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03-04-2015, 02:20 PM   #1
Izzie
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GI problems and anxiety/not believed by doctors

Hey there guys!
I'm new to this forum, thought I'd ask you all for some advice or maybe just support.
I've had GI problems now for over two months. Started with sharp "chest" pains, then settled in a spot under my ribs on the left side. Hurts when pressed, when I eat, when I move etc. Also tested positive for blood in stool, was temporarily anemic when the symptoms first started - that has since resolved, am having frequent BMs, occasional constipation, a lot of mucus, occassional severe pain, acid reflux and absolutely ABSURD gas within 10-15 minutes of eating. Have lost about 10 lbs. Had a gastroscopy, didn't show anything. Ultrasound on gallbladder, pancreas, kidneys - nada. Am now basically on a liquid diet and unable to do much of anything. Tired CONSTANTLY, can't seem to sleep enough.

Now, my biggest problem in all this is the fact that I've had anxiety problems since I was a child. Had a less than ideal childhood, and started having panic attacks from age 8. Part of my anxiety has, in the past, been health anxiety, but I've seen a psychologist for that, and I feel that now I have my anxiety under control, and can differentiate between anxiety and my physical problems. I haven't had any particular anxiety about these recent GI problems, though they frustrate me and I, of course, want a diagnosis and treatment so that I can get better.

Many of my doctors have mentioned my anxiety problems, even when I went to the ER in an ambulance because of severe pain. I feel that very few of the doctors take me seriously, and give snarky comments about not having any more tests to "offer" me. The few good doctors I've seen have even told me that they question previous docs assessments because of their obvious belief that I'm just a "hysterical", anxious hypochondriac.

I'm trying hard to stand up for myself and insist on more tests, but it takes a toll when doctors don't believe you.

Anyone have any tips on how to deal with doctors who insist you're just "stressed"? I'm also concerned about the inconsistency - some doctors believe me and take everything very seriously, others send me home with suggestions of taking aspirin and "waiting it out".

I'm also concerned about bringing this up with my doctors because I fear that I'll sound paranoid or they'll take my concerns as more "anxiety", and be less helpful.

Sorry about the very long post, btw.

ETA: Docs have suggested possible IBD, but are reluctant to pursue further testing, hence why I'm posting on this forum.
03-04-2015, 04:48 PM   #2
JenS
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I hate when doctors throw it off as "anxiety" or "stress"!!
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Mild Crohn's 1997-2004
Bloody diarrhea, Pain in lower right stomach

Remission 2005-2013
Felt great for many years...Married and had two kids during remission!!

Symptoms, No Treatment 2013-2015
Occult blood in stool, Joint pain, Anemia, Fatigue, Pain in upper right stomach

Currently Flaring 2016
Bloody diarrhea, Pain, Elevated liver enzymes, Hip/back pain
03-04-2015, 04:58 PM   #3
buttER
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Hi Izzie
You poor thing.
The only thing I can suggest is finding someone who you can take along with you, who understands your situation and who would be taken seriously by the doctors.
It is good if you have someone on your side.
Hang on in there.
03-04-2015, 05:16 PM   #4
Izzie
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Thank you for the support!
I've brought my mother along on a couple of my appointments and generally they seem to respond better, but still nothing actually happens.

I've been in the ER 4 times the past month from the pain, twice I was sent home with aspirin despite crying from pain (I'm not a pain sensitive person, had an adult tonsillectomy a couple years ago and got by without pain meds) and have been in contact with a doctor because I can't eat. Or drink, really. I've lived on liquids for the past two days and still practically every other breath I take is accompanied by belching for at least 3 hours after I take a sip of anything that isn't water. Any kind of even remotely solid food or thicker liquid will result in severe pain.

To me, that's bordering on serious enough to warrant hospitalization, but the doctor told me to just "eat yoghurt" (which I can't - the pain and nausea would be excruciating), and completely ignored me when I said I can't do that. I don't even feel like I can keep properly hydrated atm.

Having psychiatric issues in your chart can really mess up the care you get...
03-04-2015, 06:09 PM   #5
Marlena
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Having been a psch social worker i really understand what you're gong through - I can't tell you the number of docs who came very close to a rearranged face because of just this treatment of patients. Are you seeing or can you see a gatsroenterologist? The are under your ribs you describe as painful sounds like your liver. but you really are describing IBD. I wish you the best, keep us posted.
03-04-2015, 06:25 PM   #6
lenny
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It's amazing to me that there is a stigma in regard to mental health, even with medical professionals, but there definitely is.

I have no history of anything mental, but I've had the occasional doctor try to blame various problems on stress or suggest it's in my head..just because they couldn't figure it out. I understand your frustration.

Maybe go with a list of questions, so that you stay on track and don't move on until each is answered. 1. What are you going to do to relieve my pain?
03-04-2015, 06:34 PM   #7
Izzie
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Having been a psch social worker i really understand what you're gong through - I can't tell you the number of docs who came very close to a rearranged face because of just this treatment of patients. Are you seeing or can you see a gatsroenterologist? The are under your ribs you describe as painful sounds like your liver. but you really are describing IBD. I wish you the best, keep us posted.
They checked my liver during the ultrasound also, so I think liver issues have been ruled out. During palpation the pain seems to be around the splenic flexure, according to one doc. And yeah, if it weren't for the repercussions, some faces would be rearranged by now. It's very frustrating to be so damn angry but still feel like you need to "play along" in order to get some kind of help.

It's amazing to me that there is a stigma in regard to mental health, even with medical professionals, but there definitely is.

I have no history of anything mental, but I've had the occasional doctor try to blame various problems on stress or suggest it's in my head..just because they couldn't figure it out. I understand your frustration.

Maybe go with a list of questions, so that you stay on track and don't move on until each is answered. 1. What are you going to do to relieve my pain?
There definitely is a stigma, and the thing is that if my problems had been due to stress? They're not handling it right anyway. If someone is so stressed they're having psychosomatic pain severe enough to land them in the ER several times in a month - that person needs help, psychiatric or otherwise. Wiseass remarks and bad attitude from doctors won't help that person either.

Or like I said to the last ER doc I saw - "so I'm imagining the GI bleed and anemia too?"

One doc even tried to excuse my anemia on stress. "Iron levels fluctuate naturally", he said. In combination with severe abdominal pain, positive occult blood test, and black stool? "Well, no, but the reason you're here is probably due to your psychiatric problems" *sigh*

This also, mostly due to things that are in my chart from when I was a CHILD.
03-04-2015, 08:01 PM   #8
Lady Organic
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Im sorry to read this. Its difficult to accept that with blood (tested positive) and mucus, doctors do not recommend a colonoscopy and dont take you seriously. Take pictures of your mucus and blood in the toilet and bring that to the next doctor you see. seems maybe awkward, but thats what I would do.
best wishes
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03-05-2015, 10:13 AM   #9
Izzie
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It's crazy that you have to get angry for things to happen, but! After a long conversation with a great nurse, who must have yelled at the doctor for me...

Colonoscopy next Wednesday.

Now I just hope they find something so I don't have to wait months for more tests...
03-05-2015, 03:53 PM   #10
UnXmas
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I've been in the ER 4 times the past month from the pain, twice I was sent home with aspirin despite crying from pain (I'm not a pain sensitive person, had an adult tonsillectomy a couple years ago and got by without pain meds) and have been in contact with a doctor because I can't eat. Or drink, really. I've lived on liquids for the past two days and still practically every other breath I take is accompanied by belching for at least 3 hours after I take a sip of anything that isn't water. Any kind of even remotely solid food or thicker liquid will result in severe pain.

To me, that's bordering on serious enough to warrant hospitalization, but the doctor told me to just "eat yoghurt" (which I can't - the pain and nausea would be excruciating), and completely ignored me when I said I can't do that. I don't even feel like I can keep properly hydrated atm.
There is a very real and detrimental stigma regarding mental illness and doctors dismissing physical symptoms as a result, and I'm sorry you're experiencing it.

If you were truly dehydrated, they would probably have noticed at the ER if they did things like check your blood pressure. They would probably have given you IV fluids if you needed them. They would admit you if you were completely unable to take in adequate nutrition to keep you well within a short time period. Long term, your health would suffer if you continued like this, but at the Emergency department, they only deal with the short term and immediate threats to your health. So try to take a bit of reassurance from your ER trips; as horrible and scary as things are for you, you are probably medically stable, though don't let that knowledge stop you going to the ER again if things worsen or if you need pain relief again.

You have to find the right doctors, doctors who take you seriously. Getting positive test results and a diagnosis may change the way some doctors treat you, but I don't know that you'd want doctors who would treat you badly if it weren't for a test result. It can be very hard to find the right doctors for you, but keep going, and ignore any who don't treat you well. A lot of people get the kind of attitude from doctors that you're experiencing - don't feel it reflects badly on you or that it means your physical symptoms aren't serious or severe.
03-05-2015, 06:29 PM   #11
Izzie
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There is a very real and detrimental stigma regarding mental illness and doctors dismissing physical symptoms as a result, and I'm sorry you're experiencing it.

If you were truly dehydrated, they would probably have noticed at the ER if they did things like check your blood pressure. They would probably have given you IV fluids if you needed them. They would admit you if you were completely unable to take in adequate nutrition to keep you well within a short time period. Long term, your health would suffer if you continued like this, but at the Emergency department, they only deal with the short term and immediate threats to your health. So try to take a bit of reassurance from your ER trips; as horrible and scary as things are for you, you are probably medically stable, though don't let that knowledge stop you going to the ER again if things worsen or if you need pain relief again.

You have to find the right doctors, doctors who take you seriously. Getting positive test results and a diagnosis may change the way some doctors treat you, but I don't know that you'd want doctors who would treat you badly if it weren't for a test result. It can be very hard to find the right doctors for you, but keep going, and ignore any who don't treat you well. A lot of people get the kind of attitude from doctors that you're experiencing - don't feel it reflects badly on you or that it means your physical symptoms aren't serious or severe.

You have a good point! If something truly emergent was going on, they would have noticed. Not that pain isn't emergent, but it's not necessarily life-threatening or anything.

I've decided that I'm bringing my dad along to the colonoscopy. Granted, I am 25 years old, but my dad has a tendency to get people on board, and considering my mental health history, I feel like I pretty much need to bring backup to get doctors to believe me...

And if the colonoscopy doesn't show anything I'm sure I'll have to fight them again for more tests.
03-05-2015, 09:44 PM   #12
Marlena
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You go girl, and Dad!!!!
03-06-2015, 04:44 AM   #13
UnXmas
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Nothing wrong with bringing your dad along. My mum often comes with me to appointments. All patients are advised to being someone to colonoscopy tests with them anyway, as the sedatives they give you mean you shouldn't drive for the rest of the day.

I hope the colonoscopy is useful to you. You're probably hoping for a positive result, i.e. you want something to be wrong, and that can seem a weird situation to be in for people who haven't been in the position of having undiagnosed symptoms. But lots of people on this forum understand that desire to have answers which can only come if tests find the cause of the problems. But at the very least a colonoscopy will rule out a lot of potential diagnoses, so it will get you closer to finding out what's wrong with you no matter what it shows.

Last edited by UnXmas; 03-06-2015 at 05:01 AM.
03-06-2015, 05:00 AM   #14
UnXmas
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You have a good point! If something truly emergent was going on, they would have noticed. Not that pain isn't emergent, but it's not necessarily life-threatening or anything.
I hope it didn't sound like I was saying your pain isn't serious, as there's clearly something very wrong, it's just that emergency departments are only good at dealing with specific kinds of medical problems, so if your dehydration hasn't reached a point where you need IV fluids to stabilise you, there's not much else they can do about it. It's the consultants who will figure out what's wrong and try to treat it, so if you can hang on through a few appointments and tests you might get further forward. Even if they can't work out what's wrong straight away, a consultant may be able to help manage your symptoms and provide pain relief on a long term basis, which Emergency doctors usually can't do.

Last edited by UnXmas; 03-06-2015 at 06:42 AM.
03-06-2015, 01:21 PM   #15
Izzie
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I really appreciate all the support and tips, I think my friends and family are getting sick of my complaining and it's really nice to talk to people who have gone through similar things.

A question while I'm at it: I've been taking Omeprazole for a couple days to ease the acid reflux and burning pains in my stomach, and it seems to be helping the belching issue somewhat too. Before my gastroscopy, my doctor thought I had an ulcer, but the gastro didn't show anything.

Would it make sense for Omeprazole to help IBD symptoms? Is it possible to miss an ulcer during a gastro (didn't take biopsies)? Have any of you had ulcers as part of your IBD? Or could an IBD cause acid reflux/excessive belching type symptoms (that I associate with an ulcer)?

Because I have such obvious pain in the splenic flexure area during palpations, JUST an ulcer seems unlikely, but I also wasn't expecting the Omeprazole to make much of a difference.

I don't even know what I'm asking, but does any of this sound familiar to any of you?
03-06-2015, 01:47 PM   #16
Cat-a-Tonic
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I have severe GERD and I sometimes get belching episodes, although not as often and not as severe as you've described. The belching for me most frequently happens when I'm exercising, particularly if I'm working my abdominal muscles a lot - then I'll start to belch repeatedly (which is actually helpful at times, specifically if there are creepy guys leering at me in the gym then the belching usually scares them off!). So your belching could be related to undiagnosed GERD/acid reflux, and that could be why the omeprazole is helping. It's definitely possible to have both GERD and IBD, though, so it may just be a case of figuring out which symptoms are due to what illness.

I'm always shocked when I hear that doctors do a scope and don't take biopsies. That's such a shame that they didn't bother to take any during your upper endoscopy, but with your upcoming colonoscopy, make sure that they take biopsies! And lots of them! Things like Crohn's and also microscopic colitis have "skip patterns", meaning the inflammation is patchy and not uniform. Particularly when the inflammation is microscopic, things can look totally normal visually but the biopsies can tell a very different story - hence why you need to ensure that they take a bunch of biopsies.

I wish you a lot of luck on Wednesday and I hope you get some worthwhile results. Please keep us posted on how it goes!
03-06-2015, 02:27 PM   #17
lenny
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I believe there have been studies showing people who enter the hospital alone, do not fair as well as those who have at least 1 other person with them, partially because they do not receive as good of care. My husband or I have had to step in on behalf of our reserved son, time and time again. I hate to think what they would have put him through/missed had we not. I thinks it's good to have backup at any age.
03-06-2015, 03:19 PM   #18
UnXmas
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I have reflux and heartburn, but they see the evidence clearly when I have scopes. Not just ulcers, they see the damage in my stomach from bile reflux, and in my easophagus from stomach acid reflux. I.e. gastritis (inflammation of the stomach) and easophagitis (inflammation of the easophagus). They could see it with the scope - they took biopsies anyway, but told me afterwards, before the results came back, that they had seen it. At my last scope, they also saw inflammation from where I'd had an NG tube. They could distinguish these types of inflammation from Crohn's inflammation.

Biopsies do pick up on things not visible during the scope, and can identify what type of inflammation, etc. has been seen. I'm not sure if they'd miss an ulcer. I'm surprised they didn't take biopsies anyway. You would have thought they'd take some since they were doing the scope anyway. Is there some risk with taking biopsies they try to avoid?

The pain I get from reflux, heartburn, etc. - the upper digestive system problems - is usually in short episodes only, but it can be very painful for just a short time. Usually in the evenings, it will just be uncomfortable for a few hours, but every now and then I'll have a few minutes of pain that is impossible to ignore. I don't get any belching. I do get food coming back up my throat (very different from vomiting; I don't vomit and don't get nausea that often). But I'm not sure how typical of heartburn or GERD all that is. I've never found any heartburn meds help me.

Have you noticed whether particular foods are associated with these symptoms more than others? Some foods are known to make them worse, but some - milk especially - can relieve them. I would say it could explain your upper digestive problems, but I don't know that they'd miss it with the gastroscopy.

Last edited by UnXmas; 03-06-2015 at 03:55 PM.
03-06-2015, 04:27 PM   #19
Izzie
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Granted, I don't really trust the idiot who performed the scope in the first place. He was horribly rude to me more than once, and the nurse treated me like a complete nut job. Wouldn't even let me lock the bathroom door because of my "psychiatric problems", and physically held me down on the table when I wanted to sit up for a bit because the doctor was 20 minutes late...

Sometimes I wonder how the chart system works, when doctors don't know I'm allergic to penicillin, but are fully aware of the anxiety symptoms I had 5+ years ago...

The latest doctor I've spoken to who scheduled my colonoscopy even suggested another gastroscopy if nothing shows up, because he thought the work seemed "sloppy" (because of them not taking biopsies and writing weird stuff in the chart...) and because I had been on omeprazole for a week prior (apparently it can mask some signs of ulcers/other problems?).

I haven't noticed specific foods causing more problems than others, but any kind of solid foods sets it off currently. Hasn't been like this since my other symptoms started, it's gotten gradually worse. I do recognize feeling food come back up my throat though, and I get heartburn as soon as I lay down.

Regardless I figure I might as well stay on the Omeprazole. If it's just easing symptoms of an underlying condition - great. If I actually have an upper GI problem - might keep it from getting worse 'til they figure that out.

I admire those of you who manage to go undiagnosed for years. While I don't think I'm excessively anxious, not knowing what the problem is does stress me out. My grandfather had surgery for colon cancer recently, my dad has lung cancer, - and while I'm only 25 years old, the fact that there's been so much cancer in my family lately concerns me, I guess...
03-06-2015, 05:54 PM   #20
Cat-a-Tonic
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The food coming up your throat, my doctor calls that "regurgitation" (which always makes me think of birds spitting up food for their babies). I get that symptom myself, I can even regurgitate plain water - it's all part of my GERD. It sounds like you most likely do have some sort of GERD or acid reflux going on, with that and the belching and the heartburn. It's probably fine to stay on omeprazole for now, especially since it's giving you some relief. Just make sure you're taking calcium & vitamin D with it as omeprazole is one of those medications that can leach bone mass from you over time.

Please try not to worry too much about cancer. I have a family history that includes a lot of cancer as well (maternal grandmother died many years ago of breast cancer, maternal grandfather died of colon cancer and he may have had underlying undiagnosed IBD or celiac disease). But you're very young - if you're concerned about unchecked IBD causing cancer, please try not to worry about that. My understanding is that it typically takes many years of IBD flaring out of control and going untreated before it ends up causing cancer, and even then it doesn't cause cancer that much more often than the general non-IBD population (I believe I've read that IBD'ers have about a 10% higher chance than non-IBD'ers of getting colon cancer). My grandfather who died of colon cancer and may have had IBD, he was in his 60s when he passed away and he never had any treatment other than he took a lot of Rolaids. It took that long for the cancer to finally develop, and like I said, we don't even know what his underlying condition may have been. So please, don't worry - you're fighting for tests and answers and you're likely going to be put on some medication to treat it once you get diagnosed, and treating the illness will mitigate your cancer risk. I know, it's easier said than done to not worry, but believe me, the odds of you getting colon cancer at your age are extremely slim.
03-06-2015, 06:43 PM   #21
Izzie
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For those of you with GERD/acid reflux - are laxatives a horrible idea?

My doc prescribed me Laxido, which I could use atm (I already love how no one's concerned about TMI on this forum), but I don't want to take it if it's going to make me feel even more like hell.

The docs know about all this, of course, but sometimes anecdotal proof seems more reassuring than "yeah yeah, take anything, you should be fine!" :P
03-07-2015, 05:31 AM   #22
UnXmas
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For those of you with GERD/acid reflux - are laxatives a horrible idea?

My doc prescribed me Laxido, which I could use atm (I already love how no one's concerned about TMI on this forum), but I don't want to take it if it's going to make me feel even more like hell.

The docs know about all this, of course, but sometimes anecdotal proof seems more reassuring than "yeah yeah, take anything, you should be fine!" :P
I've taken all kinds of laxatives over the years, they've never affected my upper digestive system symptoms, though the one you have is not one that I've tried. But you can probably just check the leaflet for the list of medication contraindications.

The latest doctor I've spoken to who scheduled my colonoscopy even suggested another gastroscopy if nothing shows up, because he thought the work seemed "sloppy" (because of them not taking biopsies and writing weird stuff in the chart...) and because I had been on omeprazole for a week prior (apparently it can mask some signs of ulcers/other problems?).
I was on a PPI during my last endoscopy, it didn't affect the results.
03-09-2015, 03:44 AM   #23
Izzie
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So, I'm doing my colonoscopy prep tomorrow and eh... how is it even possible to drink so much liquid?! Isn't it dangerous to drink a friggin GALLON of the stuff?

Well, obviously not, but wow. This feels daunting.

Those of you who have done it - how should I expect to feel? Any tips?

Also I'm wondering whether the timing is super important? I've been told to have half a gallon between noon and 2 pm and then a 6-hour break before the next half gallon.

Problem is I have plumbers coming by to fix something relatively emergent after lunch, and would very much like to wait to get this whole prep thing started until AFTER they've been here....

Last edited by Izzie; 03-09-2015 at 04:43 AM.
03-09-2015, 06:39 AM   #24
UnXmas
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I have an ileostomy now, so never have to do bowel preps any more, thank goodness. I won't lie, they're not fun, but it's only a day.

Drinking the stuff was the worst part for me. Timing doesn't have to be exact, but do the best you can with it.

Once you've drank the prep (or as much of it as you can stomach), stay near a bathroom and you might want some kind of barrier cream - like E45 - because the diarrhoea can make you sore.
03-09-2015, 07:06 AM   #25
Izzie
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Yeah I'm worried I won't be able to keep it down, honestly. It's a LOT. Oh well, hopefully it'll work out. Might not be in my top 10 favorite days ever list, but I'll live.
03-09-2015, 07:36 AM   #26
lenny
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Last time I had a colonoscopy, I drank about half of what they told me to, because I felt empty and didn't see the need to suffer additonally. Doc said later, I was clean as a whistle. So, you may not need to drink it all. If it keeps running clear, I think you're done.
03-09-2015, 08:00 AM   #27
Marlena
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It is possible, just don't think too much about it. And STAY CLOSE to the bathroom. Soon you'l be as my gastro guy says "squeaky clean" Here at least the stuff doesn't taste as bad as it used to. It helps to just get it over with. If it's bothering you, take as much as you can, wait a bit and do more until it's all gone. It is the absolute worst part of the whole procedure, the rest is a breeze.
03-09-2015, 08:07 AM   #28
lenny
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After the I.V. is in, I'd go so far as to say, the rest is fun. My doctor acts more like a bartender, than a doctor..gets me super awesomely tipsy and then I have a nice nap.
03-09-2015, 08:09 AM   #29
Izzie
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After the I.V. is in, I'd go so far as to say, the rest is fun. My doctor acts more like a bartender, than a doctor..gets me super awesomely tipsy and then I have a nice nap.
Hah! I know I thought the gastroscopy was hell, but at the same time I was so doped up I can't really connect to the experience emotionally at all. Intellectually I know I hated it, but I can't feel any kind of anxiety about it at all.

Thank goodness for the wonders of modern medicine, I guess.
03-09-2015, 09:10 AM   #30
UnXmas
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After the I.V. is in, I'd go so far as to say, the rest is fun. My doctor acts more like a bartender, than a doctor..gets me super awesomely tipsy and then I have a nice nap.
I agree, once you've done the laxative, the rest is easy, but if they offer you a choice of sedatives, I would go for the strongest! You'll need someone to help you get home though, you definitely can't drive after the colonoscopy, any sedative they give you will mean you shouldn't drive, and you shouldn't really use public transport on your own either. The meds they use usually ensure the test is not that bad at all, but they will make you very sleepy afterwards, and possibly uninhibited as well, so be prepared to embarrass yourself a little. But on the other hand you may find you have no memory of any of it.
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