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Results of scopes are confusing me, could use some insight/ideas.

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Ulcerative Colitis
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Posted 10/12/2016 4:46 AM (GMT 0)
Hi there! First time poster on this particular forum. I'm sorry if this isn't the correct place for this, in context it seemed the most appropriate.

I had a colonoscopy and endoscopy on Monday to assess history of bleeding, diarrhea, (sometimes severe) pain, fatigue etc. My doctor at that time was pretty sure it was either UC/Crohn's or Celiac.

Everything in the OR went well, don't remember a thing. Got wheeled into a private room to discuss the results of the tests. They're unusual and I can't for the life of me figure out what this might be.

What the tests found were dozens of ulcers lining my large intestine. My doctor circled 9 on his papers, and pointed out at least 15 more. They were everywhere. The kicker is: no inflammation. He's completely stumped. When I asked him about his thought on UC/Crohn's before, all he could say was "It isn't either of those. It might have been Celiac but your bloodwork came back negative for that". He took a few biopsies but I probably won't hear about those results for a while.

He was so certain it was probably IBD of some sort before this. Has anyone had something like this happen, or know what might be going on? When I told him the bleeding was indeed getting worse, along with the pain, he seemed pretty concerned. I waited so long for the scopes (~2-3 months), just to be left with more questions than answers. How can he be so sure it isn't IBD? I've tried doing my own research and I can't find a reason for /just/ ulcers in my large intestine, and definitely not as many as I have.

EDIT: A little more information. Started off having increased gas and some abdominal pain around 6 years ago. Quickly spiraled into a LOT of back pain, near constant diarrhea, bloody stools, fatigue. Now, currently dealing with periods of constipation followed by periods of (sometimes) bloody diarrhea. No history of smoking, alcohol, or NSAID use. Blood and stool tests were negative for any infections or parasites.

Thank you for any insight and help you may be able to provide.

Post Edited (Nimzee) : 10/11/2016 11:15:07 PM (GMT-6)

Posted 10/12/2016 8:18 AM (GMT 0)
I'm confused. Multiple ulcers but "no inflammation?" What does he mean by "inflammation?" Can you get an actual copy of your colonoscopy report (they may have given you a copy when you were discharged)? Ulcers, in a sense, ARE inflammation. I'm not sure I understand the doctor's distinction. I'm also not sure why the doctor feels it's not IBD when there were multiple ulcers. It's not necessarily IBD, but it most certainly could be.

The biopsies will tell you more, but in the meantime see what the colonoscopy report actually says.
Posted 10/12/2016 11:16 AM (GMT 0)
Welcome to the forum. We'd need more details from your colonoscopy report and biopsy report to really tell you more.
Posted 10/12/2016 1:16 PM (GMT 0)
Blood test is not a reliable for celiac, false negatives are common. Hope he took more than "a few" biopsies because that will be the real celiac test.

You could start going gluten-free now to see if your symptoms get better but be aware that once you go GF all celiac tests will not be reliable because you have to be eating gluten for the tests to pick up the allergy.

My gut began healing after I removed wheat/gluten even though my blood test said I am not celiac. I believe that is true, I'm not true celiac but am sensitive to wheat/gluten and I never had the biopsy during c-scope. I just know how my gut acts after wheat and other grains.
Posted 10/12/2016 2:02 PM (GMT 0)
Similar to brace, I am also confused as an ulcer is a disease process stemming from inflammation. It is the inflammation that causes the damage to your colon which results in an ulcer. Think of a skin ulcer, you can't develop that without inflammation, you can't have one without the other. Could you have maybe misunderstood? I think the wording of the actual results may help shed some light on things.
Posted 10/12/2016 3:59 PM (GMT 0)
Hi everyone,

I called him today to get more details about my scopes, because it wasn't making much sense to me either.

He said the exact same things as when i was sitting in recovery.

During the colonoscopy he found multiple ulcers, but didnt see any inflammation. He took several biopsies but they came back normal (new information).

He currently thinks its an infection (which also is confusing, I've been on a couple of different stronger antibiotics over the last 6 years since this has started for various things and never saw a difference in these issues), coupled with IBS.

I know im not misunderstanding, he pointed them all out and said "theres an ulcer, theres an ulcer, theres an ulcer too"

I havent gotten the physical, on paper colonoscopy results but ive gotten pictures, if thats what you all mean.
Posted 10/12/2016 5:01 PM (GMT 0)
I would ask how ulcer is different form inflammation in his terminology. Possibly he is using ulcer to refer to a more general type of lesion or damaged area. Possibly the red vascular pattern to accompanies inflammation is missing.

He does need to help you understand better. Also ask if the ulcers appear active or more like scar tissue.

good luck
Posted 10/12/2016 7:19 PM (GMT 0)
Your case is unusual for those of us with an IBD diagnosis like Ulcerative colitis or Crohn's. So, odds are that you don't have those diseases as they involve inflammation (part of the defining factor of Inflammatory Bowel Diseases).

Strictly speaking, an ulcer is a bleeding site that doesn't necessarily include inflammation (it often can though). It's possible you have an infection, a parasite, or something else that's going on in your large intestine that's causing these ulcers. If you haven't already, it's a good idea to have a stool test done for various possible infectious and parasite causes to what was seen. Even if you have had such a test done, you might want a broader panel of tests done to look for more possible causes. As it's quite possible that you could have come into contact with a bacteria, virus, or microscopic organism that's causing it.

The good news is you don't have a chronic, lifelong autoimmune disorder like we do with IBD. Rather, it's treat once and done. Once they find and treat the cause, you're likely to never have to worry about it again.

We're quite a curious bunch here, so please come back and tell us what it was and how it was treated. You've certainly stumped us.

Good luck!
Posted 10/12/2016 8:48 PM (GMT 0)

imagardener2 said...
Blood test is not a reliable for celiac, false negatives are common. Hope he took more than "a few" biopsies because that will be the real celiac test.

You could start going gluten-free now to see if your symptoms get better but be aware that once you go GF all celiac tests will not be reliable because you have to be eating gluten for the tests to pick up the allergy.

My gut began healing after I removed wheat/gluten even though my blood test said I am not celiac. I believe that is true, I'm not true celiac but am sensitive to wheat/gluten and I never had the biopsy during c-scope. I just know how my gut acts after wheat and other grains.

Actually the blood test for celiac is quite reliable, with sensitivity and specificity both above 95%.

https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/

Also, you are right that the gold standard remains biopsy, but it's biopsy of the duodenum during an upper endoscopy, not a biopsy of the colon.
Posted 10/12/2016 8:52 PM (GMT 0)
Still doesn't make sense. As WorriedUCer pointed out, ulcers are a result of inflammation (to be non-scientific). And if there were ulcers, the biopsies must have shown *something.* You can't have an ulcer and have the biopsy there not show anything - that makes no sense. There has to be histologic changes for an ulcer to appear.
Posted 10/12/2016 8:53 PM (GMT 0)
And the presence of scattered ulcers is a finding in Crohn's colitis sometimes, so IBD still can't be ruled out.
Posted 10/12/2016 10:50 PM (GMT 0)
Hi again! So, a few hours after I spoke with my GI, his nurse called me and let me know that he wanted me scheduled for the closest appointment he can get me, which is the 18th. (He's one of two gastroenterologists in this network of doctors, crazy busy)

Whether it be to discuss the results in person or to follow up I'm not sure.

I picked up two prescriptions from him, one is an antibiotic to /maybe/ treat whatever he thinks is causing the ulcers. I took some advice from you all and made up a list of pretty indepth questions to ask him when I go in on Tuesday.

I did have an in depth para/ova and bacteria/etc panel done, iPoop (username is silly btw, love it), and it all came back negative.

I have noticed that my symptoms kind of go in phases. At any given time I'm either: in insane amounts of pain, constant diarrhea with mucus and sometimes blood, and sensitive to all foods, or the pain isnt as bad and theyre closer to a 5 and sometimes 6 on the stool chart, with undigested foods in it all the time. I'm currently in the "not as grueling" phase, so I wonder if that had anything to do with my unusual case?
Posted 10/12/2016 11:07 PM (GMT 0)
I'm not your doctor, so I can't tell you what to do. But if it were me, I wouldn't take the antibiotic without evidence of an infection, ie, a positive stool culture. Some antibiotics can make UC or Crohn's better temporarily, but some antibiotics can cause a flareup/exacerbation of IBD. So it's a bit risky to take an antibiotic, especially when you don't even know whether you have an infection or what specific infection you have assuming you have one.

What is the 2nd prescription he gave you?

Where are you located? Is this doctor experienced at all in diagnosing/treating IBD?
Posted 10/13/2016 1:26 AM (GMT 0)
I'm in Central Florida, and weirdly enough he gave me a presciption that is supposed to be used for treating high cholesterol, and (rarely) diarrhea. The pill is called Colestid.

I did a bit of research on him before going, all the websites ~say~ he treats those conditions, but I dunno how true third party websites are.
Posted 10/13/2016 2:59 AM (GMT 0)
bile-acid binders like Colestid are used when the patient has bile-acid diarrhea. Bile is secreted by the gall bladder and released into the beginning of the small intestine where it aids digestion. Then, at the end of the small intestine, it gets re-absorbed. If there is a problem with the end of the small intestine (inflammation there, or it's missing altogether after surgery), then the bile doesn't get re-absorbed properly and instead continues on to the colon. When that happens, it can irritate the colon and cause diarrhea.

Many Crohn's patients who have had their terminal ileum (end of small intestine) surgically removed take bile-acid binders to help reduce diarrhea.
Posted 10/13/2016 11:47 AM (GMT 0)
Not only that but infection causes inflammation so the reasoning behind all this is weird. You cannot have an infection without inflammation.
Posted 10/13/2016 5:03 PM (GMT 0)
Thanks everyone for your help. I've written up a list of stuff to ask him, with your guys' help, when my appointment on the 18th rolls around.

What i dont understand is that, I've had these symptoms for a LONG time. Many years. If it was a bacterial infection, wouldnt it have just destroyed my insides by now? Like an ear infection, if you just ignore it, it doesnt go away. It gets worse. And you're left with hearing damage... You would think something (kinda) similar would happen in this case?
Posted 10/13/2016 5:49 PM (GMT 0)
Hi

So I find this all very interesting and it is raising a few questions myself as I am waiting for an official diagnosis. First set of biopsies came back normal from colonoscopy which showed 15cm of inflammation but no ulcers.
Still waiting for biopsie results from second scope but inflammation was only 5-10cm with a few small ulcers.
My question is can you have inflammation and ulcers and it not be UC? As from this post apparently you can have ulcers but not inflammation which is not Ibd.
It is just all so complicated and as I've heard many times, no one is text book patient.
Posted 10/14/2016 1:41 PM (GMT 0)
Hi Nimzee, not always unfortunately, sometimes you can have a persistent infection. For example, they've shown that uti-causing e.coli can persist in bladder cells for years to cause recurrent utis. Similarly people can have parasite infections for years without being adequately treated. A lot of people actually believe that's what UC is, a persistent untreated bacterial infection (myself included)
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