hi, Cindy!
#64544 - 04/25/04 08:15 AM
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jenX
Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA
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LMAO....
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I want off this ride!
i hear ya, sistah!
unfortunately, it does appear that we're going to have to become private investigators to get our health straightened out! ridiculous, ain't it. i just want to know one thing: if i'm doing all this research, at what point does someone pay me the doctor's salary!? 
as for the endometriosis... i think maybe your doctor is refusing to do the laproscopy becuase it's invasive? but really, that's sounding a little inexcusible to me. i don't know much about gynocological problems 'cause i'm lucky to not have issues with that (*knock on wood!*). i suggest you find a little time to play on the computer. i googled "diagnose endometriosis" and got tons of hits. the very first one said "A definitive diagnosis can be made only by means of laparoscopy." er.... that's kind of what i would have thought! print out some of this stuff and take it to your doctor. if he/she still refuses, i would go to a new doc. crud, you already have IBS, i think you deserve an actual "for sure" diagnosis on the endo!
do you have a GI doc? i would ask him/her about the Crohn's... if you don't, i would ask your primary care doc who should issue you a referral to a GI specialist, i would think. i don't know how often you would do a colonoscopy on something like this, but i would think if you're having symptoms that sound different from IBS but are still intestinal tract-y in nature, you'd be best served by having a colonoscopy. (  )
i haven't done a food diary, but they do sound like a great idea...
best of luck, Cindy, and keep posting so i know how you're doing! i'll send you good luck vibes!
*j
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jen wrote: ... a colonoscopy should give your doctor an idea whether you have Crohn's ...
Maybe. Or maybe not. I had a colonoscopy and endoscopy in December and turned up nothing at all. Two months later I was in the hospital for 3 weeks with 2 emergency surgeries for Crohn's. There's a whole lotta intestine there that you do not see with these two procedures. RE: blood presence, I don't know about that. My tests for that did come back positive (which is why they wanted to do the colonoscopy) but I'd bet you can have it and still not show blood in the stool -- especially if you're not having a flare-up.
I'd suggest you cross-post this to the Crohn's board or ask Jill to look over the whole thread.
And don't feel alone about "wanting off this ride." No fooling. Yes you do, like jen said, have to track down a thousand details on your own, and these disorders/diseases are incredibly hard to diagnose. But you'll make it!!
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Re: Crohn's
#64610 - 04/25/04 05:12 PM
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jenX
Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA
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sorry you had that experience. like i said, the colonoscopy should give your doctor and idea, but certainly nothing is certain. it's a shame there are no definitive tests for any of these things.... very frustrating for all of the patients who go through these things....
the suggestion to check out the Crohn's board is a good one. glad you mentioned it.
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Re: hi, Jen!
#64690 - 04/26/04 06:18 AM
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crc
Reged: 03/01/04
Posts: 161
Loc: Maine
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Thanks Jen, terrific post back to me. Made me feel very supported and understood. All weekend I have been meaning to google endometriosis but other more FUN stuff got in the way. I will be doing that though. I go in stages where I ignore things and try to cope and take a break from playing Doc and then get my energy back and delve in again. Of course, the Doc's salary would keep me more motivated.
You know I don't have a GI doc, isn't that weird myself thinks. My doctor referred me to one about 6 years ago but after all the tests showed nothing and I was told it was JUST IBS...hmmmph...he just dropped me and I really think that IBS patients should be kept and looked at by a GI at least once a year. Or at least kept on their patient list so you don't have to get a referral first. Last time I looked it was a intestinal disorder!
Congrats on being a moderator, you are terrrrific!
I will be continuing to read the posts and will let you know if I get any closer to solving these mysteries.
Cindy
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After the eye inflammation thing my eye doctor did mention that people with Crohns get this often. I will be checking into the Crohns board and looking around a bit more. Thanks for the info about colonoscopies not always catching everything...a bit scary to hear that, but it makes sense, it is a long organ!!!
Thanks Kelly for all your responses, they have helped alot.
Cindy
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Re: hi, Jen!
#64704 - 04/26/04 07:23 AM
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jenX
Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA
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Quote:
I go in stages where I ignore things and try to cope and take a break from playing Doc and then get my energy back and delve in again.
yeah, me too. that's why i ignored my CFS for so long, 'cause i just needed a break from playing PI/doctor!
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I really think that IBS patients should be kept and looked at by a GI at least once a year. Or at least kept on their patient list so you don't have to get a referral first. Last time I looked it was a intestinal disorder!
see... now i know what your problem is! you think rationally and logically. you'll never get anywhere in the medical profession if you keep that up! 
*j
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