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Crohn's Disease / Ulcerative Colitis Community
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Avatar universal

chrons with negative colonoscopy?

hi..my doctor has come to the conclusion i have IBS ...after not showing any signs of chrons in a colonoscopy test ...I have every symptom of chrons however ..ab. pain ..bowel changes ..bloating..pain ..have had red eyes ..sores on leg that change colour when fading ..mouth ulcers..etc...my question is has anyone been diagnosed with chrons after having a clear colonoscpy?
32 Responses
421320 tn?1207261864
Sorry ma'am but I was diagnosed with it after my bloodwork, colonoscopy and biopsies came back positive. Most people I have talked to that have Chrons also had the positive colonoscopy's which sealed the deal. Sorry.
Avatar universal
It is possible you have Crohn's in the small intestine, which will not show on a colonoscopy, as this only looks at the large intestine (colon). An upper endoscopy (to look at the oesophagus, stomach and small intestine) is another test to rule out Crohn's as biopsies can be taken of the tissue during the procedure. Crohn's often starts around the terminal ileum (next to the appendix) and can progress to the whole GI tract (mouth to anus), as mine has done. A barium swallow through is another test to see any problems in the upper GI tract, but this is purely imaging, and biopsies cannot not be taken. As far as I understand, the only conclusive proof of Crohn's is biopsy of affected tissue, looked at by a pathologist.

IBS is a diagnosis of exclusion - after all available tests are completed and found negative for Crohn's or Ulcerative Colitis. It is not an IBD auto-immune disease and in my opinion, a lazy diagnosis by doctors who cannot be bothered to do proper evaluations. Have you been tested for coeliac disease, as this can have similar symptoms to IBD?

Liz.
203342 tn?1328740807
I had something simular happen. I had surgery in August to remove a mass in my small intestine, in the terminal ileum and they biopsy said high probability of Crohns. However, when I had a colonoscopy and endoscopy 5 months later, it showed inflamation and ulcers throughout my small intestine but this time negative on the Crohns. I don't really understand. The doctor said I could still have it but been in remission during that time. That makes no sense to me. So we still don't know if I have it or not. I've had biopsy that said yes and one that said no, I guess. It just doesn't make sense to me. Still, the prescription is the same whether I have it or not, steriods to clear up the ulcers and inflamation. I'm taking Entocort and Nexium. The doctor told me as long as I'm still feeling pretty good by this Summer then  won't need to see him again unless I get symptoms again.
He told me that doctor's are reluctant to diagnose Crohns unless they know definately it is Crohns because of insurance reasons. I guess I can understand that. Still, I'd like to know if I have Crohns or if it's something else, what is it? You know?
I hope you get a diagnosis soon. I can understand your frustration. I wish you well. Take care.
Avatar universal
thankyou both for your informative replies...I have heard of people who have chrons in the small intestines ...however when i asked my doctor whether or not this could be a possibility...he said if i had chrons it more than likely would have shown up in the bowel/colon and didnt want to talk any further ...i feel very frustrated as i have looked into many chrons symptoms from people with chrons and have been through everything they have ....i was overwhelmed to finally find someone else going through what i have...i  share your opinion of IBS being a lazy diognosis from a doctor ...i just dont think you can be as sick as i've been and it be that...and do you have to be having an attack of chrons for the colonoscopy/ endoscopy to pick up a positive result ...or can it be picked up when youre not showing any symptoms?....sounds like Aprils question!...anyway ..isn't  it just great when you get better..have had 5 weeks of hell and am now feeling normal again!...how are you girls feeling ?...good to talk...thanks for listening, ....saradan.( steph)
Avatar universal
Ok I know I said it wrong, but for the last 2 woman who posted, I was reading that there are 5 different Crohns, not sure of all but remember the most common was the ilieum, then lg intestines, then beggining of sm. intestines the duednum, from mouth to anus
and in some the jejelum,(where they can see with the endo capsule camera, but not with regular endoscope or colonoscope??

I was wondering abt this myself??
Any responses at the jejelum would be appreciated.
                                                                         Thanx,
                                                                           georgie
177554 tn?1256357393
You can have Crohn's Disease anywhere in your digestive tract, from your lips to your anus. It is most common in the colon, but it isn't exclusive. Think of it as a mean thing living inside of you that can either attack one place or spread to another place, or MOVE to another. This is why patients who have portions of their bowel removed, sometimes have Crohn's pop up in a new part.

I would recommend getting a capsule endoscopy. You swollow a camera in a pill that sends photos every three seconds to a machine that you wear around your stomach for the day. It does not hurt at all and it eventually comes out naturally like anything else.
Avatar universal
trust me ,when a doctor does a colonoscopy,he goes into the small intestines, most people with crohns has it in the iliuem.i got dignosed with crohns disease in the year 2000,.and just last year got dignosed with ulcerative colitis and diverticulis.just got out of hospital in time to celebrate christmas,was in hospital 7 times last year with it not fun.if you feel you need a second oppion get one. crohns can even affect the eyes. my eyes look like there bleeding,my tongue has ulcers  it goes all the way to my abdmion,mostly right side but affects left side and my back.kidneys are being affected.im going to the cleveland clinic for my crohns now.this is not a disease i wish uppon anyone, both of you sound like you need a second oppion.
Avatar universal
I am in a similar situation and trying to get a second opinion at this point. I have been having intestinal problems since 2002 and just a year ago got a dr to finally find a colonoscopy necessary. I was diagnosed from that with non specific non ulcerative colitis. I suffer daily with mucousy diarhea and abdominal cramping and pain. Recently I develped a peri rectal abcess and fistula that I am seeing a colorectal surgeon for, who informed me that I had been misdiagnosed by the first GI dr because the only two conditions that can cause that kind of fistula is crohns or ulcerative colitis. I have only been treated for the currest symptoms with hyoscamine and another med but I can't remember what it was offhand...started with an L i think but I couldn't handle the side effects from it. I am not getting much relief from the medications that I have been given. I am also being treated by my general dr for anxiety and depression disorder and for chronic insomnia. I really just think there is something much deeper going on here with all these different things going on. Anyone have any ideas or suggestions?
1 Comments
All symptoms of crohns!
Avatar universal
I went undiagnosed for 12 years with Chrons. I was always told I had IBS but I knew different I was too sick for that. Through a colonoscopy there was some inflammation but they still did got get me a diagnoses (5 Colonoscopies later). It was not until my dr ran a specific blood test for Chrons that came back abnormal was I finally diagnosed with Chrons. Be very insistent, we know our bodies better than any dr out there. If you know something is wrong keep pursuing it.  IBS not not include any inflammation internally and a fever and such. Hope nobody ever has to wait as long as I did for help and treatment.
Avatar universal
Ask your doctor for a SED rate and CRP blood test.  Ask for a genetic test to be done on your blood.  It's expensive but conclusive.  Crohn's doesn't always show up in a colonoscopy.  Depends upon where it is located and that can change.  Prednisone is not for long-term therapy.  It destroys your teeth, muscles, tissues that can result in hip and shoulder replacements.  The disease ***** but you can control it with a positive attitude, healthy diet and proper medical care.
Avatar universal
I keep having rectal bleeding even though I use HC suppositories which help.  My colonoscopy and endoscopy came back negative for Crohn's.  Which blood tests do I need done to be sure?  I'm on prednisone 10mg/day for one month for my asthma and need it to breathe better and relax
Avatar universal
I am in a similar position too...
my problems started around two in a half years ago where i had extreme pain after eating any types of foods, followed by diarrhoea...sometimes the pain was everyday, sometimes once a week but whenever it was it was so painful i would almost faint and could barely walk..
I started loosing weight, ive lost about 10kg since the pain first started. My pains only come about once every 2months now because i am careful with the amounts i eat and how much of certain foods i can eat, i have learnt to read my stomach and when i need to stop eating in order to stop the pain from coming
I have lost my appetite and i rarely  feel hungry. Nearly every day i feel nauseous. On the days i dont have diarrheoa i tend to be constipated, sometimes i dont go for days. My stomach swells very easily too, half the time i look pregnant and i am a petite person.
I have been to a gastrologist for my problem and had tests upon tests. I have had a colonscopy, endoscopy, blood tests, urine tests, stool tests and an xray and the only thing the doctor has found is that i am lactose intolerant which is far from the only problem i believe i have because even when i went on a lactose free diet for a month i was still experiencing the same problems, and now i pretty much eat lactose free butter, cheese, milk and yogurt. Recently i also bleed from my bottom and skin came out from somewhere inside. For a week after that i had mucus in my stool and now i keep getting anal fissures. Has anyone else had a similar problem?
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