chrons with negative colonoscopy?

[saradan]

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?

[elroque]

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.

[lizziecee]

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.

[April2]

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.

[saradan]

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)

[georgie439]

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

[PrincessKatie]

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.

[spazzy24]

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.

[soldiersgirl336]

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?

[Kemper9]

All symptoms of crohns!

[Montey25]

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.

[Kathy942]

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.

[ill13632]

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

[nkf738]

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?

[diggs1973]

Can you still have Crohn's if your IBD blood work came back normal?  A CT revealed thickening between my intestine and bowel.  The stomach pain gets me down so bad I can't function.  I have felt pretty good the last few weeks with just mild cramping and diahrea.  I have major joint pain and fatigue most of the time.  The nausea is very bad at times also.  I am an active person and these symptoms have slowed me down a lot.  I am scheduled for an upper and lower GI next Wednesday...

Any advice....:

[riot106]

Hi I'm only 17 yrs old and I have been suffering with all the symptoms of chrones disease for three months straight now. my aunty has chrones disease very bad also. I've had numerous blood tests, urine samples, stool samples, an endoscopy, colonoscopy, MRI scan and EVERYTHING came back normal. Obviously its so frustrating and now they're putting it down to IBS. Like you say, you know your own body better than anybody and it upsets me because I know it is something far more serious than that. I've had lots of blood and mucus in my stools for four months without fail. I've lost half a stone (and I am only 7 stone as it is) I sleep for days straight, I won't eat for days and the pain is unbearable the doctors prescribed me lots of codeine. It gets me down that the doctors are leaving it to IBS because I know this is not the case. It's horrible to think I may go 12 years living like this - it really puts a hold on reality :( thanks for all this advice it makes me feel better that theres people out there in the same position as me.

[Col73]

Ive been suffering for 2 years. Ive had blood work, stool tests, endoscopy and colonoscopy all came back negative. My colonoscopy showed apthous ulcers in my descending colon but the biopsies came back normal. My dr said it would be unusual for crohns to be in that part of my intestines. She said its usually in the small intestine. I suffer pretty much everyday with colon pain and just a feeling of complete unwellness. On the days I dont have a bowel movement I feel great but it seems like when I do have one, my whole body feels sick. I also have loss of appetite at times adn some weight loss. My dr also told me that crohns is usually just diarrhea. My stool is usually normal but it still makes me feel sick. Can anyone tell me if this sounds like Crohns? She thinks I have IBS but wants to do another colonoscopy to rule out crohns for sure. Thanks for any help you can give me  

[monkeyk]

My dr. just dia. me with crohns.  I do not belive that this is my problem.  I have no signs of symptoms of crohns.  My sister, brother and son all have crohns so I know what to look for.   He did a colonoscopy and  a scope down the throat( done on the same day).  The doc. said everything was clear but he said he thought he seen an infection so he did 3 biops.  now he tells me that it is crohns  and not my GB even though ny GB is only working at 8% from a hida scan.  I still don't belive I have crohns but i don't know where to go from here.  He wants me to start on meds for crohns and I am not ready to do this.  I need more proof.  

[CrohnieToo]

Well, the most common area for Crohn's disease to first strike is the terminal ileum which would be in the lower right quadrant. HOWEVER, Crohn's colitis is not at all uncommon (not the same thing as Ulcerative colitis) AND Crohn's disease can strike ANYWHERE in the GI tract from mouth to anus so ....

Crohn's disease is a very individualistic disease. Most crohnies do enounter diarrhea, but there are plenty of use who encounter constipation.

My gastro likes to do colonoscopies too. My Crohn's struck first in the mid-ileum and there hasn't been involvement near the ileocecal valve. So WHY would I put myself thru that hor-eye-bull prep for a colonoscopy???

IF a barium upper GI and SBFT doesn't give any answers, there is the CT Enterography, the MR Enterography and the Pill Camera Endoscopy.

[CrohnieToo]

I forgot: there is also the double balloon endoscopy (they get you from both ends and mark in the middle).

[club2420]

My fourteen year old has bad stabbing stomach pain to the right, below and above the belly button.  He had his appendix removed three months ago and they found imflamation around his ilium after colonoscopy they found several ulcers in his duedenal bulb.  The consult said it wasn't crohns after doing two enoscopy examinations and one colonoscopy.  He is not gaining weight, is finding alot of food makes the pain worse and gets very constipated - anyone have any ideas?
Angela

[Femail733]

Have you heard of Eosinophilic conditions? My daughter has Eosinophilic Esophagitis but it can occur in other parts of the Gastro tract too. Might be worth a look?

[avenge]

I feel bad for everyone that has to deal with this disease i have, "Ulcerative Colitis"..On 9-25-2012 at Memorial Hospital of Tampa i had asked my Doctor HJW  is the difference  between Ulcerative & Crohns Disease  play a wider part in my case as to complications i may have as a result of a positive outcome on  tests for Crohns  (biopsy). No sooner did i finish my question to him, did he say "I'm not going to stand here and have you give me a F*****G course on anatomy and stormed out of my room. So much for the "patients Bill of Rights" and or "Civil Rights". I have since filed a Formal Complaint to the C.E.O., AHCA, Florida Department of Health Consumer Services Unit, Department of Civil Rights (OCR), Division of Quality Care, Office of the Chief Inspector General ect. Next will be the Media. They have stripped me of my self Dignity knowing full well that stress is already at it's peek level.Total Disregard for a human being under their care. Hopefully some one with Administrative Power will have some morals to correct this nightmare he has inflicted upon me. So much for private health care. Anthem Blue Cross Blue Shield has turned a blind eye to this situation through informal complaint, but thats fixing to change through a formal complaint to their Medical Director. Dr. HJW  is accredited through them shame on them. its a damn shame one should have to feel intimidated to further their care to recovery through the ones that treated you in the first place. A speedy recovery to all above and beyond. J.C.
                                              

[EmSaCo]

I've been going through the whole diagnosis process for Chron's.  The colonoscopy didn't show signs of it, but I had a polyp that he removed, and he took samples in my lg intestine for biopsy.  If they didn't see it on the screen during the actual colonoscopy, can it still show up in the biopsies?  I have so many symptoms.  Abd pain, frequent bowel movements, feeling like I still have to go diarrhea, but nothing comes out and it hurts so bad.  I typically have about 6 BM's a day.  I have white discharge from my rectum, joint pain (knees, wrist), pain so bad that I have to take percocet and lay in bed in the fetal position.  I know something more serious than ibs is going on with me.  I've been so sick for about 4 months now.  I will get results from colonoscopy biopsies next week.  I pray they figure out what's going on with me!

[GDP1966]

I am experiencing the same thing!  Lost 20 pounds in less than a month and couldn't get out of bed for two.  My stomach hurts when it's empty but hurts more when I try to eat and I have to take a change of clothes with me everywhere I go because taking  2 plus Imodium doesn't help!  Have received negative results for Chron's, Addison's, Celiac and more so I  must be OK, right?  Have a new Doc who thinks it might be Inflammatory Bowel Disease.  Have to have an abdominal CT scan and more blood work.  Tired of taking pain pills but I'm also tired of being in pain.  If ANYONE has ideas, please help!

[TiredDesperate]

I too am going through this for the past 4 years I have been having episodes of bloating, runs, pain in left side, night sweats and feel so unwell.  I get these large boils in my groin everytime my stomach is bad, my eyes are deteriorating, my joints all hurt, my ears are hurting and I am struggling to keep working.  This episode has been the worst I have had for a year and I am really struggling to get through it.  Had colonoscopy/endoscopy last week get results on Wednesday which cant come quick enough.  Just getting through each day at the moment is so so hard.  Cant eat even drinking water makes me feel ill.  Am desperate for some answers am tired of being told its all normal aches and pains, nothing wrong with you.  Take antidepressants/valium god knows what else I have been given but its driving me insane.  What ever is going on is cruel and makes it harder not getting a doctor to find answers for me.  And doctors do not like to be told that you want certain tests done, its taken 3 years to insist on a Gastro referral from my GP and only got it because had blood in toilet.  Am hoping and praying (unlike me) that I get some answers wednesday or I will be devastated again.

[Sbgirl3836]

I have been having this knive cutting pain in the middle of my stomach right behind my belly button. I have had every test done possible. Colonoscopies, MRI, Cat Scans , Exploratory surgery, capsule endoscopy. Every test I have had done comes back normal. I had the blood work done for Crohns and it came back negative. In 2012 my doctor retested me and it came back positive for a Crohns. My doctor did not want to label me with this. He said the test results should not change. My primary doctor wanted to redo the  blood work and the lab would not accept it because they said I was already labeled with Chrons and it would not change. I just want to start on the medication to see if it will help. I have read symptoms and have a friend with it and our symptoms are alike.. Any suggestions for me? Do you think  I might have it? Pain is really bad after I eat. I had a salad today and didn't know what to do with myself cause of the pain. The only thing that helps is taking Oxycodone and using the heating pad. I am open for suggestions. Please help!
Sara

[Kemper9]

Diet stress and meds are the only way.  Look up foods not to eat with crohns and you will notice an improvement immediately.  Stress also plays a huge roll.  Took some time for my doctor to find the crohns at my ilium.  Found out that ibs was also there.  Taking azathoripine,  dicyclomine,  and roids for the crohns,  smoking cannabis for pain and stress-  no narcotics or opiates.  Good luck and realize you have to gain control of your body.  Don't give up!