Thursday, October 30, 2008

Crohn's Disease and Arthritis - Anyone Else Feel my Pain?

Many Crohn's patients suffer from Arthritis as well (usually Enteropathic). It is my understanding that enteropathic arthritis usually affects a large lower extremity joint and often occurs when the bowel disease is flaring. I am an avid athlete and am constantly suffering from joint pain. It moves around from spot to spot (lots in knees and ankles), however it is ALWAYS in my hands and fingers. They are constantly sore and swollen. I am also having severe foot pain. I am experiencing my second bout where the inside foot/ankle is consistently locking while i walk, causing almost unbearable pain. I am wondering if I have a stress frature of some sort??

An excellent discussion on the topic can be found at the medhelp site.

Anyways, I have touched on this subject before, but it is a hot topic for me right now and would love to know who else has Crohn's and Arthritis and what you do to treat it.

Wednesday, October 29, 2008

I am a (kinda, sorta) famous blogger!

So on Monday the web traffic to my marathon training and running blog goes through the roof. I check out my stats to see where it is coming from and it is a combo of Wall Street Journal online and direct address entry. As it turns out, my running blog was the #1 feature on their blog watch section, both in print and online. Anyways, I was pretty excited, but I really wish they had focused on this blog instead. Either way, I am excited that they did mention Crohn's Disease. "As Mr. Roy chronicles his training regimen, readers see him deal with the challenges that every dedicated runner faces, like a busy schedule and nagging injuries, as well as the added burden of Crohn's disease, a chronic inflammation of the digestive tract."

Check out the article here.

Friday, October 24, 2008

Doctor's Appointment, Vitamins and More Oh My!

Had a doctor's appointment at Dr. Shafran's office today to stay on track for the osiris prochymal stem cell study. My stomach has been pretty rough lately, lots of cramping and pain. I think I may be in for the next round of stem cell infusions.

I have a lot of trouble with vitamins. Maybe it is just me, but multi-vitamins tend to aggravate my stomach (cough, cough diarrhea!). I found a new multi-vitamin in a liquid format that seems to work really well for me. If you are looking for a good vitamin..check out Nature's Plan, Source of Life vitamins. I found them onsale for 40% off at Amazon. (click the link to the left). Anyone else have any suggestions for good vitamins for people with Crohn's disease?

Monday, October 20, 2008

I have Crohn's, Should I Get a Flu Shot?

This is a question that I had to ask myself this morning. Prior to researching this issue, my suspicion was that anyone taking Remicade, Imuran or immunosuppresive Crohn's drugs should avoid. Theory being that if your immune system is weakened do you really want to be injected with the flu virus. Partially correct it seems. The flu shot contains a strain that is not a live flu virus, but most doctors seem to be recommending you wit one week after your infustion. See below, but the answer seems to be yes, you can get a flu shot if you have Crohn's.

People with inflammatory bowel disease (IBD) who are taking immunosuppressive drugs fall into a high risk group. Some immunosuppressive drugs include:
Azathioprine (Imuran)
Cyclosporine (Neoral, Sandimmune)
Mercaptopurine (Purinethol, 6-MP)

If you are taking any of these drugs, or your immune system is being suppressed by another drug, the optimum time to get vaccinated against the flu is from late October to mid-November. A flu shot takes one to two weeks to be effective.
Also, any person with IBD, even if they are not taking immunosuppressive drugs, might want to talk to a doctor about getting a flu shot. As with any chronic condition, IBD causes the body to be under stress. This makes it harder for the body to fight off both colds and the flu. After all, struggling through one major health problem is bad enough without complications from other illnesses.

Anyone who lives with a high-risk person should get the flu shot along with the high risk individual.

Anyways, I am getting my flu shot today.

Thursday, October 16, 2008

Tysabri, a Crohn's Drug by Elan Corp. - ELan Closing Offices

UPDATE December 12th -
Biotechnology firm Elan Corp. said Friday it is closing its offices in New York and Tokyo during the first quarter as it realigns operations.
Elan said it will eliminate an unspecified number of positions and revise its marketing activities for Tysabri as a treatment for Crohn's disease.
Elan said it will direct additional capital toward research and development. Elan is transitioning from a traditional sales model to one based on clinical support and education, the company said in a statement.

First, about the drug: Tysabri is an antibody, a protein that triggers specific reactions from the body's immune system. Doctors think it helps some people with MS or Crohn's because of way it interacts with natural chemical markers on the surface of cells affected by the diseases. The same markers are found on the myeloma cells that Mr. Baron has, so doctors think the drug may help treat that cancer.

The issue: Dallas lawyer and Democratic Party fundraiser Fred Baron is dying of cancer -- and fighting a drug company for use of an experimental medication, according to his son, Andrew Baron.

Mr. Baron's family says it has enlisted some famous names to lobby on his behalf: Lance Armstrong, the bicyclist and cancer survivor; Bill and Hillary Rodham Clinton; Sen. John Kerry, D-Mass; and Sen. Edward Kennedy, D-Mass., who has brain cancer.

No one can accuse Biogen Idec of playing favorites. The company has been under assault by luminaries from Bill and Hillary Clinton to Lance Armstrong, who are trying to get Biogen's Tysabri drug for Fred Baron, a legal bigwig who's dying of multiple myeloma. Tysabri is in Phase I testing in multiple myeloma patients. But Baron doesn't meet the trial criteria. And Biogen has an ironclad policy of refusing the med for so-called "compassionate use."

Biogen's reasoning is rooted in Tysabri's complex biography. As you all know, the drug was hailed as a major breakthrough for multiple sclerosis patients after its first launch, but then was pulled off the market in February 2005 because of links to a potentially fatal brain infection, PML. The drug was reintroduced in 2006 under a restrictive access program. Since then, Tysabri has won a broader market, with an approval to treat Crohn's disease. It's also seen a couple of new cases of PML in Europe; those cases were added to Tysabri's labeling.

Biogen CEO Jim Mullen has held up under the assault of publicity ginned up on Baron's behalf. Calls from the likes of Armstrong, Ted Kennedy, the Clintons, John Kerry and Henry Waxman haven't swayed him. The company doesn't want to set a precedent by allowing Baron to use Tysabri, given the PML risks--and the risk to Tysabri's future should Baron experience an adverse reaction. "We want to protect access for patients who are on the drug now and rely on it," a Biogen spokeswoman told Pharmalot. "We feel like we can't make an exception in this case."

Tuesday, October 14, 2008

Crohn's and Drinking, Crohn's and Sex - Both Can make for Funny Crohn's Stories for Comedian Ben Morrison

Funny interview I saw on Healthtalk...Comedian and Crohn's Patient Ben Morrison. If you read this blog, then be sure to check out the highlights of the interview below. A link to the full transcript is at the end id you enjoy. Comedian Ben Morrison broaches touchy subjects of sex and crohn's disease, drinking and Crohn's and more. Pretty good stories and jokes on the not so funny subject of Crohn's Disease

Rick:And you mean drinking alcohol?

Mr. Morrison:Yeah. I mean, if we are being honest right here especially for dating, what do you do on a date? You go to a bar. So that's part of the equation too, as far as what people do on dates, what can and can't you do and how will that affect it. I have vivid memories of being back in New York, and a girl that I was seeing was waiting in my bedroom, and we were going to get intimate. And I remember being in the bathroom, and at that point, the obstruction had flared up again like there was a baby in my stomach. I could see it. Whenever I obstruct, I distend, like my stomach sticks out. And moving hurts because, basically 30-some odd feet of intestine above the actual colon is filled, and it ain't going anywhere, so moving hurts.

And, you know, I don't know how you make love, but I like to move around a little bit. And it's kind of difficult when, (a) you are worried about farting. When you jostle enough, it's going to happen. And, (b), you're like I don't really know if I can enjoy this much when I feel like I have ten extra pounds in me. So I remember being in the bathroom just on the can just hoping I can get something out so I could enjoy this night of sex.

Rick: When it comes to communication, Ben, do you think that men and women communicate differently and that it might be especially tough for men?

Mr. Morrison: For women, it is tough. I know for a fact it is, because guys at the very least have the benefit of punching their best friend in the arm and farting on his face, which is really fun. I love it. It's a lot of fun to do. And any guy knows that. Girls don't.

I don't even think the girls fart. I mean, I know they do. I don't really hear it much. I know it must happen. But that puts them, unfortunately, at a definite conversational disadvantage because there is no societal, accepted humorous way to even tell that, “Oh, hey, that was me. You might want to leave the room for the next ten minutes.”

So yeah, it makes it more difficult. But I swear to you if I met a girl who has Crohn's or whatever, and just was hanging out with me and just went like, “Man, you would not believe what I did to that toilet,” I think I would be in love, you know. The confidence that shows is huge, and confidence is everything in the world, at least as far as your advancement in it.

Rick: But what about that urge to immediately go?

Mr. Morrison:If that is when they cut out your ileum, then yeah, I have had it. But as far as external accoutrements, no.
But the need to go, my answer to that is pretty clear. Go to the bathroom right before walking in the bedroom. Like if you are on the bed and start kissing and clothes start coming off, say, look into her eyes and say I will be right back. And then run in the bathroom, brush your teeth, smell better than when you left, and use the bathroom so you know that whatever might be residing in your colon ain't. So if you feel like you have to go, it doesn't matter. Nothing is going to come out because there's nothing there. So, you know, worry less about that actual sensation than what would happen if that were an actual problem. Does that make sense?
The thing is, no one really minds you excusing yourself to go to the bathroom. At the risk of getting a little dirty here, they are like, “Oh, he's probably going to go to the bathroom and clean himself up a little bit.” No one minds that. Especially before sex.

Rick:Let's get a question from Washington State. “When you wanted to get intimate with a woman, have you ever had trouble getting an erection because you were so worn out from your symptoms or because you were in pain? And if so, how did you handle the situation?”

Mr. Morrison:Well, that's a tough situation. I've certainly been in that situation. Every guy has. If you haven't, you're lying. I mean if I am distended, like specifically if I'm really bloated, if I am obstructing for a couple days and my stomach begins to push out, I will steer myself away from organizing a wild night of sex. And if you are dating someone - it's not like an I need to perform right now type of thing, wait until the morning. Give yourself a good night's sleep.
And if it's a one-night stand, which I have certainly had, and as long as we are talking about it, that's a much trickier situation, and you might have to bite the bullet and just say, “Look, this isn't going to happen right now.” Can I take care of you?

Full article here:

Monday, October 13, 2008

Ayr United Scottish Soccer Player (David Gillies) from Battles Crohn's

Being a soccer player with Crohn's Disease myself, I can appreciate the story of David Gillies, below. It is hard enough watching playing local co-ed soccer with stomach cramps, dehydration, malnourishment, lack of iron, etc...So I have allot of respect for professional atletes with Crohn's disease. Most of my followers know that based on my man-crush on David Garrard. Other Athletes with Crohn's - Obby Khan, Tairia Flowers, Carrie Johnson, Theo Fleury, Shane Corson.

Ayr Utd star David Gillies' battle to beat pain of Crohn's Disease
By Maria Croce, Daily Record

AYR United striker David Gillies was warned he might never play football again after being diagnosed with bowel disease Crohn's. But he vowed to prove doctors wrong and now he wants to inspire other sufferers to follow their dreams rather than give in to the condition.

David, 25, and girlfriend Leanne Robbie, 23, live in Ayr with their four-year-old son Brandon.
They're expecting another child and have much to celebrate now David's fit again. But last year it was a different story with David facing the prospect of losing his footballing career just as it was about to take off.

Last June he began suffering crippling cramps in his stomach. "It felt like a really sharp pain - like a knife being twisted in my stomach," he said. "It would last a couple of seconds and take my breath away. Sometimes it would happen when I was training - but it was most days."
But he battled through his football training while doctors were baffled by his condition.
"It took forever to find out what was wrong with me," explained David.

"Doctors said it went against me because I was so fit and played football - that made it difficult to diagnose because I continued to train even though I was in pain.

"I pushed myself through. And when I went to the doctor they'd say, 'On a scale of one to 10, what's the pain like?' And I'd say, '10'. But he'd look at my notes and say, 'It can't be a10 because you're training every day'. When you play sports you just get used to playing with injuries. I was enjoying it so I kept doing it and tried to ignore the pain.

"I can remember the day it started in June. One evening I just threw up at home but I felt fine the next day and went training. "I was with Airdrie and although I trained fine, I started getting stomach cramps and could hear my stomach gurgling. I thought it was because I'd changed my diet and started eating more healthily.

"But then four weeks into the season it got worse. I went to the doctors but they told me it was a stomach bug. But the pain kept returning."
Over the next six months David went to hospital six times for investigations including a barium X-ray.

"I'd been playing with Auchinleck juniors and this was my big move to Airdrie," he explained. "Before I'd been scoring lots of goals. But I went to Airdrie and ended up on the subs' bench. I felt I was so much better than I was showing. I couldn't make excuses for feeling terrible, so I'd just try to train. But I knew I wouldn't be able to last 90 minutes playing because I felt so bad."
Then in December he underwent an endoscopy. A tiny telescope was used to look inside his intestine - where doctors discovered a blockage.

"I remember hearing the doctor saying, 'What's that?' during the procedure. They weren't expecting a blockage, but the camera couldn't get through.
"Even after that, they still didn't know what it was at first. I found out afterwards doctors had thought it could be cancer.

"I must admit when I heard their reaction to the blockage I feared the worst and assumed it must be cancer. I was told to stay at home for a week. But I'm optimistic and told myself no matter what was wrong I'd get through it.

"Then a few days later when they told me it was Chron's it was a relief in a way to finally know what was wrong and know it wasn't cancer. But I didn't know that much about the condition - although I knew there was no real cure. And I was warned I'd probably need an operation.

"My first question was whether I'd have a colostomy bag. Doctors said I might need one as a temporary measure - but luckily that didn't happen.
"Then doctors told me I wouldn't be able to play football again. They said it was hard to believe I'd ever be fit enough to play any football again.

"But I refused to believe them and vowed to play again. Looking back I can see why they thought I'd never play again.
But then I felt they didn't know what I was capable of doing.
"I thought nothing can be worse than what I've already been through. But I did wonder a few times whether it was all worth it to keep pushing myself to play.

"I'm also a qualified plumber and have my own plumbing business so at least I knew I had another job to do.
"My girlfriend Leanne would watch me in pain and question why I was putting myself through it just to play football.

"But I always wanted to be a footballer and I love playing. When I got the chance to play for Airdrie last summer it was a massive step because it was full-time. But then it took the shine off it because I started to feel really ill. I couldn't enjoy it as much as I should have."
David underwent an operation on December 23 to remove part of his intestine and got home on Christmas day.

He discovered his heart had momentarily stopped during the procedure. "They under-estimated how slow my heartbeat was because I was fit. I told the boys at football afterwards and they nicknamed me 'Death'."

He has to take special drinks, is free of pain and was back playing two months later for Airdrie.
David feels he's finally fit again and has signed for Ayr United. He jumped at the chance to talk to youngsters with Crohn's (chrones, chron's, chrones, crones).

He spoke at the Glasgow Science Centre at an event by the Catherine McEwan Foundation - set up by Scot Derek McEwan in memory of his late mother, who suffered from Crohn's.
The foundation's aim is to help young Scots with the condition and work with the charity the National Association for Colitis and Crohn's.
Inflammatory bowel diseases like Crohn's and ulcerative colitis affect about one in 400 people in the UK.

Diagnosis is usually made between the age of 10 and 40 and you have a higher chance of developing either illness if you have a close relative with the condition.
Crohn's causes inflammation of any part of the gut - the oesophagus, stomach and small and large intestine. Typical symptoms can include pain, ulcers, diarrhoea and feeling unwell.
The outlook depends on which part of the gut that's affected and the severity and frequency of symptoms. But most people will require surgery at some point.

For David the future is bright. "It doesn't hold me back at all now," he explained.
"And when I spoke to the young people it was good to hear I'd given them hope. I heard that a lot of kids think that once they've got it they can't do much - but that's really not the case. There are lots of different medications you can take to help you lead a normal life. I got this at 24 - but
I felt for the kids who were so much younger finding out they've got it.

"But gold medalist rower Steve Redgrave has got it too. He's an inspiration - I just play for Ayr United. I wanted to say to the kids with Crohn's not to give up their dreams."

Wednesday, October 8, 2008

Centocor Claims Promising Results for Remicade to Treat Crohn's

Centocor has claimed promising results from a clinical study of Remicade in the treatment of Crohn's disease.

The Johnson & Johnson company said the Sonic trial has shown that more patients taking either Remicade alone or together with azathioprine experienced steroid-free remission and mucosal healing, compared to those receiving azathioprine alone.At week 26, 57 per cent of patients receiving Remicade combination therapy and 44 per cent receiving it as a monotherapy achieved steroid-free remission, the firm said, compared with a figure of 31 per cent of patients receiving azathioprine alone."

Findings from the Sonic trial have the potential to challenge the treatment protocol for Crohn's disease as these data show that introducing Remicade earlier may result in more patients achieving steroid-free remission and complete mucosal healing," suggested lead investigator Dr Jean-Frederic Colombel, professor of hepatogastroenterology at Centre Hospitalier Universitaire in Lille.

According to Dr Colombel, the results reinforced the efficacy and safety profile of the medicine. NHS Direct states that Crohn's disease is an inflammatory condition which can affect any part of the gut and affects approximately one in 1,500 people.

Monday, October 6, 2008

My day to gripe about Crohn's Disease (Another Crohn's Disease Sucks story)

Ok, I will make this short. Crohn's disease sucks ass!

Had a great weekend...enjoyed some good food (nothing towards the top of the foods Crohn's patients should avoid list) and drank a few beers each night. A few...not 2 or 3, but not 20 or 30. All weekend I pretty much planned on getting good sleep Sunday night so I could start the week rested. Yeah right, I got in bed at 10:30 and immideately felt pain and pressure. You guys with Crohn's know exactly what I mean. Long story short, I fell asleep sometime after 3 am, only to wake up at 7 still hurting.

So the postive take away is that I am (with help, support and a teamate) turning over a new leaf and focusing on eating better and drinking less beer! There I am done. Thanks for reading the blog. Oh, and by the way, I relaunched, my personal website.

Extreme Makeover: Home Edition - Crohn's Disease Story

I didn't get a chance to see it, but two of the people on Extreme Makeover Home Edition last night suffer from Crohn's Disease. Did anyone see it? Side note, I participated on the Extreme Makeover Home Edition project in Orlando, and actually created the website and much of the content.

When the Akers family of West Chester were selected by the show for a new home in July, there was a lot of attention on the two Akers' girls. They are living with Spinal Muscular Atrophy, a disease that causes their muscles to deteriorate.

The father Greg Akers and son Christian Akers also have health problems. They have Crohn's disease. It's a painful, unpredictable bowel disease that attacks the digestive system.
"It's like having the flu for weeks, months," said Shellie Doub, a Liberty Township woman who has two children with Crohn's disease.

"It really limits what they can do," said Shellie Doub of Liberty Township.

"If people could just extend those little kindnesses," said Doub, "to just come over and watch a video with them instead of be disappointed that they can't go out and play paintball or do the things other kids are doing."

Rachel Spradlin of the Cincinnati Area Crohn's and Colitis Foundation says 1.4 million Americans have been diagnosed with Crohn's or colitis. The two diseases are similar.
Spradlin said when the diseases are in remission you can live a normal life.
Medicine can reduce symptoms or the time between attacks but there is no cure.
She said people don't know much about Crohn's and colitis because it's not something people feel comfortable talking about.

"It's very personal," said Spradlin. "People don't go around saying they've been in the bathroom 30 times that day."

Wednesday, October 1, 2008

Crohn's Disease Tattoo and a 9 year old's Definition of Crohn's

So my ex got a blue Crohn's disease ribbon tattoo on her foot, which has since been covered up. Thank God. But if anyone has a Crohn's Disease related tattoo I would love to see it.

Also I had to share the story of when she just asked her 9 year old what Crohn's disease was. His response: "Crohn's Disease is a disease that makes you crap yourself."

Update: I did find one on that represents the guy's battle with Crohn's. Click the crohn's tattoo image for details.

Crohn's Disease Blog