IBD with negative biopsies

[CazMc]

Hi,

Does anyone have any experience of IBD being diagnosed with negative biopsy results? They found some imflammation but it didn't show on biopsy results. I think I have an IBD, as does my GP as symptoms match what I am going through but scared my specialist whom I see on the 21st will just dismiss it.

Thanks
Caz x

 

[art_nj]

Caz,

I recently underwent a sigmoidoscopy and then a colonoscopy. I had the sig done first (a biopsy was taken to rule out a parasite). I had to wait 6 weeks before having the colonoscopy done. My doc wanted to see if the ulcer that he found during the sig would heal or go away. In any case, I underwent the colonoscopy 6 weeks later and that ulcer was still there plus he found several more ulcers in other areas. He took more biopsies during the colonoscopy and all of my biopsies came back as "non-specific", meaning that I didn't have a parasite. I also had various bloodwork taken. My asca test showed I had the markers for Crohns. I also had a CT scan done and a small bowel series done. In the end, I was diagonosed with Crohn's Colitis (my small intestine is fine, the problem is in my large intestine).

Not sure if this helps, but that was my experience.

Art

 

[CazMc]

Thank you,every little bit helps! I read that sometimes things show in biopsies and other times they don't but I am just so scared of taking several steps backwards after going through so much with a zillion tests:confused2:

Caz x

 

[soupdragon69]

Hey Caz,

My biopsies and scopes have been normal the last 2 times (May this year and July 07).

My gastro cons thinks however that I have macroscopic inflammation but he cant prove it because I have always been on steroids each time the scope is done and that reduces inflammation!

I deteriorate gut wise 10-14 days pre remicade infusion (given every 6wks). I am currently in "flare" but am only getting answers now to prove it and its coming from blood test results today that say I am Vit D deficient NOT biopsy results...

Also when first going through the tests for IBD my upper GI scope biopsies where like Art's as "non-specific" and my colonoscopy showed Crohns. My ulceration has completely healed to the naked eye in that area now and I was very frustrated because I felt so c**p but couldnt prove it was my Crohns until today again!

If your GI dismisses you go see your GP who should happily refer you for a second opinion. If the GI is worth their salt they should look at the overall picture though and be able to figure out what is going on with you Caz.

Hang in there honey. Let us know how you get on.

Thinking of you.. ((hugs))

 

[Isla]

I have had nothing but negative results for ALL biopsies. My colonoscopy showed no inflammation, no ulcers - perfect in every way. My pill camera was the same as well as my upper endoscopy. However; I took the pANCA ASCA test and was shown positive for Crohns. I started taking Asacol (even though my doctor did not think I had IBD in the least) and after 3 months my symptoms abated - thus proving the IBD diagnosis.

Don't be afraid to fight for treatment.

 

[fenway1971]

For what it's worth, my story is just like Art's. Negative biopsies but have tested positive for Crohn's Colitis (microgranulomas and some marker that suggests Crohns over UC). Took camera study on Monday and awaiting results.

 

[CazMc]

It's probably my own fault for being a bit naive in thinking I would get a diagnosis straight away when everything I have read kind of goes against that! My GP is really good though I know she will help me get the answers and I will definitely be fighting for treatment when I see them on the 21st. They were sure it was an IBD so hopefully they will understand

Thank so much for the replies, it helps put my mind at rest
Caz x

 

[art_nj]

Caz,

I'm not sure if a biopsy would diagnose Crohn's specifically. Again, my doctor kept wondering if I caught a parasite. When the biopsy came back as "non-specific" that's when he basically said "okay, it's not a parasite so it's definitly IBD". The next step was to determine if it was UC, Crohn's, etc. Upon doing the colonoscopy, he discovered that my ulcers were scattered and looked like Crohn's. Between the scattered nature and look of the ulcers, the ASCA marker test, and the symptoms I was having, everything pointed to Crohn's. My GI started me on Lialda (4 tablets per day) to reduce the inflammation but then told me that it wouldn't be enough. He's added a 6-MP to the Lialda and knock wood, the combination has made a significant difference.

I understand your concern about being sent home with no medicine and worse, no answers. That happened to me 6 years ago. This time, I had a heart to heart with my GI before they put me under to do the colonoscopy. I made him promise that he would help me. So far, he's lived up to his promise.

 

[teeny5]

I have the opposite. My colonoscopy showed Crohn's but I don't have the markers.

 

[Colt]

I had pretty much the same colonoscopy when I was 16. I'm 24 now and getting my 2nd in 7 hours. In the mean time I have been extremely sick and had my life rather badly ruined by the disease. My crohn's wasn't the stereotypical type back then. Just inflammation and pain with some bleeding. 8 years later I've slowly shifted more and more until I now have pretty standard constipation-style crohn's disease. Tomorrow I find out if that's stricturing crohn's disease. Morale of the story: crohn's disease develops over time for a lot of people and negatives now do not mean negatives later.

 

[CazMc]

Thank you Colt, you kind of summed up what I have been thinking. Surely this is an illness that develops over time and I feel I have it in the early stages. Some of you have awful times with it and I feel bad for moaning about what is happening to me:yrolleyes: Good luck with your colonoscopy though.

Lastnight I had more weird lumps appear on my arm. I have had lots of them over the last few weeks after never having spots or anything....I am putting this down to whatever is wrong with me.

Still two weeks will I see my specialist and I will know more!

Caz x