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What was your Crohn's misdiagnosed as?!

So... I was having bad symptoms from the age of 12 and was not diagnosed with crohns until the age of 22 I was told every time I went to the doctors or was hospitalised that it was something different.
I have a long list of things I was told it was over the years, has anyone else been told it was something it wasn't?! Add it on the list :)

1. Endometriosis (which I have)
2. Poly-cystic ovaries (again I have)
3. Pelvic inflammatory disease
4. UTI's (I've lost count of how many)
5. IBS
6. Period pain
7. Appendicitis

I've been brushed off with many more diagnosis' I can't remember them all and got treated for things that were not even wrong with me!!!!!!!! but the best one I think I got told was...

8. Nothing - it's all in your head Miss Higgins!

Finally after finding a consultant to listen to me it turns out I have Crohn's disease...

So anyone else?!
 
Bearing in mind this was in the early 1970s when hardly anyone had even heard of Crohns... I was 15 and on the psycho-geriatric ward of my local hospital (maybe the children's ward was full)....
First of all they thought I had rheumatic fever and sent me home. Then I was back on the ward... the strangest diagnosis was brucelosis... they kept asking me if I'd been drinking unpasteurised milk.
Strange days back then... they told me I'd never live a normal life... Then they told me I only had a 50/50 chance of living and threatened to force feed me through a rubber tube. I got more sense out of the psycho-geriatric patients.

However... being told "it's all in your head" is pretty bad.
 
Attention seeking and/or anorexic. From the age of 13 to 34 I never even got to see a gastroenterologist but enough psychologists and psychiatrists.

And multiple sclerosis.
 

smt

Banned
Attention seeking and/or anorexic. From the age of 13 to 34 I never even got to see a gastroenterologist but enough psychologists and psychiatrists.

And multiple sclerosis.

Madam,

Last March, in a reply to me you said that you have a Ph D and have worked in different countries. I would say that with the sort of difficulty that you are talking about, you have done very well. I have also seen your initiative with regard to the formation of a group here - I would say that this group has been well worth forming an probably was overdue. Thanks for the initiative, and do well.

Also, my (probable) IBD has been called IBS, and that I suffer from a "personality disorder".

Regards
 
After barium enemas and other tests in 1990, I was given a hysterectomy - That HAD TO BE the only other explanation - I was officially diagnosed with Crohn's in 2009
 

my little penguin

Moderator
Staff member
Ds had symptoms since two weeks old dx at age 7
He was
1) a sensitive kiddo so avoid tons of food
2) gluten intolerant but not celiac
3) a skinny kiddo ( he had stopped gaining weight)
4) constipation severe enough to cause rectal prolapse - just not eating enough fiber per ped
5) abdominal migraines /cyclic vomiting syndrome
6) eosinpohilic disorders including allergic colitis
Barium x ray series told "at least we know it's not crohns since his ti won't show any barium at all"
Three months later
Finally scoped both ends not just top and dx with crohns throughout
 
They never really diagnosed it - After tests didn't really indicate anything else. they assumed the pain was "Female" related. I was 29 years old -
 

DustyKat

Super Moderator
My daughter was symptomatic for 18 months with the last 6 months of that time being pretty full on. IBD wasn’t on the radar at any time so no scopes were done. The end result was her bowel perforated. She was diagnosed on the operating table. In the lead up we had:

  1. Don’t know
  2. Don’t know, this went on for some time
  3. Lets keep an eye on things
  4. Abdominal Migraine
  5. Back to don’t know
  6. Pancreatitis
  7. Maybe they will need to open her up to find the answer
  8. Septic - Lets take her appendix out to rule that out as cause. They found a ruptured bowel instead.
Dusty. :eek2:
 
Appendicitis 1973 Diag Crohn's.Disease after first of two bowel resections. 1st= 1977. 2nd= 6-1986. Then 11-1986 total hysterectomy ue to scar tissue, adhesions & endometriosis.Damn.
Both resections were between lg & sm intestines.
Hugs
 

Lady Organic

Moderator
Staff member
the ''chance'' those of us with recto-colitis have is that blood and mucus easily orient the diagnosis. I saw a random GP in a medical clinic who suspected right away IBD with my symptoms. She sent me to barium colon x-ray and a few days later I was officially diagnosed by a radiologist who urged me to see a GI.
 

Catherine

Moderator
My daughter Dx took 4 years.

1. stress
2. Stress caused by low iron
3. IBS
4. Anaemia due to over training
5. Dieting
6. All changed when dr read early ultrasound correctly. Dx with CD within 4 weeks
 
Lazy attention seeking kid,Lactose intolerant and then crohns. Took 3 years or so and loosing half my body weight before I got meds
 
I've had to go to three different doctors on my adventure with my Crohn's disease.

At first, one doctor believed that I had constipation, so I was prescribed with medicine (which definitely did not help whatsoever).
The next doctor believed that it was my stomach that was causing the problem. He thought I had some bad acid reflex thing, and so I was prescribed with more medicine.
My final doctor was my breakthrough. Even though he was an OBGYN doctor, he managed to pin-point key signs that the other doctors failed to noticed.
So I was sent back to my other doctor, and he recommended my current doctor. I was finally diagnosed with Crohn's disease at 16.

What a crazy journey it has been to finally get at this point...
 
When I was 14 the school nurse said I was trying to get out of class for some reason. I only had to skip gym class and I loved gym class, I participated up until one day during wiffle ball I told the teacher I had to stop or I was going to pass out.
 
When I was 14 the school nurse said I was trying to get out of class for some reason. I only had to skip gym class and I loved gym class, I participated up until one day during wiffle ball I told the teacher I had to stop or I was going to pass out.
It's so hard having crohns young, it still makes me sad of all the things I had to miss out on. But when you feel like your dying and no one believes you is even harder. I had some teachers help but unless you live with it you really can't understand what's going on. I even got suspended for leaving class to go to the bathroom, it was a need to go now and the teacher wasn't having it even though they knew you condition.
 
It's so hard having crohns young, it still makes me sad of all the things I had to miss out on. But when you feel like your dying and no one believes you is even harder. I had some teachers help but unless you live with it you really can't understand what's going on. I even got suspended for leaving class to go to the bathroom, it was a need to go now and the teacher wasn't having it even though they knew you condition.
Luckily my early symptoms didn't involve anything but fatigue and an uneasy feeling in my stomach, but between the middle of the winter when it kicked up and the summer vacation when I got in to see a GI and got diagnosed I had critical weight loss and had to be hospitalized.

Suck on that, school nurse.
 
I started have symptoms around 15.
First it was bulimia.
Then stress, stomach ulcers, then acid reflux.

It remain acid reflux for years. My PCP would keep upping my meds and I would continue to get sick. Finally at 30 they did a colonoscopy. They found tons of inflammation, but failed to biopsy it. They just told me they would monitor it. After weeks of severe guy pain I had another in February 2015 (new GI doctor). This time they found ulcers and a stricture. Finally diagnosed with Crohns. My new GI does say I am an odd case as I have very few lower GI symptoms. Most of my symptoms are extreme gut and stomach pain, nausea, and vomiting. In a flare I will vomit anything I try to eat or drink which usually lands me in the ER with extreme dehydration. Luckily I am married to an ER nurse so he sees my need to go before I do.
 
Symptoms started at 26
Mainly constipated with some blood

1. IBS
2. IBS-C ("we should do a scope. But since you don't have insurance, and I don't think it's anything serious like Crohns, let's not schedule one. Just avoid dairy, gluten and eat lots of fiber!)
3. Flare started & was diagnosed in the hospital with Crohns after they did a scope (age was 28)
 
1. Probably anorexia nervosa (when I was a teen, so my mum forced me to eat more which did not help at all)
2. IBS (they did not do a scope because "people with Crohn's look different")
3. Stress and no skills to deal with it

The weeks before I was diagnosed, I even believed I must be crazy because I feel so bad while everyone is certain that I am absolutely healthy except the stress/IBS thing.
 
Hello,

I also had to deal with this, I had excruciating pains for almost eight years and had my appendix removed before I finally got the attention and diagnosis I needed. Honestly they just don't act quick enough and as a result I had to have a resection in 2013, I was 15 at the time and weighted 3st 11lbs (that's how ill I was). That's the problem with Crohn's, there are so many things that it can be misdiagnosed as, my advice would be if you feel any of the Crohn's symptoms starting to surface, please play it safe and go to the hospital, it can vastly improve your quality of life.
 
First off, Crohn's was finally confirmed for me in 1982 when I was 23 after removed ileum was sent to pathology and proven to be Crohn's. That was a long time ago and it seems to me like fewer people had it back then, or it simply was not being diagnosed properly.

Here is my long list of misdiagnoses:

1. Stress from going to college
2. being a young man and girl crazy
3. struggling with growing up and not realizing that as adults we all have pain and discomfort at times. BUCK UP.
4. Nothing wrong, but take these Valium.
5. Groin Pull.
6. Bladder infection, here are some antibiotics
7. Bladder infection, here are some antibiotics, you are causing this because you don't drink enough water.
8. Most likely STDs. We need a swab or should I say scrape of the urethra. All of this told to me while my mom sat in the exam room with me.
9. Bladder infection, need to see urologist.
Side note: My ileum had communicated with my bladder and a fistula had formed. "bladder infection" no kidding, I wonder why????? My brother-in-law was in 1st year med school at the time. He says if a male has a bladder infection, something is wrong. It is not routine. Everyone else including the urologist says nope.
10. Urologist says bladder infection no big deal but start wearing a jock. Pressing my testicles into my bladder and against the fistula made the pain worse. My mom catches me not wearing the stupid thing and says she doesn't think I want to get better.
11. Nothing really abnormal, could be a psychological problem, immature 23 year doesn't want to leave mommy and daddy and go back to college.
12. See another urologist who performs cystoscopy with a splash of local in the urethra and nothing else. Not even a stick to bite on. 30 years ago, the device was a thick metal rod.
13. Bladder cancer
14. Crohn's disease 20 inches terminal ileum removed with resection. Part of bladder removed.

I feel such empathy and sorrow for each and everyone of you that had to endure such madness going through a prolonged diagnosis process. For me, in spite of all of the pain I was in, the worst part was my family not believing me and thinking I was weak, immature, and intolerant to pain. I was actually relieved when I got the cancer diagnoses. My family was in tears and I felt vindicated. I am strong and mature and massively tolerant to pain because I have to be just like most of us here. I guess we all share that as a special bond.
 
In reading the 20 or so posts in this thread a very common theme arises. Almost all of us were either directly told or it was implied that there is nothing wrong with us and it must be in our heads. I wish there was a way for the medical establishment and for family of people like us to understand just how devastating that can be for a person who knows they are sick, frustrated that it cannot be properly diagnosed and on top of that, being cognizant that many people think we are 'faking it" for some reason.

When I meet a new Dr., I always tell them that I would much prefer them to tell me they don't know or are not certain yet, instead of feeding me a BS diagnosis under the false presumption that I feel they must. Some Dr.s are taken aback by my forthrightness, others seem to embrace it. I gravitate to the latter dr.
 
Madam,

Last March, in a reply to me you said that you have a Ph D and have worked in different countries. I would say that with the sort of difficulty that you are talking about, you have done very well. I have also seen your initiative with regard to the formation of a group here - I would say that this group has been well worth forming an probably was overdue. Thanks for the initiative, and do well.

Also, my (probable) IBD has been called IBS, and that I suffer from a "personality disorder".

Regards
Hi smt

Getting through university was tough, in fact it was the motivation to study that kept me going, even though I was asked if I wanted to re-sit the final year because I was so sick.

Doing a PhD is perfect for anyone who needs to plan their time according to their own needs - even though in my case the toilets in the building were not the best places to hang out!

But all in all my illness was not toooooo bad until my second pregnancy at which point I had to give up my job and I would have rated my quality of life as 2/10.

Yes, I got one of those doctors who said "You don't look like someone with IBD". I know I am not the only one with that experience. 4 years on and I am picking up the pieces, I might even try to apply for a job this year.

Hope you are doing ok.
 
Hello,

I also had to deal with this, I had excruciating pains for almost eight years and had my appendix removed before I finally got the attention and diagnosis I needed. Honestly they just don't act quick enough and as a result I had to have a resection in 2013, I was 15 at the time and weighted 3st 11lbs (that's how ill I was). That's the problem with Crohn's, there are so many things that it can be misdiagnosed as, my advice would be if you feel any of the Crohn's symptoms starting to surface, please play it safe and go to the hospital, it can vastly improve your quality of life.
That is shocking, I hope you go from strength to strength now.
 
Diagnosed at age 10. It took 3 months.

First Dx was mono (granted, my monospot was positive, but it was a false positive probably caused by crohn's).
Then I was treated for a short time for Still's disease (systemic JRA)
Then Crohn's.
 
My 12 year old son was recently diagnosed with Crohn's by a GI but the diagnosis really surprised us. Our son developed an abscess last July 2015 right after vacationing in Dominican Republic and it was lanced twice before a surgeon chose to put him under to clean out the now huge abscess. He had to be put under three days in a row to have it properly cleaned, irrigated and packed. No fistulas were found at this time. He stayed in the hospital for almost a week and then we were sent home with home health to continue packing the wound. I eventually started packing it so that he could return to school. We began seeing a colon rectal specialist for check-ups when the area was not fulling healing and in December 2015 decided to surgical clean the area and recheck for fistulas...this time a fistula was discovered and a fistulatomy was done. The fistulatomy area healed but the abscess was still there and still draining, so in April 2016 the we repeated the surgery and another fistula or a remaining branch of the original fistula was found but it is too high up so a seton was put in. In June 2016 the seton was replaced with a new seton and a biopsy was taken to rule out Crohn's. The results came back inconclusive. We have since seen a GI and she says that our son has Crohn's but the colon specialist is not convinced. The scope showed very little and there was no blood in his stool. Our son has never had any symptom's of Crohn's except this fistula. I think it could be bacterial and want to try antibiotics first before getting on Remicade. Diabetes runs on both sides of our families so maybe that's why he is healing so slow? Can anyone relate??
Thanks!!
Jack's mom
 
I was misdiagnosed with Ulcerative Colitis and had a J-Pouch on that basis. It completely failed putting me in hospital for 4.5 months, reducing my weight to 6 stone and almost killing me.Turns out it was always Crohn's.😔
 
How does your son cope with a draining wound and school work? You should be immensely proud of him.
My 12 year old son was recently diagnosed with Crohn's by a GI but the diagnosis really surprised us. Our son developed an abscess last July 2015 right after vacationing in Dominican Republic and it was lanced twice before a surgeon chose to put him under to clean out the now huge abscess. He had to be put under three days in a row to have it properly cleaned, irrigated and packed. No fistulas were found at this time. He stayed in the hospital for almost a week and then we were sent home with home health to continue packing the wound. I eventually started packing it so that he could return to school. We began seeing a colon rectal specialist for check-ups when the area was not fulling healing and in December 2015 decided to surgical clean the area and recheck for fistulas...this time a fistula was discovered and a fistulatomy was done. The fistulatomy area healed but the abscess was still there and still draining, so in April 2016 the we repeated the surgery and another fistula or a remaining branch of the original fistula was found but it is too high up so a seton was put in. In June 2016 the seton was replaced with a new seton and a biopsy was taken to rule out Crohn's. The results came back inconclusive. We have since seen a GI and she says that our son has Crohn's but the colon specialist is not convinced. The scope showed very little and there was no blood in his stool. Our son has never had any symptom's of Crohn's except this fistula. I think it could be bacterial and want to try antibiotics first before getting on Remicade. Diabetes runs on both sides of our families so maybe that's why he is healing so slow? Can anyone relate??
Thanks!!
Jack's mom
 
When i got sick i was going to the doc every week for 6 weeks. I was having bad testicular pains. I had 3 testicular ultrasounds and a few other ultrasounds.
On week 6 after passing out at my house and dragging my butt back to the doc ready to die i got a cat scan.

I was admitted with diverticulitis, micro perforations, and about a liter of free air.
 
I was misdiagnosed with Ulcerative Colitis and had a J-Pouch on that basis. It completely failed putting me in hospital for 4.5 months, reducing my weight to 6 stone and almost killing me.Turns out it was always Crohn's.😔
That's awful! And what could have happened to me had I not declined their offer of curing me by the complete removal of my colon! I was lucky that I was just short of having no choice, sickness wise, I guess you weren't! What a disaster, how are you coping?

I now have no disease in my colon at all, I was diagnosed as pan-colitis, but have stricturing disease above the ileum instead.

Before the UC diagnosis I was told I had a "weak stomach" for at least 10 years and once my colon wasn't showing any disease activity anymore was told I must have IBS to account for the remaining symptoms.

It wasn't until I was hospitalised with a total blockage around 20 years later that it was deemed to be Crohn's.
 
Prior to Crohn's, they gave me the title idiopathic pain syndrome which basically means they have no idea what from. Notice the word idiopathic is derived from...
 
I was diagnosed with proctitis and then ulcerative colitis but I knew it was Crohns all along (due to Crohns symptoms from the start and also a family history of Crohns) but no one listened for several years, then I was told I had Crohns as if I didn't know.
 
I was told i had IBS for 7 years, with complete refusal for any testing for that whole time. I was given buscopan, anti spasmodics and anti acid pills which ironically is what gave me acid for the firat time in my life. But of course nothing worked and ended up with strictures directly from being left so long untreated and undiagnosed. I used to think that pain was what everyone with IBS had, until i had obstructions. Then i thought i was dying.!
 
My 12 year old son was recently diagnosed with Crohn's by a GI but the diagnosis really surprised us. Our son developed an abscess last July 2015 right after vacationing in Dominican Republic and it was lanced twice before a surgeon chose to put him under to clean out the now huge abscess. He had to be put under three days in a row to have it properly cleaned, irrigated and packed. No fistulas were found at this time. He stayed in the hospital for almost a week and then we were sent home with home health to continue packing the wound. I eventually started packing it so that he could return to school. We began seeing a colon rectal specialist for check-ups when the area was not fulling healing and in December 2015 decided to surgical clean the area and recheck for fistulas...this time a fistula was discovered and a fistulatomy was done. The fistulatomy area healed but the abscess was still there and still draining, so in April 2016 the we repeated the surgery and another fistula or a remaining branch of the original fistula was found but it is too high up so a seton was put in. In June 2016 the seton was replaced with a new seton and a biopsy was taken to rule out Crohn's. The results came back inconclusive. We have since seen a GI and she says that our son has Crohn's but the colon specialist is not convinced. The scope showed very little and there was no blood in his stool. Our son has never had any symptom's of Crohn's except this fistula. I think it could be bacterial and want to try antibiotics first before getting on Remicade. Diabetes runs on both sides of our families so maybe that's why he is healing so slow? Can anyone relate??
Thanks!!
Jack's mom
Back in 1988, I was operated on for both hemorrhoids and a fistula. It took s while got the surgeries to heal. I went to a surgeon and they discovered Crohns Disease as being the reason for slow healing. I don't know if that is the case here but I can relate to the slow healing.
 
Pretty sure I've had crohns my whole life but has my first bad flare at 12 with severe weight loss and vomiting. My growth was delayed and that was put down to just being small. At the time the paeditrician and GPs also put it down to stress...?
Over the many years I got
1. Ibs (with absolutely no testing at all and was commonly said for many many years).
2. Stress (this is a recurring theme)
3. Anxiety and/or depression
4. Women's trouble
5. Infection of some sort (with no further testing).
6. Bleeding was always blamed on fissures and/or hems. I was never ever looked at for hems until many years later by my gi. Now I know chronic, unusual and unhealing fissures are caused by crohns.
Pain was never adequately explained and I suffered for many years.
I was never referred to a GI until I was bleeding heavily and I finally got a referral. Within 3 weeks I was diagnosed with Crohns at 28.
 
I'm currently going through this now.. went to doctor with severe diarrhoea and small blood. Dr sent me for a colonoscopy. Colonoscopy has shown up with an ulcer and inflammation in my ti, apparently biopsies have shown mild inflammation. Referred to GI and is now being told he thinks it's more likely IBS. Worried that if it is Crohns and they say IBS that it's just going to get worse and they will not look any further for anything else
 
I'm currently going through this now.. went to doctor with severe diarrhoea and small blood. Dr sent me for a colonoscopy. Colonoscopy has shown up with an ulcer and inflammation in my ti, apparently biopsies have shown mild inflammation. Referred to GI and is now being told he thinks it's more likely IBS. Worried that if it is Crohns and they say IBS that it's just going to get worse and they will not look any further for anything else
Keep at them until you get good answers.
 
For as long as I can remember I have always had tummy troubles but from the time I started having very severe symptoms to the time I was diagnosed (11 months) I was told I had...
1) hemorrhoids
2) Gastritis
3) GERD
4) IBS-D
5) cDiff
6) Lupus
7) UC
And finally Crohn's
 
Many, many things! 10+ months of incorrect diagnosis!

1) Stress/anxiety from college
2) Heartburn
3) Appendicitis
4) An eating disorder
5) Hypochondriasis
6) IBS
7) Food intolerance
8) A stomach virus

The list goes on and on, as it does for most of us!
 
First came the celiac diagnosis, which my doctor's assistant told me "was all in your head" until every radiologist in the hospital crowded into the exam room during an upper GI to try to figure out what was making what looked like a hole in my intestines.

Crohn's was first mentioned 3 years later but I was stable taking PPI's (which do help gastroduodenal crohn's which I had). After everything fell apart three years ago my GI said "probably crohn's). After my second hospitalization this year they said "definitely crohn's") but then I consulted an IBD speicialist who told me I didn't have either celiac disease or crohn's and that I was merely stressed. His "prescription" for increased fiber constipated me for two weeks and my regular GI and I were a bit disgusted with his "stress diagnosis". Since he was a "specialist" it took me a while to realize that he was still wrong. My regular GI, whom I adore, was much more confident about my diagnosis than I was.

I understand it is hard to diagnose, but one would think they might be getting better at it instead of calling it IBS which can be downright insulting.
 
22 years ago, I had what I now believe was my first flare. I young(ish) and first time pregnant. I was dismissed and disregarded as an over-reacting pregnant woman.

Since then, I misdiagnosed myself with IBS.
 
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