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Nodular ileo-cecal valve?

First off...don't be alarmed if at some point I delete this thread. Sometimes I reveal more than I want to on the net and sometimes I get a little too obsessed with checking and I need to get my helpful info/feedback from you all and then force myself to get back to life. Deleting helped me do that. This board is a gold-mine of info and I appreciate your willingness to help.

Looking at my notes I think the reason the Ped GI won't give up on Crohn's yet, is not just the antibody tests, terminal ileum erythema and symptoms not well explained by his Barrett's Esophagus. He also mentioned the ileo-cecal valve and I see from the photos it is listed as "nodular." Is that common with Crohn's? He did biopsies, but I do think it's interesting he mumbled not just about mild Crohns and Crohns in the part of the small intestine the scopes can't catch but pre-clinical Crohn's, which I know is not a formally accepted thing and it's not like you would go on meds for pre-crohn's.

After the scopes, he mentioned seeing a lot of nodes around and it sounded like he thought they were good and created to fight infection. I was going on no sleep so not sure if I heard right and my husband didn't take notes. Looking at the colon, the splenic flexure lymphoid also had nodules, but he expressed no concern. There was also lots of swelling at the lower third of esophagus, but that was already identified by pathologist as BE.

I am also wondering if even the special MRI will be enough. Is it common to want a pill cam after that? Does the MRI capture ever inch of small intestine?
 

crohnsinct

Well-known member
The MRI sees every inch and sees all the layers of the bowel. It measures thickness, sees vascular changes and everything. The pill cam is just a camera that you swallow. It tumbled and turns through the system and takes pictures of whatever it sees. It can miss a lot. Further, if you have delayed gastric emptying, which given the gerd and BE, your son might have, the pill cam could get hung up and travel too slowly to even get pictures of the entire length of the bowel. It’s not super common for a GI to order a pill cam after an MRI Enterography but some do. If the MRE rules out IBD and confirms blood labs, calpro and scope findings, I would think you could skip pill came.

Have you asked the GI about testing for delaying gastric emptying?
 
Not a sign of crohns
Found in healthy children
Benign

Thank you. I am going to read this right now. Any idea how often Crohn's is found just in the part of the small intestine the scopes don't catch? We will do the procedure regardless, because if it's there we need to know and treat it. I assume the fact he said we can wait until June means it is not that likely, but it must happen sometimes for this procedure to be needed. So basically I am answering my own question. I just haven't seen anything about it online.
 
The MRI sees every inch and sees all the layers of the bowel. It measures thickness, sees vascular changes and everything. The pill cam is just a camera that you swallow. It tumbled and turns through the system and takes pictures of whatever it sees. It can miss a lot. Further, if you have delayed gastric emptying, which given the gerd and BE, your son might have, the pill cam could get hung up and travel too slowly to even get pictures of the entire length of the bowel. It’s not super common for a GI to order a pill cam after an MRI Enterography but some do. If the MRE rules out IBD and confirms blood labs, calpro and scope findings, I would think you could skip pill came.

Have you asked the GI about testing for delaying gastric emptying?
Thanks for the response. I have asked him about motility issues, but not delayed gastric emptying. I will ask. I actually mentioned to him that our son has to poop after every meal and usually during breakfast as well. (Sorry if TMI), but it's usually a large quantity and type 4 or 3 on Bristow scale. He does 2-3 large BMs total over the course of and end of breakfast. I assume that doesn't rule out delayed emptying because it would be stool created long before the meal. I am still shocked he was considered mildly constipated based on Xrays because he poops so much in a good quantity and quality.
 

crohnsinct

Well-known member
Wanted to add that the nodules further support the GI’s suspicion that there was some infection going in back when. I still can’t believe he never pulled stool studies to test for infection. That is always the first thing any GI we go to does. Even every time. O presents to an ER or her own GI with increased flare and known raging Crohn’s they always run the full battery of infection tests. They even isolate her and garb up in C. Diff protection until the results come back negative.

As far as how often do they find small bowel Crohn’s where scopes can’t reach, It isn’t the majority of cases that are located there but it can happen.
 

my little penguin

Moderator
Staff member
The fact your child’s biopsy during scopes was normal
Your child’s fecal cal was normal
Recent Bloodwork normal
Odds of crohns in just the small bowel is extremely small
The MRE would rule out crohns for good

Nodules and BE are not signs of crohns

they should have tested stool for infection as first steps
They always test for infection
 

crohnsinct

Well-known member
Yes, if GI is willing to wait till June to get the MRE, he isn’t that worried about Crohn’s. No GI would leave inflammation to fester untreated that long if the really thought that they would find disease. This sounds like a tick the box so we could move on thing.
 
Wanted to add that the nodules further support the GI’s suspicion that there was some infection going in back when. I still can’t believe he never pulled stool studies to test for infection. That is always the first thing any GI we go to does. Even every time. O presents to an ER or her own GI with increased flare and known raging Crohn’s they always run the full battery of infection tests. They even isolate her and garb up in C. Diff protection until the results come back negative.

As far as how often do they find small bowel Crohn’s where scopes can’t reach, It isn’t the majority of cases that are located there but it can happen.
He actually did test for infections with stools and couldn't find any. He had forgotten to add H Pylori for stool testing (probably because I kept talking while I was filling out the form and then i realized I should let him concentrate). He did test for H Pylori once in there. With stool testing there were a bunch including C Diff and he did parasite testing too. All of it was negative.

The strange thing is he used to get so many GI infections/stomach bugs as a kid (up until maybe age 6 or 7) before I added probiotics. After that (or maybe because he developed better immunity from the infections) he rarely got them.
 

crohnsinct

Well-known member
Can you have the MRE moved up? Just to get it over with and put your mind at ease and so you could move on with dx’ing and helping your son? He is 17 right? Is he going to college in the fall or more high school left? I ask because if going away to college, I would want testing sooner so you could either figure out treatment or figure out what else is going on. Even if he “just” has IBS, that is a bear to figure out and a lot of trial and error with regards to diet and such. A lot of docs don’t pay attention to IBS and fluff it off but it is a real thing and can be very debilitating. You will need a good RD for help with that and likely a larger university type practice.
 
Can you have the MRE moved up? Just to get it over with and put your mind at ease and so you could move on with dx’ing and helping your son? He is 17 right? Is he going to college in the fall or more high school left? I ask because if going away to college, I would want testing sooner so you could either figure out treatment or figure out what else is going on. Even if he “just” has IBS, that is a bear to figure out and a lot of trial and error with regards to diet and such. A lot of docs don’t pay attention to IBS and fluff it off but it is a real thing and can be very debilitating. You will need a good RD for help with that and likely a larger university type practice.

He is turning 16 soon. Because he has HFA (high functioning autism) we gave him the "gift of time" in pre-K so he is just a freshman in highschool now. He is still catching up from the time he missed for hospitalization, scopes and dizziness he had for close to a week post scopes. He also missed most of the day for the follow up doctor's appointment because we needed to leave early in case of traffic and had to get an xray after the appointment. I think the Dr would be fine doing the MRE sooner, but our son wants his normalcy and so do we. Plus his highschool is insane with the number of tests, projects, etc. and he likes to stay on top of it. If he does turn out to have Crohn's we will get a 504 in addition to his IEP. If he were going off to college, I would absolutely speed things up. Over the summer, if some of the more concerning symptoms are not gone, we will likely make a trip to a place like CHOP or Boston Children's. I am also going to see what Kennedy Krieger has.
 

Maya142

Moderator
Staff member
I can think of only one case on this forum where the kiddo had disease that was caught by pillcam but scopes were normal (and I've been here 9 years - @crohnsinct and @my little penguin have been here for longer). I personally know another child who has juvenile arthritis and was recently diagnosed with Crohn's in the small bowel, again caught by pillcam. But both kids had significant weight loss, abdominal pain and I think both had high fecal calprotectin. It can happen but it's definitely not common.

I also think exploring motility issues is a good idea. My daughter has delayed gastric emptying/Gastroparesis. In her case, it's idiopathic - we don't know what caused it. She also has slow motility in her colon and tends to be constipated unless her Crohn's is flaring (then she has diarrhea). If your son does have Gastroparesis, there are motility medications that can help. Reflux is extremely common with it and she's on a PPI and Pepcid daily. They do a test where they have you eat a meal with a radioactive tracer mixed in (usually eggs or oatmeal) and then they take images over 4 hours to see how quickly your stomach empties. If more than 10% of the meal is left after 4 hours, then you have Gastroparesis.

If you have Gastroparesis and attempt to do a pillcam, it tends to sit in the stomach for a long time and doesn't give you good images of the small bowel. We didn't know my daughter had Gastroparesis when we did the pillcam, so it literally sat in her stomach for 4 hours or more. So now if she ever needs another pillcam, they would place it in her duodenum while she has an endoscopy, bypassing the stomach.

Honestly, I would get a second opinion, like you are planning to. I would definitely go to a big Children's hospital like CHOP or Boston Children's that has GIs experienced with IBD, with motility issues, with IBS, with BE etc.
 
I can think of only one case on this forum where the kiddo had disease that was caught by pillcam but scopes were normal (and I've been here 9 years - @crohnsinct and @my little penguin have been here for longer). I personally know another child who has juvenile arthritis and was recently diagnosed with Crohn's in the small bowel, again caught by pillcam. But both kids had significant weight loss, abdominal pain and I think both had high fecal calprotectin. It can happen but it's definitely not common.

I also think exploring motility issues is a good idea. My daughter has delayed gastric emptying/Gastroparesis. In her case, it's idiopathic - we don't know what caused it. She also has slow motility in her colon and tends to be constipated unless her Crohn's is flaring (then she has diarrhea). If your son does have Gastroparesis, there are motility medications that can help. Reflux is extremely common with it and she's on a PPI and Pepcid daily. They do a test where they have you eat a meal with a radioactive tracer mixed in (usually eggs or oatmeal) and then they take images over 4 hours to see how quickly your stomach empties. If more than 10% of the meal is left after 4 hours, then you have Gastroparesis.

If you have Gastroparesis and attempt to do a pillcam, it tends to sit in the stomach for a long time and doesn't give you good images of the small bowel. We didn't know my daughter had Gastroparesis when we did the pillcam, so it literally sat in her stomach for 4 hours or more. So now if she ever needs another pillcam, they would place it in her duodenum while she has an endoscopy, bypassing the stomach.

Honestly, I would get a second opinion, like you are planning to. I would definitely go to a big Children's hospital like CHOP or Boston Children's that has GIs experienced with IBD, with motility issues, with IBS, with BE etc.
Thanks, this is helpful. He rarely has pain and calprotectin is fine (though consistently at least 25 points higher than last year), but he has trouble gaining at the rate he should and he still hasn't gained back the weight he lost from being so sick from the prep and then being placed on a special diet at the hospital post procedure. I know though, when you talk about weightloss it's a lot of weight. It's just like with the blood. (Sorry if TMI) In his case it's occasional and just some in the BM and once non-visible detected in fecal occult, not filling up the toilet water. Fissures and hemorrhoids have been ruled out by more than one doctor (GI and colorectal).

I did not know reflux is extremely common with gastroparesis. The radioactive tracer test sounds like something he would be totally fine with and curious about. He is always happy to eat eggs or oatmeal.

I assume it's OK to let the Dr. know you plan to go to CHOP or whatever place to the motility clinic? He trained at CHOP so I'm actually hoping he might have a connection/recommendation there. I know he has connections at Boston Children's because another parent said when they moved away from Boston their ped GI specialist there told them to see our Dr. I think he would be supportive since he no longer works for a big hospital system. (The one he worked for is good, but not at the level of the other 2).
 

crohnsinct

Well-known member
He should be fine with it. Most docs are. Our Ped GI actually helped us get in to a guru who was not accepting new patients. And he helped us get an unofficial opinion from another guru with just emailing back and forth so we didn't even have to pay for it or travel or anything.
 

my little penguin

Moderator
Staff member
Yep our Gi was the same
Said all good Gi’s welcome “a fresh set of eyes”
It either confirms what they know or helps figure out anything new
 
Not sure if I should start a new thread for this, but have any of you visited the motility team/second opinion's clinic at Children's Hospital of Philadelphia (CHOP) or Boston Children's? If so, what was your experience? I am now in the system for CHOP and they are supposed to call this week I think the schedule the appointment (hoping for June or July). Haven't started ball rolling yet at BC, but will schedule both for summer and then chose one. I was sad to see at CHOP there is no mention specifically of Barrett's Esophagus, though they do have several with expertise in reflux and the guy we are requesting is supposed to be incredible. Don't have my notebook right now and it's not coming to me. BC specifically mentions BE.
 

crohnsinct

Well-known member
No experience with motility here but tagging @Maya142 and @my little penguin as both of their kids have been dx'd with motility issues. I forget who but there is a motility guru in North Carolina. Not sure if he is adult or ped, I am inclined to think he is an adult specialist but he is the guy who they all talk about on social media.
 

crohnsinct

Well-known member
Wanted to add that to get into tertiary centers you often need a working dx and have to send clinic notes, test results etc, so it might be a good idea to get your GI to at least do the preliminary testing to see if he actually has a disorder so he could getting to CHOP or BC or Pittsburgh who also has a motility clinic. Where in the country are you? There are others scattered around.
 
Wanted to add that to get into tertiary centers you often need a working dx and have to send clinic notes, test results etc, so it might be a good idea to get your GI to at least do the preliminary testing to see if he actually has a disorder so he could getting to CHOP or BC or Pittsburgh who also has a motility clinic. Where in the country are you? There are others scattered around.
Thanks for your response and help! So I just mentioned the BE and other issues to the person on the phone and explained why we wanted a team involved. Once we get the MRI we will have everything faxed over. It's called a "second opinion's clinic" or something like that and basically we just want a team to figure out the whole picture if possible. I am supposed to get a call this week I think to schedule. I have to admit we are also interested in CHOP and BC because we are familiar with Philly and Boston (though it's been a long time since we have visited) and we could make a nice trip out of it.
 

crohnsinct

Well-known member
Second opinion clinics are great but they are just that. A place to review everything you already had done and suggest further testing, opinions on what the dx could be, treatment advice etc but they assume your regular GI will be handling care going forward. It could be great because you get a whole team looking at the situation and spend a few days there. They don't typically run tests but rather suggest testing to be run when you get back home. If you are hoping to actually get him in for care with the motility docs and dietician etc, it may be beneficial to get the testing done at your current GI's office first to get a working dx. It is a pretty straight forward test and there isn't as much left interpretation, unlike the MRE and pathology etc. Which reminds me, if you are doing the whole second opinion process, CHOP or BC will likely want clinic notes, test results Blood and fecal labs results, MRE imaging disks, pathology slides, scope reports and pictures so you may want to start that ball rolling. You can get all of those items with the exception of path slides sent to you directly. They will only release the path slides to another hospital and generally you pay for them to fedex them so they are insured etc. Hospitals can be pretty stingy with their slides. Also, insurance does not always cover the path review at a second opinion hospital. Weird I know. It is some weird loophole in a lot of policies. But you might get lucky. Our insurance paid to have slides fedex'd and read once but not the other times.
 

my little penguin

Moderator
Staff member
Chops second opinion clinic picks the Gi for you based on what they believe is the issue
So it’s not motility clinic
If your child has only been dx with just BE and reflux at the time you make the appt
Then
You will only see a reflux (general Gi )
They review all records /imaging etc prior to making any appts

do you would not be seen at the motility clinic necessarily

bc we asked specifically to see a certain specialist and were given an appt
Again all records etc had to be sent but we got to pick the doc we wanted
Bc does let you transfer care there even if your out of state

chop also uses the term second opinion clinic even if your transferring care there
Really does not like you as the parent to pick the doc
Now if your current doc wants him seen by a specific Gi at chop that’s a different story

never dealt with motility Gi’s at either bc or chop so no idea there
Just lots of second opinions in with various specialists

insurance covered the re read of path slides every time (3-4 so far )
 
Chops second opinion clinic picks the Gi for you based on what they believe is the issue
So it’s not motility clinic
If your child has only been dx with just BE and reflux at the time you make the appt
Then
You will only see a reflux (general Gi )
They review all records /imaging etc prior to making any appts

do you would not be seen at the motility clinic necessarily

bc we asked specifically to see a certain specialist and were given an appt
Again all records etc had to be sent but we got to pick the doc we wanted
Bc does let you transfer care there even if your out of state

chop also uses the term second opinion clinic even if your transferring care there
Really does not like you as the parent to pick the doc
Now if your current doc wants him seen by a specific Gi at chop that’s a different story

never dealt with motility Gi’s at either bc or chop so no idea there
Just lots of second opinions in with various specialists

insurance covered the re read of path slides every time (3-4 so far )

This is helpful. I will need to touch base with out ped GI and see what direction he thinks we should go. I think the person they chose for us is also a motility expert, but I will have to look again. We would not be transferring care there-too far away. I also need to put in a call to our insurance and make sure they are on board.
 

my little penguin

Moderator
Staff member
The person on the phone can say they will try to get doc xyz but until they see all the records abd all the tests /images /slides etc
No decision has been made
And until they physically call with an appt time you will not know who your actually seeing
 
The person on the phone can say they will try to get doc xyz but until they see all the records abd all the tests /images /slides etc
No decision has been made
And until they physically call with an appt time you will not know who your actually seeing

Oh OK this is very useful info! I guess they just said the name of the bigwig to keep us hooked. She did mumble that we might see a fellow and I said that is fine as long as the seasoned GI doctor is in the room and gives input. Ugh.

It is strange all infection tests came back negative. Makes me wonder if the nodules might even be from exposure to Covid at school since it can impact the GI tract. Before school closed he had a crazy virus that knocked him out with the symptoms of Covid (which we didn't even think was in the US at the time). GI symptoms were mild at best though. I got the virus and lost taste and smell, but that has happened to me before from pneumonia. Makes me wonder if he formed nodules then or just from being in school exposed to it often even if he never was symptomatic once they returned to school. He had other viruses that did not impact GI, but always tested negative for Covid. I am wordy, but my point is I wonder if it was asymptomatic covid and I doubt I will ever know. Regardless it was a gift because it forced us to discover BE.
 

my little penguin

Moderator
Staff member
Nodules can be normal benign find in kids
No reason needed
If they have you see fellow
Fellow is in the room the majority of time
Then goes out to present to attending
Then attending is in the room for 5 minutes or less
We had that for a second opinion.
 
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