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Discussion:
endoscopy fears
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I have CP am experiencing malabsorption. Bile diarrhea, I had a Colonoscopy 4mo ago and came back with no problems. I mention acid reflux and my spazz GP wants to do an endoscopy. I have CP because 14yrs ago I had an ERCP that resulted in Pancreatitis. I went in for gall bladder removal and came out 18 days later with TPNutrition.

MY Question is should I have an Endoscopy? I have not had a procedure down my throat since. I don't want my Pancreas upset any more then it is already. thanks Pecan20
Posted on 03/24/10, 09:08 pm
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Reply #1 - 03/26/10  11:04am
" If you trust your doctor, then I would say to do what he thinks. What is his reasoning for wanting an endoscopy? I've had 4 of them and they usually ordered that test because they want to help rule out certain things, such as problems in your throat or cancer of the stomach.

You might just ask him what he is looking for with an endoscopy. If you are satisfied with his answer, I would do it. But if you don't feel good about your GP, find a new one! I went through all of the GPs here locally and had to end up going out of town before I found one who would actually listen to me and partner with me in getting better.

Good luck!

Vickie "
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Reply #2 - 03/28/10  11:39am
" Is your doctor wanting to do an EDG or ERCP? There is little risk of a pancreatic attack from an EDG, so I would not worry about having that done, but if he wants to an ERCP, I can understand your hesitation.

You need to ask him how many ERCPs he does per year. If it is anything fewer than 200 per year, I don't think I would let him touch me. I would ask for a referral to someone with more experience if he really feels it is necessary.

The EDG could because of reflux. With an EDG they do not go anywhere near the pancreas, so there should be no risk of pancreatitis. But you need to confirm this with your doctor to make sure he does not get exploratory happy with that tube. I have about 30 EDGs in my for various and never had a pancreatic problem from any of them.

Telling you yes or no on the procedure is nothing something anyone else can really do. The decision ultimately will have to come from you. All we can do is share our experiences and offer advice bases on them experiences.

Though I would confirm with you doctor whether or not it is an ERCP or EDG and what are the risks of pancreatitis in either case. Also if ERCP, how many does he do per year, because the risk of pancreatitis is in direct ration to his experience.

Wish you the best of luck. Please keep us posted as to how you make out. "
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Reply #3 - 04/09/10  3:15pm
" Pancreatitis is not common at all with endoscopy. I know this because only a handful of people in the world are known to have gotten pancreatitis from an endoscopy - I should know - my husband is one of them. He is currently battling severe acute necrotizing pancreatitis and has a recurring cyst (one of many cysts, but one, in particularl, is 20+cm on the last scan - this is after it had already been drained once via endoscopic ultrasound).

My husband's parents are both surgeons and his mother suggested that perhaps the doctor who did the endoscopy should have told my husband not to eat anything except for clear liquids for 12 hours post procedure. This was my husband's 3rd endoscopy and in each case, the doctor said he could go "eat whatever he wanted" after the procedure.

Ever since, we have been living a nightmare - especially because we have a 10 month old daughter.

Yesterday was the 3 month anniversary of him getting it - and we have barely made any progress in recovery (this was a perfectly healthy 40 year old male at the time this occured). So, i can see why you are concerned, especially since you have had pancreatitis before.

But, I mention all of this because we have talked to numerous doctors (of all specialties) and all are bewildered that he got it from an endoscopy. They keep trying to correct us - and say - NO ERCP is what you mean - you don't get pancreatitis from an endoscopy - and it's like - we know this - he didn't have ERCP - he had an endoscopy. Doctors spend 5 minutes on this each time - it is beginning to get annoying. It's like I need paperwork to prove he got it after an endoscopy.

One doctor suggested it was "fate/destiny" that he got pancreatitis and it was bad timing - yeah right - 3 hours post procedure - a perfectly healthy man who is not an ounce overweight - exercises regularly - has perfect triglycerides and does not drink alcohol except a beer at poker night once a month. It was his destiny to get it 3 hours after a doctor was hankering around in the area of his pancreas.

Anyways - good luck. Endoscopies are given for a reason and they can find many diseases early (i.e. cancer) - so you definitely want to get it if you need it - maybe my husband was the unlucky person of the year to get this condition so you will statistically be safe. "
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Reply #4 - 04/12/10  9:27am
" Wow tigg you just made me nervous to ever get a regular endoscopy again! No not really but what a story. I did find it sadly amusing the story about having to get it through each dr's head that is was not an ERCP but and endoscopy that triggered it. I have found that gallbladder removal is also another trigger. But if Pecan is just getting a regular scan I think she is fine, "
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Reply #5 - 04/12/10  1:29pm
" Yes, alchemist, I agree that Pecan should be fine. But I also know the reality that it isn't a guarantee...but I still say go with the test. This is why (and my husband and I discussed this the other day)...let's say he gets another polyp and he is too afraid to do an endoscopy to have it biopsied. And it's cancerous. So, nothing gets done to it - he gets cancer and then has to deal with complicated procedures related to that and a very scary diagnosis. And chances are, he'd end up having an endoscopy or ERCP again anyways but along with battling something more complicated.

My husband is on TPN 14 hours a day (well, up until 2 days ago when we made it 12 hours a day cause we can't take the 14 hours anymore). We have to take out the bag of food 3 hours ahead of time, so we were trapped to the house at least 17 hours each day. He has to drag this machine all around our house (with carpet) and try and manage picking up our 10 month old daughter (who LOVES pulling at cords, especially ones hanging out of her father's arm). He is skin and bones (and was already thin to start with).

This is a nightmare, but even with the pancreatitis - we know if he needed a future endoscopy - he'd do it. When he needed the cyst drained the first time - they said the word endoscopy and I believe I cried. I didn't want him to do anything with the word endoscopy again. It was a procedure called endoscopic ultrasound which is very sophisticated and unfortunately, for him, because it had necrosis it was likely to come back, and it did (and bigger). But, when we were telling the doctor we didn't want an endoscopic procedure, he suggested what would happen if it burst. Hello rock - meet hard place. You have to weigh everything and quite honestly, even the GI doctor joked and laughed when he told my husband, "No more endoscopies for you!". Needless to say, his joke fell flat - my husband and I didn't laugh with him. Pancreatitis is not funny or maybe we were just not amused when my dehydrated husband was lying in a hospital bed and we were bewildered that this could happen after a simple test.

But, certain tests are given to help save lives. This is one of them. Again, statistically, it is unheard of to get pancreatitis after an endoscopy and if my husband got it - and only a handful of people have ever gotten it - it is unlikely another person will get it so close in time to his. At least that's my crazy take on it. :-/

Good luck. "
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Reply #6 - 05/29/10  7:57pm
" I had my endoscopy, I'm still here. Dr. told me I have Gastritis and a mild Hiatal Hernia. Pancreatitis is really hurting lately in the evening. I have this tightening feeling around my rib cage and up my back, and the screaming pain centers right below my rib cage. Sooo the Dr. says he wants to do a catscan w/ contrast YUCK. I also might need to have an MRCP to see if the pain might be SOD (Sphincter of Oddi). On a lighter note, I have my Birthday on Memorial day this year, and I am looking forward to relaxing and swimming. Thanks to all who serve this great country. U.S.A. "
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Reply #7 - 06/01/10  12:52am
" I have nothing to add because I am having both upper one and the lower one....and I haven't had either of them/ So On Wen is it.

So yes I do understand your worry, and I been worried a little different then your reasons. But still I think it can be a concern for you.

I am scared of the unknown. Everyone tells me I'll be find.
What scares me is that I been now 3 weeks in pain mostly in my right side high up under my rib area going to my side and back. I also had some pain on the left side but it comes n goes.
I am worried because I been nausa, and now my bowles have change to yellow Yesterday. Today nothing. I been peeing a little today and smellie a little darker then normal.
NO sign of blood. I have no idea what is wrong
So for me these tests might help me answer what is wrong with me.

The blood work up I had last week show a little high pancreatitis. They didnt' think anything with that/ gave me pain pills and sent home.

The week before that I had a higher white cell which they told me that could mean infections?

So far I haven't been to doctors. My husband isn't too nice about me going...only because there isn't any answers. So he thinks I should not go to a doctor or espiecally ER.

So here I am hoping so very much that something shows in these tests...I hope /

Thank you for letting me add

I wish you the best for your tests when are they? "

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