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Crohn's Disease Forum » Support Forum » Undiagnosed Club » What have doctors said to you??


 
03-08-2012, 02:05 AM   #1
SunshineSmile
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what have doctors said to you??

what have doctors said to you when they don't know what's wrong?
I'll be making a video soon and i want you guys to help! Since we all from the undiagnosed club have been through many things with doctors! It would be greatly appreciated if you'd give your input! Thanks!
*Wishing you a good tummy day!*
03-08-2012, 05:36 AM   #2
PVail
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here is the scenario.
Just had the most awfull three days , constant D and pain , dizzy and nausea .Joints aching.
Taking the meds as perscribed. Eat food and then D after 30 minutes.
Go to doctor and he says " bit of a dicky tummy have we "
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DX March 2012 IBD - Inflammation of the Terminal Ileum with inflammed appendix
Asacol 800mg 4 x day
Amitriptyline 50mg
Omeprazole 20 mg when needed.
03-08-2012, 06:06 AM   #3
xX_LittleMissValentine_Xx
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When I was no where near getting a diagnosis my GP said to me 'Try to eat more lunch' I don't know where that came from. So there I was with horrible stomach pains thinking, I really need to try and eat this!
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03-08-2012, 07:13 AM   #4
dannysmom
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03-08-2012, 08:59 AM   #5
DustyKat
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After asking the GP where we go from here..."I don't know, we may just have to open her up and have a look."

Dusty.
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03-08-2012, 09:50 AM   #6
tlc-x
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"You're not eating enough food." I'm eating as much as I freakin' can but it's hard when it causes me to stay up all night.....
03-08-2012, 10:49 AM   #7
CLynn
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Upon telling me that I have the uncurable, crohnic disease called Crohn's "I know, it sounds awful...but we all have our things"
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Cheryl
Diagnosed:1988
Previous meds: Sulfadiazine, Flagyl, Prednisone, Imuran, Pentasa, Asacol
Surgeries: re-section 2004
Currently taking: B-12 injections every 2 weeks, multi vitamin/mineral, fish oil (1000 mg), D3 (5000 mg)

Also lucky enough to have psoriasis as well.
03-08-2012, 10:52 AM   #8
Cat-a-Tonic
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The worst was when a doctor told me I "look depressed" (really, how does someone look depressed? Is that a solid medical diagnosis?). His exact words were something along the lines of (after looking at my chart for all of 5 seconds), "Your colonoscopy came back normal so you have IBS. And you look depressed. Would you like some antidepressants?" Argh!

My GI has also said several times, "You're a tricky case." Well, duh.
03-08-2012, 01:55 PM   #9
SunshineSmile
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This video is going to be great with all these responses! You guys are the best! If anyone wants to add more, keep them coming! Thank you!!
03-08-2012, 02:00 PM   #10
Crohn's Mom
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While Gab was hospitalized and in major pain one time, on the 3rd day after they still didn't know what was wrong, he (doc) says..."I think she's just constipated and I'm going to order an enima and discharge her" (this was 3 months before she ended up having over 100 cm of bowel removed )
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and Austin (18)
DX: Crohn's 7/2013
03-08-2012, 02:24 PM   #11
tlc-x
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Just random ones off the top of my head "it's just IBS" "go on the FODMAP diet and you'll be fine" "just constipation, take this" "take this medication it'll help" "oh the last one didn't help, take this" "you need help for this" "get counselling, it's in your head" "you're making yourself ill" "stop drinking and smoking" "you must be pregnant - but i'm a virgin!!" Umm.. that's all I can think of - i've not had all of those luckily!
03-08-2012, 05:24 PM   #12
xX_LittleMissValentine_Xx
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"you must be pregnant - but i'm a virgin!!"
I had that one!

She asked me in a really backwards way if I was pregnant. So I had to think about my answer because I wasn't sure if I said yes if it meant yes I'm sure I'm not pregnant or if it meant yes I am pregnant! So she said 'how are you sure?' I was like.... :/ I'm a virgin!
03-09-2012, 09:06 AM   #13
PVail
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I'm sorry Mr Vail but I don't know why your hear ,the test results that I have ( which where two years out of date ) came back clear.
So to get his attention I said I was pregnant !

Money couldn,t buy the look on his face ! stupid self reitious b______d !
03-09-2012, 09:57 AM   #14
tlc-x
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One doc had no idea what he was talking about - I asked why my tummy was so hard when I touched it.. like all the way the abdom.. it was weird so I asked him and he said it was just poo... ummm.. what?! Are you saying I have poo from my bottom all the way up to the beginning of the system?! Shouldn't you do something about that?! Another doctor said it was just me tensing my muscles... oh wow.
03-09-2012, 10:25 AM   #15
xX_LittleMissValentine_Xx
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How about this one: What are we going to do with you?
03-09-2012, 01:42 PM   #16
Yogawrench
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When I was first diagnosed with Crohn's Disease, my G.I. doctor sent me a nice letter setting out his "findings". He ended the letter by saying "This is to confirm that you have terminal ilieitis and the prognosis is not encouraging." When my parents read the doc's letter they began telling everyone that I was dying. When I called the doc about his letter, he was flabbergasted at his syntactical mistake and informed me he meant to say that I had Crohn's disease located at the terminal ilieum!!
03-09-2012, 03:50 PM   #17
littlemissh
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I had a junior gastro doctor tell the nurses, when they asked him to prescribe some pain relief whilst I was having a blood transfusion due to very active crohn's, that the pain was probably just constipation- I had so much pain I had a really high heart rate and was throwing up.
My gastro consultant was not impressed when I jokingly told he had got it all wrong and it was just constipation according to his junior!
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Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
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03-09-2012, 06:12 PM   #18
stacenrach
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wow what a great idea! hope these help...ive had all this over the last 14months...
from doctors and many consultants...
''your fat u need to tone up''(swollen belly,size 8 with 44inch waist after hlf a sandwich)'' ''what do you want me to do with you?'' ''your a medical mystery!'',''eat more'' ''it maybe just be servere ibs'' and when in discussion about a massive mass moving around in my tummy (which isnt showing up on scans but u can see happening in front of your eyes...i had this as reasons and answers,why and what it was ...'' great party trick'' ''dont move like that then'' from about 5 consultants and lots of doctors...about my moving mass in tummy ''gosh thats strange,never seen that before in my medical career'' me is it normal? him just pulled a face?ggrrrrr!! ''people would pay good money to see this'' ''its your bowels sticking through your stomach because how much weight youve lost'' when showing pictures of my swollen distended tummy he said '' have you youtubed these???!!!!:0'' ''maybe u have a new illness,we,may never find out'' ''weve done all we can physically do,maybe you will just have to deal with it'' to me ''why do u expect answers straight away...rome wasnt built in a day'' ''i have been sat here all day in consultations and u expect answers from me here and now!'' '' why are you on all this medication?....me- you put me on it? and many many more..hope this helps...it did me..getting it all off my chest thanks.
03-09-2012, 06:17 PM   #19
stacenrach
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oh and demanding pregnancy tests all the time..im in a lesbian relationship!!!! there would have t be 3 wise men and a star..last time i checked women couldnt get women pregnant...i siad are you basically saying i must have cheated on my partner!!!!to this day i still refuse to do one.. well if i was pregnant must be some sort of mammal as ive been swollen for 14months!!!lol!!! such a joke!!!
03-09-2012, 06:45 PM   #20
SunshineSmile
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Thanks everyone! You all are awesome! This video should be really good with all your help!
03-09-2012, 07:15 PM   #21
Louise90
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Me - I'm exhausted is there anything I can do about it?
Doctor - Get better.

He did say it with a smile, all the same I felt like saying 'well thanks! that's helpful!'
03-09-2012, 08:39 PM   #22
SunshineSmile
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If anyone wants to add any more there's still time to! I won't be making the video till probably next week. I'm so happy you are all being a part of this video! It makes it even better!
03-11-2012, 09:49 AM   #23
Ever Hopeful
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So I went to see my doctor yet AGAIN...things had gotten worse lately. I had taken Amitriptyline the night before the appointment. Felt TERRIBLE that day with absolutely no energy amongst other symptoms...

I said to my doctor as he was getting ready to walk out the door, "I feel as if someone's switched my energy switch to 'off' today"

His response: "hmm...well, maybe it's the weather"

Are you KIDDING me??!!! Yep...i'm sure he put LOTS of thought into THAT explanation.
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diagnosed endometriosis 2007
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past alternatives: moringa olifera, acacia fibre, peppermint capsules, manuka honey, digestive enzymes (made it worse)
03-11-2012, 12:52 PM   #24
Astra
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My old GP said it was cos I ate too many Mars Bars!
A locum doc said I caused it (the symptoms) cos I smoked.
After 15 years of being told I was mental and neurotic I got my diagnosis and framed it!
I was gonna shove this framed diagnosis up the GPs arse, but alas, he was dead!
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Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




http://www.facebook.com/#!/profile.p...4208290&ref=ts

No-one should make you feel inferior without your consent!

03-11-2012, 01:51 PM   #25
SunshineSmile
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oh my gosh, have you guys gotten the question about if you chewed gum a lot or ate candy?? APPARENTLY theres something in gum that can give Crohn's like symptoms.... right..... -__- sure doc. lol
when my doctor asked me that i laughed and said I haven't chewed gum in years! lol he then moved on to more weird questions that didn't get anywhere. lol
03-11-2012, 02:33 PM   #26
PVail
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How are things at home ? He asked , I was thinking is it possible I'm in a mental asylum because if I'm not I'm gonna k--- that stupid B. things at home are great if you consider I spend most of my time in the toilet, I'm thinking of gettin a plasma screen in there , what do you think ?
03-11-2012, 02:39 PM   #27
Astra
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Oh yeah I got that one too! Hence the Mars Bars quip!
Sorbitol and Phenylalanine gives you diarrhea, this is true, but it doesn't give you inflammation
xx
03-11-2012, 03:06 PM   #28
Manatey
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I started seeing a new GI because mine didn't take my new insurance. He has my whole history and knows I just got out of the hospital a couple weeks before. Between IV steroids, 40 mg of steroids for months, on a total liquid diet and being so sick I am basically on bed rest he looks at me and says you really need to work on loosing weight!!!!!!!!!! I was like really? I can't get out of bed and am living on Ensure. How do you expect me to do that? I said to him REALLY being on this dose of prednisone? He said oh that's just a myth. This guy is supposed to be one of the best in our area. I just let it go in one ear and out the other!
03-12-2012, 04:38 AM   #29
tlc-x
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You learn when docs head for the IBS option... I had a massive flare one night and just managed to get out of ending up in hospital. Never been in so much pain in my life.. anyway, we got an emergancy appt the next morning and I had eaten, I was so tired after not sleeping etc and the doc said "Do you ever get this during school holidays?" Ignore the fact it was 3 days after christmas that this happened.. but I got so angry! No, it is not IBS, it doesn't just happen when i'm at college. No, college doesn't stress me out and make me ill - no it doesn't go away during the holidays because the stress has gone! Argh. Then she told me that she wasn't going to do anything until I do actually end up in hospital weighing nothing and in so much pain I need morphine to ease the pain... I cried, the night before I was in pain i've never felt before and she was telling me it needed to get worse before they'd help?!!!
03-12-2012, 08:36 AM   #30
xX_LittleMissValentine_Xx
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Then she told me that she wasn't going to do anything until I do actually end up in hospital weighing nothing and in so much pain I need morphine to ease the pain... I cried, the night before I was in pain i've never felt before and she was telling me it needed to get worse before they'd help?!!!
Thats awful! To be honest I think in times like those its better to just go to the hospital! Sometimes GP's just aren't the right person to see as there is not a lot they can do in their little office. In hospital at least you are more likely be seen by a specialist of some kind on that day.
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