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Sunshine Sassie

Afraid Of Colonoscopy/endoscopy

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Hi everyone,

 

I'm scheduled to have my first colonoscopy (for chronic constipation/abdomen pain) and endoscopy (for Celiac testing, low IGA) in March. I've been waiting to have these tests for almost three years (finally have insurance) but now I am so scared and nervous. I'm 26 and have only been put to sleep once to have my wisdom teeth removed. I think the part that makes me the most nervous is being put to sleep. I also am not fond of things being inserted into me both ways!

 

I'm scared they'll find something horribly wrong and then I'm scared they won't find anything wrong and I won't know what to do. :unsure:

 

I'm probably being a huge baby but if anyone would like to reassure me on how safe these procedures are it would be much appreciated. Also, was anyone else's colon/endo done at a doctors office instead of a hospital?

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You will do fine! The worst is the prep! I got pretty sick of broth and jello! I was hungry!

My procedures were done at an endoscopy center across from the hospital.


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Don't know anything about colonoscopy, but I was there for my then 10 year-old's endoscopy (almost exactly a year ago).  

 

It was pretty fast, and I believe it is considered a minor procedure.   The whole process was explained to my husband and I, and our child.   It was very reassuring and not at all stressful.

 

The doctors asked me to stay in the room with my daughter until she was out.   That only took a few minutes, then I was in the waiting room for only about 15 minutes, when it was all done.   The doctors came out to us, and showed us images of her small instestine.  After the two doctors spoke to my husband and I, we were taken to see our daughter.  She was already awake and eating an ice pop.   We took her home not long after the procedure, and she went back to school the next day.

 

We got the actual test results in a week or two.   My daughter was diagnosed with Celiac.

 

It really wasn't a scarey or stressful experience for me or my daughter.

 

You will be fine.  

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Both procedures are considered safe - I've had many searching for the causes of GERD and neuropathy. I have celiac disease.

 

 I concur that the worst part is the colon-cleansing prep - just be prepared to spend a significant amount of time in the bathroom the night before.  Nuff said on that.  The procedures themselves were not painful nor had any lasting side-effects.  Maybe a light, short-lived throat soreness because of the endoscope.

 

The day of the procedure, you go out like a light, then wake up in the recovery room.  3 pieces of advice:

1) You must have someone to take you home, the anesthesia prohibits you from transporting yourself

2) Have someone with you in the recovery room when the doctor talks with you because you will remember nothing

3) go home and sleep off the anesthesia and you will be fine the next day.  Eat lightly at first.

 

Just remember that you can't be effectively treated or get better until they discover the causes of your symptoms. 

 

Good luck, you'll do fine.

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My endoscopy was performed in small private hospital.  My first procedure, too.  Dreaded it.  Wanted to forgo whatever it was they put in my arm - in the UK you can have it withougt any sedation or you can have some sort of shot that kind of knocks you out, although you are still awake, kind of.   My doctor and others told me that it would be fine and I should have it.  In fact my doctor described it would be like feeling drunk without the hangover afterwards.  I have never been drunk (alcohol makes me feel sick and headachey) so I was a bit intrigued.  Got into the room and was still saying I didn't want the knock out drops or whatever it was they were going to do.  A very jolly nurse told me not to worry, and joked that they had been practising all day and had finally got the hang of it!  I can vaguely remember the procedure, a bit like a flashback, and also being asked to get off the trolley to get onto a bed to recover.   My throat felt very slightly bruised afterwards but honestly, it was fine, and I would have it again if necessary and would not worry about it next time.

 

The downside was apparently I talked throughout, goodness knows what I said.  Poor medical staff.


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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As other folks have said, you won't be "put to sleep" in the sense of general anesthetic. Just a nicely sedating IV—you'll be sleepy and free of the anxiety you're currently feeling. The prep is annoying, but I would suggest that the worst part is the worry you're experiencing. Try to relax and know that we've all done it—some many times—and we're all here and happier for it! Getting tested is important. Try a relaxation exercise and when you worry about the upcoming procedure, remember that it's no big deal and it's a big step towards feeling better.


33 y/o male

Celiac and proud since 2007 - endoscopy/biopsy

Confirmed HLA genes 2014

Strict gluten-free diet since diagnosis

Post-eating nausea despite diet began Aug 2014

 

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I woke up from my Colonoscopy feeling great!!! just relieved, which is how you will feel too..There is nothing to it, but I wont lie, the prep is not pleasant, in fact its the worst part of the whole procedure. You will need a jar of Vaseline to keep your undercarriage from getting really sore, and don't be alarmed if you are sick, I was and nobody thought to mention that that can happen, apparently its normal for some people.  You will not be asleep for long though, as its a relatively speedy procedure. :D


Diagnosed Ulcerative Colitis Feb 2014 (in remission)

Diagnosed Lichen Schlerosus May 2014

Diagnosed GERD Aug 2014  

Gluten free from Sept 2014

Dairy free from Dec 2014

Sulfite free from Sept 2015

 

 

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I am a huge baby too!! Cancelled my endoscopy! I am a new mom though and I have horrible sleep deprivation. My body isn't ready for any procedures. But. Yes I'm terrified. Having a baby makes me fear death more than anything. I want to be there for him!! But getting the test is also for him too so I can see if his chances are higher. I don't know what to do. Google celiac nonstop 24-7 cry all the time. I guess if I was healthy I would just do it as all this worrying is worse..


Breastfeeding mama to a gorgeous 6 month old boy!

 

 

 

 

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I actually did a lot of research on endoscopy recently, and from what I can gather its a lot less hassle than having a colonoscopy (the prep) and you will be sedated/sleeping...what I can tell you though is living with fear every single day, imagining the worst every single day is going to be far more detrimental to your health....Maybe you are feeling a bit low, having just had a baby, perhaps a visit to the docs first might be a good plan, you sound very anxious and crying all the time is a sign of depression.  I think you need to take one thing at a time and I would definitely go and speak with your doctor first and perhaps he can give you something to help you over this stressful time and then you can make the appointment for your endoscopy.  Whatever you do, please do it soon.

 

Best to you.


Diagnosed Ulcerative Colitis Feb 2014 (in remission)

Diagnosed Lichen Schlerosus May 2014

Diagnosed GERD Aug 2014  

Gluten free from Sept 2014

Dairy free from Dec 2014

Sulfite free from Sept 2015

 

 

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If I can assuage any fears:  I've had at least 4 endoscopy procedures, really this is not a procedure to be feared. Really!  I've had no side-effects.

 

Other than sleeping off the anesthesia afterwards [yes - an excuse to sleep!], there is nothing that is required other than to show up with an empty stomach. 

 

You must try to get beyond the fear that it will find something.  Best case: it will find something that is treatable, which is the first step to feeling better.

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As others have said, the worst part is the prep.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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Thanks for the reassurance Zebra007. I'm actually not afraid of what they find, I'm afraid of not waking up after the endoscopy.. or having a heart attack during it or something from the procedure. I dunno, it's just strange how Joan Rivers died from it (endoscopy). I know there is a chance of mortality from the endoscopy.

 

Sunshine Sassie, how did it go?

Breastfeeding mama to a gorgeous 6 month old boy!

 

 

 

 

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Firsttimemama2014, my doctor told me that the risk of death is higher driving TO an endoscopy than from the endoscopy itself. :-) I wonder if you may be experiencing post-partum depression/anxiety? Just something to consider. And congratuations on the new baby!

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 I dunno, it's just strange how Joan Rivers died from it (endoscopy). 

 

 

 

 

But, Joan Rivers was 80 years old.  Advanced age does add risk to many procedures.  If you are in that age bracket, you might want to speak to all of your doctors about whether anesthesia is OK for you.  


 

 

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Hello and a big thank you to everyone who replied to this post! I apologize for posting so late; shortly after I started this topic my state was hit with a huge ice/snow storm that left my parents and grandparents without power for almost a week! Everyone is now with power and the snow has melted for now  B)

 

Every one of you who posted made me feel more and more confident and less scared about the procedure...thank you for replying to me  :wub:  It was nice to read everyone's experiences.

 

I just had both procedures done this morning and I am happy to report it wasn't as bad as I thought (you guys were right) and my colon is perfectly fine. My doctor told me she thinks I do have Celiac because of the condition of my small intestine (I am really glad I pushed for the endoscopy to be done). Now I am left with a question I am sure many of you have faced: what if the biopsy comes back negative? What does that mean?

 

Firsttimemama2014 you and I sound like we have the exact same fears! I hope some of these replies eased your mind like they did mine. I just had to tell myself that I could be hurting myself worse if I don't find out what's wrong. It also helps me to know that they perform them on children and if children can do it I thought surely I can too ;) But I understand your anxiety with being put to sleep and I was also worried about Joan Rivers...as far as I could read she was having something done with her vocal cords which I believe caused her throat to swell (she wasn't being tested for Celiac) plus there is a higher level of risk on any procedure when you are in that age range. Hope that helps a little, it did me.

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If your biopsy comes back fine—congratulations, you’re not suffering the inflammation and villous atrophy that most of us have had to deal with!

 
However if the “optics” of your endoscopy suggested celiac disease, your biopsies will likely confirm this. IF you’ve stuck to a gluten-inclusive diet (have you?)
 
If you have some optical change in your gut, but a clean biopsy, there are a variety of other conditions that may cause some inflammation or visual difference in the proximal gut, all of which are treatable & manageable. Your doctor should have next diagnostic steps for you if that is the case. There are also a number of “functional” disorders, which mean that though you’re experiencing frustrating symptoms, there’s no damage in your gut. Again, these are treatable.
 
Glad to hear the procedures were no big deal. I’m sure Joan Rivers was having a more complex procedure—and was also eighty-plus! We live in a good time, inasmuch as the sedative drugs used for these procedures are safe and very effective. I’ve had two endos in two months, and likely another one this year; I’ve learned to shrug them off. Last time I got mad at my GI for not sedating me enough!!

33 y/o male

Celiac and proud since 2007 - endoscopy/biopsy

Confirmed HLA genes 2014

Strict gluten-free diet since diagnosis

Post-eating nausea despite diet began Aug 2014

 

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Yes Sunshine Sassie! We have a LOT in common! Despite you being 10 years younger of course :) I wasn't brave enough to get the endo and colonosopy done at once but I DID get my endo done TODAY! I didn't get any sedation except for a 5mg valium pill 1 hr before the procedure. The put an IV in me in case but I didn't need it! It felt really strange.. not painful but still pretty unnatural. But, hey we're both still alive after the fact woo hoo! Pats on our backs for going ahead with it!!

 

I was more worried about the endo vs the colonoscopy but I still am impressed that you did both at the same time! Lets compare results in a few weeks :)


Breastfeeding mama to a gorgeous 6 month old boy!

 

 

 

 

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If your biopsy comes back fine—congratulations, you’re not suffering the inflammation and villous atrophy that most of us have had to deal with!

 
However if the “optics” of your endoscopy suggested celiac disease, your biopsies will likely confirm this. IF you’ve stuck to a gluten-inclusive diet (have you?)
 
If you have some optical change in your gut, but a clean biopsy, there are a variety of other conditions that may cause some inflammation or visual difference in the proximal gut, all of which are treatable & manageable. Your doctor should have next diagnostic steps for you if that is the case. There are also a number of “functional” disorders, which mean that though you’re experiencing frustrating symptoms, there’s no damage in your gut. Again, these are treatable.
 
Glad to hear the procedures were no big deal. I’m sure Joan Rivers was having a more complex procedure—and was also eighty-plus! We live in a good time, inasmuch as the sedative drugs used for these procedures are safe and very effective. I’ve had two endos in two months, and likely another one this year; I’ve learned to shrug them off. Last time I got mad at my GI for not sedating me enough!!

 

A negative biopsy does not rule out Celiac Disease.  If there is inflammation of the small intestine or changes that can be seen with the naked eye, it very well still could be Celiac, regardless of a negative biopsy.  Patchy damage is patchy damage and this is where people get bad info from doctors when they don't hit the right spot.

 

If the biopsy comes back negative for Celiac, the next step would be to do a gluten free trial and have genetic testing done, to see if it's even possible to have the genetics to trip for the disease.  There may also be signs of early damage from Celiac, such as increased numbers of IEL's or scalloping of the duodenum.  All of this should be taken into account before excluding Celiac.

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Thank you to jddh and Gemini for giving me some feedback about the possible outcomes of my biopsy. I'm still in the mind-set of "I don't want anything to be wrong, but I want to find something so I can have a solution" lol

 

Firsttimemama2014, what are the odds we had our endoscopy done on the same day! :lol:  I certainly want to know how your results come back!

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That's a very understandable reaction. Despite our various suggestions, you might benefit from refraining from Googling all the many possibilities while you're waiting for results. Chances are the answers will be simple and easily manageable! Don't sweat the WebMD extremes ;)


33 y/o male

Celiac and proud since 2007 - endoscopy/biopsy

Confirmed HLA genes 2014

Strict gluten-free diet since diagnosis

Post-eating nausea despite diet began Aug 2014

 

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Results are in!!!! INCONCLUSIVE.

 

What a waste of time. I told the dr that I was gluten-free for 2 weeks before the test and she said it shouldn't have impacted the results.. but now we'll never know. Maybe I healed? Maybe she didn't catch it? Maybe I don't have it but then what the heck do I have?

 

Regardless, she told me to go on a gluten-free diet and we will proceed with further (useless) testing now.

 

Sunshine Sassie, what were your results?


Breastfeeding mama to a gorgeous 6 month old boy!

 

 

 

 

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Hey firsttimemama2014, I was just checking the forum to see if you had received your results; I wasn't even aware that inconclusive could be a result and that is even more frustrating than my results!  After being told I most likely had it my biopsy came back negative  and I was more confused than ever. I started a new topic titled, Can I Officially Rule Out Celiac and received some great advice that would relate to you as well! I would hate for you to have to go through another endoscopy after the stress you endured from the first one  :( Did they give you an explanation for why it was inconclusive? Also nvsmom told me it would be helpful to post my endoscopy results; that way we could get some feedback from people who have a lot of insight to what they mean. I want you to find more answers!

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