Bad Day

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ronipow
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Bad Day

Post by ronipow »

Emily went in for her Barium X-ray and couldn't swallow the stuff. So we came home very depressed and upset. I have a call into the doctors to see what other alternative we have. Maybe they can put her out, and feed it through a feeding tube. Or if my insurance will cover it she can swallow that camera thing.

Roni
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tex
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Post by tex »

Hi Roni,

Does she really need the test? What are they looking for? That test is mostly useful for purposes such as ruling out cancer, perforations, twisted or contorted intestines, blockages, (or partial blockages), a ballooned section, severe ulceraton, (as in crohn's disease), or some other radical problem with the mid-section of the GI system. It's not of any value in unvestigating food sensitivities, nor is it useful for diagnosing MC, and/or related issues.

Force feeding the barium solution would seem to be a pretty radical approach. At this rate, if she isn't already developing a serious case of Iatrophobia, (fear of doctors), she soon will be. I can't help but feel sorry for her.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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ronipow
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Post by ronipow »

I feel sorry for her too. Unfourtunatly her symptoms seem to be more than food sensitivities. Ever since she had the colonoscopy and endoscopy
something went wrong. Her upper stomach still hurts. It hurts when she gets up in the morning and it hurts after she eats. Some foods do aggrivate it more. She really never has a great day. When, I first brought Emily to the doctor it was not for D, as so many of you have had with this disease. She had her usual loose 3 x a day stools. She ended up having blood which is what brought us to the doctors and my suspicion
of celiac. She never even had this stomach pain until after the procedures
or the Entecort.

When I E-mailed Dr. Fine if it was possible for her to have Chrons he said yes, because she was allergic to yeast. He said his test do not test for that part of the colon.

Also, if they messed up her stomach in the endoscopy the Barium X=ray should pick it up. My gut feeling is that something other that CC is wrong.
Since she has been on the diet her lower intestines have been better. But,
her stomach pain has not decreased.

I just think with all of this elimination of food, some of her upper stomach aches would disappate. I'm at my wits ends with this. It's going on five months and I'm not sure if she will even be able to make it through school in the fall. She, doesn't seem to have blood or mucus in her stool, so I don't think it could be Chrons. Or could it be the beginning stages, i don't know. It seems like this would be the test to shed some light on the situation.

Tex I know your well intended. And, believe me when I say I'd be so happy to not see another doctor for as long as I live.

Roni
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Post by moremuscle »

Hi Roni,

I realize you and I must have been typing at the same time - when I wrote the following post I had not read your post yet. Sorry to hear about the upper GI problems/pain that doesn't want to go away. I am glad Emily isn't bleeding or passing mucus.

Love,
Karen

That was my thought too: Is this test really necessary?

You know, those tests are really pretty darn draining and can be invasive and pose a risk on their own. I remember my GI ordering a CT scan for me because he thought my pancreas was malfunctioning based on some numbers from a blood test. The CT scan was extremely expensive and it was very uncomfortable to have the test done since I didn't know if I could avoid going to the bathroom #2 while hooked up to the apparatus.

Test showed some diffuse enlargement of the pancreas and GI proceeded to order another even more invasive and expensive test - can't remember the particular name of it anymore. He explained to me that there was a 20% risk of reacting to the dye they insert - the reaction was to develop pancreatitis!! That's pretty severe and imagine 1 in 5 patients get it.

After researching and debating and asking other doctors for advice I called the test off - I just wasn't sick enough to feel I needed it. Sometimes NO is the right answer.

Perhaps your daughter is right to refuse to drink this stuff? Her way to say NO.

You've done a lot of testing - the diet Emily is on can be fine tuned over time to give her the results she is looking for. With Dr. Fine's test results in your hands and all the advice from this group and Emily's excellent doctors that support Dr. Fine's findings and recommendations Emily is in good hands.

Love,
Karen
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Post by Wendy »

Wow, it sounds like you have allot to deal with. Our first instinct is to make things better, do what has to be done to make it better. I have severe adhesions on my bowels, to the point where they could not find my womb or ovary when they did the little belly button incision and put a camera inside to see what the problem was. When they finally took my womb out they had to cut them off my womb. So my first GI knew this and always put me out to have a colonoscopy, or any test that had to do with my digestive tract. He told me it would be much too painful. Well when I came to Toronto and the new GI did my test, and even after I told him my problem HE DID NOT PUT ME ASLEEP. I kept screaming, I thought at least, but he said that I was showing mild discomfort. Mild discomfort my #$@&*($#. He increased the whatever he was giving me, until finally after doing that three times, he stopped the test. I was in major pain for several days after, to the point of crying. So the next time I had to have it done, I was terrified. I made him promise to put me asleep, and he did. And for the barium stuff, and any other test they can do, that I have most likely had, it takes everything I have to get that crap down, so I know why she couldn't do it. Poor thing.
I don't know how much it costs to have the tests done because we just pay I think it works out to about 30.00 a month and it covers anything that we need done.
But I don't have anything to tell you either that can be helpful, I just wanted to say I feel for you. Sometimes its hard to decide what to do, I wish you the best in your efforts for an answer.

:bigbighug:

Gentle hugs that is
Wendy
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tex
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Post by tex »

Hi Roni,

You could be right, about possible stomach damage from an endoscopy. I would like to mention, though, that I just got though a 5 week reaction that was started by failing to read a label, and kept going by occasionally eating a few cookies that contained a small amount of dairy free marjarine, that apparently contained a corn derivative. The amount of corn that I was ingesting had to be a very small, amount, but it was enough to keep me moderately sick for 5 weeks, and it would probably still be going on, if I hadn't stopped eating the cookies.

During all this time, the only D I had, was from the initial reacton, and only lasted for a few days. Every day though, for 5 weeks, I had stomach pains of varying intensity. It was enough to make sleeping difficult most nights, and it was always worse after eating. In fact, I started taking betaine hydrohloride tablets with my meals, to help reduce the pain after eating, and it did seem to help. A couple of days after I stopped eating the cookies with the margarine, the stomach pain disappeared, and so did all my other symptoms, (I had been feeling bloating, tired, headachy, and generally cruddy, a lot of the time).

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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kate_ce1995
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Post by kate_ce1995 »

Roni,

Has she had a gallbladder ultrasound? Christine could fill you in better than I, but my recollection from others, and my GI had sent me for that, is that that can cause upper digestive pain.

Katy
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