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?

[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.

[gabmink]

I'm actually have a lot of confusion about the diagnosis of crohns. I see all the time misdiagnosis, a lazy diagnosis of IBS. I am currently in the ring here with crohns, I had a colonoscopy today which showed no signs of Crohn's disease. They took some cultures for testing, so regardless how it looks, it could be positive for crohns. The other part of the conversation was if it shows nothing abnormal, then I'm going for an MRI of my small intestine, because it is more than possible for it to be located there. But then he uttered the dumb words "if there;s nothing in your MRI, then it may be cramping from IBS." I am so sick I can't go to work, I am in SO much pain I have been in bed for weeks, this is not IBS. I'm at a complete loss, really don't even know what to do next.

[Kemper9]

Try dicyclomine for the ibs-  gluten and diary free diet- no red meat or pop.

[SD0467]

Hi, I've been suffering with stomach/bowel problems on and off for about 6-7 years but over Christmas 2015 everything suddenly became a lot worse. I was in total agony for days and felt like I was going to die. It improved (in time for me to go to the doctor) but then turned really bad again a few days later. This time though I'd been booked in for blood tests so they were able to see that a lot of inflammation was happening inside my body (inflammation score of 84). My doctor then sent me off for X-rays and did her darnedest to get me into a gastroentorologist as early as possible (two months later!). After finally seeing the gastro she then booked me in for a colonoscopy and gastroscopy, as well as a CT scan. It's now another 2 months later and I've 'finally' had the tests done. I see my gastroentorologist next week.
What was really upsetting though was that the doctor (who did the colonoscopy and gastroscopy) talked to me after the procedures and said that he hadn't seen anything other than diverticulosis and said that that wouldn't be causing me pain etc.
During all of this waiting I've been in constant pain, had constant diarrhoea/constipation, nausea, bloating, dizziness, exhaustion, sore itchy eyes and even boils! I also have sharp pain under my right ribs that has been there since Jan 2015.
Anyway, now I'm really worried that I'm going to be told that there's nothing wrong with me when there so obviously is something going on! I've had to quit my job and I barely leave the house any more! I need to get this sorted out. :(

[Kemper9]

Hi been through the same thing several times before finally seeing a doctor that had the ability to go through my entire digestive system.  Finally found ulcers and crohns at my terminal Ilium.  I responded well to azathoripine and dicyclonine with steroids when needed.  Balance is maintained somewhat now with the meds- right food-and no stress!  The food and stress are big factors in maintaining low flare up rates.  Been in remission now for 1 year.  Good luck!

[steph4528]

I have the exact same problem I just had a endoscopy and colonoscopy done which came back normal I have a anal fissure I have been having this problem for bout 12 years and they are still doing tests but I haven't gotten blood work done that's my next thing to do cause only you truly know your body and when something isn't right.

[cynthiawan]

The core of the problem is autoimmune, our immune keep atacking our body causes Ulcerative colitis or Crohn. I got UC.
Before my immune attacked knees joint, ankylosing spondilitis. I went to doctor but seems helpless because they kept trying to heal my joint. The problem is the auto immune. It happened 10 years ago. Until I found mangosteen skin juice named xamthone (indonesia is my country) it helped a lot to control my immune and my joint healed by itself.
I back to normal life and skip drinking xamthone mangosteen skin juice.
3 months ago I got hemorrhoid and fistula, hurt so bad! I went to doctor and he heal me with 9 injection everyweek to my hemorrhoid and fistula, but he found there are put in my colon and giving me antibiotics levaquin for 7 days if pus isnt gone yet he asked me to do endoscopy.
Im so afraid what happened to me since I felt better after my hemorrhoid cure. Then I start search the internet and found that I got ulcerative colitis caused by auto immune.
I start to drink that mangosteen juice anymore and feel better.
Autoimmune causes UC, UC causes hemorrhoid and fistula
Before
Autoimmune causes joint disease ankilosing spondilitis
So we need to control our immune and mangosteen skin juice help me (God showed me)
I searched a lot and found that cabbage also helped.
Control the autoimmune first!
Go chek the diseases that caused by autoimmune.

Hope it helps,
Indonesia

[lfdmaster]

I am 38 years old.  I have been having symptoms of Crohn's for 4 months.  I was send to do a fructan intolerance test. I came positive to fructan intolerance.Then the doctor order some blood test IgA Ref (38.9) IgG (55.0) possible crohn's disease. Then he order a video capsule endoscopy  with a finding of significant mid- and distal small bowel lymphoid hyperplasia. Then he order a ct scan with results possible non-specific ileitis (demonstrate a thickened loop of the distal ileum which is nonspecific finding ) now he order a colonoscopy with ileoscopy to due a biopsy. He wrote that he whats to rule out lymphoproliferative process... I am supper worry. I cannot sleep... what is going on? Should I be supper worry? Can some one explain what all this means? Thanks for the help.

[Niklee327]

I think you need to find a new GI doctor. It's not ok to blow off a patient. Find one who actually cares about your health and well-being. And insist on a camera endoscopy. It's the only thing that can show what is really going on in your small intestine. I just had it done yesterday and am waiting on the results. I'm fairly certain my doctor thinks I have Crohn's even though most of my tests and biopsies have come back negative. I, too, show all the symptoms (diarrhea, abdominal pain, mouth ulcers, joint and muscle pain, red swollen eyes, exhaustion...), but they haven't given me a definitive diagnosis or a treatment plan. This has been a 3 month process of every test imaginable. In the meantime, I have picked up a few books on the disease to help me get on a Crohn's diet plan to help with the flare ups (half.com has many options for less money). Maybe this will help you too? Hopefully in another week I'll have my answers. Good luck to you friend!

[Ray8888]

I have been having symptoms of Crohn's for 3 months and last year I had two other episodes with these same symptoms lasting 1-2 months. IBD blood work is positive for Crohn's. CT scan and colonoscopy are negative, but endoscopy shows inflammation. The doctor decided it was more likely it was just IBS, but I don't think I could be this sick for this long just from IBS. Any thoughts?

[stylish69]

I have been going thru all of this for over 10 yrs. I have had multiple colonoscopys and endoscopys and ct scans mri exploratory surgery where I had 4ft of my small intestines removed. I have severe abdominal pain all the time and cramps and blood in my stools and diarrhea and then times of constipation. I have severe bloating  and my eyes get watery and blurry at times. I have been hospitalized for diverticulitis in the past for gastritis they have done all kinds of stool test and blood test all negative for crohn's and all the biopsies have been negative, they did one expensive blood genetic test and if was inconclusive but indicated some kind of inflammatory bowel disease. Have been referred to another specialist and fixing to have a gastric emptying test and mri entergraphy and HBT test and another colonoscopy and endoscopy and hoping that they would just find something that would come back positive so that they would treat me for crohn and stop telling me it is just ibs , i know my body and it is more than just ibs and i have never been more sicker or hurt as much as i do now.

[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!  

[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.

[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!

[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!

[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.
                                              

[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?

[CrohnieToo]

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

[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.

[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.  

[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  

[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.

[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....:

[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?

[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

[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.