Chronnies Chatter
15 March 2002
We have had a REALLY great response from people and their catching up articles. It is great to see what is happening with everyone especially since we don't all get to chat all the time. Keep them coming in. Please don't forget the Anniversary Issue - we need your tips how you deal with your disease. It might be something we can send a newbie who has a ton of questions and WOW here are the answers that you have given. Please make sure when you send it that you add your "chat" name so that you are properly credited. Don't forget Jan's bowl a thon on March 24. She did a big write up about what is going on with her, and I can't help but admire her tenacity with all that she is going through, that 11 people and herself included are going to bowl for CCFA. We got a GREAT slogan from Carrie and are going to try to get the T- shirt for her before then. Thanks for all the support and if you have any suggestions for the chat, please let me know – Debbie
Tom’s Recommended Links:
Once again there are a lot of viruses, both real and fake on the computer. Here's another good site with a number of links to check out anything you may suspect or wonder about. This one came from Sandra !!
http://virtualsalt.com/warning.htm
For those of you that love to feed or even just watch birds around your home, here's a site with tons of information about almost all aspects of birds. It even had free plans to build birdhouses. Click on it and explore.
Catching up with Roy:
Roy’s Runs (Roy a.k.a. rcspe)
I started running in my junior year in high school, (the manager of the cross country team was a cute girl I had a crush on). The next year all of my friends joined as well and we had a blast. Going swimming when our runs took us past a pond, stopping for canals when we ran past a bakery, playing Ultimate Frisbee before practice, etc. I had never been a member of an organized sport before and I loved it. I am no jock by any means. In my senior year I had improved enough to get my varsity letter in cross country and track.
I ran off and on since then, occasionally running in a road race, but mostly for the exercise. After my bowel resection in 1988, I started experiencing pain in my right side (where the surgery was) so I started biking, but then I developed a fistula and that put an end to the biking. Eventually, the pain in my side went away and I was able to enjoy running again.
I started running again (after I ran out of excuses not to) in April 2001. My long term goal is to run a full marathon (that’s 26.2 miles folks). The problem was I couldn’t run 2 miles, let alone 26. Eventually I was able to get the mileage in and ran the Hartford Half Marathon in October. What a great experience that was. The night before the race, I talked to Bill Rodgers (4 time winner of both the Boston and NYC Marathons) for half an hour. Race day was exciting. Everyone was there to have a good time. With 10,000 runners, 9,950 of them knew there was no way that they would win. People like us run for the fun of it. Because of that, everyone is willing to help each other, give encouragement, share food, etc. It is like going out for a run with 10,000 of your closest friends. The full and half marathons start together and follow the same course for the first five miles. Every one is talking to each other, giving advice or tidbits of information. The volunteers handed out water every couple of miles or were just on the sidelines clapping and cheering. A dozen bands lined the route playing everything form Jazz to bagpipes. The course is fairly flat and I ran it in about the time I thought it would take (just over 2 hrs. After the race, it was one big party, with free food and beer for the runners. I even got a massage after the race. I wasn’t used to running 13 miles so I was sore for a few weeks, but I am back in the groove now.
I enjoyed it so much, I volunteered at he NYC marathon a few weeks after the Hartford race. I handed out the runners personal belongings with a UPS driver and his family (they use 65 UPS trucks to take the runner’s stuff from the start on Staten Island to the finish in Central Park). While in New York I saw Mike Ditka, Gregory Hines and Nicole Kidman on the street. Because it was less than 2 months after 9-11, everyone still was out to enjoy themselves, but there was a somber undertone to everything. It actually felt like everyone was more at peace with themselves and more reflective.
I guess the question is why do I run? The answer is both simple and complicated. First of all, I enjoy it. I like being alone with my thoughts (but not lonely). I get a sense of accomplishment when I finish a long run, climb a steep hill or add another mile to my long run. Another big part of it is I run to get in shape. My uncle had passed away in his 30’s (I will turn 40 in April). I love the fresh air and the “runner’s high” I get when the endorphins kick in. The first 2 miles of any run are just terrible. The muscles are all tight, breathing is hard and the heart feels like it is ready to explode. Then all of a sudden, my body has warmed up and I have run 6 miles. It’s great.
Jokes!
Bud and Jim – Thanks to Dave a.k.a. Mappy
Bud and Jim are a couple of drinking buddies who work as airplane mechanics in Atlanta. One day the airport is fogged-in and they're stuck in the hanger with nothing to do. Bud says, "Man, I wish we had something to drink." Jim says, "Me, too. Y'know, I heard you can drink jet fuel and get a buzz. You wanna try it?" So they pour themselves a couple of glasses of high octane hooch and get completely smashed. The next morning Bud wakes up and is surprised at how good he feels. In fact, he feels great. No hangover. No bad side effects. Nothing.
Then the phone rings. It's Jim.
Jim:
Hey, how do you feel this morning?
Bud:
I feel great. How about you?
Jim:
I feel great, too. You don't have a hangover?
Bud:
No, that jet fuel is great stuff, no hangovers, nothing! We oughta do
this more often.
Jim:
Yeah, well, there's just one thing....
Bud:
What's that?
Jim:
Have you farted yet?
Bud:
No.
Jim: Well, don't, 'cause I'm in Phoenix.
Thank
you from Sayte (a.k.a. Bump) for being chosen as CCOM in the March 1st
issue of CCNL
First of all,
(Oh what a surprise!)
There are so many to mention.... Where to begin?
I MUST thank my disease, Mr. Crohn's, for without his constant devotion
to me, the way he has been with me through thick & thin (ick), I
would not even be eligible for this honor.
I would like to thank the many, many medical professionals, the ER Docs,
the nurses, the specialists, who through so many visits, so calmly told
me to, "GO HOME ~ YOU'VE GOT GAS!"
To my neighbor, (who must remain nameless), thank you
for coming over to the car at the pharmacy, while hubby went inside for
an Rx, ...when I was lying on the floorboard in the backseat, throwing
up into a paperbag, to say, "Hey! Hoary? What's going on? Why are
you in your bathrobe???" I must thank her for introducing me
to the lack of sensitivity that I would face again in the future.
I would like to that the TOILET PAPER PEOPLE, for making double rolls
with cushy ripples.
I would like to thank one of my best friends:
"FISHSTICK"
- a rescued stuffed animal that was retrieved in a flea market. After
several sessions in the washing machine, he has been with me since my
first resection, conforming his porpoisey body to my bloating abdomen
every night for over a year. Without him, my life would not be as sweet.
Most of all, I must offer my sincere gratitude to my ChronniesChat pals,
who have offered me much opportunity to find humor in this most
unlikely place. Seriously, the support and the information has
given me hope and encouragement. Most importantly it has educated me in
that I may educate others.
So without further a-doo-doo, I accept this honor most humbly.
"Bump"
ENTOCORT - a user's view
ENTOCORT™ EC (budesonide) was approved by the FDA in October of 2001 after successfully being used in Europe and Canada. It is used to treat mild to moderate active Crohn's disease, affecting the last part of the small intestine (called the ileum) and the first part of the large intestine (called the ascending colon). ENTOCORT EC is a nonsystemic corticosteroid, which means it works mainly in one area of the body. The medicine in Entocort EC is released in the intestine, therefore, it controls the symptoms of Crohn’s disease even though 90% of the drug does not go into the bloodstream. Because of this, it causes fewer severe side effects than other corticosteroids like prednisone.
Side effects of Entocort may include headache, respiratory infection, nausea, and symptoms of hypercorticism. It is very important to take the capsules whole without crushing or breaking them open so that the medication won't be released until reaching the colon. Grapefruit juice should also be avoided while taking Entocort EC, as it can increase the amount of the drug in your bloodstream. This information and much more is available on Entocort's web site: http://www.entocortec.com.
I was the third person that my doctor prescribed this medication for. I started taking it in January of this year, shortly after I was diagnosed with Crohn's disease. Since it is the first steriod medication that I have taken for Crohn's disease, I don't have anything to compare it to, i.e. prednisone. I have heard of the side effects of prednisone, however, and Entocort seems to have fewer. I do feel hungry a little more, but not ravenous. I haven't experienced any of the other effects of hypercoricism that are mentioned. I haven't had headaches or nausea, either. I get respiratory infections all the time, but I did that before taking Entocort, so it wouldn't really be fair to blame it for my allergies! :o)
My Crohn's disease was found by accident while my doctor was trying to figure out what was making me so sick. It turned out to be a generous helping of gallstones that was my main problem. I believe I have had one flare, which I thought was the worst stomach flu of my life. It lasted about 2 weeks and is my only experience with active Crohn's. I still have a problem with diarrhea since taking the Entocort EC, but I haven't had any other symptoms or flares while on the medication.
I'm still pretty much a newbie with this disease, but I hope my limited experience helps some of you decide if this medication might be a practical alternative to prednisone. I know many of you are taking and have taken it and have had problems and side effects. I feel very lucky that I was diagnosed after this medication became available. I really haven't noticed any life-changing side effects and so far (cross your fingers!) I'm still in remission.
Jacquie
Quote of the day: Thanks to SherylKir
The greatest good you can do for another is not just to share your riches, but to reveal to him his own. ~Benjamin Disraeli
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