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03-12-2012, 08:42 AM   #31
CLynn
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My dad was so concerned when we got my diagnosis, he wanted to take me to Mayo's...I was just thrilled to finally be diagnosed so told him no. He would research as best he could in the days before everyone had a puter. I remember him coming to me, so serious, asking if I swallowed my toothpaste when I brush my teeth. I told him, no, never. He had read somewhere that this could be a cause of, or make Crohn's worse or something.
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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.
03-12-2012, 09:06 AM   #32
PVail
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So i went to my GP this morning as i ran out of meds since my hospital appointment was re scheduled from friday to next month. I asked him since im on Asacol which is a anti- inflamatory med, should my bloods be tested to see if there is any change in my inflammation levels ? He looked at me and said "you need to ask the GI about that on your next appointment "!
I am now looking into a new suitable Doctor, one who is familiar and experienced in Bowel issues.
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Peter


DX March 2012 IBD - Inflammation of the Terminal Ileum with inflammed appendix
Asacol 800mg 4 x day
Amitriptyline 50mg
Omeprazole 20 mg when needed.
03-12-2012, 10:48 AM   #33
tlc-x
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My old GP said it was cos I ate too many Mars Bars!
Mars Bars actually make me so much worse and could practically start flares up for me haha! Luckily it only causes the pain and sickness for a fews until it has passed. Must gain some self control and stop eating them!
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~ Tasha.
~ Seventeen years old.
~ South of England
~ All my cousins, aunts, uncles and grandparents have either CD or UC
~ Fifth year of not living my life properly due to the symptoms
~ Endoscopy, colonscopies, MRI scans, ultrasound scans, blood tests, biopsies, urine tests and so on!
~ Been on so many different medications and nothing actually helps
~ Latest diagnosis is 'Functional Dyspepsia'

03-12-2012, 12:22 PM   #34
changeiscertain
 
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I'm in a terrible flare and went to a doctor I've been seeing on and off since 1998 and steady for the last 2 years. He says he doesn't know what to do with me anymore because we've tried all the medicines with no luck and it might be time for surgery so he's sending me back to another GI I saw a few times when I had different insurance. He says the last colonoscopy (2 years old) was clear and he just doesn't know what to make of my symptoms. He performs a rectal and upon exiting, exclaims loudly "EWWWW GROSS!! It's definitely active!!!" I was absolutely beside myself. He quickly left the room and then sent his nurse back in to tell me to make an appointment with my old doctor.
03-12-2012, 01:46 PM   #35
Astra
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Thing is Tasha...
I never ate any friggin Mars Bars!!!!!!!!!!!
And.....when I see one I think about the old git who could only listen thro a Beethoven horn and dribbled phlegm down his chin when he spoke. And this said phlegm congregated, all crusty and congealed in the corners of his mouth!
EWWWWW!
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Joan

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!

03-12-2012, 02:13 PM   #36
Lisa
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My dad was so concerned when we got my diagnosis, he wanted to take me to Mayo's...I was just thrilled to finally be diagnosed so told him no. He would research as best he could in the days before everyone had a puter. I remember him coming to me, so serious, asking if I swallowed my toothpaste when I brush my teeth. I told him, no, never. He had read somewhere that this could be a cause of, or make Crohn's worse or something.
Are you sure we aren't related...sounds like MY Dad!!!
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
03-12-2012, 02:42 PM   #37
CLynn
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Haa haa haa, Paso! We might be surprised to find out they were related, huh?
03-12-2012, 03:33 PM   #38
tlc-x
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Joan ~ That sounds awful! Ewwww!
03-12-2012, 03:59 PM   #39
littlemissh
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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.
But if you see your GP they can streamline admission or get an urgent referral.They arrange admission and assessment that day by the medical/surgical team on duty.
I nearly always go through my GP (except when perforated and had to get help immediately or when gastro admitted me himself). This means you get taken almost straight away to the assessment unit to be seen by the team your gp referred you to,without waiting to be seen by the ED staff.
I have therefore never waited more than 10 minutes in the ED unlike those who just turn up who seem to sit and wait for ages.
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Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
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:
On TPN since March 2016.
03-12-2012, 05:43 PM   #40
liv
 
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My GP has started taking the honest approach. Almost every time I'm there he pulls out one of his health books and starts reading in front of me. He also says "I really have no clue what's wrong with you, so I'm going to do some more blood tests" a lot. I thought after having a confirmed diagnosis of Crohn's that this "I don't know" thing would stop but it hasn't. Even just this weekend in the ER the doctor said "Well if a specialist can't figure it out, I definitely can't... Let's do more tests."
I need to start being followed around by a medical student because they would get to see so many tests first hand. Just one request: make him cute
03-12-2012, 07:20 PM   #41
Billk78
 
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When I was younger the doctors would tell my mom that I just didn't want to go to school and was faking it.

Once I was a bit older it didn't change much. They said it was mostly in my head and I was bringing it on myself with stress and anxiety.
03-13-2012, 06:58 AM   #42
xX_LittleMissValentine_Xx
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But if you see your GP they can streamline admission or get an urgent referral.They arrange admission and assessment that day by the medical/surgical team on duty.
I nearly always go through my GP (except when perforated and had to get help immediately or when gastro admitted me himself). This means you get taken almost straight away to the assessment unit to be seen by the team your gp referred you to,without waiting to be seen by the ED staff.
I have therefore never waited more than 10 minutes in the ED unlike those who just turn up who seem to sit and wait for ages.
Yeah I guess it would work better if your GP's are helpful. At my GP surgery they don't have emergency appointments just walk in and wait, so I have been waiting there for hours sometimes. It is probably very situational though as to what the best thing is to do!
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~Holly~
Diagnosed with CD March 08 at 17
Currently on:
Infliximab

Past:
Pentasa
Prednisolone
Azathioprine

My blog: http://hollysbloggyness.blogspot.com/
03-13-2012, 08:25 AM   #43
littlemissh
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Yeh, I am lucky to have a good GP and I can just ring and ask for a callback or they ring me if my results are bad.
If you have a gp who is difficult to get to talk to or who is awkward then that would make arranging hospital review more difficult.
03-15-2012, 11:54 PM   #44
ShanBanana
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You look so sick- haven't you been eating?
You have lost 30 lbs this year- do you have an eating disorder?
Are you sure you are not doing this to yourself? Do you make yourself throw up? Be honest with me!
What is wrong with you? Why aren't you getting any better? This medicine should be working.... oh well.
Did you take your meds correctly? You have to read the bottle. Really?
And my favorite... Do you have a lot of stress in your life? I bet it's just stress. Get more sleep and the rest will just go away.

Love them doctors- yee haaa- that med school learnin did some real good, uh huh.
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ShanBanana

Formally Diagnosed with Meniere's Disease
01/12/12

Lord, help me to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
GOD BLESS AMERICA
03-16-2012, 06:51 AM   #45
dannysmom
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When I was younger the doctors would tell my mom that I just didn't want to go to school and was faking it.

Once I was a bit older it didn't change much. They said it was mostly in my head and I was bringing it on myself with stress and anxiety.
I hate that! When were you finally diagnosed?
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Jeanne
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
03-16-2012, 08:56 AM   #46
tlc-x
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Not a doctor, but my grandma says if I go to college then I will become distracted by my tummy and bowel problems and then it'll go away foreveerrr! I wish! I'm still going to college but it's not working! Hahaha.
03-16-2012, 10:35 PM   #47
outlier
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despite my love of my gi every appointment i get the same "sure your not stressed at all?" my answer is only by my stomach

i do love when thanks to humira i got shingles my rhemy looked at my back and says
"Shit that's not good" nothing like a doctor saying that to make you feel better.
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Diagnosed: Crohn's Oct '09
Extraintestinal: scleritis May '08, GERD Aug '09, ankylosing spondylitis Feb '10
Current Meds: Humira, Asacol, Dexilant, domperidone, Tramadol and a whole lot of vitamins
No more sulfasalazine, Methotrexate, Xibrom, Pred Forte and Iron
03-19-2012, 12:00 PM   #48
SunshineSmile
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Hey everyone!!!! THANK YOU SO MUCH FOR ALL THE REPLIES!
I JUST POSTED THE VIDEO! HOPE YOU ALL LIKE IT!!
03-19-2012, 12:09 PM   #49
Grant
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A Surgeon said to me after my Right Hemi in 97.
"Your Cured"

Bless him, he meant well but without too much knowledge of Crohns obviously.
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1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection
2012 Laproscopic Laperotomy & Resection
2013 diagnosed with a Fistula
Been on Azathioprine Pred & Methotrexate
Currently on:
Inflectra
Questran
Loperamide
Calcichew
Pentasa 4gm daily
Daily Multi Vitamins
3mthly B12 Jabs
03-19-2012, 12:20 PM   #50
nevilletanner
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doctor that attended me at home "hospital for you , no rush its only Pancreatitis"

emergency doctor in CDU (clinical decisions unit) " i know what that is you have diverticulitis"

consultant in CDU " highly possible its contagious food poisoning, get him isolated and in for ct scan"

consultant and nurse in cdu after 2 x ct scan " well i have some seriously bad news ... you have Crohn`s disease, do you understand - your staying in and have a 90% that you will need surgery in the next two days"

one thing my wife told me, while in CDU while being tested, prodded - when they put in the canular there was a spurt of blood,
my wife says " hell is it meant to be that colour"
me high as a kite on etonox shouts out " im not a Fu*King vulcan you know"

Last edited by nevilletanner; 03-19-2012 at 12:51 PM.
03-25-2012, 08:04 AM   #51
Mia E
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To add a positive one, when my symptoms started I went to my gp and said

'I think it may be anxiety or something' (as a psychologist my view of the world is skewed!!)

He replied saying 'There are other reasons people throw up you know'

Reading through all of this and knowing where i am now with symptoms I just want to go back and kiss him!!
03-26-2012, 03:58 PM   #52
outlier
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really cool!
04-04-2012, 04:58 PM   #53
Dazzafarr
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G
04-04-2012, 05:05 PM   #54
Dazzafarr
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GP- IBS
GP- anxiety
Gp- depression
Gp- here is 5 months worth of anti depressants
Gp- anxiety
Gp-anxiety
Gp- depression.
Basically this has been me dealing with the above.
Now I have osteopenia and they still try throw in an anxiety
Never take a diagnosis from a GP.
Majority diagnosed me with anxiety without doing a degree in psycoligy
I see a GP who did have a degree and he has diagnosed me with osteopenia already.
Worst is people around you don't believe you.
That's the hardest
04-04-2012, 10:37 PM   #55
tots
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Take your husbands credit card- go shopping- put some make-up on and you will feel better. It will give you something to do besides thinking about getting sick. Really buddy? I
sure as h&%$ don't WANT to be throwing up with diarrhea all night. But, thank you anyway!
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Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


:


Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
04-05-2012, 08:11 AM   #56
Mary:)
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"YOU have crohns disease...here is a pamphlet"
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DX Crohns-2009

Fistula-2010


Humira-Every 2 weeks 40mg

Prednisone drives me nuts!!!!
04-06-2012, 07:30 AM   #57
Dazzafarr
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After experiencing urinary and bowel issues -
Doctor - you has a kidney stone, go home and drink 3 liters of beer.
Me- I dont like beer, anything else I can drink?
Doctor- beer or water.

Doctor2 - I want to try something new which has shown great results
Prescription - 5 months worth of anti- depressants.

Doctor3- you could have a problem with your stress
Me- doctor, I'm not stressed thats the thing...
My girlfriend- he is sick. He gets tired all the time.
Me- "i said to my girlfriend", please let me talk to the doctor ,doctor is there anything else we can do?
"doctor starts giving me relationship advice"

The last scenario -
After everyone thinking I was a hypercondriac
Even though I could barely leave my bed in the morning
Some mornings... I went to doctors who wouldnt sign off
For health insurance which later we found out my bones reached osteopenia
And I had some kind of arthritis, spondylolthesis,
Constant fissures and UTI like symtoms...
Fatigue etc etc...
Doctor signed off but you need to be off 3 months to claim...
So... Now struggling with mortgage etc.
But, because I haven't been given the diagnosis of crohns...
Got gastro app on 13th so please diagnosis!!
04-06-2012, 08:09 AM   #58
Billk78
 
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I hate that! When were you finally diagnosed?
Just this month. It took years.
04-06-2012, 08:16 AM   #59
IAmTheWalrus
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My GI asked how I was doing regarding smoking, and I said "Not to well, find it hard to give them up"

He replied, "Ah sure, I know it feels great ..... no, no, no, no, I shouldn't be saying that, I'm your doctor"

The two then burst out laughing, it was such a weird moment. :3
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28 y/o male from Dublin, Ireland, Dx with Crohn's Colitis in January 09.

Current Meds: Remicade, Imuran.

Risk/Benefits of treating Crohn's. Link below

http://www.ccfa.org/assets/pdfs/risk...transcript.pdf
04-07-2012, 04:29 PM   #60
outlier
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"YOU have crohns disease...here is a pamphlet"
my said to go check out the internet. cause you know there all that releable info on the internet
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