No Flare but constant urgency

[ewalls28]

First I apologize for posting if this is something already in the forum but the search function is not working for me. However, I am totally at a loss. My daughter, 17 diagnosed Crohns, and recently went through a flare that had her in the hospital for a week. She's been out for about 3 weeks and no pain in intestine but shes still having frequent urgency. She eats and 10-15 minutes later she has really bad urgency. She had been on Humira but while in hospital it was determined her body was not responding to it so took her off. Now she is only on Colazol and Prednisone to control flare. She only eats whole food that is not processed and nothing that she knows is inflammatory. We are at a complete loss as to what may be causing urgency this bad. Just wondering if anyone has experienced this in their children, or themselves perhaps. She is up several times through the night and cannot make it through a day at school without issues. She has also lost a considerable amount of weight, most likely due to the urgency, which has us very concerned. She is scheduled to begin Entivio but waiting for scheduling. Any thoughts would be greatly appreciated.
Eric
:sign0085:

 

[crohnsinct]

Sounds like she is most likely still dealing with inflammation. How much prednisone is she on and have you started a taper? Hopefully not as the Colazal won't holder until the Entyvio is started and Entyvio can take a while to kick in so she will need to stay on Prednisone for a bit.

Is the GI saying she is completely out of her flare? How did they come to this conclusion? Has she had a fecal calprotectin test? What was that value?

Is she having diarrhea with her urgency or can it be somewhat solid? Mucus? Blood? Is the weight loss since she left the hospital?

FWIW my daughter was just in a bit of a flare for two years (old GI didn't pay attention and called it IBS even though she has had Crohn's for years). She dealt with urgency that whole time. Our new GI told us about Small Intestinal Bacteria Overgrowth. Crohn's patients can often get this after a flare. I posted a quick primer on it here in the parents section maybe a week ago? Anyway, the symptoms pretty much mimic IBD with urgency being one of them. So if your GI is absolutely certain that she is healed then it could be that. Dairy products can exacerbate urgency during a flare and SIBO.

I am not a doctor but in my Crohn's mommy opinion and 10 years of experience, it sounds more to me that your daughter is not completely out of her flare and a call to the GI may be in order.

Is she seeing a pediatric or adult GI? When was she diagnosed? Where is her disease located? The reason I ask is that sed GI's don't usually use Entyvio first as Remicade or Humor have better success rates and Entyvio doesn't have a good track record with small bowel disease better with colonic Crohn's and best with U.C..

 

[crohnsinct]

Sorry, I hit send to soon.

In the meanwhile, you can consider Enteral Nutrition. These are shakes like Boost or Ensure. They are more easy for the kids to absorb during inflammation than food and this may help her get some nourishment while you sort out everything. If those don't work there are other more broken down formulas that could be used but Boost and Ensure taste the best.

Enteral nutrition is sometimes used exclusively to treat a flare and get inflammation under control instead of steroids because it is just as successful and has none of the risks and the added benefit of weight gain. For this the kids eat and drink nothing but the shakes and water for 6-8 weeks. During this time a maintenance med is started and then at the end of the 8 weeks there is a slow transition back to food and hopefully the maintenance med can take over.

Either way, 2-3 shakes a day could be helpful.

Oh and one other question, how did they determine her Humira wasn't working? Did they take a levels and antibodies test? If they did, depending on what they found (good level, non responder or antibodies), this could be the reason the GI is suggesting Entyvio.

 

[ewalls28]

So, a lot to cover here but thank you for your response. I'll try to go in order. Prednisone is 40Mg/day, GI hasnt Officially declared flare to be resolved, have been going by presenting symptoms, mostly the fact that she does not have pain while eating, generally no cramping and fever free. Mostly formed stool, no blood or mucus. But pain during the process. Yes, to weight loss since leaving hospital. She see's a Ped GI She was initailly diag in 2014, re scoped in Dec 2017 and confirmed. Humira levels were taken in hospital stay, high levels, no antibodies Dr determined was ineffective. With regards to ensure, have found it to have many inflammatory ingredients, we use Oragain Organic powder mixed with plant milk. Im sure Im leaving sometnig out....

 

[my little penguin]

Yeah that ^^^
Sounds like a flare for sure

I see she was on humira
Our GI won’t use entivyio on ped Crohns patients
Said they don’t see a good response they use Stelara instead
If the patient has already used remicade /humira

The rectum is last to heal so she could very well still have inflammation

Look into een and make sure the GI is aware
Of her middle of the night bm
This is red flag big time for flaring

Hugs

 

[crohnsinct]

I also questioned those inflammatory ingredients and was told that although it is counter intuitive and they can't explain it, EEN with these shakes works and my two girls both used them with awesome results. I had asked our RD about the Orgain shakes and she didn't have much experience with them but I have heard of others using them and as long as they are supplemental I think you are fine. If you wanted to try exclusive enteral nutrition, you might want to just get the RD and GI's approval.

I am a nutrition nerd and read lots and seek out dietician etc often. My girls are on anti inflammatory diets and do great with them but they have also been on regular SAD and also done fine with them. Bottom line is diet doesn't cause a flare or disease but could make a flare worse if you are already in one. Once healed you should be fine with most foods although for common sense reasons a clean diet is better for everyone.

So it really does sound like she is still flaring and I would give the GI a call and let them know. Especially since she is on 40mg of prednisone.

MLP is right the rectum is tough to control and does affect urgency. My daughter has an especially rebellious rectum. There are other things they can do specifically for the rectum such as steroid suppositories or enemas.

Sounds like your daughter just lost response to Humira and thus the switch to Entyvio. My nephew was a non responder to both Remicade and Humira. He went to Entyvio but it was a very long haul to remission. It did eventually work and now he is doing great. Where was your daughter's disease located?

 

[my little penguin]

We didn’t use ensure
Ds was on semi elemental formula
Peptamen jr
And now drinks elemental amino acid based since it more broken down
Neocate jr
And has for years
Scopes are always clean or near clean

Organic version would be kate farms
Sole nutrition and semi elemental

https://shop.katefarms.com/products/core-essentials-5peptide-1

Though my kiddo couldn’t stand the taste
Which is funny considering he drinks elemental formula

Een heals the gut as well if not better than steroids
Definitely still flaring

 

[ewalls28]

thanks for all the great info. I actually have managed to get her in to see the GI tomorrow. Entivyo starts next Wednesday. She was doing masalomine(sp) suppositories but she felt they were basically coming right back out. I am encouraging her to start them again to try and at least calm the spasms. Will ask the GI about steroid suppository. I feel if we can just calm the urgency she will begin to gain weight.

 

[my little penguin]

Typically the weight loss is the inability for the body to absorb nutrients
Due to inflamed small bowel
Nothing is absorbed in the large intestine

Whole Foods require a healthy bowel
Polymeric formula (boost ensure) are whole protein chains
So easier than whole food to digest but not by much

Semi elemental formula (peptamen peptide )
The whole protein chains are broken down into smaller pieces so less of the small intestine needs to be healthy

Elemental formula (vionex, neocate jr, elecare) are amino acid based
The body normally breaks down whole food into amino acids to be used.
Since elemental formula is nothing but amino acids (no intact proteins )
The body only needs a few inches of healthy small intestine to absorb
Also no allergens milk wheat egg etc... in the formula

Most kids with Crohns need extra calories to gain weight
And a majority need at least semi elemental formula
If not elemental formula
To heal and gain weight

Entivyio takes up to a year to work
And has minimal evidence of being successful with Crohns
Very successful with ulcerative colitis though
So please ask for bridge therapy

We went through 6 months of waiting for Stelara to start working
Had to stay on steriods the entire time and now Ds has adrenal insufficiency
So please be aware

 

[Maya142]

Is she lying down once she does the suppository? My daughter had to do them before bed and then would just read until she fell asleep. She tried not to go to the bathroom after. She found them painful (hers were steroid suppositories for fissures) but they stopped the bleeding and pain within a week.

And they also helped with urgency, though I wonder if enemas would your daughter more since they go higher up in the colon.

Our GI is also not a fan of Entyvio. She uses Remicade, Humira and then Stelara, usually in that order. Has your daughter been on Remicade? I would try that if she hasn't, because if she responded to Humira for a while, it is likely that she will respond to Remicade. And it will work faster than Stelara.

As for formulas, I'd try Peptamen for EEN. Or Pediasure Peptide. Those are easier for the gut to digest - semi-elemental, as was said above. My daughter was able to drink Peptamen. It doesn't taste great but she thought Orgain was worse :lol:.

 

[ewalls28]

@Maya, It's not that she wasn't responding to the Humira. She had been on it for a few months and the levels of Humira were high and she had not developed anti bodies to it so the dr deemed it was not being absorbed thus not being effective. With regards to suppositories she is reluctant to use simply for the reason of going right after and thinking they're not effective. We have been doing Elacare Jr (4 scoops 4-5 times daily in 5oz plant based milk) for almost a week and for now it seems to at least be averting any further weight loss yet with no weight gain at this time either. I am giving it a few more days to see if she starts gaining. She starts entyvio today so we will see how she does with that. I appreciate everyone's feedback and will try to post updates as possible.

 

[my little penguin]

On the elecare
To mix
Use a kitchen gram scale - not the scoop since concentration can be an issue
Also ask the GI about using plant based milk vs water
Again concentration of the formula can cause issues
The back of the can should list an exact gram amount

 

[ewalls28]

Thanks for the heads up. Fortunately we have a kitchen scale.