Vomiting on Xmas- obstruction? What do we do?!?

[cassimw]

I'm in desperate need of guidance. My newly diagnosed daughter (Crohn's- age 14) has been on an enteral diet for about 8 weeks and doing great. She's had 2 Remicade treatments. A few weeks ago her doctor told her she could start to eat a bit of solid food, so she's been eating a small dinner with us since then. Yesterday she has 3 Ensures, a a total of maybe 500 food calories. Last night she had projectile vomiting. She said she felt bloated. Then she just threw up again this morning. No fever or other symptoms.

Of course it's Saturday and we are busing family 9 hours away and I have no idea what to do. Am I freaking out over nothing? Should I be concerned? I left a message with the nurse, but I don't think it will be checked until Monday. Should I call the doctor on call? Help!

 

[my little penguin]

Call the on call doc - that is why they are there .
Leaving a message on the nurses line won't get picked up till Monday
The on call doc will have your dd history and be better able to help you figure if or when you need to head to the ER.

Hugs

 

[ronroush7]

I agree with my little penguin. Let us know how everything is if you get the chance

 

[Maya142]

How is she doing?

 

[CarolinAlaska]

Hopefully just a bug. What did the on call doc say?

 

[kimmidwife]

Hope you got in touch with the doc. Update us when you can.

 

[cassimw]

Thanks you all for your advice and support. I'm so glad I found this forum! My daughter hasn't thrown up since this morning and is doing much better. I did try to get in touch with the on call doc, as what MLP did made a lot of sense. Problem was, the recording said "press 3" for the on call GI- and every time I tried, it disconnected me ;-(

I'm hoping it was a bug, but I have a feeling it wasn't. She's been having stomach pain more and more lately, which hadn't Been happening since she started EEN. I'll be calling her doc first thing Monday. Thanks again everyone. So glad for the support!

 

[crohnsinct]

Poor pumpkin! I hope it is just a bug.

Just a quick observation and it may not be related to the vomiting at all but Two remicade infusions may not be far enough along to have the Remi do all the lifting and you may have moved to food a little too quickly At 3 Ensures (about 250 calories each if using the regular) and 500 calories of food you are almost at 50% food. For my daughter (only on Mtx) anytime we wean from EEN and get to 50/50 her inflammation returns. I would maybe try to go back to 100% EN and see if that helps her a bit.

Good luck and keep us posted! I hate that her Christmas was marred with Crohn's issues and feeling so poorly.

 

[Jennifer]

How is she feeling today? Did you take her back to just liquids for now until you get a hold of her doctor? If she's still distended today and in a lot of pain or can't keep down liquids then you may want to take her to the ER before Monday as it sounds like she was obstructed. Hope she feels better soon.

 

[cassimw]

crohnsinct - Thanks for your thoughts. There might be something to that. My daughter drinks the Ensure Plus (350 cal.), so she had just over 1,000 calories on Xmas from Ensure. Normally she'd have about 4 Ensure (1,400 cal.) and then a small dinner with us. But on holiday break and weekends, she sleeps later and then doesn't consume as much (so usually more like 3). Her doctor did say that we could try more food and less EEN and see how she feels, so I think we were casually leaning in that direction, but she really didn't eat a lot on Xmas (1/2 a cinnamon roll, 3 bites of chocolate, a bit of freeze dried ice cream (xmas gift), and a few bites of ham). She told me yesterday that she hasn't had much of an appetite since Xmas day.

I sent a detailed email to her GI's nurse, who called me a few hours ago to get more details. She's going to call me back after she hears from the doctor.

Crohnsinct - I never visualized that my daughter would continue to have to be on mostly a EEN diet indefinitely - is that a thing that people do? The doc told us 8 weeks (which just ended) and we thought she'd be able to transition back to food by now. We'd been doing just a small dinner and got permission to do a little more, and now this. I'm not sure what to make of the vomit. I'm still trying to wrap my mind around the chronic nature of crohn's. This is so much more taxing that we bargained for. I really hope we are not headed toward surgery. I just keep avoiding thinking about it...

 

[my little penguin]

Most kids need at least supplemental en (2-3 shakes a day ) in order to maintain growth and weight similar to their peers
You just can't physically eat enough calories
Otherwise the stereotypical short light weight kid with crohns tends to happen
Even with good meds growth and weight tend to be lower than average
My kiddo has been on fully EEN and later supplemental en for the past four years
His growth and weight is equal to his peers (75% for both )
When we lower en he loses weight

He was recently dx with Gastroparesis so that has made eating solids a little trucker
But will find a way

 

[crohnsinct]

No it isn't something most people do unless you have some other issues on top of the IBD...ie: gastroparesis etc.

However, two Remicade infusions may not be enough to take hold of your daughter's disease and you may have started the taper of EEN a little too aggressively. Just like when people are on steroids and taper too quickly. You are basically using the EEN instaed of steroids to control inflammation until the Remicade can take over. Therefore you may have to move slower until the Remi can handle things.

All that is just a mommy opinion though and I do think you need to talk to your GI and rule out any other issues that might be causing it.

FWIW - it took my older daughter 5 months to get off from EEN and onto a full diet...very teeny tiny baby steps. I think we added one or two foods a week and very slowly transitioned her food o EN ratio.

 

[Maya142]

I agree with the others - she might have to be on EEN or steroids till the Remicade kicks in. Took quite a while for my daughter 4 infusions or so.

Is she on any others meds - like 6MP or MTX?

My daughter is on formula indefinitely but she also has Gastroparesis. She does eat solid food, just can't maintain her weight with the amount she eats.

 

[pdx]

Crohnsinct - I never visualized that my daughter would continue to have to be on mostly a EEN diet indefinitely - is that a thing that people do? The doc told us 8 weeks (which just ended) and we thought she'd be able to transition back to food by now. We'd been doing just a small dinner and got permission to do a little more, and now this. I'm not sure what to make of the vomit. I'm still trying to wrap my mind around the chronic nature of crohn's. This is so much more taxing that we bargained for. I really hope we are not headed toward surgery. I just keep avoiding thinking about it...

I know from experience that it's discouraging to think about staying on EEN for more than 8 weeks, but it's also kind of amazing that something as side-effect free as EEN can have the same anti-inflammatory effects as steroids. My daughter started EEN 6 weeks after starting Remicade, when it became clear that Remicade wasn't going to be a quick fix for her. She ended up being on EEN for 8 weeks and then supplemental EN (via NG-tube at night) for 10 more weeks. By the time she stopped EN (about 6 months after starting Remicade), Remicade (plus MTX) was working really well for her.

She isn't doing any supplemental shakes right now, although I wish she would. She went from 70 pounds to 95 pounds with 4.5 months of EN; without it now, she's still gaining, but at a much lower rate.

One more thing. When my daughter first started adding back food, we used foods from a specific IBD anti-inflammatory diet, and I think that helped avoid stomach cramps and nausea. You might think about trying that. It's a pretty restricted diet, but my daughter was so happy to have food again, that she didn't really care. Here's some info about that diet:

http://blogs.umass.edu/kpost/files/2013/08/Patient-IBD-AID-Packet.pdf

Hope that your daughter is feeling better soon.

 

[Chester31]

So sorry to hear that your daughter is struggling.
My son has been on EEN since June - he needs around 3000 calories a day to maintain a healthy weight and just wouldn't be able to manage that with food due to strictures in his small intestine. Anything solid causes a feeling of fullness and bloating so he just stops eating. He's had a couple of nasty obstructions this year too and so accepts that he can't eat for now (he's 17). His new GI wants him to continue on EN for now although he is allowed to add in soup (with no lumps), ice cream and custard if he chooses.
Hope she feels better soon x

 

[cassimw]

I'm starting to get the picture about EEN and I think you guys are right - too much, too soon. And you are right, pdx, it IS pretty amazing that just EEN can have such a big impact. It was literally the very first day that my daughter switched to the all EEN diet that her pain went away. Pretty incredible. My daughter went from 80 to 92 lbs in the first 4 weeks!

I think part of my difficulty with things is that she was diagnosed fairly quickly, leaving little time to process...

She had daily diarrhea last spring - but just in the mornings. We saw the pediatrician who thought it could be a mild IBS, but then, like magic, it went away during the summer (probably due to lack of stress?). Then, as soon as HS started in the fall - pain. No diarrhea though. Within a few weeks of the on and off pain, we got an ultrasound. We were sent immediately for a CT scan. The next day she saw a ped. GI and was diagnosed (she had more scopes/tests in the next few days, but the GI was 99% sure of Crohn's + a fistula). She was put on EEN that very day. It was all very sudden and unexpected.

I heard back from the doc and here's what she recommended for a few days to see if my daughter's stomach pain goes away:

* hold her iron pills for a few days
* more Ensure (1500 cal.) & less food (200 cal.)
* take Prilosec
* ok to start the 6-MP (we planned to start today since we were out of town last week and didn't want to start when we were 9 hours away from home), so this is a whole new adventure....
* more tests (of course): CBC, metabolic panel, sedimentation rate, C-reactive protein, Calprotectin, C-Diff (i'm not even sure what half these are)

I'm going to check out the diet link you posted, PDX - thanks.

I love this group - what would I do without you guys and your collective experience (although I'm sorry you have the experience). Thanks so much for taking time to respond.

 

[my little penguin]

Glad you have a plan
Don't worry about not knowing the test pretty soon you will be an expert in your kid
The pef will ask for bloodwork for some other reason and quickly you will rattle off
Please add CBC cmp ast alt etc... Since it will save her a stick later
It's new now give yourself time

 

[crohnsinct]

LOL! MLP! So true! We were in ped's office for T pre dx and he ordered a bunch of tests and I asked him to add Fecal cal and he said, "what's that?" I gave him a crash course on the test and ever since that day he shows me the lab slip and says, "anything else?"