Biopsy came back negative for Crohn's

[KristinaEli]

Since I was very young (around eight or so) I've had bouts of horrible stomach pain accompanied with nausea. I was constantly in and out of the hospital, from G.I. doctor to G.I. doctor. My family always suspected it was Crohn's as it runs in my family and I have all of the symptoms but my doctors always brushed off my symptoms and refused to send me for a colonoscopy.

Here I am at 17. I developed an extremely resistant case of Iritis in my right eye and after months of tests and trying to figure out the cause I'm right back at the G.I. doctors. I had a colonoscopy about a week ago and my doctor found extensive scarring in my intestines. The first thing he said to my mother after the procedure (I was still asleep from the anesthesia) was that it's Crohn's. He took a biopsy to confirm it and he's been waiting on the results to start me on Remicade. The results came back today and it was negative for Crohn's. The nurse who called to tell us the results said that my doctor will probably want me to do the pillcam but we won't know until tomorrow as he was in surgery all day today.

I'm about at my wits end. For the past month I've been having horrible abdominal pain, diarrhea at the most random (and inconvenient) times, nausea, headaches, fevers, just over all feeling unwell. I was so relieved to be diagnosed finally, and looking forward to starting the Remicade and feeling better. It just seems like I've taken a giant step back in recovering. I've heard that Crohn's is difficult to diagnose but I never thought it would be this frustrating. Have any of you ever gotten back a negative biopsy or anything else that's set your diagnosis back? How long did it take for you to finally be diagnosed, and what all did the doctor do to diagnose you? Any responses are really appreciated.

 

[AmandaNG]

I was not aware that a biopsy can determine whether or not you have Crohn's. Whenever I have a colonoscopy, they do biopsies to check for inflammation, which can tell you whether or not the disease is currently active. But my understanding is you can have Crohn's and scarring but still have the biopsy come back negative for inflammation. I was diagnosed at 17, and the gastroenterologist who did my colonoscopy told my mom that I had Crohn's right after the procedure, before the biopsy came back.

 

[tots]

I am sorry for the trouble you are having with getting diagnosed! I have had symptoms from the time I was very young, then at 28 I was diagnosed with Crohns after a small bowel series showed a stricture in the illium. Ten years later I moved to Texas my new Dr said nope you dont have anything wrong. I have been sick on and off for ten years and my family Dr helped alot. Now- I was in the hosp for 8 days- WBC- Hematocrit and hemoglobin and symtoms and small bowel series point to Crohns. Colonoscopy and Bx show nothing. I am- as I did before 20 years ago am responding to medication including steroids. Long story short- I have no idea why this seems to be a disease in which we are forever "proving" to our drs what it is. It is my understanding IBS does not include bleeing- WBC count with cells showing inflamation. I can only say Crohns can be serious and "get away" from you quickly. No matter how young you are listen to your body and push until you are heard! I know it can be very disheartining but- hang in there! Being female I wonder if men have as much trouble getting diagnosed- are they taken more seriously..... BTW- I have been told ALL your test can be negative for Crohns and you can still have it.

 

[DustyKat]

Hey Kristina,

My son was diagnosed very quickly with Crohn's and I have no doubt it was due to his sister's legacy, she was undiagnosed for 18 months and came close to dying but for emergency surgery.

My son's GI diagnosed him on the spot following a colonoscopy, he had a couple of ulcers and inflammation. A CT Enterogram the following day showed the extent of the disease. Now the thing is...the pathology from that Colonscopy didn't show any evidence of Crohn's. A few months later when he had an ileal resection the pathology from that also stated he had no convincing of Crohn's Disease. Matt certainly does have Crohn's but I think unless a pathologist can tick all the boxes, including the presence of granulomas, they will not commit to the evidence being that of Crohn's. Of course the problem is not everyone will tick all the boxes.

In our case the GI and the surgeon only took that part of the conclusion for what it was, a pathologist not wanting to label someone with Crohn's. They were both adamant that from what they had seen he did indeed have Crohn's.

Dusty. xxx

 

[Ang]

The biopsy won't diagnose the CD, get a second opinion rather. Chances are if it runs in the family then you can't go wrong with autoimmunity! Hope you get answers soon there is nothing worse than not knowing!

 

[KristinaEli]

Thank you to everyone who replied! You really gave me some piece of mind while I waited for my GI to call back. I'm going in on the 20th to do the pillcam so he can see the extent of my scarring. GI is sure it's Crohn's though. He just wants to know the extent of the Crohn's. He placed me on Asacol 6x daily until the procedure, although I can't see myself staying on them for long. Only two days on the meds and I already feel so drained. I slept for a good 3-4 hours after getting home and woke up with the worst sore muscles. But it's treatment and progress. I'm just so glad that something is happening!

 

[DustyKat]

If you have disease in your small bowel, which I assume you do due to the fact that you are having pill cam, You most likely have malabsorption as well. If you haven't already done so, have bloods drawn for B12, Iron Stores, Folate and Vitamin D. The reason for your fatigue may be due to deficiencies in one or more of these coupled with your general ill health.

I hope you are able to get solid answers and appropriate treatment very soon! Good luck!

Dusty. xxx

 

[archie]

Hi I agree with all of the above and as Amanda said the biopsies confirm if the crohns is active or not. I have crohns it was concluded After a string of tests that all pointed in that direction ie stricture seen with small bowel series, CT, bloods and eventually it was 100% confirmed after surgery. Since surgery I have since had another colonoscopy which showed ulcers but biopsy showed no active crohns therefore long story short you can have crohns but it's not always active with biopsy. Hope this is of some help and good luck for the pillcam

 

[niloy]

Is it true? I have been facing trouble with diarreha for almost a year. My GI doctor did Colonoscopy and found few ulcers in Termianl Ileum. He told me to wait for the biopsy result, Biopsy result came back negative and he told me I don't have Crohn! I was happy. My symptoms got bettered , but for 1-2 weeks I have normal stools and then again the symptoms appears. Again the symptoms disappear within 2-3 days! Do I have Crohn?

 

[Nataliec88]

I am so sorry to hear this. Although I am in the same situation. For 8 years I have been struggling to GI problems. I have had 2 colonoscopy's, IBD blood test, done baruim swollows, lower gi studies. You name it I have most likely done it. I have always on and off abdominal pain, but was told it was just IBS. About a month ago it I couldnt take it, the pain was the worst it has ever been, so I went to the ER. I also was vomiting, having diarrhea and a fever. After a CT scan they found my Ilieum was infalammed and to follow up with my GI. After seeing my GI, he said in addition to all my former symtoms and with the inflammed Ilieum, he think it is now Crohn's( he said it was the definition of it). So thats why I went through the swollow, IBD test and lower GI study. They all cam back negative. Just over the weekend I the pain came back, I was vomiting had a fever again and also had diarrhea. Both myself and my family agrees with me that this is more then just IBS. But since the test have come back negative, my doctor has just brushed it all off. I am fed up and I have had enough. I have lost so much weight( down to barley 100 Ibs) and can sometimes barley make it through the work days. I work at a Childrens hospital which is #1 in the nation for GI, I am going to call and ask who they ref their adult GI patients to. I am just ready to move on and finally figure this all out.

I hope things get better for you, as it seems like we are kind of in the same boat.

 

[phear]

I would seriously just keep changing doctor's untill you get some answers. Its very frustrating but keep strong and eventually u will find a doc who cares enough to help you!

 

[JMC]

I had several negative biopsies over a 4 year period from 2001 to 2005. Unfortunately it does not mean that you do not have Crohns as I was then diagnosed in August 2005. I had a resection in 2012 and the histopathology report said the bits that were removed clearly showed Crohns.