IBD ? - from suspect to diagnosis

My dear patients !

In the last episode I started with the first aspects on the therapy of IBD right away (with emphasis on “started” and “first aspects”). But before that: how do we actually establish the diagnosis of inflammatory bowel disease (IBD) ? The diagnosis of Crohn`s disease and ulcerative colitis ? How do we know, that it is that particular diagnosis and nothing else ? What are we looking for ?

In this episode I will try to explain the first steps in establishing the diagnosis of inflammatory bowel disease.

And even though I always try to take the patients perspective, this time I will write also from a doctor`s point of view. I do that in order to give you an idea of what difficulties we (…means doctos and patients. Our dilemma is your`s, We all do know that) sometimes face while trying to etsablish the diagnosis of IBD.

Difficulties that can be solved though, even if it takes some time.

So what are the first hints that you might have an inflammatory bowel disease, Crohn`s disease or ulcerative colitis ?

Actually .. which one anyhow ? Crohn`s disease ? Ulcerative colitis ? How can you tell the difference ? Even on this blog they have so far mostly been mentioned in one breath.

I imagine that some of you might have started years ago with one diagnosis – either Crohn`s disease or ulcerative colitis. And that at one point the diagnosis changed. That isn`t rare at all.

Actually – just last week: the women came to my consultation hour for the first time 2 weeks ago, really not doing well. I read through her medical history, read all the reports: […] ulcerative colitis,… ulcerative colitis first diagnosed in … […],  course of desease…[…] ulcerative colitis therapy […]. For years !

As I mentoined she was not doing well at all, so we terminated an appointment for endoscopy and even before the examination really started, during the examination: fistulas in the perianal region. That was maybe not an  ulcerative colitis. Ulcerative colitis does actually not lead to fistulas. Fistulas are typical or even “pathognomonic” (which means typical for a certain disease) for Crohn`s disease. So – her diagnosis changed within a minute on a Tuesday morning.

But let`s go back to what we are looking for when we are trying to establish the diagnosis.

The symptoms...

It all starts with symptoms. With abdominal pain, cramps, with diarrhea, sometimes blood in the stool. Diarrhea is still known as the classic symptom of IBD. Bloody diarrhea is considered as an indicator for ulcerative colitis rather than Crohn`s disease. And talking about symptoms: are there any symptoms that are typical for IBD ? Maybe even for ulcerative colitis or Crohn`s disease. And do these two illnesses actually make different symptoms ?

To be quite honest – only from the symptoms you can not tell the diagnosis at all. The so called “typical symptoms” abdominal cramps, pain, diarrhea might occur in case of Crohn`disease or ulcerative colitis in a very insonsistant way. And they occur in other diseases.

Even the chronical aspect – let`s say symptoms for more than 8 weeks – does not proove anything at all. As a mater of fact especially Crohn`s disease – but ulcerative colitis as well – can appear with uncharacteristic symptoms.

Don`t get me wrong. There are many cases with typical symptoms: young patients in their 20s or 30s with diarrhea 20 times a  day, sometimes bloody, for months, fever, beeing admitted to hospital in very poor condition at one point – diagnosis is kind of clear then.

For example...

But I know  some patients who really describe the exact symptoms one would expect on IBD: abdominal cramps, abdominal pain, diarrhea. We do all the diagnostics – and the result is: none. They turn out to have a irritable bowel syndrom (IBS).

But even if diagnostics lead to the result of : inflammation in the gut. When you are almost sure you do have a patient with IBD in front of you, it can turn out quite differently.

I remember a young man: abdominal pain for months in changing intensitiy, episodes of diarrhea in irregular terms, for years, all in all not very often. Then the symptoms were increasing in intensitiy  in one week. It changed to daily diarrhea with abdominal cramps, sometimes blood in the stool, patient feeling very sick and ill, having slight temperature. He finally was admitted to the hospital, the blood values showed heavy signs of inflammation, endoskopy showing inflammation in the bowel  …

I was working on a ward for internal medicine and gastroenterology then. And I was so sure, this patient had an IBD.

I remember sitting there, about to write down the instruction to give this patient intravenous steroids. Looking once again at the blood values, the result of the stool tests: Calprotectin (marker of inflammation in the stool)  in it`s thousands. Almost all the bacterial diagnostic from the stool negative !  Almost – results for salmonella dignostics pending (well … ok. Surely would turn out to be negative as well …)

Ultrasound with inflammatory thickened bowel wall. And before my inner eye the impressive pictures of heavy inflammation in the endoskopy.

Everything matched, the only thing missing was appropriate therapy, and that was what I wanted to complete right away…

Who saved the patient (from wrong and even harmfull therapy !) was the nurse from the ward : Doctor Weyrauch, these results of the stool samples from Mr XY just arrived today  – Salmonella in the stool : positive !

It was clearly not an IBD but a salmonella colitis/ enteritis. On top of a longer lasting IBS. And I could have sworn, I had an IBD patient in front of me.

This little episode to give you an idea of how situation in a case of suspected IBD might be.

Or the other way around...

And another thing I would like to share (and than I will stop giving you these confusing examples):

I see patients with diagnosed IBD in my consultation hour, diagnosis of Crohn`s disease or ulcerative colitis is already well established. Patients with not one episode of diarrhea in his or her whole life. Never had diarrhea, having IBD. Doing well under therapy for a longer time, they might at one point call me and say : Dr Weyrauch, I recognize more gas in my bowel, slightly increasing pain. I think my disease is more active than it should be. And mostly they are right.

(And writing that – it always shows to me : you as a patient , living with the disease for years, you can estimate what is going on in your body very well. You can tell wether things are alright … or not.)

Why am I writing and describing these cases in such an epical way ?

To give you an idea that the symptoms of IBD are about everything but not specific. You can not establish the diagnosis on symptoms.

And how about laboratory results ? From the blood and from the stool. Are there any special parameters that establish the diagnosis of IBD? You might already have guessed it – the answer is: no.

In generall: the more inflammation the more irregularities you see in the laboratory findings. But at the same time: I know patients who have a very severe inflammation just on the last centimeters of the large bowel. Very hard to treat, they do receive systemic medication. Blood values are almost normal, even though they need strong treatment.

And from the young patient in the hospital, I mentioned above, I learned years ago once and for all : always look for  infection and exclude an infection caused by bacteria or virus before you establish the diagnosis of IBD.

There is a parameter called “Calprotectin” in the stool. That with a very high percentage is elevated in IBD. And in general : the higher the elevation the more severe the acitivity of the disease. But again also this parameter is unspecific. It is elevated in IBD as well as in case of any infection of the gut. Even after you took tissue specimen while performing endoskopy – after that the level will rise. Yet for diagnostics and in the duration of the disease the Calprotectin is a very valuable parameter to get an idea of disease activity. I am pretty sure some of you already heard about it and know it. I am thinking about having a whole episode about it here on I.M. INFORMATION MATTERS, because it is so important. 

So also for laboratory findings : very important to do them but none of them will proove IBD or even give you an idea wether you have a patient with Crohn`s disease or with ulcerative colitis in front of you. Same as symptoms:  important to recognize but not sufficient to establish the diagnosis.

Reading through all this you might get the impression that it might be as reliable as throwing a dice doing all the diagnostics. We should get to a point where we gain more security, don´t we ?

So what`s it that helps us doctors and our patients establishing the dianosis of IBD once and for all ?


Some of you might think: this Dr Weyrauch, she`s a gastroenterologist, isn`t she ? An endoskopist. So it will al come down to performing endoskopy.

Let me put it that way: in case you want to establish the diagnosis of inflammatory bowel disease IBD or even more precise  Crohn`s disease or ulcerative colitis you should definetly have an idea of what the large intestine and the parts of the small intestine you can reach in endoskopy look like, where the inflammation is located. You should also have an idea of the mikroskopic aspect – the pathologist, whom we send the tissue specimen we collect to, will help us with that.


There is another method I would like to mention here : ultrasound. Of course you can also perform ultrasound. And that´s a method I also like to perform very much and I actually do it with almost any patient. It does give you a lot of information like : where is the inflammation located ?  Is it more the right lower abdomen where the small intestine merges into the large intestine, the colon ? (that would fit to Crohns disease) Or is it exactly opposite on the left lower part of the abdomen, maybe more affecting the distal parts of the large intestine so that we can  suspect  ulcerative colitis (UC) ?

It is possible to get usefull information on ultrasound, but you still will have to perform endoskopy. In case you perform endoskopie right away you do not necessarily need to add ultrasound to establish the diagnosis.


And there is another diagnostic procedure, that is performed when we suspect involvement of the small bowel : “MRI according to Sellink”. It is mostly performed while supecting Crohn`s disease. I want to mention it but not write about it in each detail today, because it is a very special diagnostic proceedure.  I promise to write about it in another episode at some point.


But let´s go back to endoskopy. Performing endoskopy enables you to asses the mucosa of the large intestine and parts of the small intestine. You can tell whether there are deep ulcers or just small superficial damages. And you can see where the sites of inflammation are – even better than in ultrasound. You can tell whether just a short segment  is affected or a longer segment of the bowel. All these pieces of information are important and relevant for the decision : can we suspect IBD or not and does what we see in endoskopy either fit Crohn`s disease or ulcerative colitis

For example and I mentioned that above – when we see inflammation which shows at the distant parts of the large bowel and continuously proceeds to the more upper parts of the bowel, we would suspect ulcerative colitis. In case we see inflammed mucosa directly adjanced to healthy musoca  or when we find a situation where just the very distal part of the small intestine is affected we suspect Crohn`s desease.

When you decide wether to suspect IBD it is really about where inflammation is located, thats a very important aspect in establishing the diagnosis. And when you have been performing endoskopy for a while, you recognize certain aspects. Especially in ulcerative colitis the endoskopic aspect is quite characteristic.


Getting longer and longer this episode, doesn`t it ?


What is still missing are the tissue samples. Tissue samples, sometimes you talk about “histology” or “histological results”, the results from the pathologist, it all means the same. Tissue samples we collect while performing endoskopy, the pathologist looks at under the mikroskope.

You can not get closer to any disease in the human body than looking at the affected tissue under the mikroscope, right ?


And again, also when looking directly at the affected tissue we do not get a quick and easy answer. Sometimes you receive a report from the pathologist, sounding like : the alterations in the mucosa might fit to IBD, inflammatory bowel disease. Might fit. You won´t get any pathologist in the world closer to diagnose IBD than: might fit.  At least in the beginning of the disease, when diagnostic is performed for the first time.

Very often you can read something in the report like (and I am kind of translating now) : “well, yes … there is inflammation in the gut. That is true. And I see an acute inflammation (means inflammation happening right now). I also see some cells that might fit to a not-acute inflammation. But I would not consider that chronic.”

And do you know what it says in about 80% in the report – again especially at the beginning, when diagnostic is performed for the first time: fits bacterial infection  which is already improving and healing.


So what should we do now ? With all this “unspecific”, “doesn`t proove anything”, “might”…?

Impossible to establish a diagnosis ?


Now we as doctors are the ones who are challenged to bring it all together. To  evaluate what you were telling us about your symptoms, which is so important and bring it together with laboratory findings  in the blood sample and in the stool , to consider the endoskopical result and the results of the pathologist and then get to an conclusion. And either decide that it is absolutly reasonable that there is the diagnosis of IBD, Crohn`s disease or ulcerative colitis. And tell our patients so. Or tell them… that we still do not know wether there is IBD or not. And tell them what the next steps are, what we need to think about. Wether we need to repeat some examinations or wether we need to perform further diagnostics.


As comlicated as it might sound here. Usually we as doctors have reasonable arguments wether we suspect IBD or not and usually it is not as if we acutally do not know, just guessing and hoping we are on the right path.


The situation is getting easier as soon as after 2 to 3 weeks (sometimes longer)  of therapy symptoms improve. I see the patient for a short consultation and everything is fine, we all can relaxe a little bit.


But getting to that point, there is a lot to consider and think about as you can read here.


So I hope this might help you to understand what was or is going on behind the scenes during the first days of diagnostic procedures.


Take care !


Dr. Susanne Weyrauch


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