Tuesday, October 30, 2007

Stress has a Tremendous Impact on Crohn's

Stressin out over work, home life and money. I am a mess right now. Subsequently my Crohn's Disease is starting to Flare. It was a real bad day. Hopefully things turn around for me. Sorry for the short and lame post. The latest Humira shot hurt a bit. I am generallya VERY happy person...but latley I find my seslf slipping into what can only be described as depression.

Friday, October 26, 2007

Severe Night Sweats and Waiting for Humira

My Humira shots ran out and there was some confusion reordering. Thankfully my wife Amy and Anita at Dr. Shafran's office have taken care of it for me and my Humira is set to arrive at the house this morning. Since it comes in a cooler (and I live in Florida), my neighbor is coming to grab it off of my front porch this morning. I can barely believe I am saying this, but I can't wait to get home and get that big juicy shot of Humira. I am three days late and sweating so much at night it is unbelievable. Last night night sweats woke me up three times. I ran out of space on my California King sized bed, and ended up going through towels, sweatshirts, etc. I was freezing! Anyways I usually sweat pretty bad again the night I get the shot but it improves after that. I go see Dr. Shafran Monday for a checkup. I am looking forward to it and consider myself lucky to have such a good and caring doctor. Anyone needs a good Crohn's doctor in Central Florida....check out Dr. Ira Shafran in Winter Park, Florida!

David Garrard Story I found Detailing His Crohn's, Surgery and Remicade

(From December 2005)

A vertical scar begins just below David Garrard's navel. He can see it when he lifts up his shirt, when he gets in and out of his Jaguars uniform, when he prepares for bed.

"It's not that bad," Garrard, Jacksonville's new starting quarterback, said Tuesday at Alltel Stadium. "I've seen people with scars all over their stomach. Mine is just about three inches."
Garrard's blemish is a reminder of the Crohn's disease he has fought for two years and of how he is approaching the biggest start of his pro career on Sunday, when the Jaguars (9-3) are host to the undefeated Indianapolis Colts (12-0).

"Even keel," said Garrard, 27, who will make his second consecutive start since Byron Leftwich broke his left ankle Nov. 27. "We're out here playing a game that can be taken away at any time. With me, that almost happened."

If the Colts' Peyton Manning is the best-known quarterback in the N.F.L., Garrard may be its least known, although he faced Manning in his only start as a rookie in 2002. (The Jaguars lost, 20-13.)

Garrard, who was born in East Orange, N.J., and grew up in Durham, N.C., is remembered primarily for being the East Carolina quarterback in a 64-61 double-overtime loss to Leftwich's Marshall team in the GMAC Bowl in 2001.

More than Garrard's ability to escape pressure and make plays with his feet, having Crohn's disease, a chronic inflammation of the intestines, has earned him respect, affection and trust in the Jaguars' locker room.

In January 2004, Garrard began to have severe stomachaches after meals. The pain would subside and reappear, including once when he and his wife, Mary, visited Jaguars tight end Kyle Brady and his wife, Kristi, in St. Augustine, Fla.

"In the off-season one weekend, we went out and had a real nice meal, went back to the place, and he was throwing up all night," Brady said of Garrard on Wednesday. "We were there for some moments that were kind of down and dirty. We saw all of that happening."
Garrard described it as "the most excruciating pain that I have ever felt."
"It knocks you on your knees,"
he said.

Garrard's 6-foot-1, 244-pound frame began shedding weight at the onset of Crohn's, one of several inflammatory bowel diseases that affect 1.4 million Americans, according to the Crohn's and Colitis Foundation of America.
"I had never heard of it until he got it," Leftwich said. "We'd ask him every day: 'What is it? How do you get it?' "

[In a telephone interview on Friday, Dr. James F. Marion, an assistant clinical professor of medicine at the Mount Sinai School of Medicine in Manhattan, said: "We don't understand the essential nature of the disease, which is quite frustrating for the patients and makes it difficult for doctors as well. The symptoms can be subtle or extreme."

He said the inflammation caused by Crohn's could lead to swelling and ulceration of the intestines as the body tries to heal itself. Obstruction and a narrowing of the intestines can occur, as it did with Garrard.]

"Once it starts to scar up, food has a hard time passing through," Garrard said. "It's like a four-lane highway coming into a two-lane highway and bottlenecking. And that's where you get your pain."

"I just thought I had a stomach virus," he added. "It was three months before I asked anyone to check me out."(SAME HERE SAYS SCOTT)

Garrard bottomed out at 215 pounds, his weight as a high school freshman. When a colonoscopy and other tests determined that he had Crohn's, doctors placed him on various drugs, but the sharp pains returned.

He didn't participate in several spring minicamp practices last year, but he sometimes showed up. His teammates saw a gaunt man whose head suddenly looked too big for his body.
"What he went through went beyond football," said Leftwich, leaning on crutches in the locker room. "It was something that dealt with life."

Garrard knows about life, death and divorce. His parents split up when he was 7, and his mother, Shirley Ann, died of breast cancer when he was 14. Garrard then lived with an older brother but was close to his father, Wilmer, until his death two years ago.

Then in May 2004, doctors at the Baptist Medical Center in Jacksonville removed 12 inches of Garrard's intestines, entering just below his navel. The doctors prescribed yet another new drug, Remicade, to try to keep the disease in remission. Garrard began to put on weight.
"I was supposed to take six to eight weeks off, but I was back out in four or five," Garrard said.
He was able to make two starts during the 2004 season - the Jaguars split the games - and doctors monitored him as he prepared for this season.

Every eight weeks, he takes Remicade through an intravenous drip that takes three hours. In August, doctors performed another colonoscopy.
"I didn't have anything in there, any symptoms or any discoloration," Garrard said. "I was totally clean."

[Marion, the Mount Sinai professor, said: "There are other pro sports players who have Crohn's disease that do not necessarily come forward. People don't like to talk about their bowels or bleeding from the rectum. It's taboo to bring this up. But if somebody is able to get the disease under good control and get transitioned into a maintenance regimen, which it appears that David has, there is every reason to expect that they will be entirely themselves."]
It's too early to classify his style as a quarterback, but Garrard has been compared to Steve McNair and Daunte Culpepper, players who can run and throw.

Garrard preserved a victory over the Arizona Cardinals on Nov. 27 and won as a starter last Sunday against the Cleveland Browns. Coach Jack Del Rio said Garrard had stepped in with poise and "has an opportunity to play big time for us right now."
But the Jaguars know him best as the teammate who shared their locker room, disappeared, and shared their locker room again.

"I know how good he is," said Leftwich, standing near Garrard's locker.
Defensive end Paul Spicer looked in Garrard's direction.
"We see that man every day," he said. "We know what he can do. When he gets out there, watch what happens."

-Just thought it was interesting story of an athlete with Crohn's Disease - Scott

Tuesday, October 23, 2007

Humira Pen Versus Shot

As most of you know I take Humira for Crohn's Disease. This blog has had allot of discussion and comments on the Humira Shot versus the Humira Pen. My wife talked to Dr. Shafran's wife today (the office manager and a nurse) because I am out of Humira and due for a shot tomorrow. Anyways she asked about the Humira pen and they told her to stick with the shot because they have had quite a few problems with the pen "misfiring" and the humira not actually making into the patients. Since Amy has been giving me the injections at a faster pace they haven't hurt as much so I am going to stick with the shots. I am still curious about the Humira pen though. Anyways thought I would update you all. Going to Dr. Shafran (Winter Park, Florida) for a checkup and B12 shot monday. Also, the night sweats are coming back pretty strong. It has been a while since I have had bad night sweats, but the past few nights I have been soaking the sheets. Not sure what the deal is there. I think there is a connection with them and needing a Humira shot.

Sunday, October 21, 2007

Red Sox, Stress and Crohn's Disease

Between work stress and watching the Red Sox in a Game 7 ALCS I am hoping to avoid a flare up. I made a successful comeback on the soccer field today. The neck is feeling much better. For those of you in active flare ups...keep your heads up and have a great weekend. I really, really appreciate the positive comments and feedback. Have a great week.

Friday, October 19, 2007

Lupus and Crohn's Disease

Lupus and Crohn's Don't Need to Ruin Your Life
By Candida Bohnne-Eittreim

It's been a long journey of discovery in how to live with both lupus and Crohn's Disease. Both of these are autoimmune disorders that wreak havoc with the body's connective tissues, and in some cases cause death. Because these are incurable and little understood disorders, it has taken major proactiveness on my part in learning how best to cope with the almost constant pain and fatigue they carry with them.

I was first diagnosed with Crohn's Disease in the early '70's. I had been losing weight steadily, and was wracked with severe abdominal pains. My doctor had told me most likely I was suffering from "housewives" syndrome, which he blithely claimed was common among high strung women such as myself. That changed dramatically, when one night bent double with pain, I found I was hemorrhaging badly from my rectum. Admitted to the hospital from the emergency room, I was told I had cancer of the colon, and scheduled for surgery. When I awoke, I was told I had Crohn's Disease, and that it would require lifelong treatment. They had to remove a large piece of colon that was completely blocked by the thickening so common in Crohn's.

The next few years were a nightmare of tests, surgeries and medications more toxic in some cases, than the disease itself. I had started researching everything I could find about this disease, and was horrified to learn that there wasn't much that could be done. There was this enormous well of rage and a good dose of self pity in me during those early years. Rage that the supposedly best medical system in the world couldn't do better, or even answer how or why a person got an autoimmune disorder.

Crohn's Disease involves the digestive tract, from the esophagus to the small bowel. It causes pain, fever, and diarrhea. It can also affect the joints and the eyes, leading to blindness. When it attacks the colon and bowel, it thickens the walls with inflamed tissue, which if left unchecked, can lead to intestinal blockages, which are life threatening. The mechanism for it is the same for all of the autoimmune disorders-the body turns on itself.

In a normal system, if a person experiences a wound or an illness, the T cells and white cells react as antigens which attack the diseased or damaged area, then shut themselves off. In autoimmune disorders, there is a failure to turn off this immune response, resulting in damage that continues, unless through medications it is modified. Most of the drugs used are geared toward damping the response down to healthier levels. Imuran, cyclosporin, Plaquenil, azothioprine and prednisone are often used. All of them have unpleasant side effects, much like those experienced in chemotherapy.

After multiple surgeries, and a rash of severe reactions, I made a decision not to use toxins to treat this disease. Most importantly, I refused to let myself be defined by it. I am much more than the sum of this disease, and refused to give in to it.

About the time I had finally adjusted to living with Crohn's, I began feeling very ill in an odd way. My throat hurt so bad I couldn't eat nor could I swallow anything but ice water. I developed a pain in my right ribs so severe I couldn't walk for a week. The fatigue hit me so badly, I called it "crash and burn". Once it started, I had to lie down, where I'd fall into such a deep sleep, I heard nothing. After 3 weeks of this, I went to my internist, who ran tests, including an ANA (anti-nuclear antigen). When he called me in the following week, he was in tears, and told me I had SLE (systemic lupus erythematosis). I sat there numb, hardly believing I had not one, but two of these strange disorders.

Still struggling, along with my husband to come to terms with this latest happy bit of news, I immediately began researching everything known about SLE. I discovered it's not uncommon for patients with certain autoimmune disorders to have more than one. And in that case it is considered a mixed blessing. The thinking being having mixed connective tissue disorder is often less lethal than having just one. HA! The only blessing I saw was for the pharmaceutical companies that love to do clinical trials on us.

After long talks with my family and others who cope with these disorders, I made a momentous decision. No more cytotoxins or other drugs, save for those that eased the symptoms of daily living. No more fighting with the disease, but a day to day journey of learning to live with it, without impacting everyone around me. This was no easy decision, for SLE attacks the heart, the kidneys, the skin and sometimes the brain. But for me and my family it has turned out to be the right decision.

I started using alternative medicine, including herbal supplements that cause much less side effects, and in most cases have brought me greater relief. I use Co Q- 10 for cardiac support, along with carnitine. Hawthorn for the intermittent claudication of fingers and toes, and an excellent multivitamin daily.

Along with a diet rich in anti-oxidents and exercising to keep joints supple, I bring an attitude of refusing to behave as if I am severely ill with anything.

When I have bad days, instead of fighting it, I relax and try and find things to make life easier. Writing is one of them. Some of my best work has come out of my worst days of pain. Good days are a celebration. They are a little gift of freedom from my old friend-pain. I've learned to live for today, knowing tomorrow isn't promised. To bring the gift of laughter and love to those around me every day-good or bad. Each day I awaken thanking God for the blessing of another day, and every night I thank Him for the gift of these diseases. For through them, my children and others have come to realize that we are only limited by ourselves. Most of all that we have choices when it comes to dealing with the difficult things in life. We can give in to them and die, or we can soldier on and live a life filled with small miracles.

Sunday, October 14, 2007

Staying Positive when you have Crohn's Disease

Hey guys...nothing too much to report here. My stomach is feeling pretty good. Had a Humira shot on Thursday and seem to be doing OK. Pain and cramping have been pretty minimal. Anyways, for those of you that are in active Crohn's flare ups or worse...keep your head up. It will get better. When it hurts it hurts, but keep a positive outlook and you will make things easier on yourself...you can even trick your body into starting to heal. We all know stress is a big factor in leading to Crohn's flare ups. So step back, breathe, and focus on getting better and the positives. Hope you all had a great weekend.

Thursday, October 11, 2007

Humira Shot Tonight

Woot, Woot, time for a Humira Shot. Lots of stress in my life (stress effects my Crohn's Disease in a big way) and I need this shot. A few idiots at my old company are stressin me out...check out my personal (non-crohn's blog) for that. Anyhow, hopefully this Humira shot does the trick. Say your prayers (also for Brandi in Seattle). Big weekend...Red Sox, several church events, maybe the beach..who knows. But if you are struggling guys...have faith.....you can live a normal life with Crohn's Disease. I do it most of the time. I know what it feels like when you aren't. So if you are having issues with Crohn's, having a Crohn's flare up...or know someone that is...let me know. Whether I can help with research, prayers, advice, or just give you a laugh....I am here...you know where to find me. -Scott

Monday, October 8, 2007

Grown Men Don't Poop their Pants (and blog about it)

Ok, so I hinted about a month ago about telling the story of how I pooped my pants. A few people have requested it. So here it is. This is the story of how I shit my pants on a date and successfully cut my underwear off while walking down Broadway in New York City. Away we go.

Let me transport you too a chilly winter night in the early winter. Must have been about 1998. I am living in Connecticut and decide to take a girl I was dating into the city for a night on the town. We enjoy a nice dinner at Gramercy Tavern (strange how many details I remember from this night). We are walking to a play (Rent..UGH) and I innocently try to slip a fart past a turd. Well, I failed miserably and propelled a liquidy stream down my right leg.

Thank the good lord for my 3/4 length suede jacket, which mostly hides the damage. While it isn't too obvious to others, I still have issues to deal with. Great, now what? As panic start to step in, I coolly collect myself and begin to formulate a plan. I will use my Swiss Army Knife to cut my underwear off! BRILLIANT! But wait, the keys jingling are going to give me away. So before I set about this operation, I remove the knife from the key chain. I open it up, slide my hand down the side of Gap Khakis.

Over the course of several blocks and 15 minutes, all while maintaining a conversation on how great the meal was, how awesome Savage Garden and BackStreet Boys are (hey its 1998) I proceed to cut my FAVORITE BOXERS off. And no..despite discussing Backstreet and going to see Rent...I am not gay. So anyhow, I am making progress. It takes another block while I shake, wiggle and shimmy until I smoothly expel the soiled underpants out my pants let and onto the sidewalk in front of a Chinese takeout restaurant!
I look back longingly at my trusty (and dirty) friends, and briefly wonder if I should fess up just so I can rescue them from the feet that will surely trample them (Honey, did you step in dog poo?). Begrudgingly I forge ahead, all the while wondering if I will ever be able to replace them. Never once did my date figure it out. Believe it or not, I went on to marry this woman. Maybe this shitty date should have been a sign of things to come....but that's another story for another blog.

Thursday, October 4, 2007

Remicade Allergy - Remicade For Crohn's Disease Stories

I have gotten some feedback from those that have gotten Remicade infusions for their Crohn's. It reminds me the second time I got remicade. I guess there is a high chance for an allergic reaction if you start on remicade and then stop before you have had a certain number of treatments. I want to say it is four. Anyways, I went to the infusion center in Winter Park (Florida) and got hooked up. I was fine after the test dose, so they turned up the drip. Ooops, I had a pretty severe allergic reaction, breaking out in hives and experiencing shortness of breath. I got loaded up with bendedryl, steroids and antibiotics through my IV. I was unable to return to work and went home extremely doped up.

Here is an interesting article on the success or Humira when Remicade fails:
ROCHESTER, Minn., May 2 (UPI) -- Adalimumab -- sold as Humira -- works on Crohn's disease for those adults who fail on infliximab, sold as Remicade, say Mayo Clinic scientists in Minnesota.

A study of 325 subjects with the disorder who were treated with Humira or placebo, showed that after four weeks 21 percent of the Humira group were in complete remission and 52 percent noted an improvement in their symptoms.
In contrast, only 7 percent of the placebo group went into remission and just 34 percent had fewer symptoms.

The study was done at 52 centers in the United States, Canada, and Europe on patients with moderate to severe Crohn's disease whose symptoms persisted on Remicade or who had developed an allergic reaction to the medication.

"Approximately 50 percent of Crohn's disease patients ... will eventually develop an allergic reaction (to Remicade), need higher doses, or stop responding to the therapy," said researcher William Sandborn. "This study demonstrates that, in the short term, Humira can be safely administered ... to these patients (for) a second chance at remission and a significant improvement in quality of life."

Crohn's disease is an inflammatory, autoimmune disorder of the gastrointestinal tract that produces abdominal pain, fever, nausea, vomiting, weight loss and diarrhea. Currently there is no known cure.

A report on the research was published May 2, 2007 in the online issue of the Annals of Internal Medicine.
UPI May 2, 2007

Another great Remicade Story -
Thirty-two years ago Ginger Gray walked into her doctor's office complaining of abdominal pain, diarrhea, severe weight loss, and overwhelming joint pain. At 19, she hadn't grown an inch since the sixth grade. But her doctor said there was nothing physically wrong with her, and even suggested she seek psychiatric counseling. Fortunately for Gray, she sought another physician's opinion. Based on tests he conducted, the doctor recommended the 4-foot-11-inch Pennsylvania resident begin full-time treatment for Crohn's disease.
"Crohn's disease robbed me of my stamina," Gray says. "It took two years for me to fully regain my strength and weight so that I could begin working again."
Until now, treatment for Crohn's has relied on surgery and anti-inflammatory and other drugs also used to treat other conditions. In August 1998, the Food and Drug Administration licensed the first treatment specifically for Crohn's disease, an incurable and sometimes debilitating inflammation of the bowel.
Remicade (infliximab) is a genetically engineered antibody that blocks inflammation caused by a protein called tumor necrosis factor. After clinical trials showed benefit from Remicade treatment within a two-to-four week period following a single dose, FDA approved the drug for patients with moderate to severe Crohn's disease who have not found relief with other treatments.
"We recognized that [Remicade] had such a dramatic effect on patients," says Barbara Matthews, M.D., a medical officer in FDA's Center for Biologics Evaluation and Research, "that it was given accelerated approval."
Remicade, which is taken intravenously, can decrease the amount of inflammation along the lining of the intestine. Clinical trials also show that Remicade is effective in closing fistulas (abnormal passages or sores between the bowel and skin). Although not a cure, the drug reduces the symptoms in patients who have not responded well to traditional treatments.
"This is an exciting development for two reasons," says R. Balfour Sartor, M.D., professor of medicine, microbiology and immunology at the University of North Carolina, and chairman of the National Scientific Advisory Committee for the Crohn's & Colitis Foundation of America (CCFA). "It is the first therapy for Crohn's disease derived by molecular techniques, and it has the possibility of improving the quality of life for [Crohn's] patients."
But Sartor also cautions that the long-term toxic effects of Remicade are unknown and that the drug is not needed by every Crohn's disease patient. "Two-thirds of the people will have near immediate results," he says, "but only those patients who do not respond to other therapies" are eligible to take the drug. The next step is to maintain a patient's remission after the drug's initial effect has worn off.
Currently, studies are being done to better define the risks and longer-term benefits of Remicade because drug reactions and potential adverse effects from suppressing tumor necrosis factor require further clarification.

- by Carol Lewis, FDA Consumer

Tuesday, October 2, 2007

Top 12 Joys During a Colonoscopy Exam - Let's Get Naked!!! Wooo!

I found this on about.com (written by Mike Durrett): The U.S. Department of Health and Human Services says: "Colonoscopy lets the physician look inside your entire large intestine, from the lowest part, the (you know), all the way up through the colon to the lower end of the small intestine." A long, long, lloonnnnnnnggg, flexible roving tube is inserted with a teensy light, camera, and blower.

12. The pre-show cleansing -- known at my house as "The Bottomless Spit."

11. There's nothing to hit the fan.

10. Anal probe makes you eligible for guest appearance on "South Park."

9. Crack navigation provides little chance of colliding with iceberg.

8. Zany rectal air hose makes you feel you can fly over Macy's parade.

7. Any loose change found is yours!

6. Sedatives hallucination transforms doctor into Jim Henson and you're a Muppet.

5. Don't need to wear dress-up clothes to get pictures taken. Eight-by-10s and wallets prescribed and autographed by physician.

4. That's you on the video monitor -- and, no, you don't have tunnel vision.

3. Intestinal muscle spasms taped for MTV.

2. You have a textbook colon. The bad news: You can only use a school potty.

And the number one joy during a colonoscopy examination:

Medical team refers to you as "The Outback Snakehouse."

Fart and Colonscopy Jokes are Always Funny

I am not sure why, but the old saying "Fart Jokes Are Always Funny" is true. Try telling one and I guarantee you someone giggles. Anyways, this goes back to a bookmark I had from a few years ago. These are (supposedly) actual comments patients have made either during or after colonoscopies. I kind of like #6....Let's hear your "votes"! Next colonoscopy I plan to come up with a new one to add to this list. Be warned Dr. Shafran!

1. "Take it easy, Doc, you're boldly going where no man has gone before."

2. "Find Amelia Earhart yet?"

3. "Can you hear me NOW?"

4. "Oh boy, that was sphincterrific!"

5. "Are we there yet? Are we there yet? Are we there yet?"

6. "You know, in Arkansas, we're now legally married."

7. "Any sign of the trapped miners, Chief?"

8. "You put your left hand in, you take your left hand out. You do the
Hokey Pokey...."

9. "Hey! Now I know how a Muppet feels!"

10. "If your hand doesn't fit, you must acquit!"

11. "Hey, Doc, let me know if you find my dignity."

12. "You used to be an executive at Enron, didn't you?"

AND FINALLY (drum roll and cymbal crash.....)

13. "Could you write me a note for my wife, saying that my head is not, in fact, up there?"

Monday, October 1, 2007

A Typical Crohn's Disease Monday at the Office

Unbelievable pain this morning. Probably from the crappy food choices and crappy beer choices (maybe I should go back to Corona from Natty light and bud light!). Anyway I had serious stomach pain and was productive my mass printing my emails and reading them in stall number 3. I need to see about an easy way to store reading material in the ceiling panel. I HAVE TO have something to read when i poop. I joke but if there is nothing at a friends house I will read their deodorant and hairspray containers. It's embarassing sprinting down the hall with a newspaper, BrandWeek magazine, or other materials. I want to invent little Crohn's books that fit in your pocket. Imagine the newest John Grisham Book - Playing For Pizza). It is AWESOME and I read in about 3 days (thanks for sending it Mom). Also, if you haven't read Bleachers, it is another John Grisham football book that is awesome.

Anyways, would love to hear feedback so feel free to offer up your stories and tips on dealing with crohn's at work.

Crohn's Disease Blog