You have IBS (even when it's clear you don't!)

[StarGirrrrl]

As someone who was told I had IBS 3 years ago, after consistent inflammation found in blood tests and night attacks/sweats (dismissed after normal flexible sig endoscopy), and again now when I have joint pain, still inflammation, abdominal pain, positive WBC scan and horriffic night attacks, I know from this forum I am not alone.

I'd love to see all your misdiagnosis stories to try and understand better why this happens.

What were the symptoms that didn't fit, and what was it that finally shut them up?

I was sent back to Gastro after a WBC scan found inflammation in my bowel, but still they mention IBS. Maybe it's a legal issue I don't know!

 

[Dras]

I was first told I had chronic inflammation in my stomach wall and thats all. The GI prescribed me nexiam, checked into hospital a day later with severe pain. And went to a new GI who,after loads of testing and time, found my crohns.

 

[DustyKat]

Roo's symptoms started about 18 months prior to diagnosis but they were patchy and infrequent. Six months out they started to become more regular, vomiting, headcahes, sore eyes, weight loss and upper abdominal pain. They eventually diagnosed Abdominal Migraine. All blood, urine and faecal tests normal. 13 days out from diagnosis pain changed and became severe in her back. Had an ultrasound of her right kidney and they thought she a congenital problem called a PUJ obstruction. Had a nuclear scan and it showed some slowing when the kidney emptied but otherwise normal. 10 days out, pain unbearable and admitted to hospital, only abnormal blood was pancreatic enzymes so she was diagnosed with Pancreatitis, bloods were normal the next day. Had a full contrast abdominal CT Scan, no abnormalities found so discharged. Pain came back the next day and she became progressively worse - pain, vomiting, fever, weight loss. Readmitted to hospital and bloods showed she was septic. Taken to theatre the next morning for an appendectomy and laparotomy. When they got in there found her bowel had infarcted and perforated, they sure as hell weren't expecting that .......................diagnosis Crohns!

Dusty.

BTW - The kidney problem was caused by her inflamed ileum.

 

[Manzyb]

ugh!! It's so frustrating!

I started getting sick when I was 13 off and on with diarrhea and vomiting things like that. I was told that it was an ovarian cyst and appendicitis when I was 14. After that, I was sick all of the time. I kept going to the doc, I kept getting the whole IBS story, or I was stressed out, then it came to I was bulemic/anorexic, and doing it to myself. What freaking 14 year old could make themselves that sick? Then I was told I had a stomach ulcer. Finally, I went to the doc on a friday and sent home with the smae diagnosis. I went back the following Monday and had lost 16 pounds. I was now 15 years old. The very next day was in to see a GI for a colonoscopy and was diagnosed right then and there. Finally, after 2 1/2 years I had my diagnosis.

It really does suck going through such a terrible time before diagnosis. I was so sick, I relaly thought I was dying at times. It was crazy.

 

[Rossy]

Hey stargirrrl

If anything my story is the other way round to yours, just goes show how difficult it can be to diagnose IBD.

Things clearly were'nt right with me for some years so I went to my GP and explained my symtoms, he just happened to have a student with him at the time so he proceeded to give me a finger examination there and then. I remember him looking at his gloved finger and remarking to the student "looks like blood, could be an IBD".

I then got bloods taken as he said he wanted to check for inflammation and to see him the following week. I went back to see him 7 days later and he told me that my bloods had come back clear so therefore it might be IBS and not IBD but he would refer me to the hospital gastro unit in anycase.

At the hospital they decided to perform a colonoscopy and it was then that they determined that i had an inflammed colon throughout its length, hence pancolitis.

I never trust blood results as a result of this, very unreliable.

 

[Entchen]

Mine started out with "probably an ulcer."
Then, possible brain tumour. No kidding! I was sent for an emergency head CT.
Then, lots of "you're fine, it's the flu, come back in two weeks if you're still throwing up all the time."
Two weeks later, it was "you're fine, it's the flu, come back in two weeks if you're still throwing up all the time."
Then, abdo ultrasound and other tests were ordered but the wait took a few months.
In the meantime, I got myself a family doctor, realizing that walk-in clinics were just not working out. She figured it was IBS but ordered appropriate tests (blood work, barium tests). Wonderful. Long wait to get the tests, done, though -- two or more months in some cases. In the meantime, my condition deteriorated. I can't believe I'm saying this, but Thank Goodness For Blood. I mentioned blood at this stage -- hadn't before because I'd had a fissure when I was younger and didn't realize that blood is considered abnormal. THAT got me a c-scope.
Unlike many of you, all along the tests indicated IBD (except for that head CT, lol). Very high inflammation markers, things showing up on both barium tests, etc. No jumping to conclusions by the docs, but they knew early on that something was up.

 

[Sailorluna]

It's sad how they struggle to diagnose this.

I have had issues for about 16 years - first I was told it was food allergies, then gallbladder. I finally saw a GI last Nov who spent about 5 minutes with me before announcing it was IBS and sending me out the door. After that I started losing weight steadily and vomiting. I had a colonoscopy that was clean and was told once again it was IBS. My protein dropped very low and I was having problems eating. I was given anti-vomiting meds and sent on my way. My feet and legs swelled up huge - they gave me compression socks and more meds - side affect from either the meds or the low protein) I swear that I was in my doctors office about every other week. I was assured that it was just how my IBS was presenting. By June I had dropped 60 lbs and could not get up off the ground without help. You could see my ribs on my back and chest. It hurt to sit in the bathtub because there was no cushion to my bones any more. Ick! The GP set up a referral to a kidney specialist - how does that make sense?

Shortly afterwards I was so dehydrated from vomiting that I went to the ER. They got me on the IV and wisked me off to the cat scan and found a blockage. After a week on a protein drip (no food by mouth) they did the resection and found Chrons. One of the doctors at the hospital said he was sorry that my GP had "failed me".

I don't know why they jump to conclusions - easier maybe? The GI I saw in November told me that most of his female patients have IBS. My GP had IBS herself perhaps that was why she clung to the diagnosis too.

Also - I think the sicker you get the harder it is to stand up to the doctors. It just takes to much energy.

 

[Rachel2]

Yes, it does take energy. I was diagnosed with IBS several years ago with no tests at all - it was all based on questions only from my then GP. And I was given Mebeverine and sent on my way. it may have been that, at that time, but it sure isn't now!

Even this time round, with a much, much better GP, and with my symptoms being so dramatic (blood, vomiting, night sweats, C and D, unbearable pain), and even though I am being referred to a GI, I do wonder if sometimes, they think it is all in your head.

I have no idea what I have, it could be something else entirely, but oh the frustration....

 

[Crohnsie]

I never knew what crohns was when I was misdiagnosed with IBS, no blood tests, just assumption from my old doctor, symptoms got worse, rushed to hospital then a section of my bowel removed, appendix taken out before the burst, septicaemia and a stoma, oops, silly doctor!

 

[StarGirrrrl]

Thanks for all the replies. After frequently coming across mentions of "they said it was IBS", I thought it would be helpful to see all the stories in one place

 

[smackies]

i've come to the conclusion that irritable bowel is just an easy out for most gi docs. wikipedia: "Irritable bowel syndrome (IBS or spastic colon) is a diagnosis of exclusion... Colon cancer, inflammatory bowel disease, thyroid disorders and giardiasis can all feature abnormal defication and abdominal pain. Less common causes of this symptom profile are carcinoid syndrome, microscopic colitis, bacterial overgrowth, and eosinophilic gastroenteritis. IBS is, however, such a common presentation and testing for these conditions would yield such low numbers of positive results that it is considered difficult to justify the expense. Because there are many causes of diarrhea that give IBS-like symptoms, the American Gastroenterological Association published a set of guidelines for tests to be performed to rule out other causes for these symptoms. These include gastrointestinal infections, lactose intolerance, and coeliac disease. Research has suggested that these guidelines are not always followed. Published research has demonstrated that some poor patient outcomes are due to treatable causes of diarrhea being mis-diagnosed as IBS. Common examples include infectious diseases, coeliac disease, helicobacter pylori, parasites. Celiac disease in particular is often misdiagnosed as IBS."

nice that they admit they overuse the diagnosis of ibs and then justify it by saying that testing for other causes would be too costly. lol i'm sure the insurance companies love that line of reasoning....