113 Recommendations from the ACG for the management of Crohn's disease

[crohnsinct]

Good read and resource for all your questions! Pretty much "everything you wanted to know about Crohn's disease management"

https://www.nature.com/articles/ajg...w3QNs3hvKGzVQvzq3hiJMymGIEg-_TFV_HcTqTaFq4DY=

 

[crohnsinct]

Table 1 #46: I think I have heard that somewhere before (said with my best sarcastic voice)

 

[Pilgrim]

Nice to have the info all in one package.

 

[Maya142]

Crohn’s disease, in most cases, is a chronic, progressive, destructive disease (Summary Statement).

Hard to see it written down...

 

[Maya142]

But some of these are really promising!

The 10-year cumulative risk of major abdominal surgery in Crohn’s disease is 40% to 55%, although recent studies performed in the biologic era suggest that the 10-year risk may have decreased to 30%. The 10-year risk of a second resection after the fi rst is 35%, although again more recent studies suggest that this may have dropped to closer to 30%.

 

[my little penguin]

Big issue
It’s for ADULTS
Management of Crohns
Kiddo management is different

 

[crohnsinct]

Thanks MLP! Ya know it has been that way for years but I have been following the adult GI world for awhile now and really they have come a long way and are really pretty similar to the ped GI world. I know they used to not treat as aggressively but now they are also moving to top down biologic use as well trying to arrest disease as quickly as possible with the understanding that it lessens the risk of surgery down the road. They are also meeting with patients more frequently and monitoring disease more proactively. I am seeing that their big obstacle and difference in treating adult patients is there is a big issue with noncompliance and denial of treatment recommendations. Interesting and this is why I am still going to GI appointments with O! Even the biologic dosing schedules are becoming more flexible with the discovery of drug monitoring etc.

Sure the kids have other issues to keep our eyes on such as growth and development and number of years with disease, severity etc but as time goes on I am finding the difference in management is becoming smaller and smaller.

Also, many of the studies that are presented at the ped conferences were with adults. Just interesting. I guess the ped population is smaller?

I haven't read through all the recommendations so it will be interesting to see where the differences lie. Especially since I have a pet and adult patient under my roof Well, at least she thinks she is an adult!

 

[Maya142]

There are actually some mentions of pediatric Crohn's/IBD if you read carefully. But of course, the main article is about adults.

Thought it was very interesting they only list CRP among the recommendations as an inflammatory marker, and not ESR. They discuss it later:

Serum C-reactive protein (CRP) is an acute-phase reactant produced by the liver that goes up with inflammation seen in a subset of patients with CD. It has a short half-life of 19 hours. Because of its short half-life, serum concentrations decrease quickly, making CRP a useful marker to detect and monitor inflammation (see later section) ( 34,35 ). Erythrocyte sedimentation rate is also a nonspecific measure of inflammation that may be elevated in patients with Crohn’s disease. Erythrocyte sedimentation rate may be useful in an individual patient but does not discriminate IBD patients from those with irritable bowel syndrome or healthy controls ( 36 ). Up to 40% of IBD patients with mild inflammation may have a normal CRP and erythrocyte sedimentation rate that may limit the usefulness of these markers in monitoring some patients ( 37 ).

40% don't have an elevated ESR or CRP (when there is mild inflammation)! I thought that was very interesting.

Our GI does not use ESR at all anymore. Just CRP.

 

[my little penguin]

If up to 40% the markers are Useless
Then why must every paper and study make it seem like it’s a important marker for more than 90%
40% is close to half the people with Crohns

 

[crohnsinct]

Yeah Maya...our GI and many of the adult GI's that I follow would look at CRP before sed rate because it is quick acting and more likely to be accurate but overwhelmingly they are all going to fecal calprotectin...as a matter of fact I think one of the recommendations for people with ongoing symptoms is to test for c. diff and fecal cal.

 

[crohnsinct]

yeah mlp...I get annoyed when they use CRP in studies....I think FCP has a way to go to make it into studies as the goal but you know more about how they structure those than I do. One GI actually did a whole presentation on the antiquated goals in studies and how they have to change.

 

[Maya142]

In AS, it is 40% too. It always shocks me that the number is so high and yet doctors are very surprised when your child has normal markers :ybatty:.

 

[Carolina*]

Hard to see it written down...

Yes, that got me right out of the gates too.

 

[pdx]

Thanks so much for posting this, CIC. I think there's a lot there that also applies to pediatric Crohn's. I was surprised that there wasn't even a mention of EEN or any kind of diet.

 

[crohnsinct]

Right PDX!

6 years ago I had to bring up EEN and ask the GI to let usury it. 3 years later when T was dx'd he brought it up but IDK if it was because our family was familiar with it or if that is now part of his standard care.

Interestingly enough, I was just having a conversation with someone. yesterday about the use of EEN in the adult GI world. I am seeing it mentioned quite often and as a matter of fact for World IBD Day one of the orgs of docs is organizing an EEN day and asking all GI's, nurses, dietician etc in solidarity with their patients to do a day of EEN. So we know they are aware of it and use it so why was it not mentioned? Maybe because the focus is the ongoing management of disease and EEN is more used to induce remission? Stabbing in the dark here.

I imagine if they have trouble getting their patients to take their Humira shots on time or even show up for their infusions then EEN must be a real hurdle.

 

[Maya142]

When we saw an adult GI at Mount Sinai, she said there was no one who could even put in a G tube there! They had no surgeon or interventional radiologist who could do it. The odd part was that the doctor we saw sees both kids and adults and is well known in the pediatric world.
Based on that, I figured they expect adult patients to drink formula or they do not suggest EEN. It was not brought up at during our appt. as a treatment for M’s IBD, despite the fact that we were talking about formula and tubes because of M’s gastroparesis and low weight.

 

[Maya142]

As for compliance, I think that’s only a big issue with young adults who are just learning to take charge of their own healthcare. Though now that I’m thinking about it, my husband is MUCH less compliant than my two young adults!!

 

[crohnsinct]

There is a doc in Michigan who said that close to 80% of his patients have been noncompliant with meds at some point or another:ywow::ywow: He is the doc who did the study that showed even a 4 day delay in Humira dosing could cause a problem.

I can sort of believe it because I am terrible at remembering to take meds and my diabetic husband is bad with med, testing and diet compliance. But how do you blow off infusion appointments?

I can see me hounding my girls for the rest of their lives! :nonono:

 

[Maya142]

Yikes! 80%!!

I guess that is where Crohn's is different from arthritis - my girls will never ever miss a shot because if they do, they feel it immediately in their joints. Avoiding pain is excellent motivation to stay compliant .

My younger one manages about 20 medications by herself. She has three pillboxes, and carries two make-up bags with emergency meds with her at all times. She has a color-coded spreadsheet to make sure she takes them all in college. It has worked very well for her.

It is possible for them to be compliant, they just have to want to be!!

Now my husband is a different story - he periodically stops his medications when he feels the pills are "too big" :ybatty:.

 

[my little penguin]

Pillboxie
It’s an app for their phone
Ds uses it
Loves it
He does the meds
It creates med lists for docs
Visual pill box
Alarm for all pills

 

[Maya142]

Oh yes, my daughter uses that too, in addition to her excel spreadsheet. It is a great app!!