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Were you diagnosed right first time?

  • Thread starter devildee(donna2005)LOL
  • Start date

diagnosed right first time?


  • Total voters
    201
D

devildee(donna2005)LOL

Guest
Hi All
where you diagnosed right first time?
lots of people seem to have problems with diagnosis did you ?:)
 
K

Kossy

Guest
No, I was like 5 when the doctors told my parents that I had mental problems and was just craving attention so I was pretending to have a belly ache.
 
D

devildee(donna2005)LOL

Guest
OMG THATS BAD
Kossy said:
No, I was like 5 when the doctors told my parents that I had mental problems and was just craving attention so I was pretending to have a belly ache.
 
K

Kossy

Guest
Yeah, it sucked really bad. The worst part was being five and not having anyone believe you what so ever because a Doctor told them otherwise.
 
D

devildee(donna2005)LOL

Guest
my youngest is 4 1/2 and im very wary, she only poo's every 4 days bur=t docs aid its ok grrrrrrrrrrrrrrrrrrrr
 
M

Mozam

Guest
I was correctly diagnosed - I was seven years old, weighed a miniscule 23 kilos (about 50ish pounds), it took them two whole days, a raft of tests, and a lieukaemia scare.
 
S

scottishgirl

Guest
no, i was told it was my gall bladder which they removed, then i was told it was nerve damage, after 4 years i finally got properly diagnosed in jan this year
 
J

Janet

Guest
I was anorexic and in denial. I had Celiac's Disease. I had Cyctis Fibrosis. Then they decided it was Crohn's. Rediculous! The whole time I was saying "It's IBS! It's IBS!" Nobody believed me and I suffered for 2 and a half years. Great story mhmm.
 
Great topic!
I started feeling sick around age 15. Saw lots of docs, none had a clue. Some said it was all in my head, and such...that was a blow.
One doc diagnosed me with IBS...so then I took IBS meds, and got really sick.
Finally we went to childrens hospital after more than a year of no results, and they finally figured it out.

fun stuff
 

mikeyarmo

Co-Founder
I am in the no group as well (How did I know that this would be the winning side :p ).

I was :runaway: for a bit not knowing what was going on with me, just thinking I had extremely bad constipation. Even though my brother had CD and my doctor had CD, he said there was no way I had it. Considering what symptoms I was showing though and understanding it more now, I do not think it was a terrible "guess". Anyways I ended up getting a test done and there was a suspicion of crohns. A barium swallow did not show, but the colonoscopy did. Actually, now that I think of it it may have been the other way around.
 
J

JoJo

Guest
Like most people, I was told it was IBS, also told it was poss a gyne problem and also suggested it was upset tummys like everyone else gets:awe:
 
D

Donna

Guest
I was told it was IBS for several years. Then, when I started bleeding, I was pregnant, so then it was IBS with bleeding hemmi's and hormonal changes. I think it takes them so long to figure it out because it is so different in everyone. No one seems to have all the same symptoms, and it isn't like this disease is a textbook thing either.

Lucky us!!!
 
L

little_sami

Guest
I was told IBS too, and given useless tablets, dont even remember what they were, but they didnt stop the blood and M pouring out of my backside lol.

Turns out I actually do have IBS, it's just that I have colitis as well - lmao!
 
V

Valentina

Guest
can you have a poll option for "they keep changing their minds"?! lol
 
R

Ruthg

Guest
Right diagnosis - first time

I had tests for a total of about 7 years. I was first told I had Coeliac disease so I tried a gluten free diet for 3 months. Obviously it did nothing and gluten free food was disgusting, so I was rather glad when they told me I wasn't. Then I was told that I had pancreatitis and I was put on Creon 10000 tablets (enzyme tablets) naturally they did nothing either and then I was told I didn't have pancreatitis but some sort of absorption problem!! Eventually after several more gruesome tests I was told I had crohn's disease. I have to say that because of the time they took to come up with the correct diagnosis, I did have doubts about my own sanity. Felt like a hypocondriac. I had to go to my GP for a second opinion too.
 
I'm a parent of 2 Crohn's patients. DS#1 was diagnosed with a fistula at age 16. The surgeon who repaired the fistula said it could be a one time deal due to adolescent hormones or it could be something worse. If it came back, we would have to check for Crohn's. 3 months later, it came back. :(

DS#2 was having chronic hemmorroids at age 14. The pediatric Doc was fairly clueless and prescribed suppositories and PrepH. When he turned 15, I switched him to DS#1's Doc and he was diagnosed with Crohn's.

They were so different. DS#1 had stomach pain and diahrea. DS#2 had constipation. We never thought they could have the same condition. It was very depressing. Especially since, the day DS#2 was diagnosed, my father was in the same hospital dying of cancer. It was a really tough couple of years between 2002 & 2004. At this point, I'm just sort of numb and worried and scared all the time. Today, is not a good day. :depressed:
 
G

Georg

Guest
I was told IBS for over 2 years. "Pooping blood" = IBS "Dramatic Weight Loss" = IBS "Diarhea" = IBS "Pain" = IBS. Sygmoidoscopy found no inflammation = IBS. It wasn't until 3 years and 30 lbs. later I was finally diagnosed and sent to the hospital for 2 units of blood transfussion for anemia.

At least I finally know what it is now. A LIFE ALTERING,CRONIC, NO CURE DISEASE!

Crohn's SUCKS!
 
X

xrayzerase

Guest
ibs ibs ibs!!!!
oh..and adhesions from myomectomy 7 years ago..
but-usually got the ibs deal...
 
C

carolinajak

Guest
Yes. I never noticed any major symptoms but was told I had Crohn's for at least a year before i was diagnosed last month while dying in the ER. The head of surgery said it was the worse CD case he had seen in 30+ years. So I am happy to be here to talk about it.
 
J

Jonny

Guest
2 pathology results came back as Undetermined IBD.Explaing why it might be Crohns and also explaining why it might be UC.
My surgeon thinks i most likely have Crohns though but cant be sure
 
S

SoccerMom

Guest
Where to start ........ Age 7 - wants attention, let`s medicate her .... Age 13- 15eating disorder, let`s medicate her......Age 17-hemmeriods,postpartum depression, let`s medicate her ......Age 19 -hemmeriods,postpartum depression, let`s medicate her....Age 21 -same .....Age 22 food poisening, stomach virus, IBS, Endometriousis, Fibriods....Age 29- Peptic Ulcer Disease, Celiacs, UC ........Age 35- After much discussion it was finally decided that after endoscopy, colonoscopy & the cute little camera thing that FINALLY it is decided that I have Crohns. I like KNOWING better that not, even if it`s crohns.
 
I was just stressed out a lot... ha

then IBS

then finally i found a doctor that told me it could be Crohns or Colitis... an emergency CT Scan and emergency colonoscopy decided upon Crohn's.
 
B

Budgirl

Guest
Wrong diagnosis more then once

When the symptoms first started I was told I was suffering from stress. They gave anti-depressants. When I still had severe pains they ordered a colonoscopy which resulted in a diagnosis of IBS. I ended up in the emergency room because of a high fever and severe pains after the colonoscopy. Due to a high sed rate I was hospitalized for 3 days. I was released with the diagnosis of chronic appendicitis. They sent me for a cat scan just to be sure. This is the test that finally showed that I had Crohns. Within a month of a proper diagnosis I was hospitalized again and had to endure my first emergency surgery. And the ordeal has never ended since.:well:
 
F

frankbongo

Guest
10 years of supposed IBS (I'm Basically Stumped) plus are you sure you're not stressed?. :yrolleyes:
 

Kev

Senior Member
Short answer "NO".. Right now, they still aren't sure whether I have CC, CD or UC.
If they are correct, then they think I've had this disease for over 20 years so far...

Despite using phrases like 'accurate diagnosis', I think it boils down to 'best guess'!
 
O

old hat

Guest
JoJo said:
Like most people, I was told it was IBS, also told it was poss a gyne problem and also suggested it was upset tummys like everyone else gets:awe:
Endometriosis can have very similar symptoms including bowel pain, diarrhea. constipation and fatigue. It is also several times more common than CD. It is something that should certainly be checked for in women with these symptoms especially those in the prime age range (late 20s) with the risk factors (unusually heavy period or long periods and short monthly cycles). Definite diagnosis requires laparoscopy and, sometimes, biopsies.

It's not an unreasonable diagnosis at all even if it was incorrect in your case.
 
S

snazzy

Guest
I was told I had IBS for 5 years and to avoid dairy. Had to get really sick for them to finally investigate it further, was angry - but atleast now we know what it is and its getting treated :)
 
also a "no".

i was told various things along the years, which were apparently causing my symptoms: active imagination, spastic colon, nervous tummy, anorexia, depression....

the "active imagination" one peed me off the most - how can you imagine a swollen rock-hard stomach, night sweats which left a me-shaped damp patch on my sheet, a drip white face with blue cold lips, plus the variety of pains and not very pleasant changes in my bowel habits.....?

the anorexia diagnosis made me cross too. i was actually sent to a psychiatrist, who told me i was hell-bent on punishing my body by not eating... no, actually i had stopped eating because it hurt, and nobody had given me anything to take the pain away......

i will never forget the intense frustration i felt back then, when i was suffering so badly and the gp didnt believe me, & he managed to convince my family for over 5 years there was nothing physically wrong with me.

it was a relief when, after tests, i was told it was crohns. at last - it had a name, and it wasnt my imagination, nor me on some self destruct mission.
 

Kev

Senior Member
You know, I've often (perhaps too often, in hindsight) come to the defence of the medical community. Despite their training and experience, they are only human after all. I've been misdiagnosed, many of my friends and family as well. Doctors HAVE saved lives in my family, and for that I am unfalteringly extremely gratefull. I just don't recall any doc who had mis-diagnosed me or mine ever being able to say "I'm sorry for my mistake" in any believable or genuine manner. Don't want to hijack this thread, but to all mis-diagnosed, did your Dr. provide you with a reasonably legit apology? Think this is a not so human failing on their part. Least that's my 'honest' opinion on the diagnosis issue.
 
I happened to get lucky (thats one way to look at it anyway) that I happened to be hospitalized at Mass. General, which has a handful of IBD specialists. They just kind of looked at my CT scan and knew right away.
 
I

Ilysha

Guest
I was diagnosed as endometriosis, put on all kinds of hormone meds that did nothing. Finally after losing 25 pounds and an unnecessary laprascopy (although they did find some benign fibroids) a great GI finally diagnosed it right!
 

Kev

Senior Member
Am I crazy? (OK, skip that part... why question the obvious?) But the question is were you correctly diagnosed the 'FIRST' time. So, the proferred responses of No, Yes, or 'Maybe', gives one too many options. If you take the question strictly on the basis of Yes or No, then you have to add the 'still waiting' to the 'No' category. Why? Cause obviously the doc's DIDN'T get it right the 1st time. When you look at it that way, and look at the initial results of our little poll, it seems that the 'real' odds of getting IBD diagnosed correctly the first time is a mere 1:3.. or that twice as many people are going to be mis-diagnosed versus correctly diagnosed. I wonder how accurately our poll reflects the real world?
 
No, I was diagnosed with acid reflux. Over a year later a good specialist diagnosed it easily.

Never use a GP to diagnose a gastrointestinal problem is the moral of my story.

Dan Bergman
 
Kev said:
You know, I've often (perhaps too often, in hindsight) come to the defence of the medical community. Despite their training and experience, they are only human after all. I've been misdiagnosed, many of my friends and family as well. Doctors HAVE saved lives in my family, and for that I am unfalteringly extremely gratefull. I just don't recall any doc who had mis-diagnosed me or mine ever being able to say "I'm sorry for my mistake" in any believable or genuine manner. Don't want to hijack this thread, but to all mis-diagnosed, did your Dr. provide you with a reasonably legit apology? Think this is a not so human failing on their part. Least that's my 'honest' opinion on the diagnosis issue.

no, i've never had an apology from anyone in the medical profession. not from the gp back then, who i admit may not have had the knowledge to diagnose me but who should have referred me to a stomach specialist earlier, to the hospital staff who ignored my increasing alarm-bell symptoms of peritonitis and septicaemia, which led to the very real threat of me losing my life, & spending over a week in ICU.

i too, have reasons to be grateful tho, at the end of the day they saved my life, and since then i've had fantastic treatment, and so have many members of my family.
 
C

cindypat

Guest
I guess you can say I was lucky that mine was diagnosed quickly. I had been having some pains for about a month and then one day I had severe pain and nothing I took would ease it off, so I went to the ER where they did a CT and said I needed to have my appendix out, but when the surgeon got in there he said he was pretty sure that I had crohns because the bottom part of my small intestines were inflamed. When I went back for check-up he said my blood work indicated that it was Crohns, so he sent me straight to a Gastro Dr. to have a colonospy and a small bowel x-ray which confirmed that it was Crohns.
 

butt-eze

Superstar
I was orginally diagnosed with UC in November 2005. I was re-evaluated in November 2007 to determine it is actually Crohn's. Turns out my appendectomy back in 2001 was unnecessary. It was just a Crohn's flare!!!
 
G

Gemma

Guest
i was told at first it was all in my head i was 13 - 14 years old and then that i had IBS
 

My Butt Hurts

Squeals-a-lot!
I actually was diagnosed correctly the first time, but it took a loooooong time to get diagnosed. I had hyperthyroidism at the same exact time, so my symptoms were a mix of that and Crohn's. I got a lot of "I don't knows" and "hmmmmms" at a lot of appointments. I think it took about 6 months and 40 pounds.
Just because I'm diagnosed doesn't mean I'm fixed, however. It seems like I'm constantly being diagnosed because my symptoms keep changing. Grrrrr.
Good question!
 
Great poll!

I also am a *no* as was showing symptoms for C Diff and thus treated for 4 months 2 years ago - took five antibitics to fix that ( was it a flare?), then they said an ulcer and had me on the acid reducer stuff for a year but al tests were -'ve and the GI I saw then said, eat better and reduce your stress. But my deterioration since Nov led me to an ER 2ce in a week and a CT scan result came back as highly probable chron's, and the GI follow through was a def yes with internal fistuala showing as well. No colonscopy yet but my GI I have now has said 100% CD.

But I do no look at the ned communiity in a bad way at all - from what I read, this isn't easy to dx - although a CT scan last Spring as my GP wanted may have been helpful.

oh well.
 
No. First they thought I had a pancreatic mass. Then they thought I had lymphoma, then cirrhosis, then histoplasmosis, then abdominal tb, then they didn't know. Finally, 6 GIs and 2 infectious disease Drs., 5 colonoscopies, 4 endoscopies, 4 pill endoscopies, 2 abdominal surgeries later, they did a double balloon endoscopy and diagnosed crohns.
 
D

Digits

Guest
No! they told me i was craving attention, and that i was an 8 year old Buliemic. what the hell? 12 years ago, bulemia wasnt much an issue with 8 year olds, lmao.

but then they got it right afterwards. no IBS or CD issues, just straight up CD. probably because i had an ulcer in my esophagus...
 
I

Ilysha

Guest
I was told endometriosis at 25. Then when the laprascopy 3 years later showed only fibroids not endometrosis, they said fibroids. Guess what? They took the fibroids out and nothing happened. Finally my mother had the common sense to take me to a GI who correctly diagnosed me. Just goes to show that mom usually is the best doctor.

It is way too easy for a woman's symptoms to be sluffed off as female problems!
 
No. I had numerous appendicitis scares all through my childhood which they determined was gas. A couple doctors also went with a 7 year long sinus infection that was draining mucus into my stomach and causing it to be upset (not that bad of a guess, drainage does apparently exacerbate my crohn's).

Then at 15 my at that time current doctor pretty much left his practice and his nurse practitioner took over for a while. She went with IBS, which she had, and that was the first time someone actually identified that it was my intestines that were the problem and not just my stomach.

It kept getting worse and so I then began my around the medical community tour. I must have seen a dozen doctors, all of them doing one exam and maybe ordering 1 or 2 tests and then sending me to another doctor. I had just about every test you could think of. Barium from all angles, CT scans, etc. The only thing I didn't get was a colonoscopy or a visit to a GI.

So, then a new doctor takes over my old doctor's practice. He's fresh out of medical school. I start going to him. He looks over everything, pulls out his medical books with me, we start running over all of the possible causes, their symptoms, etc. We eliminate most all of them and end up with crohn's as the only reasonable source of my symptoms. He set an appointment with a GI and my doctor and I ran down all the various ways of treating crohn's from the least dangerous to the most. Once a month weekly runs of steroids and high dose antibiotics seemed to do well for me and after a few months I started going into remission.

I was doing really well by the time my GI appointment showed up 6 months later. My GI was convinced that I had a defective ileum that was simply too small. He scheduled a colonoscopy and right afterward at the debrief before sending me home he seemed rather disappointed and said that my ileum was of normal size (apparently he was hoping to write a paper about this or something as excited as he was about it) and that it was too inflamed for him to really see anything else.

Later when I went back to him for the official results he said the whole colonoscopy was negative and there were no signs of inflammation. When I mentioned to him what he said 15 minutes after the colonoscopy he just scowled and said "Why do you even want crohn's? I'm not going to diagnose you with that. If I did no insurance company would take you and you couldn't pay me."

So then I went back to my GP and continued with him. A few months later my Medicaid ran out when I turned 18 and my treatment ended. My GP loaded me up on painkillers that I rationed out for a little over 2 years and I learned what OTC medications to take and when. That's it.
 
M

MikeN

Guest
I was suspected of being aneamic after my blood tests, but after the pain wouldnt go away a ct scan diagnosed me straight way. so i would say yeh i was diagnosed pretty quickly
 
I

Isla

Guest
Glad someone necro-posted because just reading this entire thread on this very bad (diagnostic) day made me feel a WHOLE LOT better. I still can't help feeling like maybe the serum test was wrong, maybe it is something else or nothing at all (i.e. hysteria.)

Age 19 - colonoscopy, upper endoscopy, barium swallows - IBS
Age 21- colonoscopy, exploratory laproscopic surgery, 7 specialists - Insane, Drug Addict
2007 - ER visits but no tests done- PID, kidney infection
2008 - CT scan showed small bowel obstruction, referred to have colonoscopy that was negative, did the pANCA and ASCA serum test that came back positive for Crohns but the pill camera was negative - so now my GI thinks it isn't Crohns but gave me Asacol anyway and said I don't need to see you for 6 months...

sucks cause I am not feeling well at all. Which makes me upset, so I am going to try to sleep that stress away :)
 
wow, 60% are no...

i wonder what other diseases are like for first time diagnosis correctness?
 
I think the main problem is that crohn's disease doesn't have visible damage to it until it's rather old. Doctors look for that cobblestone appearance but you don't get that until you've had active crohn's for years. It's rather consistent in that people have symptoms and clean tests for a few years and then get checked again and it's positive. Your intestines are not going to completely change appearance over night but it seems most doctors think they do. Not only that but almost never do they check the small intestine just because it's difficult to do. Yet one of the most common (if not the most common) place of initial infection is on the small side of the ileum which is an inch deeper from where a colonoscopy can see. So close yet so far.

Doctors should be looking for reported symptoms and evidence of inflammation at first and only be surprised by a lack of visible damage after 5 years or more of the disease.
 
I

Isla

Guest
Thanks Colt! This is one of my most favortist (yes I make up words frequently) threads on this forum. It reminds me that I am not crazy and that it is not psychosomatic. My symptoms and serum blood tests say CD - not my fault my butt doesn't show it yet ;)
 
S

SophieL

Guest
No. Was told for 3 years and following several sigmoidoscopies and MRIs that all I had were (chronically infected) fissures which for no good reason refused to heal at all. Finally got diagnosed after a colonoscopy. Quite frustrating but it's such a rare form that I can't really blame them for not working it out staight away, added to that that I have no family history of the disease.

Good pol!
 
E

elizabeth__

Guest
It took me 4 visits to the GP to get referred after being put on every antiobiotic available to treat a "stomach bug".

After an attempted flexi sigmoid (never happened, turns out that I'm allergic to latex), rigid sigmoidoscopy and abnormal biopsies/blood tests they think its Crohns disease but having to wait on a referral now back from Uni, and home for the Summer in London. Though after reading everyones posts, seems that I'm only at the start of the diagnosis journey!
 

Entchen

Chief Dandelion Picker
Because of the nausea and vomiting aspect of my symptoms, I was sent for an emergency head CT -- before the doctor even took my blood pressure or sent me for blood work. That's when I knew it was time to get out of the walk-in clinics and find a reliable family physician.
 
Ahh.... I voted before I looked at the date of this thread.

Was there a spam bot in the house...????

Me, I was diagnased 4 times, all correct.

Why 4 you say?
I moved country a few times. Each time, I would get sick and they would say things like.... "You say you have Crohn's..... Mmmmmm, we'll see"

"yes, I can now tell you that you have Crohn's Disease.
It an inflam........"

every time.

After they would tell me this, I'd say "isn't that what I told you at the start?"

ahh, fun times......!!!!! ;-)
 
First I was told wheat allergy, then endometriosis, then interstitial cystisis...it goes on and on and on. Last year I went to my doctor and told him that I thought I might have Crohn's. He said "oh, no this doesn't sound like Crohn's at all". :voodoo:

About six months later I end up in the emergency room, being told that I have either Crohn's or UC.
 
yer just abouts
I was first told IBS, but this was before any tests
they then did tests quite quickly and was diagnosed not long after
I really cannot complain at the consultants and drs they were brilliant.
 
Nope! I was told I had IBS, then it was Acid Reflux, Urinary Tract Infection, Gallstones, Pregnancy, Viral Infection etc etc etc....a White Cell Scan and MRI Scan decided upon Crohns after 2 years of seeing Doctors.
 
I didn't do too bad. Admitted to hospital thinking I had appendicitis. Then they changed their minds, said it was my gallbladder and gave me antibiotics and discharged me. When I was readmitted they said they didn't have a clue, so ultrasounded my whole abdomen, found a problem in intestines. CT scan was 'highly suggestive of Crohn's', colonoscopy and biopsies confirmed. So although they originally said it was my gallbladder, it only took them 10 days or so to change their mind and say Crohn's.
 

DustyKat

Super Moderator
No. Roo was first diagnosed with Abdominal Migraine then Pancreatitis and finally Crohns when she was on the operating table. They said it had most likely been present for 2 years.

Dusty. :)
 
I checked yes but they thought I was lactose Intolerant for years. Then I started not to be able to eat anything! (Anything Intolerant??) Then after a endoscopy and colonoscopy we got the right answer.
 
Nope!! I was told it was IBS and/or lactose intolerance. It took 15 years for me to be diagnosed with Crohn's Disease.
 
I was. It was then they took it away and said IBS. Then years later the bleeding returned...crohns was then again diagnosed. Maybe I have both. ????

I was diagnosed with endometriosis at 13 and on BCP at 15 to control it. I didn't have my first crohns flare (with bleeding anyway) until I was 29. My mom has crohns and no one thought in that direction. I did have female issues that pregnancy seemed to resolve for me.
 
I was 1st diagnosed on the NHS with gastritis then appendicitis then told I was fine and sent home even though I was sick and my bloods were up the left so I went privately and was diagnosed straight away within the 1st 5 minute consultation with a professor he just did all the tests afterwards to confirm his diagnosis!!!... I am very fortunate to have private health insurance.
 
It took 20 years for the correct diagnosis. After that, it took only 2-1/2 years before my colon got yanked.

IBD is a b*tch for all of us!
 
Told it was ibs for 15 yrs by my family doc. Had me tested for parasites and nothing else! Had the symptoms for at least 15 years before that ( since i was 16ish). Although, first time in emerge (3yrs ago) had a very thorough doc, stayed in all weekend for testing ,and had a diagnosis of Crohn's by the 3rd day. Needless to say I now have a new family doc and a great GI specialist.
 

Trysha

Moderator
Staff member
IBS all my life, intervals of "colitis" treated with antibiotics--------no scans then not like all the modern equipment available now.
At times the pains responded to anti spasmodics.
Three years ago diagnosed with crohns at first colonoscopy, could not believe it.
Treated with steroids, bad reaction to imuran.
Recent colonoscopy confirms the diagnosis sadly.
Have a super GP and GI now
Trysha
 
I was told I had IBS and was treated as such and like so many others got way worse. Had like 4 colonoscopies (1 while awake!! OUCH!!) and doc did not get biopsies. That was over 10 years ago. Biopsies were taken with the one I had last year.
 
AH, first told IBS by doctor 1....

Second GI doctor did Colonoscopy and found mastocytic enterocolitis..still stayed sick.
Upper Scope, small bowel follow through showed nothing but hiatel hernia and duodenitis.
Prometheus Lab serology test came back positive for Crohns and scheduled for pill cam.

Pill cam results finally showed the inflammation and finally got a confirmation of Crohns today.

So this was over a 2 year process...thank goodness my second doctor believed me and kept searching for answers.

I return Monday to discuss my results further...
 
2000 bad flare how long not sure but I was told IBS and test cecial disease run it Irish side,
Other bad flare in 2007 before tests more for coecil disease a least 5 more but Oct 2007 tests and told Crohns.
 
My sons GI ran labs & asked him a few questions. Based on that he said CD or Celiac's. He did a colonoscopy the next day. He diagnosed CD .
Thank God it was fast. He was sick at that point
 
Wow....I'm much the same as most of you... For a few years I was told... First tummy bug, then ibs.... After countless obstructions, finally in emergency they could tell by X-ray, after that, colonoscopy confirmed crohns and strictures. :/
 
diagnosis

Hi it took the 3 and a half years before i got diagnosed.
they said at first it was kidney disease, they said it was live failure then they said it was gall stones. I was finally diagnosed in november last year.
 
Don't know, still undiagnosed, probably should've voted no, because what the GI said the first time around isn't a sensible diagnosis.

After a rectal exam, sigmoid, and colonoscopy. Pain and bleeding for about 6 months:
"Oh, we didn't find anything, you must have a hemorrhoid and a pulled muscle."

Yep. I had invisible hemorrhoids and a pulled muscle from all the rest trying to feel better. :ybatty:

On my second round around now, and my new gp actually shows a bit of concern! :)
 

annawato

Moderator
Staff member
I'm another one who was told it was all in my head and I was just trying to get out of school. Took 15 years before I was diagnosed, fortunately my crohn's wasn't as serious then although I spent a lot of time blaming my upset tum on a bug or something I ate. Just though I was susceptible to tummy bugs.
 
I was diagnosed during my first sigmoid by a Dr. that ended up saving my life.
The GP I went to for two weeks every second day, prior to going to an ER, only put me on imodium... My GI Dr. told me later I had maybe a left to live as I was so dehydrated my kidneys were in process of shutting down.

My Crohns started very suddenly and got bad fast...
 
Let's see. Gastritis. Kidney stones. Kidney infection.IBS. Parasites. Gallstones, Crohn's, IBS, Crohn's. Five years till first Crohn's diagnosis, and a year of pain and misery until I was rediagnosed with Crohns. yay for incompetent doctors!:voodoo:
 
I got told I might have ulcer and started to try different meds. I was a teenager (I think), so the doctor started to try different ulcer meds, it was great fun for me since I seemed to get only bizarre side effects. I think my pee went blue once. I think after the 5th drug and finally able to run more tests, they got it right
It was strange they did not think crohn's at first since my sis had it and my dad did.
 
Let's see, I've had: -

IBS (impossible at the time I was told, as there's an easy cure for IBS - quit eating grains. Seriously. Works in 90% of cases. I stopped eating them 10 years ago - my IBS attacks miraculously ceased within 6 weeks! Grains are evil - and as deleterious to health as smoking).
Then, because I was throwing up and had the runs, it was gastroenteritis
Then I was told it was gallstones
Then hyperthyroidism (despite my T4 and TSH levels being normal)

Then we got a new GP at the local practice - and she's the first one to mention IBD! This is after me suffering like this since 2006! I spent my birthday this year with one of the worst flare-ups I've EVER experienced. I was in Sheffield for a gig (thankfully I was able to go as it was 2 days earlier). I woke up on the morning of my birthday and was immediately sick - within about a minute of waking. Couldn't make it to the bathroom in time! Then I spent the rest of the day in the bathroom with the foulest-smelling excrescence exuding from my backside!

I told the cleaner (unfortunately, she was Latvian and hardly spoke any English) and she called the manager - who promptly chucked me out of the hotel! 2 days after I got home, I received a bill for £400 for the room cleaning! I've not paid it, nor do I intend to! a) because I can't afford to and b) why the hell should I...?!

So, if you're going to Sheffield, don't stay at the Premier Inn on Angel Street - they're not very sympathetic to those with IBDs... Stay at the one on St. Mary's Gate instead, the manageress is lovely...

Sarah xxx
 
I was told that it was Crohn's after a month of acute diarrhea, years of non-specific GI symptoms, and my first colonoscopy. I recently switched GI docs and he now tells me that he suspects microscopic colitis instead of Crohn's. I'm hoping that the 3rd one (at a teritary care center) can get it right :/
 
After running a few routine tests my stupid GP told me that my symptoms were all in my head, suggested I take up yoga, and that it looked like IBS. Fast forward 8 long years, he still didn’t think there was cause to investigate further when I added Erythema nodosum to my symptoms. Another year went by, I was surprisingly well, all of my previous gastric issues seemed to have dissipated, but he finally had to send me for the scopes after I fell unconscious with anaemia. Results found that I have Crohn’s specific to the ileum. Not “all in my head” after all!
 
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annawato

Moderator
Staff member
Isn't it amazing how many if us get told its all in our heads, and the heartache and guilt that that puts us through for many years. Surely anyone presneting with the symptoms we describe should be investigated for crohn's and UC before being told we were imagining it all. MAkes me so angry!:yfrown:
 
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