What to do for flare?

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Chris_k

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Jul 11, 2015
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Hi, my son has Crohn's but hasn't gotten a real diagnosis because my son's presentation is not classic. Scope revealed massive inflammation. He was put on Entocort for 2 months, followed by Pentasa. Entocort worked great for 10 days, after that not so much. We then tried antibiotics, which helped for a long time, but now have lost effectiveness. Now nothing works, and our local doc won't prescribe any more Entocort, Pentasa, or antibiotics. Just wondering how Crohn's flares are usually treated. We live in a country with very poor GI knowledge. Our pedi GI's main approach is to get us to accept no growth and pain as normal.
 
Can ask which country so I know who to page, there are member on here for all round the world.

Are you able to get a second opinion?
 
Hugs
Entocort doesn't fix the whole gi tract prednisone does sometimes but sometimes Iv steriods are needed and the minute it's stopped them the flare restarts and you need to have built up the levels of maintence meds.
Pentasa is basically like a cream it only treats the top layer .
Crohns affects all layers
Typically docs would use pred plus immunosuppressants such as 6-mp, Aza and methotrexate. Let the immunosuppressants build up and then stop the steriods
If disease is severe then steriods plus biologics ( remicade and humira)

Formula only ( pediasure, kids boost , peptamen Jr, peptide etc...)
With no other food can be used as EEN ( exclusive enteral nutrition) to treat crohns in kids
It can heal the gut similar to steriods but once food is introduced symptoms come back
EEN will help with growth as well

But realize it takes 6-12 months for growth to resume after steriods are stopped

Big hugs
 
We live in Singapore.
I'm afraid we are going about this all wrong. He was on Entocort for a few months but the docs here were super reluctant to use Entocort. He was also on Pentasa for longer. We were told to wean even before starting either of these. With antibiotics we were able to wean from both and he had a good couple of months. But now symptoms have returned. I am wondering if he needs Entocort again. We never did elemental formula even though getting enough calories is a major struggle for him. The recent flare caused weight loss.
 
It's confusing, but a flare is more a brief fall out of remission (ie from stress) than symptoms from uncontrolled IBD. Not sure why IBD wasn't diagnosed with "massive inflammation". Did they test for (new) C diff infection? Or test for Celiac disease? In the short term, you can try to boost nutrition with Ensure, try low-fiber diet, discontinue ibuprofen use, add a multivitamin, try a probiotic (VSL#3 is available online or at many pharmacies but has to be asked for, not on shelves, but particularly good for colitis).
 
I suspect increasing fiber may have made things worse for him. He's unusual in that he has constipation, not diarrhea, so we try higher fiber sometimes when he seems more stopped up. Maybe it backfired. He's already on many supplements including probiotics (Mutaflor, which is a really high quality one). We can't test for celiac because he's been off gluten for 5 years.
 
If low fiber and gluten and dairy free, what sorts of foods do you recommend? If left to his own devices, he'd eat just meat and fruit and maybe rice.
 
Unfortunately crohns needs treated with meds
Diet only typically is not enough in children since their disease tends to be more severe
Also not sure why he wasn't diagnosised woth massive inflammation present

Only EEN can be used as a separate treatment
Ds takes miralax daily to keep his stool moving and soft
He has constipation with crohns and since we tried higher fiber prior to dx per his Ped
He ended up with rectal prolapse from all the inflamed bowel

Can you get a second opinion somewhere?
Tagging Jane and Nick

Here is the crohns exclusive diet
But it needs to be supplemented with at least 50% formula

http://www.crohnsforum.com/showthread.php?t=71686
 
We are in healthcare limbo. Really awful local docs. My son just had a poop with fresh red blood and docs won't treat him until we submit a sample to a lab that can detect the blood. But their diagnostics are like 20 years behind here so they never find anything. I took him to another country to see a world class doc for scope. Now local docs refuse to accept the report claiming it may be fabricated. It is absolute hell here.
 
Thanks. I can try that group. We've seen two of the docs who are advisers to the society. One of them refused to scope my son saying abdominal pain is really ok--something he just needed to learn to live with. That's what we've got for help.
 
Chris_k,

Wow - amazing (as in amazingly bad) that he said that abdominal pain was OK!

My daughter had really severe Crohn's - she was put on Pentasa but weaned herself off. Diet and supplements with lifestyle changes got her healthy very quickly, but we were radical about it. No sugar, dairy, potatoes, corn, inflammatory oils,or most grains (no grains at first).

Cod liver oil and turmeric helped a lot, vit. D, chicken livers ... (but we had a doctor to monitor/check levels to see how much vit. D to take and monitor progress).

There are so many resources out there. The doctor's/dietitian's dietary recommendations made her more sick. We followed our own diet based on what I read and what worked for her while the doctor helped monitor and find out what she needed (iron, vit D).

EEN would have been a disaster for us - the sugar and dairy would have worsened the inflammation (caused bad symptoms when she cheated). On the other hand, I know it has been as successful as some meds according to what I've read.

I wish you all the best in finding a new doctor - we were blessed to have one that let us experiment. And don't wait to start making some changes yourself - there is so much that you can do and very good reason for hope!
 
So glad to hear your success story. We have tried grain free. I'm not sure if it helped our not. Actually my son improved a lot for a while and that's when we weaned the Pentasa. But now symptoms are back. Thank you for the encouragement--EEN really scares me because I know my son has a dairy sensitivity. We already don't give sugars. All homemade food 100%. Vit D is also on our list to try. He had taken it for a while a year ago but I was concerned he wasn't converting it and it was pooling as 1,25 OH. We are supposed to retest and then will resume the Vit D. Thanks for the reminder.
 
And yeah our GI docs have been amazingly bad. I had one doc say to me once, "who knows how the body works?" You seriously can't make this stuff up. It's that bad.
 
Dairy free formulas
Exist
Bright beginning is soy based
e028 splash
Elecare
Neocate

Despite sugar and other stuff formula when used as EEN does work
When taken food as high sugar etc not so much

Many studies around the world have been done to prove EEN works but only when you keep unrestricted food to less than 20% of calories

Restricted food like crohns exclusive diet ( minimal sugar no starches no milk etc..)
Also works but it's 50-50
50% restricted food
 
Thank you for the link to diet. He already eats that diet, and has been for years. He was paleo for a long time, and the only grain we allow is rice. We have been so strict about this. 99% of his food is cooked at home because we can't be sure what's in restaurant food. He doesn't eat packaged foods. So even with this, the inflammation came back. :(

By the way, I remember now why he doesn't have an official diagnosis. All his inflammation makers, CRP, ESR, cal protectin, have been normal. Our docs ignore the symptoms and dismiss the scope because of these tests.
 
Ds had completely normal blood work as well
He was only dx by scope
Can you go back to the original Gi who scoped him
For treatment a few times a year ????
Not ideal but ...
 
Yes we may have to, but he's not in our country so we do Skype consultations. Very expensive and not covered by insurance. My main objection to that doc is he has a limited approach and wants to throw more and more steroids and immunosuppressants at this.
 
Immunosuppressants are typically the next step up
That isn't out of the oridinary at all
Typically the step up therapy is
5-Asa (Pentasa asacol etc)
Then immunosuppressants ( 6-mp/Aza/ mtx)
Then biologics alone or in combo

The large majority of kids need immunosuppressants at a bare minimum
And most move on to biologics


Top down therapy starts at biologics first
 
My son also has Lyme disease and other infections. Antibiotics had helped but this particular doc was not open to infectious causes.
 
Lyme doesn't cause crohns
I will say kids dx below the age of 10 are more likely to have an immunodefeciency
This requires extensive genetic testing
See link here

http://geneticslab.emory.edu/tests/MM160


And then the treatment for crohns or other diseases that mimic crohns are vastly different

Testing takes months to get results in the US
 
Oh and antibiotics tend to have some anti inflammatory properties so they tend to help some but can't be used long term
 
Inflammatory bowel disease (IBD) is a multifactoral dis- ease caused by dysregulated immune responses to commensal or pathogenic microbes in the intestine, resulting in chronic intestinal inflammation. An emerging population of patients with IBD younger than 5 years of age represent a unique form of disease, termed very early onset IBD (VEO-IBD), which is phenotypically and geneti- cally distinct from older-onset IBD. VEO-IBD is associated with increased disease severity, aggressive progression, and poor responsiveness to most conventional therapies. Further investigation into the causes and pathogenesis of VEO-IBD will help improve treatment strategies and may lead to a better understanding of the mechanisms that are essential to maintain intestinal health or provoke the development of targeted therapeutic strategies to limit intestinal inflammation and promote tissue repair. Here, we discuss the phenotypic nature of VEO-IBD, the recent identification of novel gene variants associated with dis- ease, and functional immunologic studies interrogating the contribution of specific genetic variants to the develop- ment of chronic intestinal inflammation. (Cell Mol Gastro- enterol Hepatol 2015;1:462–476; http://dx.doi.org/10.1016/ j.jcmgh.2015.06.010)
Click to expand...

From

http://cmghjournal.org/article/S2352-345X(15)00122-8/pdf
 
Do your kids have behavioral problems? My son's bowels improved with steroids but his behavioral problems got worse. He's sort of ADHD and autistic.
 
Steriods can cause mood swings even in a kid with no behavioral issues
Add in feeling bad tends to make behavior worse


No real behavior issues here
Just moody with pred especially during weaning
 
My kiddo is DEFINITELY moody with steroids - especially at high doses. Cries easily and gets frustrated easily. However, she's always been fine as soon as she got off steroids.

No other behavioral issues here.
 
My son has behavioral problems when not on steroids because his stomach takes 8 hrs to empty so he feels horrible most of the time. But then when he takes steroids his behavior is also bad, not moody, just more autistic, more hyperactive.
 
Does he take meds to improve the delayed gastric emptying ?
I know if Ds doesn't take meds then he can't get enough calories
Even with meds he needs formula to make up the calories since his stomach empties so slowly .
 
No he doesn't. What meds help with that? The GI who
Scoped him said we'd treat slow gastric emptying later. I guess it's time to schedule a follow up. I'll ask our local
Doc in the meantime.
 
We also suspect diabetes (he has many symptoms but docs refuse to order test). I noticed diabetes can sometimes cause gastroparesis. Some of the tips I've read on treating gastroparesis say moderate exercise, and I notice my son does better on days when we go biking or do other outdoor activity.
 
Not exactly - my daughter's pillcam also showed a delay in stomach emptying but a pillcam is used much less often to diagnose Gastroparesis. A 7-8 hour delay (if it's sitting in the stomach for that long) is quite a major delay and should be investigated.

Medications like Erythromycin, Relgan and Domperidone are used often to treat Gastroparesis in the US.

Gastroparesis can also cause pain and nausea after meals, so treating it might really help his symptoms.
 
Also do you limit veggies? I usually try to force veggies but I read the fiber can create bezoars and my son definitely acts like he's got something stuck in his gut.
 
No pill cam delay is not the same thing
You would still need a gastric emptying test
Which is a small radioactive egg and toast which measures how much of the food is left after certain time periods up to 4 hours

It's exercise right after eating
The movement causes the stomach to empty faster

My kiddo stopped gaining weight and flat out refuse to eat even s small amount due to severe nausea and pain


Diabetes can be found in urine or simple blood test
It can be caused by prolonged use of steriods
Any steriod use in diabetics can be very tricky since steriods can cause your blood sugar to go up and down
 
Yes..we mostly do soups for my daughter. Spinach soup tonight, for example. Also no raw veggies at all!

She also gets formula through a feeding tube every night, so we don't worry too much about having to limit veggies since we know she is getting the nutrients she needs.
 
No raw veggies here either
Well cooked veggie typically mushy and only certain ones
Same with fruit - canned peaches /pears in juice
Plus melons ( watermelons/cantaloupe ) and bananas
Only cooked apples

Soups here as well
Potato purée soup with zucchini is a favorite at our house
 
SmartPill is an ingestible capsule that measures pressure, pH and temperature as it travels through the gastrointestinal (GI) tract to assess GI motility. The SmartPill motility monitoring test can be performed at a clinic or physician’s office to evaluate motility disorders like gastroparesis (a condition in which the contents of the stomach empty too slowly) and chronic constipation.

SmartPill also minimizes patient down-time by allowing patients to resume most normal daily activities while data are being collected by the capsule. SmartPill eliminates radiation exposure and is the only motility test that provides a complete transit profile of the GI tract.
Click to expand...

http://www.givenimaging.com/en-us/Innovative-Solutions/Motility/SmartPill/Pages/default.aspx

It seems like a pillcam can be used to monitor for Gastroparesis, but in the US, the gastric emptying is what is used to diagnose it.

For what it's worth, the gastric emptying test is quite easy - no prep involved and the child has to eat and then they take pictures for 4 hours - nothing too invasive or painful.

Exercise after eating - even just moving around, versus sitting or lying down, does seem to help my daughter too. However, by itself it would not do enough, she definitely needs medications to help speed up motility.

She also completely stopped eating because of severe nausea, pain and fullness. She lost a total of 23 lbs and was hospitalized several times because she was severely underweight. She eventually needed a feeding tube to get her weight back up and still uses it.

Gastroparesis is sometimes associated with diabetes but can also be associated with Crohn's or just idiopathic.
 
This sounds like my son. If left up to him, he'd never eat. He forces himself to eat and even then he eats so little he hasn't been growing. He's under 20ieth percentile in height and weight but the docs here say they are only concerned if growth is below 1%. It takes him over an hour to eat a few teaspoons of food but docs here think that's normal for kids.

I wish we could do soups but my son is very picky. Won't touch soup at all, same with veggie juice or even fruit juice. Really he needs the formula but he's so picky I know he won't even try it, so we'd have to have a feeding tube.

I'll see if we can do the delayed gastric emptying study.
 
My daughter has had several different kinds of feeding tubes. We started with an NG tube - which goes to her stomach - and she inserted that every night to do feeds and pulled it out before school, so no one at school had to know. She initially did well on it, but eventually the gastroparesis got bad enough that she could not even tolerate formula through her stomach.

Then we went to an NJ - naso-jejunal - tube, one that goes from the nose to the small bowel. She HATED that because it had to be in all the time (since it is placed by radiology and cannot be placed outside the hospital). It was also thicker and very uncomfortable for her. However, she did tolerate the feeds since they were going to her small bowel and bypassing her stomach completely, and did very well on it - gained the 20 lbs or so she had lost.

Since it was clear she needed a feeding tube long-term, she then had a gastro-jejunal (GJ) tube placed surgically. She still has that and uses it for overnight feeds. Recovery was not fun, but most kids do just fine and recover within days. We are very very VERY glad she still has a tube, since there is no way she could really live without one.

Most doctors would start with an NG or NJ tube and then move on to a more permanent tube if necessary. However, the gastric emptying test is the best place to start because if he does have Gastroparesis, it is possible that motility medications will help enough that he may not even need a tube.

Feeding Tube Awareness is a great website with a very informative Parent's guide.

Good luck!!
 
Hi everybody, I just got calprotectin results back. Over 300. :( This is so awful but at the same time, at least this might be the wake up call for his doctors here who have let his disease get so bad it's taken over his entire colon. He was diagnosed with pancolitis last year by an American doc, but problem is we can't see American doc all the time because he charges $500/hr and it's all out of pocket and he can't prescribe meds in my country.
 
Hi Judy,
I just saw the details in your tag line (finally not on a phone). No meds currently? Natural methods? I'm really intrigued. Can you please tell me how you did it? Is your daughter still on grain-free? My son was on a grain-free diet for a long time. He got better (with a lot of other help), and we started letting him eat rice again. And that may have been when things slowly started going bad for him. We've since cut out all grains again, but it's hard because he eats such a limited number of things.

My son has been taking curcumin (tumeric) for a long time, as well as Cod Liver Oil, and a lot of other supplements. He was on Vit D for a long time too, but we stopped that a while back and have added it back in.

Chris


Judy1000 said:
Chris_k,

Wow - amazing (as in amazingly bad) that he said that abdominal pain was OK!

My daughter had really severe Crohn's - she was put on Pentasa but weaned herself off. Diet and supplements with lifestyle changes got her healthy very quickly, but we were radical about it. No sugar, dairy, potatoes, corn, inflammatory oils,or most grains (no grains at first).

Cod liver oil and turmeric helped a lot, vit. D, chicken livers ... (but we had a doctor to monitor/check levels to see how much vit. D to take and monitor progress).

There are so many resources out there. The doctor's/dietitian's dietary recommendations made her more sick. We followed our own diet based on what I read and what worked for her while the doctor helped monitor and find out what she needed (iron, vit D).

EEN would have been a disaster for us - the sugar and dairy would have worsened the inflammation (caused bad symptoms when she cheated). On the other hand, I know it has been as successful as some meds according to what I've read.

I wish you all the best in finding a new doctor - we were blessed to have one that let us experiment. And don't wait to start making some changes yourself - there is so much that you can do and very good reason for hope!
Click to expand...
 
Chris,

She's totally med-free, all natural, and manages her own health at college. She just went to Guatemala on a mission trip - no problem (lived on beans, veggies, and fresh fruit).

We went totally grain-free until she was better. Even now she limits rice - does better with buckwheat and quinoa. She eats neither corn nor potatoes. We avoid anything labeled "gluten-free" and try to stick to real food. We gave her organic bone broths, organic eggs (sometimes she limited these), raw and cooked veggies. and fruits. She did a lot of chewing/processing. We are thankful for blenders, juicers, and food processors.

I don't have Crohn's, but I'm living on juice, veggies, and green smoothies these days - there are some that go down easily and taste like cake batter (frozen fig/spinach/banana/unsweetened almond milk). What we've done for our daughter has helped the rest of us with other inflammation issues, allergies, and general health.

One of the number one things we did was reduce stress. She would stop eating for at least 30 minutes if there was any stress at all at the table. She gave up violin competitions completely along with almost all of her school subjects (she kept up with Latin and made the rest up later).

I'm writing more about what I did and putting up info to try to help to others on www.quenchingcrohns.com. Also, feel free to PM me. If there's anything specific you want to know, I'll be happy to write about it and share what I know!

Judy
 
my little penguin,

If the question was for me, my daughter has had regular bloodwork. It has all come out great. Her doctor has not recommended scopes at this time - perhaps in the future.

At her last checkup, the doc did not recommend bloodwork, but we will probably get it tested in the near future anyway.

I know things can develop undetected and that it is important to monitor.

And I just wanted to note - even though we don't use the drugs, we are certainly glad they exist. We can never be 100% certain we won't need them in the future (and so many other people are helped by them!).

However, she is thriving physically, emotionally, and spiritually as far as we can tell.

Judy
 
Judy1000
But has she had a clean scope after starting the diet ?
Reason being bloodwork can be completely normal and kids can be asymptomatic
More than a few folks here have kids who are like this
 
Hi Judy, Thanks for sharing your daughter's story. Was Pentasa the only drug your daughter used to treat the acute Crohn's? My son's inflammation is really awful right now, and we need to do something to get it down fast. My hope is one day he can get off the meds, and he had done so well on grain-free plus antibiotics for months. But we let him have rice thinking he was better, and maybe that's what caused him to get worse again. He's only 5 and very picky, completely unwilling to drink juices, shakes, or smoothies. Some people have mentioned EEN or PEN, but I don't think my son will drink it. He will have to have a nasogastric tube if it comes to that. You are absolutely right that stress makes it all worse, but unfortunately, we live in a very stressful big city with stressful jobs that we need to pay all the medical bills. And the worse he gets, the worse all our lives get, and it's a vicious cycle.
 
Chris,

Only Pentasa (unless you count short-term treatment of an acute yeast infection with an antifungal). She briefly took iron supplements. We gave nutritional supplements.

Once we found that it was Crohn's, we aggressively took measures along a natural route and eliminated symptoms fast enough that the doctor, though a little nervous about it, was willing to let us limit it to that.

She had massive symptoms. She has none now.

Stress/$ are tough subjects.

I cried at the CVS (embarrassing, but I couldn't help it) when I found out how much the Pentasa cost. We didn't have the money. Someone anonymously gave us $1000. I ended up getting a part-time job.

We prayed a lot. We visited shrines (we're Catholic). We had friends and family praying for us. That was good.


my little penguin,

This forum has been a big help in making me aware of the possibility of active disease with no perceivable symptoms. I am grateful to know about that. Crohn's seems to be sneaky, unpredictable, and highly individualized.

However, what we've been doing has worked from the beginning and has consistently given us good results.

She had huge symptoms before - hair falling out, menses stopping, cramps, sweats, fever, incredibly pale, fissure, stools that looked pretty much like the dinner plate (no absorption/breakdown), etc.

It has been years without any of those problems.

We are going to go with the doctor's recommendation not to do a scope for now, but are keeping it in mind as a possibility for the future - even if no symptoms are present.

I don't want to mess up the intestinal flora, etc. unless there is a strong reason to do so. Medical opinion seems to diverge on the subject - another reason I love this forum. It's good to learn about other perspectives and experiences!

Judy
 
We've been at this aggressively for 3-4 years. I've done a lot with naturals and diet, but nothing seemed to work. It was when we gave antibiotics that we saw improvement. But even then, backsliding after 4 good months or so. My son's symptoms aren't obvious--mostly constipation (even with bowel movements, which is something hard for most doctors to grasp), pain, and no appetite (which doctors here think is totally normal, mostly because lots of people have gastro problems here that go untreated).
 
Chris,

I wonder how much is related to the Lyme Disease (which can mask as Crohn's). We know someone who's on the cutting edge of designing his own treatment in addition to working with doctors in a major US city (he makes his own IVs) I'm not sure he's actually supposed to be alive (extreme and unusual case - long story). He told us to check to make sure our daughter didn't have Lyme disease - it can cause similar symptoms. He does a similar diet and detox stuff (cilantro and other things - I'm not sure what).
 
Interesting your daughter couldn't eat potatoes. Could she eat sweet potatoes? Do you think white and sweet potatoes have the same effect?
 
I have been treating my wife for Lyme, Bartonella and babesia. She only has some Lyme left now. She never had Crohns symptoms but I have repeatedly read about others that do.

My primary method of alternative treatment (Rife frequency treatments) targets the specific pathogens involved in either disease. The disease doesn't matter as it is typically the pathogens that cause the symptoms if not the disease itself.

Lyme or Bartonella have been reported to cause Crohns like symptoms.

One common pathogen to both my Crohns and others Lyme disease is mycoplasma pneumonia. Basically, anything that impairs your immune system like Lyme pretty much leaves you wide open to pick up other bacterial or viral infections that can become chronic. It's difficult to ferret out the specific ones for an individual, but it can be done over time.

Good luck.

Dan
 
Yes, yes, my son has Bartonella too. And yes, I agree mycoplasma can cause symptoms like Crohn's which is why my son had improved on clarithromycin before. I swear people here are way smarter than the docs. Only one doc told me about the use of macrolides in treating Crohn's. And if it's Lyme and co-infections, then using steroids will probably make it worse, right?
 
Chris,

She's fine with sweet potatoes. I love making them into oven fries (peel if you need to, toss in coconut oil and cook at 400-425 degrees F until nicely browned). Yum.

Different plant family, different effect.

Works great with butternut squash too (though it is a pain to peel!).

Judy
 

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