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Crohn's Disease Forum » Tests for IBD » Normal colonoscopy/upper gi. Feeling lost


 
08-13-2010, 03:51 PM   #1
rctriplefresh5
 
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Normal colonoscopy/upper gi. Feeling lost

hey im dave...ive been having stomach problems for 6 years. i just had a colonoscopy/upper gi a fe hours ago that led all the way through to my illeum...and they found nothing wrong. im so upset over this. doc says i have IBS...in other words...he doesnt know whats wrong.

i looked at my pictures,and i see a lot of red areas...so i would think that was inflammation.

im so upset,noone knows whats wrong..yes chrons is a horrible disease,but ithought i had the aanswer to my distress...i have bad symptoms anyways..might as well get an answer..such as a UC OR CHRONS DIAGNOSIS I GUESS.

Last edited by rctriplefresh5; 08-13-2010 at 03:53 PM.
08-13-2010, 03:57 PM   #2
Cat-a-Tonic
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Hi RC, welcome to the forum. I know how you feel, I am also undiagnosed and every test that I've had so far has come back normal. There have been a few people on the forum lately who have had numerous tests over the span of several years who are just recently diagnosed, so I'm not giving up, and you shouldn't either. I know it can get incredibly frustrating and discouraging, and I've dealt with a lot of depression and I've cried a lot because of this stupid mystery illness that I've got that nobody can seem to figure out. But I know eventually I'll have answers and I have to fight for them because nobody else is going to fight this one for me. And you've got to do the same for yourself. Don't give up, demand more tests, have a look around on the forum as there's a wealth of information on here. Feel free to vent or ask questions anytime.

BTW, I've also had a (very condescending) doctor tell me that I've got IBS and that I'm depressed. He wasn't my regular doc and he looked at my file for about 5 seconds and then he looked at me and said that I've got IBS and I "look depressed" and then he tried to prescribe me a bunch of anti-depressants. Needless to say, I haven't been back to that doc. If your doc is taking a similar attitude, I would start looking for a new doctor. If you tell us where you are from, I'm sure there's someone on here near you who can recommend a good GP or GI.
08-13-2010, 03:57 PM   #3
rui
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hey im dave...ive been having stomach problems for 6 years. i just had a colonoscopy/upper gi a fe hours ago that led all the way through to my illeum...and they found nothing wrong. im so upset over this. doc says i have IBS...in other words...he doesnt know whats wrong.
Hi dave im going To that To .... Sow im giving you An. Advise that im not folowing be calm if you can...go for more tests other doctores etc... Because you know better you body that some one else.
Regards and welcome To the fórum.

Last edited by rui; 08-13-2010 at 04:09 PM.
08-13-2010, 04:11 PM   #4
DustyKat
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Hi Dave and

I'm glad you found your way here. Cat has wrapped things up nicely and as you can see you are not alone in this, not by a long shot! I guess the key is to believe in yourself and don't give up, keep fighting and badgering until you get the answers you need, be your own best advocate. Stick around and browse the forums and any questions just fire away. Are you taking any medication?

Welcome aboard!

Take care,
Dusty
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08-13-2010, 04:15 PM   #5
rctriplefresh5
 
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Hi RC, welcome to the forum. I know how you feel, I am also undiagnosed and every test that I've had so far has come back normal. There have been a few people on the forum lately who have had numerous tests over the span of several years who are just recently diagnosed, so I'm not giving up, and you shouldn't either. I know it can get incredibly frustrating and discouraging, and I've dealt with a lot of depression and I've cried a lot because of this stupid mystery illness that I've got that nobody can seem to figure out. But I know eventually I'll have answers and I have to fight for them because nobody else is going to fight this one for me. And you've got to do the same for yourself. Don't give up, demand more tests, have a look around on the forum as there's a wealth of information on here. Feel free to vent or ask questions anytime.

BTW, I've also had a (very condescending) doctor tell me that I've got IBS and that I'm depressed. He wasn't my regular doc and he looked at my file for about 5 seconds and then he looked at me and said that I've got IBS and I "look depressed" and then he tried to prescribe me a bunch of anti-depressants. Needless to say, I haven't been back to that doc. If your doc is taking a similar attitude, I would start looking for a new doctor. If you tell us where you are from, I'm sure there's someone on here near you who can recommend a good GP or GI.
thanks for the welcome!
The doctor im seeing has a really good bedside manner,and he is the same one that performed the colonoscopy,but i am discouraged he said i have IBS, so i think maybe i need to try another gi. these are the first 2 tests ive done over my 6 year stomach problem span....i was mostly lazy,and thought itd go away...which sometimes it does.
2 years ago, i went to a different gastro,and i chickened out when he said i need a colonoscopy/upper gi....so a few months ago i decided i needed it done, and i found this guy. he did an ultrasound which was normal. oh i THINK ive been tested for celiacs by the guy i went to two years ago.

one thing i dont like about this doctor,is that he told me he would not do my procedure without anesthesia. i wanted to try it unsedated...although they used propofol which i was alright with.
i was not going to allow versed.

anyway,i was talking to the nurse before my procedure..and she said a doctor there performs these procedures with no sedation. she told me his name but it was a hard to spell name,and ifelt embarassed to ask..as she said after i asked a second time that my doctor was good.

the reason iwanted to know his name is that a doctor who is comfortable adhereing to requests such as sedationless colonoscopies will be more likely to listen to patiets concerns...and is also prob very knowledgeable about gastroenterology,as well as a guy who is not just out for money.

anyway, i am located in monmouth county new jersey, and my current gi is kenneth belitsis.


oh and thanks rui for ur post.
08-13-2010, 07:33 PM   #6
Chris1984
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hi there, welcome.

i know exactly how you're feeling, tests with no diagnosis just feels like a giant waste of time. my first round of tests also came up clean and doc said it was IBS and didnt offer much after that, im convinced he just liked doin his colonoscopies for $600 a pop. the best thing i did was find a new doctor. it took almost 2 years for me to get a diagnosis and i was ready to give up many times along the way.

there are still things to explore in your case so dont get discouraged. i hope everything works out for you.
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08-13-2010, 07:37 PM   #7
ameslouise
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Hi RC and welcome. I hope you start to find some answers soon!

I have never heard of a colonoscopy being done without sedation! I frankly can't imagine not having sedation - I don't tolerate pain well and I think it would be quite painful without it.

I hope you start to feel better soon!

-Amy
08-13-2010, 07:38 PM   #8
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Hi Dave, welcome!! I'm glad Cat-a-tonic has replied. She's always the first one I think of when I hear a story like yours. All I can say is be like Cat, she's nothing if not persistent. Both of you will eventually get the answers you're looking for. Good luck!!!
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08-14-2010, 05:56 AM   #9
Astra
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Hi and welcome

Yeah, Cat sprang to mind reading your post!
I had a dx of IBS for 15 years! I was mental, depressed and neurotic! No I wasn't, I had Crohns!
Persist and insist! get a second opinion, just cos the inflammation wasn't there during a scope, doesn't mean it's not there! if that makes sense!
here read this to compare IBS and IBD, check your symptoms using the table

http://ibdcrohns.about.com/cs/ibs/a/diffibsibd.htm

good luck
lotsa luv
Joan xxx
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08-14-2010, 07:36 AM   #10
rctriplefresh5
 
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Hi and welcome

Yeah, Cat sprang to mind reading your post!
I had a dx of IBS for 15 years! I was mental, depressed and neurotic! No I wasn't, I had Crohns!
Persist and insist! get a second opinion, just cos the inflammation wasn't there during a scope, doesn't mean it's not there! if that makes sense!
here read this to compare IBS and IBD, check your symptoms using the table



good luck
lotsa luv
Joan xxx
well some of my symptoms are IBS exclusive...and some are IBD exclusive!!!!!!!!
i have alternating diarrhea and constipation which is IVS exclusive
but i have loss of appetitie which contributes to weight loss which is ibd exclusive!!!!!
i get eye problems..but the eye doctor has NO explanation despite tests ive done...i have random sore throats,chronic headaches etc...some days are better than others but they all suck...it seems with chrons you have chronic periods of remission..i seem to always be down...

ive had these problems for 6 years..but it doesnt really matter what i eat.....due to the loss of appetite, and the fact i dont want to be a skinny twig,ive resorted to eating foods that are considered not to healthy. i usually can go the entire day without eating anything...so if i ate something healthy at the end of the day id be at like 600 cals for the day...so thats why i eat one unhealthy meal a day lol....i usually live off of ensure plus and honey bbq perdue chicken lol.
08-14-2010, 09:04 PM   #11
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Oh boy, what would we do without this forum? I love you guys! I don't even mind spending another saturday night at home... with a sick tummy on the crohns forum

I've had a very similar situation, so sick that I could barely get out of bed for weeks... and the dr tells me i have "severe IBS". it's heartbreaking and can make you feel absolutely insane.

DAVE: here's a suggestion and i hope it helps. my GIs have yet to find a problem, though i clearly have one. i finally went to a great RHEUMATOLOGIST that has a reputation for treating people that have false test results. he did a complete ANA panel (expensive but worth it) and finally came up positive for IBD. at least then, they began treating me...

best of luck to you. hang in there, something will show up!
08-15-2010, 10:41 AM   #12
Mayflower537
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DAVE: here's a suggestion and i hope it helps. my GIs have yet to find a problem, though i clearly have one. i finally went to a great RHEUMATOLOGIST that has a reputation for treating people that have false test results. he did a complete ANA panel (expensive but worth it) and finally came up positive for IBD. at least then, they began treating me...
What is an ANA panel? A blood test? Wow, that is amazing your Rheumatologist found something that your GIs could not.
08-15-2010, 03:24 PM   #13
Chris1984
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The antinuclear antibody panel is a blood test that looks at antinuclear antibodies (ANA).

Antinuclear antibodies are substances produced by the immune system that attack the body's own tissues. http://www.nlm.nih.gov/medlineplus/e...cle/003535.htm

that test sounds pretty interesting, i wonder why my docs havent tried it on me. im goin to bring it up with him at the next appt.
08-16-2010, 06:55 AM   #14
rctriplefresh5
 
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The antinuclear antibody panel is a blood test that looks at antinuclear antibodies (ANA).

Antinuclear antibodies are substances produced by the immune system that attack the body's own tissues.

that test sounds pretty interesting, i wonder why my docs havent tried it on me. im goin to bring it up with him at the next appt.
this looks like an interesting test...but when u say expensive...how much are we talking...for like 50 bucks id consider it......

as for the colonoscopy/upper endocsoy
how do i know if he perforated anything? eating/drinking has been feeling weird...and sort of painful like i feel the food and liquid press against every part of my esophoguys and colon....
also im feeling it in my back as well which is weird....

******* great....i not only wasted my time......but now im in worse shape...my life is just great

also my intestines have been feeling tabby as well i was hoping it would go away but it really hasnt.. i think he perforated something...just great

i always had some stabbyness..but it feels lower like its in the coolon
it also seems harder to push out stool,and urine also.
08-16-2010, 07:03 AM   #15
DustyKat
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Hey rc,

If your bowel was perforated you wouldn't be left guessing. The symptoms are vomiting, fever and extreme abdominal pain.

Dusty.
08-16-2010, 10:17 AM   #16
rctriplefresh5
 
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Hey rc,

If your bowel was perforated you wouldn't be left guessing. The symptoms are vomiting, fever and extreme abdominal pain.

Dusty.
LOL DONT most of us have those symptoms anyways LOL!!!!!!!!

seriously though,i feel sore and beat up..should that go away? is there anything else that could have happened besides perforation
08-17-2010, 04:03 AM   #17
rctriplefresh5
 
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bump
08-17-2010, 06:23 AM   #18
Cat-a-Tonic
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I felt really awful after my colonoscopy, too. Like waves of massive pain every 10 minutes or so. I would double-up from the pain, it was like a huge cramp that started in my abdomen and radiated outwards. Fortunately it went away after a couple of days. When the pain started, I immediately called my GI, and he said, "If pain is one of your usual symptoms, then it wouldn't be unusual for you to have more pain on top of it after a procedure like that." It sounded to me like he was just guessing, but he did say that if the pain got worse, if I got more symptoms (like vomiting, etc) or if I got a fever that I should go to the ER right away. Fortunately that pain slowly went away, I think it was a combination of my body being really angry about the colonoscopy prep, the fact that they pumped a ton of air into my guts for the scope, and the fact that they took a ton of biopsies. I just had an upper endoscopy yesterday and don't feel that same pain that I did after the colonoscopy, so who knows.

So, call your doctor if you're unsure, but I would say that the advice I was given was pretty good - if your symptoms worsen or if you get new symptoms, definitely get checked out right away. Good luck, hope you start feeling better soon.
08-17-2010, 02:54 PM   #19
rctriplefresh5
 
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I felt really awful after my colonoscopy, too. Like waves of massive pain every 10 minutes or so. I would double-up from the pain, it was like a huge cramp that started in my abdomen and radiated outwards. Fortunately it went away after a couple of days. When the pain started, I immediately called my GI, and he said, "If pain is one of your usual symptoms, then it wouldn't be unusual for you to have more pain on top of it after a procedure like that." It sounded to me like he was just guessing, but he did say that if the pain got worse, if I got more symptoms (like vomiting, etc) or if I got a fever that I should go to the ER right away. Fortunately that pain slowly went away, I think it was a combination of my body being really angry about the colonoscopy prep, the fact that they pumped a ton of air into my guts for the scope, and the fact that they took a ton of biopsies. I just had an upper endoscopy yesterday and don't feel that same pain that I did after the colonoscopy, so who knows.

So, call your doctor if you're unsure, but I would say that the advice I was given was pretty good - if your symptoms worsen or if you get new symptoms, definitely get checked out right away. Good luck, hope you start feeling better soon.
whats weird is that i didnt fart after the procedure...although i dont know if iwas farting while i was in the recovery room????
this worries me??any deviation from normal procedure worries me
oh cat i had one more question. you said you had a colonoscopy and it didntfind your problem. did they get to your ileum?? e said he got all the way to the terminal ileum...and still found nothing wrong...quite discouraging
08-17-2010, 06:40 PM   #20
Cat-a-Tonic
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I farted a little after my colonoscopy but not a lot. I could hear other people in the recovery rooms near mine and they were tooting it up a lot more than I was. Maybe that's why I was in such pain the next day. You may have been farting in the recovery room and just don't remember it - I apparently asked my husband a lot of questions as I was waking up, and I don't remember any of that because I was still coming out of the sedation. All I remember is asking one question, and my hubby smiled and said that was about the 5th time I had asked that. So I stopped asking questions then because I didn't want to be annoying. But I may have been farting while I was asking questions. Was there someone (family member?) with you in the recovery room as you woke up? Could you ask them if you were farting?

I don't think there's such thing as "normal" when it comes to people like us waking up from such procedures. There's no such thing as normal, period, when it comes to things like IBD. I had an endoscopy yesterday and ever since the pain meds wore off, I've had a massive headache. I asked my GI's office about it, and they said it's "probably fine" and to take a Tylenol. So it seems like a lot of stuff can still be considered "normal" when waking up from these types of procedures.

Yes, I specifically asked my GI and he said he was able to get into my terminal ileum during my colonoscopy, and he took a bunch of biopsies from there. All the biopsies came back normal and the ileum looked normal. Sounds like you and I have a lot in common! Hang in there, I know it's really frustrating but I also know that neither of us is crazy and we'll eventually find answers.
08-19-2010, 09:06 AM   #21
rctriplefresh5
 
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is it possible that the colonoscopy/upper endoscopy sped up my metabolism. the last few months ive finally been gaining weight(goood thing)..but i lost some weight on my prep obviiously. however after the colonoscopy ive been trying to gain it back using the same weight gain diet as i used before the procedure...and im losing weight now. i was around 180-185 before the procedure..now im 170-173. ill be pissed if it sped me up
08-19-2010, 09:25 AM   #22
Mayflower537
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I don't see how it could mess up your metabolism, but i'm no expert and i'm undxed as well - no confirmed IBD. i lost about 5 or 6 pounds with my colonoscopy prep, and as i have to pretty much overeat to gain weight anyhow, it took me several weeks at least to make it back up.
your appetite is unchanged? maybe things will settle down soon and you'll get back to gaining weight again. hope you feel better soon. any other tests on the horizon or are you still waiting on biopsy results?
08-19-2010, 02:02 PM   #23
rctriplefresh5
 
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I don't see how it could mess up your metabolism, but i'm no expert and i'm undxed as well - no confirmed IBD. i lost about 5 or 6 pounds with my colonoscopy prep, and as i have to pretty much overeat to gain weight anyhow, it took me several weeks at least to make it back up.
your appetite is unchanged? maybe things will settle down soon and you'll get back to gaining weight again. hope you feel better soon. any other tests on the horizon or are you still waiting on biopsy results?
im waiting for the biopsies. i have an mri of my spine coming up from a weightlifting injury =p. nd maybe an mri of the brain if insurancce pays for a pit tumor i was dx with last march....idk what stomach test to ask for next.
08-19-2010, 03:42 PM   #24
DustyKat
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You have a Pituitary Tumour? If so I guess an hormonal imbalance could be causing the unintended weight loss, maybe???
08-19-2010, 10:55 PM   #25
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You have a Pituitary Tumour? If so I guess an hormonal imbalance could be causing the unintended weight loss, maybe???
but i was gaining weight before the colonoscopy/gi
08-19-2010, 11:24 PM   #26
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Hi, Dave. I don't put a lot of faith in colonoscopies/upper endoscopies for diagnosis of Crohn's. I just had a colonoscopy and an endoscopy three weeks ago and the doc said none of the biopsies returned any evidence of Crohn's disease-or of anything wrong with me at all. All looked normal, except for a little stenosis of the small bowel. A few days ago, I had an MRI. From that, the doc was very concerned and said it definitely looked like Crohn's. And it looked like a bad case of Crohns. He is putting me on Remicade soon. Maybe an MRI would help? It is a nasty procedure and I was sick for 15 hours afterwards, but it might help the docs see what is really going on inside.
08-20-2010, 09:21 AM   #27
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Sorry if I'm hijacking this thread, but - YogaGirl, why were you sick after the MRI? Did they have you drink barium for contrast, is that why? I had a CT scan with barium, and I actually liked it. I had been having an episode of low blood pressure before the barium, and after I drank it, my blood pressure rose back into the normal range for some reason. I don't know why, but it made me feel much better. My GI wants me to have an MRI down the road, which is why I ask.
08-20-2010, 10:14 AM   #28
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It must have been the barium. Unlike many Crohns sufferers, my bowel is very slow moving. I can literally hear, feel, and see it trying to work.

Pardon if I go into the gory details, but for informational purposes, I was horribly sick to my stomach when I left the procedure. I barely made it home. I had nausea for 15 hours after the procedure. I threw up 7 times. I had only had ginger ale, milk, and crackers the entire day prior to the procedure, nothing on the day of the day of the procedure, and only ginger ale on the day following the procedure.

I think part of it was the pain and bloating from Crohn's. I had to lay in that MRI coffin for an hour and half while my intestines cramped and swelled and I could not move or change positions. It was unbelievably loud and very hot. When I got home, I had the combination of Crohn's and nausea. I took an Ultram for the pain, but just threw it right back up.

They also give you a drug to slow down your bowels so they can see them better (when you are there for the small bowel MRI). I questioned this, since my bowel is already too slow, but they did it anyway and that may have made things worse. It is hard to believe that over ten hours after that procedure I still had a lot of barium in my system. That shows you how slow I am.

My reaction may be an unusual one. I hope so.
08-20-2010, 10:44 AM   #29
rctriplefresh5
 
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is it possible that the colonoscopy/upper endoscopy sped up my metabolism. the last few months ive finally been gaining weight(goood thing)..but i lost some weight on my prep obviiously. however after the colonoscopy ive been trying to gain it back using the same weight gain diet as i used before the procedure...and im losing weight now. i was around 180-185 before the procedure..now im 170-173. ill be pissed if it sped me up
any more opinions on the effectts on metaolis
08-21-2010, 02:03 PM   #30
rctriplefresh5
 
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its really frustrating when u check back here hundreds of times per day for an answe,and none come. maybe this isnt the right forum for me.
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