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Sarita
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   Posted 1/15/2007 10:10 PM (GMT -7)   
Last night I woke up at 4 a.m. with excrutiating pain below my ribcage.  This has happened on at least five separate occasions (remember my fun ER trips?) and they always occur several months apart...the last one occurred a long time ago, back in April.  In the past, no diagnostic tests were ever done because the ER docs just thought it was the result of my ambiguous gut problems.
 
But now I'm not having diarrhea.  I haven't for months now, so I thought this was all over!  Last night scared the bejesus out of me; this is literally the worst pain I've ever felt.  Basically, it'll creep up on me within the span of a couple of minutes, then - BAM - I'm a useless, quivering piece of junk for the next 5-7 minutes.  Feels like I'm being stabbed in the diaphragm.  Then it subsides for about 15 minutes or so, then comes back.  This will happen 5-10 times over the next few hours.  It is unbelievable!
 
I have no idea what it is.  I am going to see the surgeon who did my gallbladder back in '05 tomorrow; he's a smart one, and hopefully he'll give me some idea of what's causing it.
 
 

Canyonbabe711
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   Posted 1/15/2007 11:26 PM (GMT -7)   
that sounds awful, Sarita, let us know what the surgeon says. It sounds like spasms but why is the question.

7Lil
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   Posted 1/16/2007 7:35 AM (GMT -7)   

Oh no!  Sarita, I am so sorry you were in so much pain.  You were doing so well too.     You didn't make your way to the ER?  What could have happened... did you eat something that didn't agree with you?  Could you have diverticulosis?  What about appendicitis?  All I can say is that at least you didn't have accompanied D.  I would think that in itself seems a bit strange for you.  With all the excitement going on with you lately, could it be stress induced?

I wish I had answers for you.  Poor Sarita.  Please let us know how the doc visit goes.

Good luck!!!!


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Keriamon
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   Posted 1/16/2007 8:28 AM (GMT -7)   
A lady I used to work with would get what she called "phantom gall bladder attacks" about once a year. She'd have to miss work because she was cramping so much (probably had D too). Luckily it only seemed to last one day and, like I said, weren't very often. They didn't know what caused her problems either; she'd had her gb out years and years ago.

Sarita
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   Posted 1/16/2007 5:23 PM (GMT -7)   

Well, that appointment took all of 10 minutes.  I described the symptoms and he said that I'll probably never know what is causing it.  Because it only happens sporadically, and because the pain is located in a place where there's no possibility of blockages/twisting/etc.  He really had no idea.  Said maybe it was muscle spasms. 

At least I don't think he billed me for that visit!

I'm going to talk to my nurse practitioner; maybe she'll at least be able to give me something for the pain the next time it happens...


scared2getsick
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   Posted 1/16/2007 11:07 PM (GMT -7)   
get a second opinion. what about otc drugs like advil? i know i can take 4 advil in pill form on an empty stomach with no problem but if i take the liquid gels im doubled over in burning pain. just a thought.
Always grateful for the blessings I do have!


Sarita
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   Posted 1/18/2007 3:44 PM (GMT -7)   

Yee gads, I think I'm doomed again to be a diarrhea monster for a while again.  This whole week I've been a garden hose.  For crying out loud, do I need to be on Flagyl for the rest of my life???

Sorry for my ranting.  I'm just frustrated!  I've been to the bathroom three times in 15 minutes.  It sounds like I'm pouring a glass of water in the toilet (jeez, do I have to be so graphic all the time?)!


7Lil
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   Posted 1/18/2007 3:53 PM (GMT -7)   
Sounds like you're prepping. Sorry, Sarita. sad
Guess you're just going to have to try Flagyl again. Is there a limit to how often or how many times you can be on it?
I hope you find relief soon...
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Canyonbabe711
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   Posted 1/18/2007 4:37 PM (GMT -7)   
Sarita, do you take anything for spasms. I wonder if something like Valium would help if it is muscle spasms. All these spasms in the body seem to react to different medications. You would think one would help any spasm but I know the gut meds for spasm don't help neck spasms and the lung meds don't help stomach spasms. I found a minimal amount of Valium(which was originally developed for muscle spasms) helps over all the most. Hope you find something soon.

There is a drug called Alinia(sp) I wonder if that would help in your case.

Keriamon
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   Posted 1/18/2007 4:44 PM (GMT -7)   
I hope you're planning your honeymoon to be in the US. :-P You don't need to pick up anything new from any foreign locals.

They think you have a parasite they just can't identify, right? I know c. difficile is spread through an unusal method--spores, like mold--so I wonder how your parasite spreads, and if you might be reinfecting yourself? The c. difficile spores can get on a toliet seat easily and spread on contact. The only way to get rid of them is with bleach. Bleaching your toliets heavily and then wiping down the seat and the bowl rim underneath regularly with one of those bleach wipes sure wouldn't hurt anything.

Sarita
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   Posted 1/18/2007 4:57 PM (GMT -7)   

I haven't tried valium for muscle spasms, canyonbabe...maybe I should.  I've always ended up with a combo of morphine/demerol in the ER and when I'm at home I usually take a vicodin, but all that does is make me feel like I'm in outer space.

It's just crazy today, since noon (three hours ago, Alaska time) I've probably been about 20 times.  I'm now having clear liquid movements.  Feeling pretty cruddy in general, dizzy and lightheaded despite drinking tons of Gatorade.  I had some acid reflux issues this morning and took Mylanta, so at first I thought it was a side effect of that, but the side effect profile does not include diarrhea (on the contrary - it says constipation is most likely). 

I called the on-call resident at my nurse practitioner's office.  I don't know whether I should try some Immodium or keep pushing fluids or both or what. 

Not only that, but I'm having a meeting for all my employees in two hours that I have to be here for, so I can't leave work! 

 


Keriamon
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Date Joined Jun 2005
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   Posted 1/19/2007 9:20 AM (GMT -7)   
Well, Sarita, people have cell phone conversations in bathrooms, might as well make the small jump to just having personal meetings in there, LOL.

debgirl
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Date Joined Jun 2006
Total Posts : 9
   Posted 1/19/2007 11:29 AM (GMT -7)   

Sarita...

Have they checked for gall stones lodged in the bile duct?  Or if the bile duct is wide enough?  I know that after I had my gallbladder out, I too felt great...then one day, while driving across the sunshine skyway bridge in florida, I had an attack so bad that I thought I would break the steering wheel in half.  Turns out that I still had gall stones forming only in the bile duct because the duct was not wide enough.  It was bad enough of an attack to cause jaundice and I was off work for 4 weeks...then when I went back to work, a couple of weeks later, I had another attack and went back to the doc to get it taken care of pronto.  They did an ERCP (for the life of me I don't know what it is called in full) but it's a camera that goes down the throat and looks at the bile duct...they can also remove stones and widen the duct at the same time...That was the single most wonderful thing I ever had done!  and I was not even aware of what they were doing!  It's outpatient and usually you can go home the same day...they give you valium though and I'm incredibly sensitive to valium so they kept me over night because I was pretty much out of it. 

Sorry to be so long winded, but, I thought it might help.


Sarita
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   Posted 1/19/2007 2:10 PM (GMT -7)   
Debgirl,
I thought that the pain might be caused by exactly what you described, despite the surgeon saying it wasn't.  It happens so intermittently I can't think of another good reason.
 
I am, amazingly, still tickin' today after having over 50 BMs in the past 24 hours.  It was like hell on earth, worse than any colonoscopy prep I've ever done.  Remember when I told people that what they ingest could not possibly be expunged from the bowels within an hour of eating?  I was wrong.  I had blue Gatorade yesterday and spent the next three hours pooping blue liquids!  It went through me at lightning speed.  I felt like an ALIEN! 
 
This morning I saw my wonderful NP.  She gave me another script for Flagyl to see if that will work.  She wants me to see a new GI and get another colonoscopy.  I don't know.  She also gave me stronger Vicodin to use in case I get that pain again.  Then she gave me the okay to pop some Immodium and so far, so good; I haven't used the toilet in about 45 minutes.
 
Thanks for listening to me...I know you guys are sympathetic!  I just needed to vent.

7Lil
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   Posted 1/19/2007 3:50 PM (GMT -7)   

Oh my goodness, I can't believe you have been in the bathroom that much.  My bum was so sore after going about 20-30 times when I was prepping... I can't imagine how yours must be.  sad

yeah  ***Here's to Immodium!!*** yeah

How's Adam handling things?
Hang in there, Sarita.  Hopefully the Flagyl will do the trick for the next several months.  I'll be keeping my fingers crossed for the Flagyl not to make you feel too crummy.  Good luck!  And keep us posted... we're here for you.
\0/\0/\0/


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Canyonbabe711
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Date Joined Mar 2006
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   Posted 1/19/2007 4:23 PM (GMT -7)   
Sarita, the neurologist gave me the Valium for muscle spasms. I said I have Xanax and she said the Valium works completely differently. I wonder if you should be drinking that much Gatorade. I read somewhere recently that there is some much fructose or something like that that it should be diluted if you are drinking it a lot especially for electrolytes. Man, I can't believe you guys go that much.

What about the Alinia? Has that ever been suggested to anyone. It is being used quite a bit now by some Doctors for IBS even though that is not the intention of the drug.

Sarita
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   Posted 1/19/2007 4:28 PM (GMT -7)   
Thanks Lil!  You're always so uplifting!
 
Adam is handling things...so-so.  I think it scares the bejesus out of him when I am really sick (either in a ton of pain or having unbelievable D).  He gets very quiet and doesn't ever really know what to do.  He does nice things like buy me ginger ale and soup, pats my back, etc. but sometimes I think he's very frustrated and that, in turn, makes me feel frustrated (not to mention I'm usually grouchy to begin with when I'm feeling ick).  I'm not sure how to ask him to support me because I don't really know what I need!
 
I think a lot of men are that way about their women being ill.  They act paralyzed or something.  But he's doing the best he can, and I appreciate that.
 
What do you guys think about the prospect of seeing yet ANOTHER GI?  And possibly getting ANOTHER scope?  The last one was in September 2005.  I'd hate to go through another one that comes up with no answers!
 
Thanks again for your support, you are all well-loved!!!

7Lil
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   Posted 1/19/2007 4:38 PM (GMT -7)   
Sarita, one of these days they're going to find a cause for all your pain and D. Don't give up... Maybe a new GI is the ticket you need. Are you just too fed up at this point? I think the Mayo visit discouraged you. I'm so sorry.
It has been over a year since your last scope - maybe they'll find something this time. Strange isn't it, you don't want them to find anything, yet you want an answer to all your problems. But maybe the Flagyl will fix things and you won't feel the need for a scope.
Remember, what ever you decide is OK and is the right decision for you at the time. If you decide to pass on the scope you can always change your mind and go back to the doc.


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Canyonbabe711
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   Posted 1/19/2007 8:05 PM (GMT -7)   
Sarita, I think I would see someone else and talk it out with them. They might not feel that another colonscopy considering how long you have had this,etc is worthwhile but maybe they just might be able to come up with something. I have found entirely different approaches from different GI's. It has got to be so frustrating.

Lil, that part about finding something is so true. When I have a test for anything and they don't find something my friends say "well, that is good" and I want to say but I am still sick. I think I can deal better if I knew but then I think it depends on what it is. Slippery slope.

Keriamon
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Date Joined Jun 2005
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   Posted 1/22/2007 10:32 AM (GMT -7)   
Maybe you need to see a GI like in India or South America? You've been exposed to a lot of things that Americans generally never get exposed to, so it seems to me, anyways, that it's not surprising that American doctors don't know what to do with you. At the very least, get a foreign-educated doctor from some country where this sort of D is common.

Could you have amoebic dysentery? http://en.wikipedia.org/wiki/Dysentery It says it usually goes away on its own, but historically that wasn't necessarily true; Edward, the Black Prince of England, ended up dying after years of suffering from the bloody flux that he picked up on campaign in France (bad plumbing there, you know). I know you have been taking antibiotics, but this mentions also needing something to actually kill the parasite.

Sarita
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Date Joined Mar 2005
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   Posted 1/22/2007 12:21 PM (GMT -7)   

Hey Keri,

I actually did have amoebic dysentery when I was in Africa.  A lot of the symptoms I'm experiencing are the same; the only difference is that I don't always get them at the same time, like I did in Africa.  While I was there, my fever would reach 104, the abdominal cramps would be intense, the diarrhea was constant, and sometimes I'd vomit for good measure.  Now, everything is so intermittent, and I rarely have a temp over 101.  Plus, if I were still infected with amoebas, something would have likely shown up on my liver MRI or a CT scan, but nothing has.

Yesterday I had a lot of diarrhea and noticed more blood.  Usually if I see blood it's pretty clear it's just from my bum being sore, but yesterday there was quite a bit more.  I think I am going to see the new GI.  My sister (a family doc) said offhand in an e-mail that all this treatment with Flagyl may not necessarily be such a good idea, but she didn't say why.

I really don't want to start medical school with any of these problems, yikes.  Although the nurse practitioner said that when I do go, I'd probably get lots of interest from my professors and fellow med students, since they like knowing all the "weird stuff!"


Keriamon
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Date Joined Jun 2005
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   Posted 1/22/2007 4:58 PM (GMT -7)   
Yeah, Sarita, make some money while you're in school by enrolling in some of those research projects. Make sure you hold out for $$$ when anyone wants to use you as the subject of their paper, lol.

Maybe you have medieval amoebic dysentery; people that had it didn't necessarily have it all the time; it would come and go. I mean the Black Prince lived with it for some years; if he had 20 trips to the water closet a day without let-up, he would have died very quickly because they didn't know anything about staying hydrated (Stuart says he read that one treatment for diarrhea was to stop drinking water, because they thought you had too much water in your system, and that's why the body was casting it out), and they certainly didn't have Imodium. So their symptoms had to have come and gone for someone to live through having it for a few years. Maybe a solid bout of diarrhea flushes a lot of the parasites/bacteria out, and so you get better, until they repopulate enough to send you back to the toliet again.

You never can tell with what will show up on tests. After all, it took three hida scans and five years to find my bad gall bladder; my gall bladder had already been bad for a year and a half, and yet it didn't show up on my first two tests. People with Crohn's often have a lot of tests for several years before it's finally found. You'd know better than most how many feet of intestines there are where things can hide. Of course, that doesn't just go for parasites or bacteria, but ulcers too. I guess that's the best reason to keep getting tested over and over again; they're not that accurate to begin with.

Canyonbabe711
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Date Joined Mar 2006
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   Posted 1/22/2007 5:04 PM (GMT -7)   
If this is similar to amoebic dysentery I would definetly ask about Alinia(sp) cause that was the original purpose of the drug.
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