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"Oh...so that's where you ended up." My intro to duodenal Crohn's

So we got H's biopsy report and now the Crohn's has ended up in the duodenum. New to us.
Her TI is healed and the colon and stomach look good this time (colon shows chronic but not active disease).
There is shortening of the villi in the duodenum, and inflammation but not ulcers.
She has been tested negative many times for Celiac, so does Crohn's shorten villi?
She is now on Humira monotherapy, 40 mg weekly (has been for a long while) but he added shakes 3×day.
Anyone deal with duodenal Crohn's?
 
Sorry--no experience with Crohn's in the duodenum, but I'm glad to hear that everything else looked good. Has she been having Crohn's symptoms?
 

my little penguin

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Staff member
Ds has shorten villi in the duodenum at dx and inflammation no ulcers
No celiac
Took a while eventually calmed down
Multiple scopes showed duodenitis a few years in a row
But he ended up with mild gastroparesis from the duodenum not working properly .
That seems to have gotten a lot better recently and last scope looked good there just not in TI
 
Pdx - no symptoms. I really did hope we were looking at remission.

GI had even tossed around possibility of reducing Humira but....not going to happen.

MLP it seems like the small intestine Crohn's is a shape shifter. I will keep watch for possible gasroparesis complications.
 

Tesscorm

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S had inflammation in the duodenum when he was diagnosed. But I can't offer any advice or experience. At dx and after, none of his symptoms were ever attributed to his duodenum specifically and it was never brought up again. It just resolved when other areas cleared.
 

Maya142

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Staff member
M had inflammation in her duodenum at one scope, but never after that. She also ended up with fairly severe Gastroparesis, but in her case, her GI does not think it related to Crohn's at all, since her duodenum has always been fine on other scopes.

Inflammation in the stomach or duodenum can mimic Gastroparesis and cause delayed gastric emptying but if it's caused solely by inflammation then it should go away once the inflammation is controlled. So if she starts complaining of nausea after eating or being full after a few bites, don't panic. It doesn't necessarily mean she will have delayed gastric emptying forever. Liquids are easier to tolerate with delayed gastric emptying and duodenal inflammation, so shakes make should help make sure she is at least getting enough calories.

Other symptoms to watch for - severe nausea, bloating, vomiting, reflux, weight loss, stomach pain.

Given that she still has chronic colonic inflammation and new inflammation in her small bowel, I agree with you -- I definitely would not reduce Humira! You have worked so hard to get her to this point - why mess with it?! I'm surprised her GI even suggested it.

I'm glad that scopes didn't look too bad though - that's exciting 🎈🎈🎉🎉!
 
T has duodenal disease but she has ALL small bowel disease. Her colon looked pristine. We don't treat the duodenal disease specifically. WE just treat her Crohn's. Her hallmark symptoms are nausea and pain when in a flare.

They found a duodenal ulcer with one of O's scopes. Couldn't tell you the status now as her last scope was just colon. I never saw the girls' biopsy reports from the old hospital so not sure if any mention of villi was on there.

So glad that her problem areas are calm now. Hopefully the duodenum falls line soon!
 
She seems to be having quite obvious abdominal bloating. Does anyone have advice that may help? I was thinking of scaling way back on breads, and adding more soups, rice crackers, things that are more low residue. But I actually don't really know if that's best.
She doesn't usually get even those 3 shakes down (prefers food) but we are working on that.
 
No MRE recently. I will pay attention to if she seems to be getting full quickly and look for delayed emptying or not.

Did you give ds Miralax with gastroparesis? She is going daily but with my kids the first thing I check for is constipation. Don't know if it works well if there is a delayed emptying prob.
 

my little penguin

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Staff member
Miralax daily for ds plus erythromycin (EES granules liquid ) 15-20 minutes prior to eating
This allows him to feel hungry
Otherwise he isn’t very hungry
 
Thanks. Interesting about the erythromycin. I had to look up why, but found that it's used for reflux as well as a myriad bacterial infections.

Does he have SIBO from the slow emptying? Does the GI test for that?
 

my little penguin

Moderator
Staff member
Erythromycin causes the stomach /duodenum to contract so it helps empty the gut
It’s given at subtherapeutic levels - so not fighting any infection
Just moving the gut
Commonly used for gastroparesis to promote stomach emptying

no sibo
 

Maya142

Moderator
Staff member
She seems to be having quite obvious abdominal bloating. Does anyone have advice that may help? I was thinking of scaling way back on breads, and adding more soups, rice crackers, things that are more low residue. But I actually don't really know if that's best.
She doesn't usually get even those 3 shakes down (prefers food) but we are working on that.
Could certainly be due to delayed emptying, caused by inflammation in her stomach/duodenum. My daughter has moderate-severe gastroparesis, and bloating was one of her symptoms too, with severe nausea. She also got full very quickly and that led to a LOT of weight loss. Typically patients with GP struggle with eating high fiber and high fat foods. So many of the things considered good for Crohn's - lots of fiber, whole foods, healthy fats etc. can be very hard to tolerate with Gastroparesis.

For the bloating, I'd avoid high fiber food - all the good stuff you're supposed to eat, such as whole grains, lots of veggies, nuts, were all off-limits for my daughter for years. She's finally now able to tolerate some fiber, and is thrilled to be eating salad again!!

But for many years, the only veggies she got were in soup form or very well cooked - things like creamed spinach or tomato soup, for example. Nothing raw. We avoided veggies that cause gas, such as beans, since they make bloating worse.

And she also avoided fried, high fat foods. We switched from butter to olive oil since she seemed to tolerate olive oil better. In terms of meats, red meat is hard to digest. She still can't eat that (except ham). She could eat chicken, fish and turkey though, and other kinds of seafood (shrimp).

Liquids are typically easier to tolerate than solids, so for several years, she was on 60% formula and 40% food. Because she was on so much formula, I didn't worry too much about her not getting the right nutrients since she definitely wasn't getting enough servings of fruits or vegetables in a day. Now that she is off formula, I worry a lot more!

She does also have slow motility everywhere - including her colon. So has always been on Miralax.

M struggled with drinking shakes due to her GP - the issue was that she could only tolerate so much formula/food. So if she drank more than 2 shakes, then she'd eat much less at dinner. Some kids with Gastroparesis can tolerate liquids with no issues, because their stomachs empty liquids normally. But others, like M, have delayed emptying even of liquids. Which is why we had to go to a tube - the feeds were done at night, and she ate in the day. That was the only way we could get her to gain weight.
 
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