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Michele - I really feel bad that you had to go through that and still don't have any answers. I would be just a little bit upset too. I sure hope you can find out something, soon. Sharon W
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Thanks Sharon! I appreciate the support!
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Taking it one day at a time.....
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I have a hiatal hernia (just discovered that with the latest endoscopy) and know what you mean about that pain right at the breastbone area. And it sure does hurt to wear a bra, but I am so large that I can't really go without. My GI switched my antacid from prevacid to protonex. He said after a couple years I would most likely need to switch again. As with so many drugs, our bodies become used to them and they don't work after awhile. I've been getting a really hard time from the docs over the use of narcotic pain relievers, muscle relaxants and whatever else they can think of. They feel that vicodin exacerbates my IBS problems. The GI and the surgeon who was called in to assess my rectal prolapse are not too keen on some of the psychiatric drugs I had been taking either. Note, I said HAD BEEN TAKING. I decided to discontinue them because of the bias of much of the medical community. Also I wasn't sure they were doing me any good. I still see my psychiatrist though cause he is just such a nice doc, is knowledgeable about general medicine (used to be a family practice doc) and really listens and explains things well to me. He is not too in favor of the vicodin either. He did say that it could be the cause of the hernia as it interfers with the functioning of that valve. Your muscle relaxant may also be part of the problem there too. I'm trying to cut down but then I hurt so much I can't function. Not just the tummy but some bodily aches as well.
Sleep: My good doc explained to me that drugs like ambien interfer with REM sleep and so aren't a good idea. Plus like everything else, they stop working after awhile. He tried me on seroquel which unfortunately is in the class of drugs called neuroleptics (anti-psychotics). I did try a low dose for a couple of weeks but found I was just too tired then next day and I was also concerned that it was worsening my ibs constipation. It's an anticholinergic. Is your internist prescribing your psych drugs and sleep meds or are you seeing a psychiatrist? There are so many new advances in psych meds it is hard for an internist to keep up. The down side is then you really get to be known as "mental." But we're probably all considered mental because we are female. Are all gastroenterologists male?
Did you get pictures from your scope? I had the upper and lower done at the same time and have full color photos. I haven't a clue as to how to get them on the computer, but will ask hubby to scan it in and post it.
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An idea
#282884 - 09/18/06 01:29 PM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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Michele, I think you need to get checked out in a real fibro clinic. Are you getting treated at all for fibro? These pains, aches and swelling could all be caused by the fibro. In fact, you sound a lot like 2 ladies in general who are at my fibro clinic.
The doctor who diagnosed you with fibro, is he doing abything about it? Please give me an email and I can give you some good information about people who will LISTEN to you.
You are not crazy. It is not in your head!!
~nelly~ 
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I wish I could just reach into the monitor with both arms and give you a bog ole hug!! You are so brave for doing it anyway... wow! Has anyone given any thought about your eyes being some kind of an elergic reaction? Maybe something in the home or office that is getting to you? I'm sure you've already thought about it.... but ya never know.
I sure wish there was a way (without causing you pain) to get you OFF ALL your meds and then add in one at a time to see which ones REALLY make a difference....but then again, if you don't know what your fighting agaist to make it better.... how do you know how to react to how you feel?? It is all so confusing to me.... (what you are dealing with)....
I wish someone would figure out ONE single test.... for example: they take a sample of your DMA and run ONE test.... and it spits out a report of every possible "thing" that could be wrong.... and shows a "Y" or "N"........ would that not just be the coolest? 
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www.facebook.com/shell.marr
www.myspace.com/shellmarr
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Yeah, I threatened to stop ALL my meds a couple of weeks ago and several of the doctors flipped out! Well, if there isn't anything wrong, why am I taking 15 plus pills a day???
When you invent that blood test, let me know!! Sorta funny but I DID have my DNA testing a couple of years ago for the fertility stuff and I have all the appropriate chromosomes in the right order! 
They are sure my eye irritation is uveitis. I guess when they look it at them through the slit lamp, the microscope they use to look at your eye, they can see infiltrates and waves in my cornea which are the classic signs. Also, they only thing they respond to are steroids, I tried eye antibiotics and allergy meds and they had no effect at allon them. 
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Taking it one day at a time.....
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Pictures, cool! No, I didn't get any pictures!! And, yes, the gi guy and the crohns guy ARE guys! LOL! No offense to the guys out there! My internist and rheumy are female though. My internist is prescribing the sleeping pills, zoloft and vicodin. I do see a shrink but she is just a therapist, she herself doesn't have a license to give drugs but she does work with someone who can.
I am considering asking to be switched from the zoloft to cymbalta. Have you ever tried that one? Its supposed to help with the physical pain of depression.
Luckily, I'm small chested and get away ok with camisoles. I've tried to wear a bra once or twice since than as I like the fact that they give me some shape but the pain is unbearable. I even bought the bra extenders to make them bigger around and bought a soft cup and still can't do them! I told the gi guy that and he jokingly pulled my gown aside, looked at my boobs and said they looked fine to him!  I might have been offended if any other doc had done that but he really was being funny. I actually liked the old guy and I'm bummed he wants me to go back to the crohns guy who doesn't seem to think there is anything wrong AND had an attitude! 
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Taking it one day at a time.....
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I had a brief fling with cymbalta and felt that it aggravated the ibs, but I think anything I'm given now will seem to aggravate the ibs because I am in a flare up. I take antidepressants for depression and anxiety and general mood swings which were much worse in the past. I really was "mental" and even had a sojurn or two in the looney bin. Back in the days when they would hospitalize you to do med changes. Now the physical stuff is worse and it seems the depression comes when I am in pain and can't function too well. I wanted to try Wellbutrin but the P doc wouldn't give it to me as he said it would make me too anxious unless I first took a mood stabilizer. So he first gave me lamictal and I got a rash. Then he gave me trileptal and the tummy problems flared more. So next we tried topomax and that's when I wound up in the hospital with tummy troubles. Those are all anti-seizure drugs that are used for mood stabilizing. The GI wanted me off a lot of the drugs I had been taking. He was going to talk to the P but then changed his mind. The GI has a worse mood disorder than I do. Kind of a Dr. Jekyl, Mr. Hyde. He was Jekyl when he admitted me but two days later became Hyde. He suddenly withdrew my pain meds and had them discharge me in the middle of the night. The nurse said that's the way he is. My neurologist ditto'd that. It's hard when the docs won't coordinate and of course each specialty feels their meds and treatments are essential. I was taking so many drugs, starting, stopping and overlapping. So now I am trying to get it down to the bare essentials.
Antidepressants react differently in different people. Lexapro sent my friend through the wall with anxiety while it really mellows me out. Doesn't lift my mood much. I have bad reactions to tranquillizers. I'll rebound with more anxiety. Vicodin perks me up and gives me energy. Go figure.
So, what kind of doc is the Crohn's guy? And do you have Crohns or is the verdict still pending? Wouldn't it be nice to have a readily diagnosable illness if one needs to be ill? I hate being told, "It's only Irritable Bowel." Hey doc, take a vacation in my body why don't you.
Susie
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Technically, it doesn't *replace* a colonoscopy ... but, it can see into places that the endoscopy/colonoscopy can't. That's the reason I had one -- I'd gotten both scopes done, but several months later I was still having a lot of problems and the GI thought for awhile that I had Crohn's. And it's very possible that you can have Crohn's but the damage it does is only in places that can't be seen via colonoscopy.
I understand your doctor frustration -- my symptoms definitely aren't as aggressive as yours, but I have a lot of different problems, only some of which have been figured out, and I've seen a lot of doctors and had a lot of tests and bloodwork done over the last several months. It's like as soon as I get one problem diagnosed and I start thinking, "Okay, maybe I can move on with my life" then something else starts acting up. I feel like everything in my body is failing. Urrgghhh! It just doesn't seem to be ending.
But, on the other hand, if you *don't* continue to see doctors and get tests done -- it's unlikely you're going to figure anything out. Sometimes you just need a break, though.
What I don't understand is why the doctors suddenly switched from thinking you had serum-negative RA to having Crohn's. Is it just because your D is so awful? Didn't you say that your internist didn't believe you had Crohn's, either?
I know it seems a little drastic, but have you thought about having an explaratory laparoscopy? I mean, on occasion you just can't find some stuff without actually going in.
Another thing ... I know you've had your gallbladder out. I've been doing some reading on this today (my doctor thinks mine is bad ), and there are lots of people who had their gallbladder out, were great for quite awhile, and then suddenly they were having non-stop watery D. Have you thought about at least trying a med like Questran to see if that helps at all?
Just some thoughts...
By the way, you mentioned not too long ago the possibility of going to Mayo. I don't want to discourage you, but I went to Mayo because I was really sick and I felt like I might have multiple problems and I hated my local doctors. I ended up getting no help whatsoever from them. However, I went to gynecology/reproductive endocrinology -- maybe their other departments are better. I also wish I would have done it differently -- I think it might've gone a little better if I hadn't gone straight to gynecology and if I'd asked for some kind of complete generic work-up by maybe an internist or someone like that first.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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WOW! I can't believe you went through all that, I'm so sorry. I hope they can find something. I know how frustrating THAT is--"There's nothing physically wrong w/you". Then why the H*** am I in so much pain?! Despite all their training, some Drs are such idiots! But I hope you're feeling better now.
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IBS-A...I can never make up my mind
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