ice, those hockey players do intense conditioning during days they don't play a game in order to be fit enough to handle being on the ice.

Pisani may have no choice but to go on pred but he'd be working with sports trained docs that are aware of these things to help guide him when it comes to decision making as to whether he should be hitting the ice and the workout room or not...he's in good hands (probably better than most of us LOL).  Plus, it's long term pred use that is more prone to causing bone/joint issues, since he's never been on pred before, chances are if he's on it right now and is continuing to play he'll be okay even if he does get smacked into the boards.

:)
Posted 4/8/2009 6:51 PM (GMT 0)

Hi Brian,

You have a cool web page, I'm from MI too, grew up in Milford! Are you rooting for the AI from your hometown, what's his name Jeff? I can't remember, but he's very soulful and I like that!

You have a lot of hobbies and interests that very good, it will keep your mind of your butt!  LOL

Linda

Posted 4/8/2009 6:52 PM (GMT 0)
Hi Bryan again, sorry I didn't look at the spelling of your name more closely. Why do you have Hailey's letter on your signature? I talked to her a lot and did the rochephin shot, Omnicef antibiotics and then the nystantin for yeast. Did you do all this too?

Linda

Posted 4/10/2009 8:42 AM (GMT 0)
Hi Linda, sorry for the late reply. Since I've been healthy, I haven't been frequenting these boards often. Though I frequently recommend this place to others I come in contact with that have either UC or Crohn's. /aside

I live in Commerce Twp., right next to Milford! Small world :)

I don't know what you mean by AI. First thing that comes to my mind is Allen Iverson, of the Detroit Pistons. But I haven't followed basketball so closely this year, and I heard he's injured for the season and leaving after it's over.

I did not try any of those medications. I put Hailey's letter in my signature to support her cause. I don't remember the specifics any longer as that was over a year ago, but from what I recall, she had a tragic case with her young child having UC, and there seemed to be a bit of a brouhaha on these forums, and in the end, I thought she was being mistreated. So I put her in my sig. to show my support.

My treatments (by comparison) have been, chronologically:
Prednisone + Colazal
->
Colazal + AMP
->
Colazal + Canasa (insurance and finances covered the drugs, not the AMP)
->
AMP since before oct 2007. = Remission since then.

As a last thought, I haven't combed through these forums enough. I don't find them terribly user friendly, as far as archiving and organizing. IE - I had to browse back to page 3 already to find this post, just to see if there were any replies (good thing I did :). But from the times I've been on here, I'm surprised that I haven't seen anyone else have any sort of success story off of AMP. I wonder what other people's remissions are like, if they're common, and how healthy they are when they hit 'em. If they're not symptom-free, I feel like they're missing out. I can't speak highly enough about it, but in doing so, I feel like I get marginalized by sounding like a spokesman or something. I wonder if maybe my UC is of a certain type that make me lucky enough to be treated by AMP, or if enough people just don't try it or know about it. I don't know how to remedy that. I'm certainly happy with my progress. I feel that others could benefit too, but I'm sort of stuck not talking about it. All I can do is hope they try it, and forget about it. But it feels like a burden to know how I've been fixed, and to keep it to myself.

But I hope you're all doing well. And thanks for letting me know about Theron Fleury, pb4. And maybe Josh Hartnett will have the unfortunate task of being an IBD spokesman. That would also suck, but we could use the support and help.
Posted 4/12/2009 2:31 AM (GMT 0)
Is he doing livingwithUC.com commercials? Because I just saw a hockey player talking about that website on a TV commercial. I almost fell out of my chair when I saw it! shocked
Posted 4/15/2009 2:00 AM (GMT 0)
designer marc jacobs also has UC and is very open about it!
Posted 4/16/2009 3:37 AM (GMT 0)
Here's a list of "celebs" with IBD issues: crohn-colitis.hu/eng/famous-people-with-ibd.php.

JFK, yo!
Posted 4/16/2009 5:27 AM (GMT 0)
Didn't know marc jacobs has IBD...I've seen old links that list famous people with IBD but never saw him on any of them.

:)
Posted 4/16/2009 11:36 AM (GMT 0)
I read an article in some fashion mag a few months back where Marc Jacobs discussed having ulcerative colitis; his father had it too.

A couple other well-known people I read about with UC who weren't already mentioned in the earlier posts are Bob Schieffer (CBS News - Face the nation), and Shinzo Abe (former Prime Minister of Japan).

Steve Redgrave was diagnosed with UC before the Barcelona Olympics, and it's great that he still competed very successfully for years after that.
Posted 4/16/2009 11:42 AM (GMT 0)
http://www.jpouch.net/2008/11/24/marc-jacobs-has-uc/

As Mark and Megan point out, Marc contributes his UC to poor eating habits, which isn't the case for everyone and makes UC look like it's only based on diet.

And there's a comedian, Ben Morrison, who has Crohn's. Some of his stuff is up on youtube.

Posted 5/1/2009 9:25 PM (GMT 0)
Previously, I'd added some more names of famous people with UC/IBD on this thread, and I just read about one more 'celebrity' to add to the list.

Tai Shan (the Giant Panda at the National Zoo in DC) has colitis, and had a colonoscopy recently. I feel for him, and hope it all went well!

http://www.washingtonpost.com/wp-dyn/content/article/2009/05/01/AR2009050102062.html

Tai Shan's a local favorite, and if any of you plan on coming to the DC area, then visit him at the zoo. It's well worth it.
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