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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

Moderator
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

Moderator
Staff member
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

Moderator
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 🎈🎈🎉🎉!
 

crohnsinct

Well-known member
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

Moderator
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.
 
Thought I would update here on H. We recently ran full labs (the twice yearly labs which include pretty much everything) and had her albumin come back slightly low, just under normal, and her fcal at 832. Still waiting on some of the other results.

She is asymptomatic right now. Growing well, gaining (maybe too much!), doing well in school.

He is talking about raising her Humira again to 80mg weekly.

I am trying to buy her 3 months then a retest.

We settled on retesting albumin next week and looking for improvement before deciding. My concern was a viral gastroenteritis she had a few weeks before tests which may have affected her results.

Still no sting free Humira in Canada. Can't imagine her having 2 shots per week.
 

crohnsinct

Well-known member
Darn! My girls have had slightly low albumin before with no issues but combined with a fecal cal that high IDK. True the gastroenteritis could have an effect on cal pro but any chance you can retest sooner than 3 months?
 

Maya142

Moderator
Staff member
Poor kiddo - 2 shots of burning Humira is not easy on a little kid. Her fcal is pretty high though. A re-test makes sense but unfortunately, I would start getting her ready for 2 shots per week.

Another option would be moving to Remicade but I know you live in a rural area and infusions aren't easy. Sometimes they will do loading doses in the hospital but the rest of the infusions (the maintenance doses) as home infusions. I don't know if that is an option in your area, but it might be worth looking at. However, given her age, they may want her to have it in the hospital. And honestly, when my kids were younger, they both preferred infusions to Humira - it burned a lot (as you know!) and with the infusions, it's just the IV that hurts and once it was in, they got to nap, watch TV, read etc. As they got older, they started to prefer injections because missing school for infusions became harder in high school and college.

If citrate free still isn't available, what about adding Lidocaine to Humira? It used to be done often for kids with JIA. It'll make the 2 shots a week a little easier.

And actually, I just remembered this, but I believe there is an 80 mg pen/prefilled syringe in the US. So maybe that's also available in Canada? Worth looking into - 1 shot per week beats 2! My daughter did Humira every 6 days but never every 3 days. She was ok with it but she was a teen, and understood it helped.
 
CIC I did my research and it looks like bacterial gastroenteritis will raise calpro but viral gastroenteritis does not. The paper I read was suggesting Calpro could be used to distinguish the two. Hers was definitely viral! It went through the whole house and I heard other people complaining of the same around town.

But it does look like her lower albumin could have been caused by the virus. Albumin is slower to rise.

Constipation could affect Calpro. GI says this all the time when referring to my son.
 
Maya, we did discuss other possibilities. Inflectra plus MTX, Stelara, and re-introducing MTX with Humira.

I think he allows infusions (after loading doses) to be done at local hospital at 100lbs +. She is 9 and very close to that, a big kid! But for us....it means waiting for an ER doc to have time to do it in ER. Now that would be miserable.

Ever since dropping MTX or at least in the weeks following...her headaches disappeared. So good to not have those. Also would be bummed to bring this back.

Her Humira levels are currently at 33. That is very high.

Not sure about any of it.
 

crohnsinct

Well-known member
Cal pro is still relatively new and they don't know everything about it yet. I had antibiotic induced diarrhea once. It was so bad I honestly wanted to die or thought I had c diff. They did stool testing on me and no c diff, no scary infections but my cal pro was very high (I don't remember the number but those were docs words). No bacteria there. So who knows. But honestly with H, her cal pro is a pretty good indicator of Crohn's activity so I am concerned. Pretty please with sugar on top, pull a test sooner than three months....I am impatient.
 
No antibodies. I don't think they test for antibodies? Someone can correct me there. Levels still higher than he's ever seen in practice but says they don't really understand Humira levels yet.

I could probably get a calpro sooner by circumventing him. Not in a bad way - just working through the gp maybe instead of GI. GI only does 2 per year, so he saves it. It's a Canada thing.

Maybe I will split the difference and try GP in 6 weeks.
 
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