Upper Endoscopy questions

I've been in a flare (or whatever this is!) and while I wasn't able to see my GI, he did just call me to discuss some things. I still don't have a diagnosis even after colonoscopy & biopsy, and I kind of thought that either CT scan or pill cam would be the next step. But my GI said that he wants to do an upper endoscopy next.

My pain is located mainly in the lower-right part of my abdomen, like near where the appendix is. So my question is, shouldn't the colonoscopy have gotten to that spot where my pain is? And if my pain is down there in the lower part, why would my GI want to do an upper endoscopy? I have a high insurance deductible and have to pay out of pocket for a good chunk of the tests I have done, so I don't want to have a test that doesn't make sense to me. I do want a diagnosis so I'm willing to have whatever tests do sound like they'd be likely to find something, which is why I was leaning more towards pill cam or CT scan. What are your opinions?

It does sound a bit odd again i kinda having the same experiences at the mo, I was recently in hospital for 2 weeks and the doctors didnt seem to have a clue what they were doing I even asked for a colonoscopy (they cant get that request often!) and they did an upper endoscopy instead.....it was productive but then I saw my consultant in clinic and he was furious they had let me lie in a hospital bed for 2 weeks and done about 2 dats worth of tests! It is all vey confusing sometimes and I really can see where your coming from especially as you guys have to pay privately for everything. I guess it would be a good thing to rule things out but if your pain is lower right quadrant as would't that make more sense? Some doctors continue to surprise me, but in their defence you can also get referred pain? although I really do think gut instincts are usually right cat.

Have you been brave enough to ask that question? I dont know how it works with you guys but because you do have to think of the costs so much could you also use that in your explanation on why the CT or pill cam would not be better? Sometimes they are not good at explaining themselves and they do have a very good theory but dont explain it.

God I know its sooo frustrating, but we are all in this together and can rant and rave as much as we like on here so keep fighting Cat, get out of your tests what you want. Im sure you will get there eventually and it must be comforting to read some of the stories on here who have taken years to diagnose.

Dont give up, we'll all get through these hard times together. Just keep talking cos it does help and people here really do understand.

Big hug,

xx

I asked my Doctor just the other day if I should plan on a colonoscopy every so many years and he said no the endoscopy is going to show the most. I asked about the pill cam and he said he doesn't like it because it can get stuck and then they have to operate. So I don't know the why or how of it but apparently for Crohn's the endoscopy is helpful.

How the bleep will an endoscopy show the most?.......unless your disease is in the duodenum or highter?.......

I get a colonoscopy EVERY YEAR - have been for the past, oh, 20 years or so!.....to check for any changes, but then again my disease is in the large intestine/small intestine and I have to be on the lookout for any changes pointing to cancer....

I wonder if maybe it could be the double balloon endoscopy that the doctor was referring to? It's able to go all the way through the small intestines to the terminal ileum.

Kelly said:

I wonder if maybe it could be the double balloon endoscopy that the doctor was referring to? It's able to go all the way through the small intestines to the terminal ileum.

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I have no idea, he didn't mention anything about double balloon (not even entirely sure what that is or how it works!). In another thread someone asked if I am having barium or not - I don't know that either. I'm going to research all the "variables" in endoscopies and write down my questions to ask my GI. Thanks all for your input!

Okayyyy, so, change of plans! This is kind of weird, but I have to say I'm happy with the outcome. I got a voicemail today from my GI's office, saying they had scheduled my next test and to call them back to confirm. So I called them back during my lunch hour, and they said that my GI has scheduled a CT scan for me next week.

I was like, "Um, what? Are you sure? I thought the doctor wanted me to have an upper endoscopy. I just talked with him a few days ago and he specifically said that's the next test he wants me to have. I even asked about the possibility of having a CT scan and he said that'd be a good one to do in the future, but right now he wants to do an endoscopy first."

They said, well, maybe he wants to do an endoscopy too, we don't know, but the information we have here clearly says CT scan. So, I'm having a CT scan next week. I peppered the poor receptionist with questions, and found out that apparently I'm going to get both an IV of barium and I will also have to drink barium (I will ask for a puke bucket to be nearby after some of the barium stories I've read on this site!). The prep doesn't sound too bad either, no food or drink for 4 hours prior to the scan and that's it. They said I can eat & drink whatever I want up until 4 hours before.

I'm happy because, as I said in my first post in this thread, I don't know exactly what an upper endoscopy would show, since I've got pain in the lower-right. The CT scan will obviously show the whole shebang, which makes a lot more sense to me. If they call to schedule an endoscopy too, I'm just going to tell them (the truth) that I can only afford one test at a time for awhile, since my insurance deductible is high, so I'm just going to do the CT for now. It's scheduled for a week from today, on Tuesday, so I'll keep everyone updated.

Anybody know what the best flavor of barium is? I think I remember reading that it's banana but I don't know if that is right.

"An abdominal CT rapidly creates detailed pictures of the structures inside the belly area (abdomen). The test may be used to:

Study blood vessels
Identify masses and tumors, including cancer
Look for infections, kidney stones, or appendicitis"

You can have a clean CT scan and still have Crohn's. But it is a good diagnostic tool to rule out lots of other conditions. Your dr is probably doing the endoscopy to rule out other conditions. You say you don't have a diagnosis even after colonoscopy and biopsy. That doesn't mean you don't have Crohn's.

Last March, after a terrible flare, I had colonoscopy with old GI dr. Said colon looked fine (i'm assuming she looked at term. ileum because she did small bowel biopsies), and biopsies normal. But as my symptoms came and went the rest of the year, I still knew something was up.

I had a CT scan last November that family dr ordered. He was looking specifically for diverticulitis because I was in acute pain (right side, upper and lower), with bad bloating/distension. The scan was fine. He diagnosed c-diff/bacterial overgrowth and put me on Flagyl, which relieved the acute symptoms. But I still wasn't feeling right, so I went to a new GI dr who did bloodwork and colonoscopy. Because of my symptoms and history (UC), she was looking specifically for Crohn's. So she did bloodwork that showed low B12. Vitamin B12 is absorbed in the terminal ileum, and terminal ileum is Crohn's favorite spot. She confirmed with scope a visible change in terminal ileum (it's "stiff"), even though biposies were normal. I'm on Lialda (mesalamine) and B12 shots.

Crohn's can be very difficult to diagnose. From what I've read on this site, while we all can have common symptoms, not all symptoms fit all Crohn's patients all the time. And the symptoms can come and go.

The most important thing you will need is a great (not good) doctor. One who is experienced at diagnosing a condition that can be elusive and difficult to diagnose. Some GI's are better than others at working with Crohn's patients. There are a lot of dr's that would not have looked for Crohn's with me, since I'd had a clean scope and normal biopsies the year before. Luckily I found one who was persistent.

You may be satisfied with your dr at this point, but if they continue to do test after test, and you're not getting a diagnosis, you might consider visiting one who specializes in Crohn's. If you live anywhere near a teaching hospital, they often will have very good diagnostic physicians.

Thanks Char! The hospital I go to is a teaching hospital, that's where I had my colonoscopy and that's where I'm having the CT scan. My GI thinks it's probably crohn's based on my symptoms (and now also based on the fact that prednisone worked for me and is clearing up a recent flare - they also asked me to try an IBS medicine, which did nothing, so it's seeming like it's something autoimmune and not IBS). I don't think my GI specializes specifically in crohn's, but it's what he suspects I've got, so I think he's pretty good.

My understanding of the CT scan is that it can still pick up some aspects of Crohn's, like thickened intestinal walls, so there's still the possibility that I could get a diagnosis from the CT scan. They're having me drink barium before the scan, so they're definitely going to be looking at the intestines (they're also doing an IV of barium so they'll also look at whatever that shows - kidneys and liver, I think). I feel pretty confident about this and I hope the scan sheds some light on what's going on inside my guts. Thanks for your reply!

Sounds like you are in good hands and you're on the same page as the dr.

Interesting, I had the IV dye for the CT scan but no drink. I went for an upper GI (basically an x-ray), and that's when I drank the barium. It showed no strictures or abormalities. So nothing was severe enough in my case, that jumped out and said, 'Eureka, we found it!' My physical symptoms, low B12 and stiffness in terminal ileum - all add up to Crohn's for me.

We're all different, that's for sure. Good luck!

Cat, I'm so glad the pred is helping you out. I had a CT scan and it was to confirm crohn's. I also had lots of "cobble stoning" inflammation in my large intestine. With the CT they found I had thickening of the small intestine at the ileum which was the final nail in the coffin for crohn's diagnosis.

The stuff I drank was nasty but bearable. They gave me a time limit, like drink the whole thing n 15 minutes and then drink the other one in the next fifteen minutes.

BTW when they gave me the IV they warned me about a peeing my pants feeling but all I got was a diahreah in my pants feelings. It was a little concerning because I could have been pretty confident I was not peeing myself even if it felt like it. But when I felt like warm fluid was running out of my butt, I said "uh oh!" :ylol: But all was well.

Good luck and I'm glad you're feeling better.

Anyone know the name of the test (torture) where they feed the scope down through your throat into your small intestine and shoot the barium right there so they can get the best pic's? I had it done 15 years ago and that's when my first stricture was found but I can't remember the name of the test.. it was the most horrifying thing I've had done yet. I had to be awake for the entire thing. I've had an upper endoscopy but this was not the same thing.

Crohnicaly stinky: Thanks, I'm so glad to hear from someone who got diagnosed from a CT scan! That gives me some hope. I've heard several people say they had the "pee pants" feeling from the IV, so I think I'm going to bring a change of pants to the scan just in case! As far as the pred goes, I'm done with it on Saturday - they just gave me 10 mg per day x 5 days to see if it does anything to me, and even on this low dosage I can feel that it is working - I have more energy (although the insomina has gotten worse, which I understand is common with pred), I have less pain and way less d, and I actually feel hungry.

Sidders: I don't know the name of it. I know Pen said she's had that done but I don't remember which thread she mentioned that in.

You don't actually pee your pants cat! Just makes you feel like it but if you put your hand down and check its dry!

I am having a CT on Monday, ostensibly to check out a hemangioma they saw on my liver during an ultrasound I had in March. But they're telling me to drink barium one hour prior. Is that standard procedure with all abdominal CTs or are they also specifically looking at my intestines? When I woke up from my upper endo, my GI said "no more testing." Wonder if he snuck this in there since I was having a CT anyway for my regular doctor. Not like I care. I've met my deductible. Test away!!

They didn't say anything about a barium IV, but now at least if I have one I'll know to expect feeling like I'm pooing/peeing myself. :ybiggrin: Thanks for the heads up!

I hope yours goes well, Cat!

Rebeccca, I know I won't really pee my pants, but I'm just one of those people who likes to have a "safety net" for everything, you know? It'll make me feel better just knowing I've got a spare pair of pants with me even if I know I won't need them. I'm weird that way.

Mayflower, thanks for wishing me well and I hope your scan goes well too! As far as the IV goes, I found this link which is helpful in explaining the reasoning behind the various methods of administering the barium:
http://www.ehealthmd.com/library/ctscan/CTS_contrast.html

It specifically says in that link, "Intravenous contrast is used to highlight blood vessels and to enhance the structure of organs like the brain, spine, liver, and kidney." So if they're really looking at your liver, I would think they'd definitely do an IV on you. It also says "Oral contrast is used to highlight gastrointestinal (GI) organs in the abdomen and pelvis." So if they are making you drink the barium, they're definitely looking at your intestines as well. Maybe that's just standard procedure for GI patients, even if they're not looking for anything specific?

Interesting link. Thanks for the info. My husband had a CT scan b/c of frequent headaches, and he said whatever they put in him (I guess iodine?) made him feel like his insides were on fire.
I'm kindof nervous. I hope this isn't one of those things that makes you feel claustrophobic. :yfaint:

No, it's definitely not one of those things that makes you claustrophobic. I'm not claustrophobic but they must get a lot of questions about that kind of thing, because when I talked with the doctor's office the other day they made sure to tell me that it's not one of those things where your whole body goes into a little hole in a big machine - it's pretty open and the machine just sort of passes over you. From what they told me, it shouldn't induce any sort of claustrophobia. So don't be too nervous. I'm sure you'll do fine

My aunt said she also had the IV of iodine, and she said it made her feel hot and it made her mouth taste of metal. But other than that, she said it wasn't too bad. She said drinking the barium was worse because they made her drink a lot of it. So all in all, none of this sounds too terrible to me. Certainly it sounds better than colonoscopy prep any day!

You go into it feet first and so it never goes above your chest. I did have to hold my breathe though. It's a piece of cake one you have the barium down. Also I went in with my pants on and just lowered them down under a blanket while laying on the thing. That was odd, pants around my thighs feeling like I was pooping myself. lol! Oh what we must endure!

Certainly it sounds better than colonoscopy prep any day!

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Yes, you are right. When the nurse told me there was a small "prep" involved with this CT scan, I immediately started to panic. I just have to remember that not all preps involve explosive diarrhea.

I have to drink one bottle 2 hours prior and another one 1 hour prior to the test. Means I'll be waking up at 6 for a barium shake. Does this stuff taste sort of like Maalox or Kaopectate? Maybe I'm weird, but I like the way that stuff tastes. So if that's the case, then yum?

Okay, well good luck with your scan, too!