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Irritable bowel syndrome in inflammatory bowel disease: Distinct, intertwined, or unhelpful? Views and experiences of patients

It's helpful to investigate an IBS overlay in IBD patients. Our son diagnosed with Crohn's had some unnecessary medication escalation due to what is now thought to have been IBS pain when Crohn's was well controlled. When we put him on a strict low-FODMAP diet his severe pain and severe constipation resolved and left us with mild Crohn's disease. Eventually we have been able to dial back his medication. Probably over medicated for 2-3 years.
 
It's helpful to investigate an IBS overlay in IBD patients. Our son diagnosed with Crohn's had some unnecessary medication escalation due to what is now thought to have been IBS pain when Crohn's was well controlled. When we put him on a strict low-FODMAP diet his severe pain and severe constipation resolved and left us with mild Crohn's disease. Eventually we have been able to dial back his medication. Probably over medicated for 2-3 years.
Wow! This is amazing to know! Thank you for sharing. Medication deescalation is the holy grail!!
 
It's helpful to investigate an IBS overlay in IBD patients. Our son diagnosed with Crohn's had some unnecessary medication escalation due to what is now thought to have been IBS pain when Crohn's was well controlled. When we put him on a strict low-FODMAP diet his severe pain and severe constipation resolved and left us with mild Crohn's disease. Eventually we have been able to dial back his medication. Probably over medicated for 2-3 years.
I was thinking about what you said... is it possible for IBS to cause inflammation which worsens the blood & CPR test results? Other than symptoms, did low-FODMAP diet improve the test results? I wonder if a IBS (no IBD) patient will see flags if under going the same tests for IBD patients.

cc @Scipio @Pangolin
 
IBS is not well understood at all. At least Crohn's has some characteristic objective changes, like terminal ileum ulceration. In contrast, IBS is what they call a broad class of digestive issues when they have no idea what's going on.

Since IBS is partially defined by a lack of inflammation, whatever is causing IBS shouldn't also cause inflammation. However, I wouldn't be surprised if it caused some susceptibility to inflammation down the line.

Of course, maybe some treatments or diets can improve both IBS and IBD, and maybe some patients have both simultaneously.
 

my little penguin

Moderator
Staff member
Ibs doesn’t not cause inflammation that shows up in bloodwork or fecal caloprotectin test or imaging (MRE) or scopes .
Ibs does cause symptoms but no damage to the intestine can been seen from it with current tests -
Still a black hole of questions for most with ibs - no ideas on why it exists or how to fix it

Ibd shows up on standard tests /pathology slides /imaging -and it does do damage to the tissue in the intestines
 
Our son had Crohn's diagnosed on scopes but it was mild/early disease. His crp levels were normal and his Calprotectin was only 250 range. But his pain levels were severe and his bowels weren't working right or responding to treatment. So the pain didn't correlate at all to disease markers.
Now...I will say we dropped to a normal Calprotectin (60 and 90 were our last 6 months values) after treating IBS with diet. That could mean that the IBS did cause some low level of inflammation or it could mean that the dietary changes also caused further healing of his Crohn's. Either way, life vastly improved for him.
 
Location
San Diego
I was thinking about what you said... is it possible for IBS to cause inflammation which worsens the blood & CPR test results? Other than symptoms, did low-FODMAP diet improve the test results? I wonder if a IBS (no IBD) patient will see flags if under going the same tests for IBD patients.

cc @Scipio @Pangolin
Nope. By definition IBS is a non-inflammatory condition, so it cannot contribute to the inflammation of IBD. But in the case of IBD with an IBS overlay the IBS can certainly contribute to the symptoms - mostly worsening diarrhea.

Note that the S in IBS stands for "syndrome." A syndrome, as opposed to a disease, is a collection of symptoms that occur together but that may or may not have a common underlying cause. Syndromes are not understood well enough to be called a disease. They may be a collection several different diseases that cause similar symptoms and thus are lumped together in a heterogenous group.
 
@Scipio This article entitled IBS and IBD- separate entities or on a spectrum? concludes "Low-grade intestinal inflammation plays a key role in the pathophysiology of IBS."

It is very difficult to know if GI issues are "IBS" when one's IBD is thought to be in remission. IF one goes on a FODMAP diet and the symptoms resolve, one can say it was IBS. If the CRP/ESR/calprotectin is high, one can say it's IBD. Otherwise it can be tough to know. I do suggest caution in accepting "IBS" as the cause of GI issues in people with IBD if there is weight loss or bleeding or other red flags or if there are abnormalities in the blood work (anemia, low protein etc), scopes or imaging.

Incidentally, my son presented with anemia, non bloody diarrhea and quite elevated CRP. I was pretty sure it was IBD. His pediatrician referred him to a GI who started to say it sounded like IBS. I had to ask him, "Why would he be anemic and have an elevated CRP if it was IBS?" That line of questioning led to scopes which showed Crohn's.
 
@Scipio This article entitled IBS and IBD- separate entities or on a spectrum? concludes "Low-grade intestinal inflammation plays a key role in the pathophysiology of IBS."

It is very difficult to know if GI issues are "IBS" when one's IBD is thought to be in remission. IF one goes on a FODMAP diet and the symptoms resolve, one can say it was IBS. If the CRP/ESR/calprotectin is high, one can say it's IBD. Otherwise it can be tough to know. I do suggest caution in accepting "IBS" as the cause of GI issues in people with IBD if there is weight loss or bleeding or other red flags or if there are abnormalities in the blood work (anemia, low protein etc), scopes or imaging.

Incidentally, my son presented with anemia, non bloody diarrhea and quite elevated CRP. I was pretty sure it was IBD. His pediatrician referred him to a GI who started to say it sounded like IBS. I had to ask him, "Why would he be anemic and have an elevated CRP if it was IBS?" That line of questioning led to scopes which showed Crohn's.
It's terrible that you had to point that out to a GI. That is frustrating-but a good reminder that it is very important for parents to educate themselves in order to advocate for their kids in the health care setting.
 
It's terrible that you had to point that out to a GI. That is frustrating-but a good reminder that it is very important for parents to educate themselves in order to advocate for their kids in the health care setting.
Agree that its terrible that the parents start to drive for treatment.

It takes a person who is new to these disease(s) months of reading to learn enough to see it for what it is and to be able to have a conversation with the doctors. But the doctors don't necessarily wish for patients and families to read up too much either. I get frowns when I start to ask follow-up questions. IBD is such an uncharted territory and everyone is learning. I think its the best if the docs can admit they don't know everything and ask the patients and families to join the care together.
 

my little penguin

Moderator
Staff member
Is a group of parents ,kids and doctors /nurses that share info in the US to improve ibd outcomes in kids
 
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