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Are there Any other a2kers with Crohn's disease?

 
 
IrisDawn
 
  1  
Reply Sat 18 Dec, 2004 09:29 am
Ossobuco
Having someone who understands, loves, and cares would be very nice. maybe being single is best for me as I sometimes wonder about ever being able to feel intimacy again.
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IrisDawn
 
  1  
Reply Sat 18 Dec, 2004 09:31 am
husker
Thanks for the link to the book.
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Portal Star
 
  1  
Reply Mon 20 Dec, 2004 05:39 pm
Matrix500 wrote:
I lost track of this thread and just noticed in my list of posts again.

Portal Star...
That's great news if your doctor doesn't think you have Crohn's. Is the new diet helping like you both hoped it would? I wish you luck with it!


IrisDawn...
Were you ever able to check out any of the links that I left for you a while ago? I did notice that some of them led to forums for Crohn's patients and that the symptoms the participants had ranged from the very severe to the comparatively mild. The people there seemed to easily relate to what the others were saying so I was hoping you might be able to find some support at one of them. I saw some really good senses of humor being displayed by some there...not a bad thing considering the topic. Might be a good place to check out if you haven't as I imagine this time of year with holidays and all can be a bit of a challenge. I hope you're able to "meet up" with some people there who truly understand what it is that you must deal with on a daily basis.


well, I'm so thrilled that they don't think I have chrons. And the diet works pretty well, as long as I don't drink/eat something I'm allergic to, then all bets are off.

The main problem is that it's pretty hard to eat five servings (cups) of non starchy vegetables and two servings of fruits a day. Produce is expensive and I usually would rather have a fajita. But I've been working on it, and it's great to know what works. I'll never miss an important party again if this keeps on working!
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Portal Star
 
  1  
Reply Mon 20 Dec, 2004 05:42 pm
IrisDawn wrote:
Ossobuco
Having someone who understands, loves, and cares would be very nice. maybe being single is best for me as I sometimes wonder about ever being able to feel intimacy again.


Don't give up, Iris Dawn!

Have you been officially diagnosed with Chrons? (Endoscope, etc>?) By a gastroenternologist? I really like my new one, if you ever end up in Austin Smile.
Because there are a lot of things that cause similar symptoms, and are easier to treat, it would be good to absolutely rule in/ rule out chrons. (Although maybe you already have.)

One of my doctors' husbands has Chrons, and they still have a very intimate and loving relationship. They just found ways to cope. You can find someone who will understand, it just might take a little time.
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IrisDawn
 
  1  
Reply Mon 20 Dec, 2004 11:15 pm
I have been officially diagnosed
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Portal Star
 
  1  
Reply Wed 22 Dec, 2004 08:12 pm
IrisDawn wrote:
I have been officially diagnosed


gotcha. I don't know if this would help, but there is a website and magazine for people with Chrons, and it gives stories and suggestions and keeps you up with the latest medical trends.

Unfortunately, I didn't save the link. But I'll bet you could find it with a little bit of searching.

Also, my aunt has chrons and she has found a life- partner, and has two kids and works as a nurse. Sure, she still has to stay at home and sleep a lot, and it's not always easy, but she has a good life.

I personally find that "I'm sick, my stomach hurts" garners more sympathy than "I'm having bloody diarreha all over the place and I feel like I'm going to die." I think you should tell them about the fact that you have the illness, but maybe sugar coat it a little bit, at least in the beginning of the relationship.

Also, get a really good bathroom book. My aunt has volumes in there.
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snowqueen953
 
  1  
Reply Wed 12 Jan, 2005 11:38 pm
need information about crohns
Im 20 yrs old and just found out that i crohns disease.... i have a 3 month old daughter and it scares me to death knowing how sick i get and not knowing anything really about the disease... is there any help that i can get or information about the disease?
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ossobuco
 
  1  
Reply Thu 13 Jan, 2005 12:12 am
Yes, stay tuned here. People who know more than me will post sometime. It might take a while, but keep listening.
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Allsixkindsamusic
 
  1  
Reply Wed 9 Feb, 2005 12:55 pm
Experience is not what happens to you: it's what you learn.
There are many good references, my first recommendation is an excerpt from Jini Thompson's "Listen To Your Gut" at http://www.healingwell.com/library/ibd/thompson1.asp: I particularly like this paragraph (my emphasis):

Quote:
The current medical/pharmaceutical model of illness cannot answer any of these questions. Perhaps this is because their construct of disease is flawed. Personally, I think the popular medical model is far too simplistic to adequately portray and understand all the factors involved in the disease/healing/balancing process. However, I also don't purport to have the answers. I don't claim to have developed or defined a comprehensive alternative model that is more accurate or meaningful. At this time, I merely wish to stimulate your own thought process and encourage you to open up to unconventional possibilities and ideas, to pursue the many layers of truth and the many facets of reality, rather than latching onto the flat, easy, one-dimensional answer.


I commend that last sentence to every profession and espeially to Emperor George 2, his Grand Vizier Rummy, and his chief soldier General Bodycount... I also suggest to His Majesty that His Majesty's new suit looks a little, er, too, er, ... over-fine shall we say? Almost transparent?

If you're a wog there's an org in Finland, http://www.efcca.org/efcmemf.htm; if you're a Skippy (an Ozzie), http://www.acca.net.au/index.asp; can't help with anything in Never-Land.

As the actress said to the bishop: Google M'Lord, The Google is a very good place to start...
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material girl
 
  1  
Reply Thu 10 Feb, 2005 10:39 am
You have all my sympathy.I have heard about crohns(Anastasia has it)but dont know the ful facts,from what Ive read it sounds awful.

I think I have IBS, doctor prescribed some kind of grittydrink(cant remember the name) but didnt help.
Not too sure if it is IBS.
Im definately lactose intolerant which makes my stomach hurt like heck, I had muffled hearing,ringing in the ears and contstant headaches.So I avoid dairy.
The thing that makes me think I have IBS I need the loo practically after every time I eat, I can go from having diarea to being constipated (throw bit of exsissive wind in there too)
It makes me not go out.Id love to go out with my pals for the day when they go out to th beach or London but I have to say no as it will involve a meal at some point.

It depresses me but as I said before you have my every sympathy.I hope your pain eases.
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Matrix500
 
  1  
Reply Sat 9 Apr, 2005 06:23 pm
Thought this might be of some interest:

Local Guitarist Takes Center Stage For Personal Cause

April 8, 2005

By John Sharify - KOMO TV

SEATTLE - Seattle's Showbox will be rocking Friday night. Pearl Jam guitarist Mike McCready takes center stage in a special concert for his personal cause.

It's something he didn't want to talk about until recently.

McCready suffers from Crohn's Disease. It's a disease that inflames your intestines.

If you have, it you know it -- the excruciating pain, the embarrassment.

"Oh yeah. All of a sudden just playing a lead and getting into it and all of a sudden you're like 'oh oh.' I can't stop and I gotta stay on stage and do my rocking or whatever," McCready said. "Stuff happens, we'll just say that."

Which is why when Mike McCready goes anywhere, he needed to know one thing -- the location of the nearest restroom.

He knows when he's driving around Seattle, where the bathrooms are.

With the medication and a special diet, McCready copes with this potentially debilitating disease. He only started talking about Crohn's and Colitis, three years ago -- with a slight nudge from his fiance.

"It's probably because she's tired of hearing me complaining about it," McCready said. " 'OK, had enough. You need to go talk about this.' "

Mike hopes that if he speaks out, more money will go to research. And that if he speaks out, those who suffer silently will know, they're not alone.

McCready also hopes by speaking out, more research money will be coming in to find a cure.

The benefit concert is Friday night April 7 at 8 o'clock at the Showbox. At last year's benefit show, Pearl Jam's Eddie Vedder made a surprise appearance.

http://www.komotv.com/stories/36193.htm

For More Information:

The Northwest Chapter of CCFA at 425-451-8455 or visit www.ccfa.org.
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