New Doc Wants to do an Enteroclysis?

Hi all. I am in the process of moving N from a pedi GI to an adult one where he is attending college and we met him last Friday. He wants to do a "small bowel enteroclysis" to see how his bowel is emptying and probably to check his bowel overall. N's main symptoms are the same as always (before and after surgery). Incredible fatigue after eating, unsettled stomach immediately after eating, gets full very fast, low appetite. His labs are mostly normal (more on that later) and he had an MRE last year which was unremarkable. I did a little reading on Enteroclysis CT's and apparently they are quite high in radiation (much higher that a regular small bowel follow through) and can be difficult because of the NG tube and solution they give you, and am not so sure that it measures emptying time. So I was just wondering if any of your kids have had this and what your opinion is. I would LOVE to find a way for my boy to eat more normally and gain some weight (at 97 lbs for a 19 year old is tough), and maybe this can give some answers, but am afraid of the radiation and not sure it will be addressing the problem.

Another question is regarding his labs. Ever since he started immune suppressants/ biologics, his WBC has been around 3.2 to 3.8. They even had to increase his remicade intervals at one time because of his low numbers. This last time his WBC count was 4.5. Does this mean the remicade is losing its effect? Any thoughts?

Have you ever considered gastroparesis? My daughter was diagnosed this January and she had a lot of symptoms that your boy has - nausea, fullness after eating, stomach pain and weight loss.

The test for gastroparesis - a gastric emptying test - sounds much easier than a small bowel enteroclysis. Your kiddo eats eggs with the radioactive tracer in them and they take pictures at intervals for 4 hours to see how fast the food empties out of his stomach. It is radiation but not a lot I believe. It might be worth asking about.

Not sure about the WBC because that's not an issue we've ever had.

Good luck!!

Hi Maya! Yes, I think this is what he said he was considering (gastroparesis). I too am wondering why he didn't ask for a simpler test. I think he wants to see if there is anything else going on further up, but his MRE didn't show anything so I'm wondering if this is more accurate. He also mentioned a pill cam once he makes sure there are no more strictures. I just don't like doing tests that are unnecessary, especially if they pose any risk.

Were they able to treat your daughter for this? Did anything help? I do hope they are both doing well. Thanks a bunch Maya.

Gastroparesis is delayed emptying in the stomach - if I'm understanding the test you're mentioning correctly that would look at the small bowel?

If he is looking for gastroparesis, the gastric emptying test was MUCH easier than the one you mentioned. M ate some eggs and toast in 10 minutes (she was worried about throwing up but they gave her Zofran). Then they took pictures for 4 hours while she watched two movies It was long and boring but otherwise very easy.

M tried several medications - Bethanecol and Erythromycin currently. We will probably try Domperidone next but it is not approved in the US and harder to get. There are not very many options for gastroparesis unforunately.

In M's case, her docs think that the gastroparesis was made worse by the weight loss caused by the Crohn's. So as she lost more and more weight, her stomach functioned less and less and she got more and more nauseous. It was a vicious cycle.

Her GI finally insisted on an NJ tube (naso-jejunal so she cannot insert it by herself like she could the NG tube). She was admitted so that they could insert it and her body went into refeeding syndrome (her electrolytes were all off - incidentally this was first seen in starving concentration camp inmates!). She had a hard time tolerating it and pulled it out once but eventually agreed to try it again and has stuck with it.

This is a long way of telling you our experience with weight loss. She is now getting 2200 calories, has her appetite back and is a much happier person. I never realized how serious weight loss was until our experience with this. She has been admitted 3 separate times for malnutrition in the last year! I wish we had not let it get as bad as we did - the NJ tube is annoying but has helped her SO much.

Has he ever tried an NG tube? People with gastroparesis sometimes cannot tolerate them but if he hasn't tried one it is worth a try. It was a lot easier than we thought it would be.

Hang in there :ghug:

concerning the WBC, the GI did the right thing. below 4.00 is called leucopenia and is undesired. too much immuno-supressant can cause this. at 4.5, he's now good, but still on the fence. Im in the same scenario.

Wow Maya, your daughter is brave and I'm so glad she is doing so much better!!! I remember it took a bit of convincing so it's wonderful to hear about good outcomes and improvements. Were there any other labs that indicated that she was malnourished when she was admitted,other than her electrolytes? Was her albumin normal? Is she getting 2200 calories from the formula alone? What about solids.

Yes, the doc mentioned that he was concerned about delayed emptying. N has never tried an NG tube. I mentioned it to him several times but he immediately rejected it because he has a terrible time sleeping to begin with and he said he was sure he'd never be able to sleep with an NG tube. I was thinking NG feedings would be great for him at night now that he will have his own room (was in a dorm last year) even if he got 500-1000 Kcals. He drinks several peptamens per day, but does so as a meal replacement rather than supplement. He can only get one in at a time and then he can't have more for several hours. He eats mainly in the evening so he can sleep it off. We have talked to his doctor about this but they don't seem to know what to do (says it's probably IBS), so this is also why I am trying with a new doc. I am in a constant state of anxiety worrying about how he is feeling physically and emotionally, how much he is limited by how lousy he feels, and socially it's difficult doing something that doesn't involve food, and fear that he has absolutely no reserves should he get sick. I don't know whether to just go with what the doc says, or if I should question it. We only met him that one time and he didn't spend that much time with us. Though he was fairly thorough asking N questions, he didn't allow for us asking questions.... kinda rushed after he was done. So even though I'm questioning this test, I know that I have to do something. Thanks for all Maya.

Thanks Lady Organic.....He was at a super low range for the past 4 years then!!!! I guess I will wait until his next labs get done and see how it is.

Her electrolytes were off (sodium and potassium were low) and her albumin was on the lower end of normal (but normal). Mildly anemic.

She gets 1400 calories from formula (took some trial and error and we figured out Neocate worked better for her than Peptamen) and eats anywhere from 800-1000. She was eating 400 to 500 before she was hospitalized (and drinking NO neocate) so this is an incredible improvement. Mostly bland foods but she has started eating things she hasn't eaten in a very long time!

M has quite severe Ankylosing Spondylitis, so believe me, sleep issues were our concern too. We found that the NG tube was not bad at all. It is very thin and besides the first night (which was uncomfortable) she got used to it quite quickly). M cannot sleep on her back or right side thanks to her SI joints and right hip, so sleeps on her belly or left side. With the NG tube if she was very uncomfortable, she would just pull the tube out and take a night off.

With the NJ tube of course that is not an option. It is also thicker. That is why she refused it for so long. We had a pretty bad experience with sleep in the hospital (she did not sleep for 10 days!) and finally the second time she was admitted, we gave in and used stronger pain meds and sleep meds. We were so desperate to get her weight up by then, that we would have tried anything.

The first couple weeks with the NJ tube were rough. She was very uncomfortable, her sinuses were irritated and she hated that she could not take the tube out. We are now approaching week 4 and she is FINALLY more comfortable and does not mind it so much. I honestly never thought I would say that!

M refused both tubes for a VERY long time. I know what it is to have a stubborn teenager!! Honestly, I'm just glad her GI was SO persistent, kept telling her how it would help with everything. We were very frustrated with her GI after the sleep issues with the first NJ tube, but with some coordination with other specialists it worked. Seeing a psychologist regularly has also helped M deal with this.

I hope that an NG tube will work for her again soon (if her gastroparesis improves). Otherwise we will have to go to a GJ tube. Either way, M will be taking a tube to college in the fall. She has asked for a single room specifically for that!

Drinking Peptamen/Neocate did not work for her for the same reason. She just began to replace meals if she managed to get it down. When the NG tube worked (and she didn't have gastroparesis) she was able to get calories overnight and somehow would still wake up and eat breakfast and during the day!

Maybe showing him videos could help?Or you could tell him about M's experience. I know Clash and Tesscorm have teenage boys who have also used an NG tube. If he is worried about sleeping perhaps you could make a plan for sleeping - different things he could try. The best time is to try it during the summer - remind him of that

I would ask the doctor if you can substitute the gastric emptying test for the enteroclycis. He may have a different reason for wanting the enteroclysis but at least you can ask. It's worth investigating if he is still underweight AND not feeling well.

The gastroparesis diagnosis made so much sense for my daughter - she was so nauseous and miserable but her FC was not high and the nausea and pain was in a different place from the IBD pain (above her belly button vs. lower right side).

Sorry this is so long! Good luck!! Update us when you can.

Gosh Maya, thank you so much for sharing M's experience. I knew that her doc had recommended the NG tube, and that M had accepted,but then missed the whole NJ experience....it sounds like it was so tough, but with good results in the end. I hope she is able to go back to the NG tube as it is less invasive, but having said that, an ex neighbor of mine had a GJ tube and it didn't seem to be an issue with her.

I do think I will call the doc because if they do the enteroclysis they bypass the stomach completely and push a tube into the jejunum. It seems like they would want to see if the stomach is emptying properly also. I imagine that because his symptoms are rather vague, that they want to have a look at his entire intestine, but I would think that last year's MRE would be sufficient....his symptoms haven't changed since then. You are right about summer being the time to do this and I feel like it is going by so fast and we will not get to the bottom of what is going on. Plus N started an internship just this past week so I don't know how stressed out or willing he will be to do anything too intrusive. Aughhh!!!!

My daughter has had trouble sleeping for years, which was one of the reasons we were scared of the NG tube. The first few nights were really hard, but after that her sleeping wasn't any worse than normal. Like Maya's daughter, E had to be in the hospital to be monitored for refeeding syndrome when the tube was placed, but she didn't end up having any problems and was able to go home after 3 days.

I don't have any advice about the testing, but good luck with working out which tests to do, and and I hope that the new doctor is able to help your son.

Maya--I'm glad to hear that your daughter is getting more comfortable with the NJ tube, and that's so great that she's able to take in so many calories now. That much be such a relief for you all.

Thanks PDX. Im glad your daughter did well with he NG tube. I do think N would also after an adjustment period. Now I am just freaking out about this test. He scheduled it for next Monday. I have a call in to the imaging place to see what it entails. I am just balking because he had an MRE last year which showed nothing and don't know how much better this test is. It does expose him to prolonged radiation which scares me, especially if the test isn't necessary. Having said that, maybe they will find something to explain his lack of weight gain. I will also call the doc.......oh dear, just venting!!

I'm not a parent, but I've experienced some of the things mentioned - not the enteroclysis though. I had a gastric emptying study, I'm not sure about the levels of radiation, but as long as your son can eat a small meal ok then it's a very easy, painless test. I was diagnosed with gastroparesis by it. They assess the rate of emptying for liquids and solids from the stomach, but don't assess the small intestine or anywhere else.

I've also had an NG tube for feeding, which did not work for me. I didn't find the tube uncomfortable at - I could easily forget that it was there. Having it put in was uncomfortable but quick. But my stomach couldn't tolerate the feed, and I just lost weight. I gained much better just on ordinary food, plus Ensure and similar supplements. But I've had NGs many times to aspirate my stomach, and have never found them difficult or uncomfortable.

I haven't heard of an enteroclysis before, but my guess would be his doctor must have a specific reason for doing it and must suspect something besides gastroparesis, as gastroparesis is diagosed with a gastric emptying study. An upper endoscopy can diagnose inflammation from reflux, which often occurs along with gastroparesis.

I would ask the doctor about the specific reason for wanting the enteroclysis. I wouldn't put off a test because it involves an NG. I know many people do find them uncomfortable, but it's worth trying. And with NG feeding, you don't have much to lose because if it's uncomfortable it's easy to remove.

I hope you're able to find some solutions soon.

If he is looking for gastroparesis, the gastric emptying test was MUCH easier than the one you mentioned. M ate some eggs and toast in 10 minutes (she was worried about throwing up but they gave her Zofran). Then they took pictures for 4 hours while she watched two movies It was long and boring but otherwise very easy.

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My gastric emptying scan only took about an hour and a half. Rather than waiting for my stomach to empty, they measured the percentage that had left my stomach after certain intervals. Either way, it's a very easy test.

I'd taken domperidone in the past (before being officially diagnosed), it helped a bit for a while but then stopped working for some reason. The best thing I've found to help with the fullness is to have more of my calories from liquids and semi-liquid foods, as liquids leave the stomach faster.

Thanks UnXmas I'm so glad you were able to gain weight with regular food!!! I am thinking that he was looking more at a motility issue, but I thought he had mentioned starting at the stomach. All the literature I've read has said they start only at the jejunum, inserting a tube and putting the barium in quickly. But I called the diagnostic place and they said that they don't do too many of them but that they have the patient drink the solution. I am not so worried about the NG tube, I am mostly worried because of the radiation exposure (he has already had a small bowel follow though, and many other ex-rays of his joints and it's a long test, especially if they have to place a tube), and also because they don't do many and it took some time for her to even find the protocol, and from what I read, you have to have a good technician with experience in this procedure in order for it to be an effective screening tool.

My son does get a lot of his calories from Peptamen. But after he drinks one he can go several hours before feeling like he can have another one. I don't know that what he feels is fullness, but feels that if he has more he will feel bad (unsettled stomach, tired...). Part is just not having an appetite. I am seriously considering taking him to Cleveland Clinic for an evaluation. But it does help to hear from you that using an NG tube is not that difficult to tolerate as I am trying to convince him to do nightly NG feedings. Thanks again.

Wow !
DS is 92 lbs at 11.
I will say that for the longest time DS had similar issues ( past 6-8 months)
We switch him to pen diet (50% ) with exclusive crohns diet ( 15 allowed foods)
He has gained weight and his gut feels so much better ( he did EEN for two weeks of peptamen then Peptamen plus the specific foods only ).
He has been doing this for two months now and is adding more veggies ( specfic to the Ibd-aid diet list.

My oldest had a gastruc emptying study but as other said it just looks at the stomach not anything else .

Thanks MC.....and yes, my heart sinks every time I see him. He liked this doctor because he feels that at least he is doing SOMETHING instead of saying that all test are a ok. I think it may come down to working with diet and feedings....the issue will be convincing HIM! I will definitely tell him of all the success stories and hope that he sees it as simply another treatment.

In the meantime I have to figure out whether or not to let him go through this imaging test. Its not widely used so I have to assume it's not a very effective diagnostic tool. Thanks to all again.

I've been following this thread closely because we "might" be in the same boat...soon.

Not that a test has been named but that some kind of testing will be needed... maybe.

Grace's issues are the same as your son but the difference is she has a g-tube and I know she has delayed emptying. I can pull food (like fruity pebbles out 4-6 hours later)
However her symptoms come and go.

So we've (GI and us) have pushed off testing because we know something isn't quite right but do we put her thru the testing? The fear or concern is their might be more then know that's wrong.
Very confusing!

Call and talk to his GI. Tell them your concerns and ask WHY this test vs other test.

http://pubs.rsna.org/doi/full/10.1148/radiol.2453060798

http://www.ajronline.org/doi/full/10.2214/AJR.11.7966

CT enterography and CT enteroclysis??? CT enteroclysis is the CT equivalent of conventional enteroclysis and involves insertion of a nasojejunal catheter and infusion of contrast material through the catheter. Like conventional enteroclysis, CT enteroclysis entails reliable and controlled distention of the small bowel and allows assessment of bowel distensibility and stricture [34, 35]. Insertion of the nasojejunal tube makes CT enteroclysis quite invasive and suboptimal for pediatric patients [13]. As an alternative to CT enteroclysis, CT enterography has the advantage of being noninvasive and rapid. Wold et al. [36], in a study comparing CT enteroclysis and CT enterography found similar diagnostic accuracy of the two techniques. Most CT enterography protocols require patients to fast and involve some degree of bowel preparation [34, 37???40]. Administration of a large volume of negative or neutral oral contrast material (contrast material with lower attenuation than the bowel wall) is preferred to optimally distend and visualize the bowel wall. Positive contrast material (contrast material with higher attenuation than the bowel wall) is not as desirable because it can obscure mural enhancement [13, 34, 41]. Antimotility medication can be administered to reduce peristalsis [9, 13, 37]. Indications for first-time CT enterography include identifying and staging IBD, assessing potential complications of IBD such as obstruction, and evaluating for fistula or abscess. CT is preferred for acute presentations that may have complications, such as perforation, abscess, severe stricture with prestenotic dilatation, and fistula, that require surgical management [13, 42].


Read More: http://www.ajronline.org/doi/full/10.2214/AJR.11.7966

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I looked it up - it seems like it is an NJ tube and not just an NG tube for the CT. It might be more uncomfortable than a regular NG tube (slightly thicker), but he'll probably handle it ok. M has been sedated for every one of her NJ tube insertions because they do have to maneuver it into place and it isn't the most comfortable (lot of tugging and pushing from what she remembers). She is still at a pediatric hospital though, so the protocol may be different at an adult hospital.

I wouldn't worry so much about the tube, but I would worry about the radiation. I would hate for him to have a bad experience with the tube though and then refuse tubes in the future. If he does do it, till him the first time is always the most uncomfortable. Even with just the NG tube it took M two days to get used to it!! He shouldn't judge based on the procedure.

Hang in there, we're thinking of you!!

Hi Awmom,
After reading up on this test I would not be comfortable with a place doing it that is not doing them on a regular basis. It sounds pretty complicated and I would want someone experienced doing it.
That being said if he is thinking gastroparesis then that test is not the standard of care. The standard of care would be a gastric emptying scan and possibly a gastric manometer study though very few places do that test. It is when they put a special NG tube down and hook it up to a machine and measure the pressures in the esophagus and stomach no radiation used for it at all.
I would ask for different test options depending on what exactly the doctor hopes to see with the test.

Thanks a bunch for your responses. I am starting to understand all of this. Farmwife, I am sorry you might be contemplating the same scenario, but I am beginning to understand the validity of the study under the right circumstances and expertise. I don't think the test is that good to detect motility issues, but it appears very good for visualizing more subtle changes such as very mild obstructions or narrowing that sometimes are not detected with and MRE. For this, they have to intubate and inject sufficient amount of the barium mixture directly so that the intestine is sufficiently distended and can more easily be visualized. They can do this with regular flouroscopy, or MRI, or CT, with MRI being the one with least radiation. The second article Maya posted is excellent!!

Maya, thanks for the excellent articles. I've read so many and the second one really clarified things for me and made me feel a little bit better knowing that it is sometimes used in pedi patients. My son is 19 but I think I will always consider him a pedi!!!!! I have a question....how do they place M's NJ tubes? Is it with a scope? I too worry about the radiation so I am planning on calling the GI to see if it is possible to do the test with MRI instead of flouroscopy.

Thanks Kim, I am thinking the same thing.....doing this test in a place that has no experience could be a total waste of time and possible risk. The thing that has me the most confused is that the radiology tech said that they administer the barium solution ORALLY! Isn't an enteroclysis by definition an NJ tube administered procedure? I asked her several times, but she kept saying that she was looking at the manual and that it was oral. So I asked her if then it wouldn't be classified a a barium swallow, and she said that no, because the barium solution was thinner and it allowed better visualization. So my question continues to be "is he really getting an enteroclysis or a thin barium follow thru?! Sometimes it is so hard for me to believe how we have to stay on top of things because there can be so many mistakes. In retrospect the docs made so many mistakes with N, which would not have happened if I had had a little more expertise or had found this forum earlier.

I think I will call the docs office and tell them what the tech said, and then ask if it can be done with an MRI rather than regular xray. Or I might ask if they intended to do it as follow through and whether that is actually the test he wants.

I have another question. Have any of your kids had a Barium Follow Through?

Thank you to all. You are always so helpful.

DS had a upper GI series with a sbft prior to dx
It showed nothing and was a waste imo
Just a Ton of radiation and is considered very old school and outdated y MrE instead

M's tubes are placed by interventional radiology using fluoroscopy I believe. It is radiation but honestly, we were so worried about her weight, I didn't even think about it much. I believe it's much less radiation than a CT.

M has had a small bowel follow through (using barium).It's a pretty easy test - the drinking is the only hard part. It has radiation too but less than a CT. I think most hospitals are using MRE's instead of SBFT's now since MRE's are more accurate and have no radiation.

N has also had a sbft at diagnosis and though it indicated narrowing the doc didn't do anything with the info. It wasn't until we went to Boston Childrens that the doc said his course of treatment never took this into account! According to what I read, the flouroscopy doesn't entail that much radiation.....much less than a CT. But when it is combined with a follow through it adds up quickly. However, if that is the only way I'm ok with it as long as we have an experienced radiologist....I want to make sure that I can trust the result and not be exposed to radiation for nothing. I WILL ask if it can be done with an MRI so that the only exposure will be the NJ placement.

I got so ridiculously anxious reading all the literature, and imagining that they are going to find jejunal strictures necessitating more surgery, that I decided to turn off the computer and go by some new shoes!!! Then I came home and had a shot of tequila. Feeling better now.

Ok, so I spoke to the doctors nurse and after several calls it turns out that what the doctor WANTED was actually a small bowel follow through. The secretary said that it's just the way the computer put in his order (enteroclysis), but that the imaging center had it "right" and that the barium solution is to be taken by mouth.....that they understood what the doctor wanted. Hmmmmmm. When I had questioned the radiology technician what the difference was between what they were going to do (supposed enteroclysis)and a smft she said it was the thickness of the solution. Hmmmm. Now I am wondering if we should do it at all.

I understand that he wants to see how the barium moves through the gi tract to see if he can spot either a stricture or some impediment, and in that way it makes sense and may be worth it. On the other hand, the literature says that an enteroclysis is better at detecting small differences. Not that I would have them do the procedure.

Question: Does an MRE take "moving pictures" of the swallow solution moving through the intestine? My impression is that it doesn't...am I right? Should I be worried about the radiation? He has had on sbft about 5 years ago and an MRE only 1 year ago. The MRE seemed ok.

MRe is very low radiation ( just the amount in the iv contrast ) not the machine
Sbft can be up to 15 xrays in a single day ( ask me how I know the MAx amount they are allowed to take)
Still did not find his problem
The radiologist at the time insisted the one thing they KNEW DS didnt have was crohns
Since they couldn't get the fluoscopy to show his terminal ileum at ALL
I wanted to go back 3 months later when DS was dx and say really your sure he didn't have crohns - color me unimpressed

MRE is still pics but taken over an hour so they can see things move through the gut
They actually paralyze the gut at one point for some of the images

The who.eoi t of the MRE is to take pictures of the gut as the contrast moves through it. It was actually invented by a doctor who wanted to reduce the radiation kids were exposed too. I would ask about an MRE. A pill camera might show similar things as well.

Oh no MC......I felt my gut clench reading your post! How DO you know that the max is 15 shots!!!! That is the thing....it not only has to be the right exam, but it also the skill of the technician plays such a big role with these test! I recognize that they have a place in early diagnosis especially (or so it seems), but then again, if there is a better test available why not do that. In this case, I'm not sure what a sbft would show that the MRE didn't. An enteroclysis would show more, but has alot more radiation, and anyways, that apparently is not what the doctor had in mind.

I have called the Cleveland Clinic, and if my son accepts, I think we will just go there for consultation and whatever test they may need. If they cannot get us in in the summer, maybe I'll make it for January. I don't want it to be a rushed visit. In the meantime, I can look into night feedings.

Also, we have an appointment with his pedi GI with whom we have not severed ties on July 11. Maybe I will ask him before doing any test.

DS has constipation not diarhea as part of his crohns
So the barium basically wouldn't move much - despite walking eating etc
They tried various things for DS that should have worked if his gut was normal
But the only way to check was an x-ray
Even pulled the head radiologist in for the fluoscopy
Despite having lots of experience and low radiation ( kiddie hospital )
DS did fit the mold so 15 xrays it was and they won't run that test ever again

No they won't! Oh my gosh....what a nightmare! So glad they used the low radiation...I hear that cuts it way down.