Urgent (kinda)should he do his MRE question

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awmom

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Hi All. About three months ago N started having pain in the usual bellybutton area, just a few times, some bloating, a bit of blood (mostly from a hemorrhoid) loose stools....he had been given Lexapro and we decided that was the reason. That and the fact that it was almost time for his remicade. Since then, he has times when he feels ok and all is well, but MANY foods bother him and his appetitehas not been great lately and he feels easily full. This could be due to the fact that he had two weeks of very little sleep, poor diet and lots of stress with uni orientation and other competitions. So at his regular check up two weeks ago his GI did a blood panel, checked for Cdiff, and suggested a round of flagyl in case of bacterial overgrowth. He was worried that he might be getting another stricture so he suggested an MRE if the symptoms persisted. The blood panel came back perfect (even Hgb, and Hct!!!), ESR and CRP perfect, Cdiff negative, and fecal calprotectin 52 (below 50 is normal). So my question is, should we do the MRE with such good labs? Right now he feels lousy because of the flagyl (doc stopped it)? It is scheduled for day after tomorrow. Part of me thinks yes, lets just see what is going on, but on the other hand, I don't like doing tests that are not needed, plus he may need it later and the insurance may not cover it. Any thoughts??!!! AUGHHHH!!
 
I'm no expert (haha, didn't even know about Crohn's 3 months ago), but my child's labs are usually fine, even with the MRE showing a fistula. I would get the images for peace of mind.
 
So many aspects of this disease do not make sense to me. I would proceed with the MRE because of stories like malorymug's. An alternative would be to see how he feels off the Flagyl and then make the decision.
 
I would also do it. Many of the kids here have normal bloodwork even with active inflammation - not sure about normal FC though. However, scar tissue will not be reflected in lab results but an MRE may show if could be the reason for his symptoms??
 
^^^
Yeah that
Normal labs can be mean less
Imaging can give the doc the info he needs.
Since its painless and no radiation - we always go with imaging .
 
Normal labs here with inflammation going on in small intestine. Similar symptoms, no appetite, full after a few bites. MRE picked up the inflammation. I would do it then you will know and won't be questioning or second guessing.
 
This is one of those times when I would look to your doctor for guidance. If he feels there's enough going on to warrant an MRE and you trust his judgment then I would go ahead.

You can, as someone else suggested, see about getting it delayed for a couple weeks if you really feel it might be wasted.

What does your son say?
 
I would also look to the Dr. for guidance. Ask the old question, "If this were your child what would you do?"

The meds he has been on could be the reason for the decreased appetite and not feeling great. You do run the risk of needing a CT later if symptoms suddenly get worse and he ends up in the ER. The MRE wouldn't have the radiation exposure of a CT scan. Does your son normally have an elevated CRP or SED rate when he is flaring? Could he have scar tissue that won't be picked up with blood tests?
 
I'd do it. Better to get the "everything looks terrific" and know not to worry (at least for a day or two :)) than to not do it and wish you did.

Hugs,

J.
 
Thanks for all of your responses. I will give the GI a call tomorrow, but Im also thinking we will give the MRE a go since he will be going off to college in the fall and this way there won't be any surprises....we hope! Johnnysmom, his SED rate, CRP, and calprotectin were all out of the roof when he was first diagnosed and went down gradually. Not soon enough, since he had to have a stricture removed a year ago. He did feel better after that, but continues to have many issues with many foods, and has to eat rather small portions. He drinks a couple of peptamens a day just to keep up. His weight went up about 7 -8 pounds (to 103) but he has lost a couple of pounds recently.

I have what may be a silly question. can a stricture form in the absence of inflammation? My thought is no, since it's the scarring that causes it, but just checkin...... Thank you all....these decisions are a lot easier with a team behind you!!!!!
 
I'm glad to hear he'll get a MRE for going off to college.
A 103lbs seems so low. Does his docs seem concern?
 
His doctor IS concerned (though his previous doctors were not and did not want to even consider night feedings).....he just can't seem to get enough calories in.He tries hard, but so many foods bother him, or he has a little setback. I can't imagine how he is going to do when he goes off to college. I am sending a ton of peptamen with him and am researching different places with food he might tolerate. I am even considering hiring a chef with nutrition background to cook and deliver to his dorm. Sigh....worries never end.
 
My son had simmering, come and go inflammation that didn't show up on labs which over the course of two years evolved into built up scar tissue and caused a stricture. How confident are you that he hasn't had any inflammation going on? Do you have a previous MRE that you can compare to?
 
103lb does seem low! I would definitely do the MRE then, just to check even though his labs look great.

My daughter has also lost a lot of weight in the last year or so and her GI is pushing an NG tube. It hasn't worked yet (my daughter is a stubborn teenager) but we just can't get enough calories into her for her to gain weight (she does drink 2 Peptamen a day but is very difficult about it now). She's a rising senior in high school are her GI wants her on tube feeds before college so she is at a good weight before she goes or she can either take the NG tube with her (LOL M will never agree to that).
 
Hi Mehita, did your son have symptoms? Did they diagnose the stricture with an MRE. How did they treat the stricture? It's so disconcerting that inflammation does not always show up in labs. I was under the impression that the calprotectin was a pretty definitive test but it's only the first time they have checked it since his diagnosis over 4 years ago. And his level was in the high normal. He has never had an MRE, just an MRI which showed thickening (he didn't have to drink barium, just water hmmmm) about two years ago, and he had a barium follow through about 4 years ago. He has since had surgery (a year ago last march)and no further imaging.

Teenagers are tough. They don't want to be different or call attention to themselves. Maya, I hope your daughter is able to gain some weight. My son also balked at tube feedings and was relieved when his docs didn't push. Now I'm regretting not pushing harder. He goes out with friends and refuses to take peptamens with him and then gets stuck eating food that doesn't sit well, and then feels bad the next day.......etc.

Ok, well we are definitely doing this on Thursday. Have to leave at 5am gahhhhh!!
Thank you all for your support.
 
If things are under control then the pounds should not "fall off" when you stop the ng tube.
DS gained a lot and has been slowly reducing his peptamen jr.
Even at only one a day - no weight was reduced.
He needs two a day for motility not weight at this point .
We treat it as a med and always have - you take x number if pils and two shakes - it is not a food period .

Good luck on the MRE
 
Once Johnny was in remission he has had no problem gaining weight and doesn't drink shakes anymore. I honestly wasn't sure that was possible, I thought it would always just be a struggle for him to gain. It did take several years to get there. I don't know if his body just went into complete remission on it's own or if the healing process just took 2 years but one day things changed.

I think normal weight/weight gain is the ultimate goal. If he won't drink shakes, make sure he is always making high calorie/high protein choices. Whole milk, adding butter to things, peanut butter, chicken/ red meat. These helped a lot when Johnny was trying to gain.

Good luck on MRE, and let us know how it goes. It sounds like you have made the right decision!
 
Good luck today with the MRE! To answer your questions, his symptoms were no weight gain and lots and lots and lots of vomiting. The symptoms didn't show up right away though and because he also has Celiac, we weren't sure it was Crohn's related until things got pretty bad. He had two MRE's done a year apart and both showed the stricture. After an ER visit, we finally got a radiologist, GI, and surgeon all in the same room and they agreed it was built up scar tissue. He then had 10" of his small bowel removed and it made a tremendous difference. He started putting on pounds immediately. Our GI always says kids should never lose weight. If they do then something is up.

The normal labs not showing inflammation could also be an indicator of scar tissue. There may not be inflammation to measure, but the scar tissue could be interfering with absorbtion. Just a thought.

Let us know how it goes today... *hugs*.
 
It's a shame he (and M) won't do the tube feedings overnight :( - it's so much easier to control and, when taste isn't an issue, you can use the elemental formulas which are absorbed more easily.

In a sense, we were lucky in that when S was diagnosed, he was told EEN through NG was his treatment (steroids were only vaguely mentioned). So, S started on o/n feeds with neither of us knowing there were options. ;) By the time he went on supplemental only, and I learned about oral versions, he was happy with the convenience of never needing to drink a minimum number of shakes and never wanted to try the oral shakes. I sympathize with you because, I'm sure, if it wasn't introduced to him in this way, I would've had arguments over the NG tube. He always said he would NOT take the NG tube, etc. to university with him (although I handled it as MLP - sorry but no choice, it's a treatment)... but, by then it was a non-issue as he'd started remicade.

As far as losing weight as soon as stopping EN - this was not the case at all with S. EEN (3000 cal/night) and supplemental EN (1500 cal/night, 5 x wk) helped S regain the lost 25 lbs (pre-dx) and another 25 lbs over the next few months. However, once he reached an appropriate weight, he stabilized (even with continued 1500 cal/night). Once he stopped the supplemental EN (still drinks 1-2 Boost per day but only 250-500 cal/day), he has not lost weight. Never really understood how his weight has remained stable with or without EN but, although not really noticeable, I can only assume he instinctively adjusted his appetite/diet according to the calories he received through EN.

I would urge any parent to continue to encourage EN, especially through NG overnight. I think trying to get then to drink 6+ shakes a day for a long, indefinite time would be difficult for them and you. In addition, by drinking the shakes during the day, I would imagine they will end up eating less as they simply won't be hungry. So, while it is still 'supplemental' to a degree and the nutrition is still a big benefit, you may end up 'replacing' meals/calories rather than just adding/supplementing their daily intake (did that make sense?? ;)).

But, not easy to convince teens to do what they don't want... :ghug:
 
Well said Tesscorm. We aren't veterans but I cannot imagine getting Claire to drink enough shakes to get to the 1200 ml volume she's getting overnight! She hated the tube for about a week. Now, no biggie! I'm quite certain she could put it in herself but we aren't "there" yet. She does take it our herself and then I clean it. :)

Moms get ALL the GREAT jobs. :ybatty:

J.
 
S found the first week bothersome too... the sensation of the tube, the noise of the pump, etc. but, like your experience, after a week or so, no big deal. :)
 
I'll be bringing it up at our next GI appointment. M has an appointment with a nutritionist in a couple of weeks, and I'm sure there are going to be concerns about her weight loss. I really do the an NG tube would be the easiest way... but it's not so easy with teenagers :(
She doesn't see it as a med and frankly even if she did I'm not so sure she would care. She's had such a hard time in the last few years and is just so very sick of all of this, that she won't even consider new things.
 
Thanks for your wishes and so many things to think about. The MRE went well and now am anxious to get the results. I so hope that they find all is well, however, then that also leaves us stuck with inability to eat like a normal teen.
Brian's Mom.....I sure can understand B not wanting anything to do with NG since he did it for so long and feels he would have to do it indefinitely for the pounds to stay on! And Maya, like your daughter, and I'm sure SO MANY of our kids, they are just completely fed up with this disease and want to just live a life without pills, colonoscopies, formulas......sigh.... Regarding the supplements, I need MLP to come give N a talk! SEriously, you all inspire me to keep pushing him.....he thinks I'm a nag. Johnny's Mom, that is amazing that Johnny gained the weight and appears to be in full remission. I love to hear that!!! I wish more docs pushed EEN early in the diagnosis. If you try to sell it to a teen ready to go to college it's impossible. I think one of his problems, especially now that school is out and we don't have a real schedule is that he ends up using the peptamen as a meal replacement....I told him that if he does that, he needs to drink two.....but he cannot fit in two and hates to take them with him. And because there are so many foods he cannot eat it's difficult to keep stuff around that he can just pick up (yogurt, cheese, fruit, PB,Milk, cookies........)plus he stays full a long time after eating. He does eat well at meals though. Mehita, I'm also thinking scar tissue.....the same thing happened before his first surgery.

Thank you ALL. Just talking these things out and hearing about your struggles and successes and journeys help so much.
 
So the nurse called a couple of days ago to tell me that the MRE was fine, labs fine, calprotectin 52 ( little above normal). So, I am relieved that there is no stricture. Im not sure how effectively the MRE can detect inflammation, and whether a "slightly elevated" calprotectin level is significant. I do know that N's appetite is not good, though he says his "stomach is ok". I think his weight is holding up at 101 lbs. He had a remi treatment yesterday so will see if that improves things a bit (though it might be hard to tell since he is going off camping with friends for the 4th of July weekend and who knows what he'll eat!!!!).
 
M's GI like FC to be below 300, so 52 sounds pretty good! M is like that too - no appetite whatsoever. We're working on it too, good luck! Can he tolerate dairy? M loves milkshakes but they make her very nauseous so she can't really have them often (though they have lots of calories!)
 
So glad to hear his MRE results came back good! I'm not sure about your other questions but I do understand the difficulties of teens and CD. C was never able to gain until EN and because we know there is inflammation, he remains on it to keep the weight on. We have to get the inflammation under control before college because I fear he will be topsy turvy with the NG tube while living the college life!
 
I am very glad to hear the MRE looks good. Has he seen a nutritionist to help figure out what is gonig on with the weight loss?
 
Glad all looks good. Hope the Remi does a good job. I was told under 100 for calprotectin is good
 
Same here added EN to help gain weight first from crohn's inflammation - now arthritis .

At 10 he is almost back to where he should be curve wise .
Glad the mre was good.
We were told the same on fecal cal less than 300 is elevated but ok for Ibd .
DS had more than one 87 that was considered normal
Last one was less than 15 :)
 
Last year we had an MRE, colonoscopy and fecal calprotectin done within 2 days. His fecal calprotectin result was 300 and colonoscopy w/biopsies showed mild inflammation. GI said C's fecal calprotectin result reflected what he saw on scope. He tweaked his meds because even though below 300 is considered ok with IBD that it was apparent that 300 represented simmering inflammation for C, which can cause damage. 3 months later C's FC result was 48 and doc was pleased with that.
 
Thanks for all your responses. I am going to assume then that there is no inflammation going on since it sounds like the FC is pretty representative. His calorie intake I know is NOT sufficient and we have spoken to a dietitian and tried calorie dense meals/foods/snacks.... He just can't take it in. I think the body just adjusts to a lower calorie intake and maybe it needs something like the night feedings to reset it. Maya, he cannot tolerate dairy, but he does drink a couple of peptamens a day...I hope you find a way to get some extra calories for M but I know how difficult it is and worrisome since she will be off to college in a year. So many of you have had such good results with EEN ...I so wish we had done this. Clash, C also has one more year at home right? I have to believe he will be under good control by next year.....wishing you speedy luck.

In about six weeks I will be wringing my hands as he goes off to college, but I have to trust that he will take good care of himself. He is so glad I won't be there to nag him!
 
He gets fecal cal about every six months or sooner if there are symptoms.
Easier than a scope ( he has had 4) and reflects better than blood for him.

DS only drinks 2-3 peptamen jr a day but has been able to gain steadily on this once he was on a higher dose of remicade .

My fitness pal has an app - you can put in info and tell it if you want to gain etc...
It will provide the number of calories needed so you can track his input from there .
Often times what you think is being eaten is not really enough calories .

Have you asked about periactin to stimulate his appetite ??
It really helps get you hunger if all other things are in control .
 
Thanks MLP. I need to tell him to get that app. He has taken periactin before but it zonks him out completely even when he takes it at night. I should pull it out again now that it's summer and he can sleep late.....I had completely forgotten about it. Thanks!
 
Our Gi had us cut done the dose but give it over a longer period of time during the day .
Maybe something to ask the Gi
 

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