Anyone with Crohn's been diagnosed w irritable bowel syndrome

[fewdalord]

My doc is mystified. I have diarrhea and pain but bloowork doesn't indicate inflammation so he is thinking irritable bowel. I'm down given that what I've seen the only treatments seem to be for the symptoms and not the condition. Help me out. Colonoscopy scheduled

 

[withcrohns]

Depending on the criteria used, IBS diagnoses usually have specific inclusion criteria of symptoms but most importantly it has an exclusion that other diseases have been ruled out. So in general, patients don't get dx'd with IBS if they have an IBD dx, b/c the IBD excludes the diagnosis of IBS. With that being said, diagnoses are just groups of symptoms clustered together that were made up by humans to try to explain and categorize the complexity of the human body. So they can be somewhat arbitrary cutoffs at time and explains why diagnoses and criteria change over time for many disorders of the human body.

If you think about the enteric nervous system being overly stressed (from many possible causes including excessive inflammation, overexposure to infection/toxins, abnormal function/stimulation of endocrine stress axis, etc), then knowing the way neurons work, it makes sense that they could become hypo or hyper-sensitive to stimuli and this could lead to a dysregulated brain-gut connection. Healthy/"normal" (I don't know how one truly defines healthy bowel function) bowel function requires a tremendous amount of coordination with multiple systems to work properly.

With a dysfunctional brain-gut communication (the brain and gut communicate in both directions with each other via immune, endocrine and neuronal pathways) then it makes sense that one would have abnormal bowel function, experienced as symptoms, which would include constipation, diarrhea, bloating, discomfort, nausea etc. Some of the symptoms might be more severe and be associated with lab abnormalities, blood in stool, have diagnosable lesions on scopes/pathology, etc (so you get a dx of Crohns or UC) but this doesn't mean it isn't on a spectrum of bowel functioning. So, I think one can have IBD but a lot of the symptoms are due to a dysregulated enteric nervous system resulting in many "IBS symptoms." Chronic inflammation can cause long term changes to the neurons in the enteric nervous system, as well as the feedback between the brain and gut so one could still have abnormal gut function but have lab values that have normalized.

These are just my thoughts, I'm not a gastroenterologist. Not sure if that makes any sense or helps.

 

[cherub3808]

Hi, I don't really have any advice but I have been diagnosed with Irritable Bowel (Syndrome) Disease as of yesterday. I have Crohns as well and had a colonoscopy 2 weeks ago to see if it was the Crohns flaring or (IBS) IBD. From what the GI saw my crohns is fine still waiting for biopsies to come back. He believes that you can have both as I to didn't think you could either. His words were 20 % of people with Crohns suffer from (IBS) IBD. My symptoms are pain-copious amounts of mucous and constipation. Hope this helps.

 

[SammyD]

According to my GI you can have IBD and IBS together. After my diagnosis and straight after coming off of pred I was still having symptoms of a flare however all the test results were coming back clear. I've had another flare recently and again, as soon as I stopped the entocort it's come back again. He's running a barrage of more tests as I'm not having a full on obvious flare but I'm also not that well and in his words I "could be better."

In my case I definitely believe that the extremely long time it took to get a diagnosis (over 10 years) has led to a very sensitive gut. The chronic inflammation in my TI I personally believe has led to chronic pain and I'm not sure if that will ever go away. I wonder if my nerves have actually sustained some kind of damage. I have daily abdo pain which doesn't always seem to be correlated to having a flare. I find it extremely confusing because I never know if I am starting a flare or if its "just" IBS.

 

[Daddy119]

This thread is so timely. I too am experiencing the same - actually very similar to SammyD. I had my scope 6 months ago to check how Crohns is doing and all was clear. But intermittently, including now, I have pain and discomfort which my GI is attributing to IBS but how do you really know? The symptoms are very similar for me as I tend to not to have D but mostly C. My GI does think you can have both and believes I do. Frustrating though...makes me feel like even if I can quell Crohns, IBS will rear its ugly head. :yfrown:

 

[baistuff]

Depending on the criteria used, IBS diagnoses usually have specific inclusion criteria of symptoms but most importantly it has an exclusion that other diseases have been ruled out. So in general, patients don't get dx'd with IBS if they have an IBD dx, b/c the IBD excludes the diagnosis of IBS. With that being said, diagnoses are just groups of symptoms clustered together that were made up by humans to try to explain and categorize the complexity of the human body. So they can be somewhat arbitrary cutoffs at time and explains why diagnoses and criteria change over time for many disorders of the human body.

If you think about the enteric nervous system being overly stressed (from many possible causes including excessive inflammation, overexposure to infection/toxins, abnormal function/stimulation of endocrine stress axis, etc), then knowing the way neurons work, it makes sense that they could become hypo or hyper-sensitive to stimuli and this could lead to a dysregulated brain-gut connection. Healthy/"normal" (I don't know how one truly defines healthy bowel function) bowel function requires a tremendous amount of coordination with multiple systems to work properly.

With a dysfunctional brain-gut communication (the brain and gut communicate in both directions with each other via immune, endocrine and neuronal pathways) then it makes sense that one would have abnormal bowel function, experienced as symptoms, which would include constipation, diarrhea, bloating, discomfort, nausea etc. Some of the symptoms might be more severe and be associated with lab abnormalities, blood in stool, have diagnosable lesions on scopes/pathology, etc (so you get a dx of Crohns or UC) but this doesn't mean it isn't on a spectrum of bowel functioning. So, I think one can have IBD but a lot of the symptoms are due to a dysregulated enteric nervous system resulting in many "IBS symptoms." Chronic inflammation can cause long term changes to the neurons in the enteric nervous system, as well as the feedback between the brain and gut so one could still have abnormal gut function but have lab values that have normalized.

These are just my thoughts, I'm not a gastroenterologist. Not sure if that makes any sense or helps.

As another doc with crohns, I completely agree with all of the above. IBD patients, even in remission may not fit all of the Rome criteria, but IBD certainly causes dysregulation of the autonomic nervous system within the gut causing hypersensitivity to many stimuli. Heck, though feeling well recently watching the Rangers last week caused me some GI symptoms. That is in essence a form of IBS- a functional gut disorder even if not offically meeting the Rome Criteria definition.

MHO is that probably the vast majority of IBD patients have a degree if IBS as well.

 

[DEmberton]

I was told 18 years ago I had IBS, then last year found out it was Crohns. I could believe I actually have both as post-surgery I still get some of the mild symptoms I had all along (i.e. mild pain that goes away with a BM), but not the much more severe lower right pain, gurgling, swelling etc. that would flare up every now and again, and I now know is (or hopefully was) Crohns of the TI.

First time round I never had a colonoscopy, just a gastroscopy for some reason, so they didn't really check for IBD and perhaps I was just in remission at that time. As I never saw any blood I never went back to the doctor and just accepted the IBS diagnosis. It was only after losing a load of weight that I finally did and eventually found out the years of inflammation had caused a stricture.

 

[UnXmas]

IBS seems to be used as the diagnosis for any digestive symptoms as yet not diagnosed as anything else.

IBS and IBD seem to be considered unrelated by current conventional medicine (i.e. the NHS website I just looked at and the doctors who have spoken to me about it at various times). So then it seems like far too much of a coincidence that someone with IBD then gets IBS - a second unrelated digestive problem - as well.

But what I gathered from the above posts is the idea that IBD is IBS but more severe (and IBD may result in IBS?). But if that's true then it doesn't seem very useful to call that IBS, since it would surely be different to all the various non-IBD related types of IBS. Wouldn't it be more accurate to see it as another form of IBD symptoms?

But the other problem with this for me would be that some doctors use an IBS diagnosis to mean a patient's symptoms are not serious enough to be worth bothering about, and are the result of the patient's inability to adequately manage stress. Not all doctors - not any on this forum I'm sure - but I've had enough experience as a patient with digestive symptoms, heard enough from other patients I know and read enough of others' on this forum to know this happens often. In this respect it would be better to stop diagnosing IBS and call all those cases of digestive symptoms IBD instead, and get patients with what would otherwise be IBS taken more seriously.

 

[UnXmas]

My doc is mystified. I have diarrhea and pain but bloowork doesn't indicate inflammation so he is thinking irritable bowel. I'm down given that what I've seen the only treatments seem to be for the symptoms and not the condition. Help me out. Colonoscopy scheduled

Have you tried any anti-diarrhoea medications? Things like Imodium and Lomotil are only treating the symptoms, but helping symptoms is better than nothing if the colonoscopy doesn't show anything. And the same for the pain - have you tried any painkillers? There are a number of options you could ask your doctor about.

I hope the colonoscopy brings you some answers.

 

[24601]

First try not to worry too far ahead. It's possible to have active Crohn's that needs treating without having raised inflammatory markers in the blood. Obviously having active Crohn's isn't great but I understand that you'd be concerned about having another condition that doesn't necessarily come with a lot of answers. I think that a lot of us feel the same if we get diagnosed with IBS on top of Crohn's.

The colonoscopy may show inflammation which would likely mean adjusting your treatment. Have you had a fecal calprotectin test too? And have you ever had any inflammation in parts of your bowel not accessible with a colonoscopy? Because obviously a colonoscopy is only part of the picture and depending on your history and any earlier imaging or if you haven't had an upper endoscopy or MRI before then those tests may be sensible too.

Regardless of whether you call it IBS I think people with Crohn's can certainly have functional gut issues and so perhaps IBS treatments can also help. And there are treatments that have quite a lot of benefit for those with IBS so try not to feel too down about that possibility.

I hope you get some answers from the testing and start to feel better soon. Let us know how you go.

 

[scot865]

Crohns will mystify everyone at some point. I actually have both cd/uc and Mine has dodged every single normal diagnosis ways. I can and have had insane flare ups as in hemoraging ulcers and tissue just pouring out, and yet all my blood work remains perfect. I do not get fevers anymore. I went septic once and only showed signs of a moderately high but not extreme wbc. As much as we all would love to pretend we understand what this illness does and how it does it. We really dont have a clue.

Oh but on the topic, yes i was dg with ibs once or twice. It really jsut depends on the do making the dg