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H's Brother

my little penguin

Moderator
Staff member
Flax causes abdominal cramping
As long as he is on pred you will probably have mood swings
And have constipation
Especially above 10 mg
Once off pred the miralax should be able to keep up
My constipation kiddo
We avoid food that cause cramping like flax
And anything high fiber
It’s a learning curve

116 means he is still inflamed but maybe working towards healing
So still painful

As far as pain we use the LEGO face pain scale
It has numbers and faces
So Ds rates it by that

https://www.lifeofdad.com/more-proof-that-everything-is-better-with-lego/
 
Flax causes abdominal cramping
As long as he is on pred you will probably have mood swings
And have constipation
Especially above 10 mg
Once off pred the miralax should be able to keep up
My constipation kiddo
We avoid food that cause cramping like flax
And anything high fiber
It’s a learning curve

116 means he is still inflamed but maybe working towards healing
So still painful

As far as pain we use the LEGO face pain scale
It has numbers and faces
So Ds rates it by that

https://www.lifeofdad.com/more-proof-that-everything-is-better-with-lego/
We use that chart too! It's inside our kitchen cupboard along with the "choose your poo" bristol chart with illustrations.
No one thinks it's odd that it's in the kitchen, lol.
Ok. No flax....ugh.
Unfortunately, 116 is going to be our baseline # as GI never ordered fcal before or near scopes. This is his first one. And I had to get it through GP. But that's another story.
Thank you for the Pred info, had no idea about it causing constipation. It will be life or death before I say ok to it again.
Not being dramatic.
 

Maya142

Moderator
Staff member
We don't have constipation with Pred...I suppose it depends on the kid. And for us, mood swings are only at high doses - 25 mg +. By 10 mg, they are gone.

But pain itself can cause crankiness and mood swings. Over time, he will figure out how to use a pain chart. Sometimes what makes it is easier is matching each number to a function - like when the pain is 4, I can go to school and pay attention. When the pain is 6 I can go but I have trouble paying attention. When the pain is 8, I have to stay home but watching something/playing with something helps distract me etc. When the pain is a 9, nothing can distract me.

Something like that. You could go through the chart with him and talk through all the numbers. Also, little kids sometimes do exaggerate ;) so watch his behavior. If he says it's a 9 but he's not curled up in pain or is happily playing, then you need to re-teach him the pain scale, because that's not a 9.

Pain is very individual of course, but I'm just giving you examples.

We used a water bottle for water - M carried it around everywhere and she had finish it and fill it up a certain number of times. It made it easier to figure out how much water he is drinking. You could also do multiple bottles 1 at school and another at home that he has to finish.

116 does mean that there is some inflammation - mild - but could definitely cause pain. Was this FCP taken before he started Pred or after? Because if it was taken after he started Prednisone, then his true FCP is likely to have been much higher.
 
We don't have constipation with Pred...I suppose it depends on the kid. And for us, mood swings are only at high doses - 25 mg +. By 10 mg, they are gone.

But pain itself can cause crankiness and mood swings. Over time, he will figure out how to use a pain chart. Sometimes what makes it is easier is matching each number to a function - like when the pain is 4, I can go to school and pay attention. When the pain is 6 I can go but I have trouble paying attention. When the pain is 8, I have to stay home but watching something/playing with something helps distract me etc. When the pain is a 9, nothing can distract me.

Something like that. You could go through the chart with him and talk through all the numbers. Also, little kids sometimes do exaggerate ;) so watch his behavior. If he says it's a 9 but he's not curled up in pain or is happily playing, then you need to re-teach him the pain scale, because that's not a 9.

Pain is very individual of course, but I'm just giving you examples.

We used a water bottle for water - M carried it around everywhere and she had finish it and fill it up a certain number of times. It made it easier to figure out how much water he is drinking. You could also do multiple bottles 1 at school and another at home that he has to finish.

116 does mean that there is some inflammation - mild - but could definitely cause pain. Was this FCP taken before he started Pred or after? Because if it was taken after he started Prednisone, then his true FCP is likely to have been much higher.
Actually, that fcp was collected about 7 weeks into pred. 4 weeks at 40mg then 3 weeks of the taper so he would have been at about 25mg.
 
So, does anyone have an anecdote about how much of a decrease in fcp a kid would have with a course of Prednisone?
 

Maya142

Moderator
Staff member
My daughter had an FCP of 200 after being on 40 mg for 3 days, 25 mg for a week, 20 for 2 weeks, and then tapered by 5 or 2.5 mg every few weeks. I don't have a strict taper schedule because we did it based on how she was feeling.

But I can tell you this - she started Pred at the end of January. In April, her FCP came back at 200. At the time, she was on 12.5 mg of Prednisone.

Her GI said her true FCP would have been much higher but she didn't say how much. M's highest has been close to 500 (487 or something like that) so I guess that high???

She continued on Prednisone but refused to up it because of side effects (it had been prescribed for her arthritis). So she kept tapering Pred, slowly, and added Entocort (9 mg).

In early June, when she had her scope, it showed several ulcers at her TI and inflammation in her TI and cecum. At the time, she was still on 9 mg of Entocort.

I am SURE her scope would have looked much worse if she hadn't been on steroids. Her GI's goal was to keep her from getting worse, which is why she stayed on steroids till the scope.

Your son was on higher doses of steroids for longer (and he probably weighs a lot less than she did - she was probably 105 lbs then). So I would expect his FCP would have been a lot higher than 116 if it had been done before he started Prednisone.

It is impossible (for me) to say how high - you can ask your GI and maybe he can give you an estimate based on experience.
 

crohnsinct

Well-known member
So, does anyone have an anecdote about how much of a decrease in fcp a kid would have with a course of Prednisone?
Sorry no! You can not compare from kid to kid. For example. O was on prednisone for 4 weeks and had an FCP of 1500. 4 more weeks of prednisone and an increased and early Remicade infusion and her FCP was >2500....4 weeks later and 2 weeks off prednisone and she got a 16. intestines don't read the books!
 

crohnsinct

Well-known member
Also wanted to tell you that Naspghan has been tweeted a lot for the past week or so on pediatric constipation. I have them in my feed. I am crazy busy right now but the next time I have a few spare minutes I will try to grab the articles/studies etc.

Have you looked for the magical poop muffin recipe here? No idea what term you would search on.

Hang in there! You are doing great!
 

Maya142

Moderator
Staff member
Also wanted to add - my daughter cannot tolerate things like flax seed but for whatever reason can tolerate oatmeal. You can make oatmeal raisin cookies or cinnamon oatmeal muffins if he won't eat regular oatmeal.

Even when her Gastroparesis and Crohn's was at its worst, for some reason she could tolerate it. Her GI had no idea why since she had trouble with all other kinds of fiber. Could be worth a try.
 

crohnsinct

Well-known member
also wanted to add maybe it is time to seek out a registered dietician. This is their wheelhouse and they can be super helpful. An RD though not a run of the mill nutritionist. No disrespect but RD's are trained in helping medical issues and constipation is one of them.
 

my little penguin

Moderator
Staff member
Please be careful pediatric constipation
Is VERY DIFFERENT from Crohns constipation
Regular kiddo constipation
You give high fiber /whole grains /prunes /prune juice /pears etc...

With Crohns constipation things do NOT move because the intestine is danagesd
All of the above causes way more pain (doubling over )
Since the intestines still don’t move well from damage
 
Please be careful pediatric constipation
Is VERY DIFFERENT from Crohns constipation
Regular kiddo constipation
You give high fiber /whole grains /prunes /prune juice /pears etc...

With Crohns constipation things do NOT move because the intestine is danagesd
All of the above causes way more pain (doubling over )
Since the intestines still don’t move well from damage
I think that is what we're dealing with, Crohn's constipation. Honestly constipation was only a problem in the year leading to diagnosis and is now a huge issue.
When we were dealing with EEN and he was backed up into his small intestine (viewable on MRE) we had tried....prune juice, bran cereal, miralax...lots of pain.
We saw an RD back in September. It wasn't for constipation, but it was to see if our dairy free/ vegetarian diet was providing enough calories and nutrients (I was worried about his stalled growth).
She went over our meals. She said it was amazing. Couldn't actually give me any advice. This diet is full of fresh fruit and veg, whole grains, beans, blah, blah, blah.
I'm not sure fibre wise what we could change. We have soluable fibre like oats, bananas and applesauce. We have insoluble fibre like apples, flax, raw veggies. And we have peg powder drowned with 7-8 cups of water as recommended by GI.
I can't tell what exactly causes pain because there is this constipation overlay....so when the prednisone is finished in a few weeks we can hopefully separate the two issues a little.
 

Maya142

Moderator
Staff member
I can tell you that my daughter's constipation was REALLY bad at diagnosis - I'm talking Miralax, when that failed Milk of Magnesia and when that failed, enemas (you can guess how much she liked those :ybatty:. Though they do provide very quick pain relief).

She was put on Remicade at diagnosis. She had already been put on MTX a month or so prior for her arthritis and we upped it to 15 mg. Remicade was given starting at 5.5 mg/kg. She was also put on Entocort.

It took 3-4 infusions, but she started REALLY feeling better in terms of pain. And as she started feeling better, constipation got better. She stopped needing multiple capfuls of Miralax and cleanouts every so often. Stopped needing enemas.

So it may be that MTX will kick in and he will feel a lot better. Though I would have expected him to feel a lot better on Prednisone since that is supposed to get rid of the inflammation. And less inflammation = less swelling in the intestines = less constipation = less pain. At least that is how our GI had explained it to us when I asked how Crohn's could cause constipation.

She said the other way is when the intestine is damaged (which I think my little penguin was referring to above), and you have scar tissue causing a stricture. In that case, fiber can cause a LOT of pain and even an obstruction/partial obstruction.

Did you see any improvement in the constipation on the higher doses of Prednisone? Because if you did, then I would guess it's inflammation related. And either MTX needs more time to kick or if it's been 8 weeks, then maybe MTX isn't the right med for him.

If you didn't see any improvement on the Pred, then maybe it's just slow motility and he needs more laxatives. When M's constipation was really bad, our GI said that some kids with really poor motility just need more than Miralax. It's not ideal and GIs prefer using Miralax but sometimes it's just not enough. She said there were kids who needed Milk of Magnesia daily.

And then there were kids who needed Dulcolax every other day. And there were kids who need enemas daily and so eventually got cecostomy tubes.

It really just varies - depends on how bad the motility is. It's possible he just needs more Miralax for a little while till his gut calms down.

It's possible you need to do a low reside diet and cut out fiber, so it can pass through the intestines more easily.

Unfortunately, it is just trial and error. But I would definitely reach out to your GI and talk to him and ask what he thinks. You can also come up with a plan for managing the constipation for now.

We came up with 2 capfuls of Miralax daily, if that didn't work, then Milk of Magnesia for several days and if that didn't work and she was in a lot of pain, we'd do an enema. That took care of it usually. And once Remicade kicked in, we have been able to go down to 1 capful Miralax.

I hope this is somewhat helpful and doesn't confuse things further!!
 

my little penguin

Moderator
Staff member
FWIW Ds can not tolerate soluble fiber
Fresh veggies etc...
These cause pain due to slow gut from Crohns
A lot worse in the beginning to the point of rectal prolapse
Anything not healthy
White bread (or low fiber bread)
Fruit cups (mushy fruit)
No skins
No beans
No gassy veggies (broccoli cauliflower Brussels sprouts )
No lettuce
And
Biologics /miralax
 
C is considered to have failed Mtx and is moving on to Humira 40mg biweekly (after loading doses).

I am relieved to be done with methotrexate. This will be monotherapy.

I recall that the first few months of Humira were rough for H, so here's hoping that his body settles with it quickly. After the first few months, H never had a problem or side effect from Humira, just the pain of the injection of course and no talk yet of the new formula in Canada.

Anyway...I think this is good news.
 

my little penguin

Moderator
Staff member
Glad they are moving on so he can get relief
I know it took 5 months to see relief on humira for ds at the same age
Because they started at 20 mg first (he was slightly above max cut off)
Then after three month switched to 40 mg

Fingers crossed
The kiddo deserves to feel good
 
Glad they are moving on so he can get relief
I know it took 5 months to see relief on humira for ds at the same age
Because they started at 20 mg first (he was slightly above max cut off)
Then after three month switched to 40 mg

Fingers crossed
The kiddo deserves to feel good
Thanks, MLP. Good reminder that it can take awhile.
Induction is 160-80-40 so probably a good place to start. He's around 80lbs now.

He is still having pain when he eats and the constipation is gone (been done with Pred for a few weeks) but he now has pain at the anus/or rectum also when he moves a normal 4 Bristol.

Glad to move to biologics.
 
For those of you that use Humira, have you tried pre-medicating with Tylenol and Benadryl first? A infuses Hizentra, and before we tried pre-medicating she would scream in pain the entire infusion. Now she only feels a slight burn/itch. Not sure if it'd help for Humira but I wish I'd thought to try it sooner for A.
 
For those of you that use Humira, have you tried pre-medicating with Tylenol and Benadryl first? A infuses Hizentra, and before we tried pre-medicating she would scream in pain the entire infusion. Now she only feels a slight burn/itch. Not sure if it'd help for Humira but I wish I'd thought to try it sooner for A.
That truly sounds terrible for A. I'm glad you found something that works.
I've never thought of trying that, but I will try it on H. As far as C goes, I think he needs to get used to it first and then we can see what helps him. They are all so different.
 

Maya142

Moderator
Staff member
It's the preservative in Humira which lowers the pH which makes it burn. So pre-medicating won't help. We actually did pre-medicate for a while for my older daughter because she would have an itchy injection site reaction after the shot. The Benadryl prevented the injection site reaction but not the burning of the shot.

They have removed the preservative from the new formulation of Humira and people in Europe say it doesn't burn at all. It's supposed to be released in the US in July this year I think, just for pediatric patients.

I wonder why Benadryl and Tylenol work for your daughter DanceMom. That is very interesting. Maybe she was having some sort of reaction to something in subq IVIG and that's what made it burn???
 

Maya142

Moderator
Staff member
Pilgrim, I'm SO glad your son is trying Humira!!! And that he's getting the adult dose.

The 4 shots is pretty brutal - my daughter was 17 and she found 4 at once hard. But once you've done 4 and then 2 shots, one shot every two weeks or every week is not so bad.

The loading dose really helped Humira work faster for her. The first time she was on it (no loading dose) it took a total of 6 months to work!! We had to up it to weekly and add MTX before it did anything.

The second time, with the loading dose, it took 2 months or so. Good luck!!
 

my little penguin

Moderator
Staff member
Yep same here we premedicated due to injectionrwactions
Does not stop the burn

Ds was premedicated for every Ivig infusion so not sure if that burns without ....
 

crohnsinct

Well-known member
I am not surprised. Mtx does not have a good success rate with pediatric patients. Glad they are getting on top of it and moving to biologics. No experience with Humor here but wishing you lots of good luck! Onward and upward!

Curious...how did they decide he was to responding? Did they pull an fcp or just symptoms?
 
I am not surprised. Mtx does not have a good success rate with pediatric patients. Glad they are getting on top of it and moving to biologics. No experience with Humor here but wishing you lots of good luck! Onward and upward!

Curious...how did they decide he was to responding? Did they pull an fcp or just symptoms?
You probably won't be surprised to hear this...
At the beginning when he prescribed mtx I asked about top down therapy and he said that they didn't do it that way in his province (health care is run individually, province to province). Then he prescribed a pretty high dose of mtx, 25mg, plus shortly after he added a pretty high dose/course of pred (40mg for a month then taper).
So, I thought....wt heck?
Either that was all going to whip Crohn's into submission, or spectacularly fail. I think he was going for the quick(ish) fail.
So, I did my research and found that Mtx requires 12 weeks to fail.
I called to request a change on week 13 and made my case that pain hasn't changed, and side effects were too much to continue with mtx. The steroids were also a fail.
Labs stayed the same throughout - unremarkable.
FCal was done too late to use as a marker.
I think biologics were the mutual but unspoken goal.
 
Pilgrim, I'm SO glad your son is trying Humira!!! And that he's getting the adult dose.

The 4 shots is pretty brutal - my daughter was 17 and she found 4 at once hard. But once you've done 4 and then 2 shots, one shot every two weeks or every week is not so bad.

The loading dose really helped Humira work faster for her. The first time she was on it (no loading dose) it took a total of 6 months to work!! We had to up it to weekly and add MTX before it did anything.

The second time, with the loading dose, it took 2 months or so. Good luck!!
I'm not looking forward to loading doses but have already decided to take him up to the nurses at the clinic to have them done by someone else.

2 months would be great for response, that is really encouraging.
 

Maya142

Moderator
Staff member
What are you using Pilgrim - the pens or the syringes?

I have always heard the syringes hurt less. My older daughter agrees the syringes hurt less because you can control the injection speed (she switched to syringes after years of using the pen).

My younger daughter is on another biologic for her AS which has the same preservative as Humira, and so it burns the same way. She has been using the pens with no issues, but we were sent a prefilled injection for one shot.

She HATED it!! Said it was awful and prolonged the burn. She did the shot herself in her belly and tried slowing it down but said it didn't help the burning and made it much longer.

Now we have gotten the pens again and she is so happy to be back to her beloved pens :lol:.

I had always thought the syringes were much better and my older daughter agreed.

But now I think it's very individual - just food for thought.

As for MTX - 25 mg is the highest dose generally given to kids for juvenile arthritis or IBD. So if that didn't work, then the move to biologics makes sense. Both my girls had side effects at that dose too (lower doses were ok for my older daughter).

How is your son doing now? Is he getting to school? Is he still in a lot of pain?? Poor kiddo - I bet he is so ready to feel better.
 
Maya142 that is the first time I have heard a positive comparison for the pen. I think when they are ready to do thier own, I will encourage them to try both.
C is going to school most days but still has days at home. Still skips meals sometimes due to pain. We did sign him up for soccer but wonder how it will even work! His endurance is low.
 

Maya142

Moderator
Staff member
I've seen it a few times on JIA pages - mostly teens who prefer to get it over with. But I was very surprised too. She REALLY hated the syringe!

Poor kiddo - I hope Humira helps quickly so he can get back to playing soccer.
 

crohnsinct

Well-known member
Awww...poor C. Once he gets closer to remission he should have his endurance back. Like we always say, it takes about a year to hit your stride. Thank goodness you have a responsive GI who isn't afraid to be proactive about things. Well, that and an experienced mom:wink:
 

Maya142

Moderator
Staff member
I want to add - when M's Humira kicked in in 2 months, she was not on monotherapy. She was on an immunomodulator too.

I really do believe that helped because the first time she was on Humira, it didn't do anything at all till we had added MTX and upped the dose to weekly. And that whole process took months. Three months of Humira every other week, then switched to every 10 days. After three months, we made it weekly and add MTX. It took a full 6 months after that to really kick in. So it took a total of 9 months for my daughter!

I can't believe we didn't abandon it but we didn't because there were so few options. I'm really glad we didn't because it was the med that worked best for M and she has been on every biologic now except Stelara.

The second time, we started off with it weekly and with an immunomodulator and did the loading dose. That's when it took only 2 months to kick in.

I know your GI wants to try monotherapy first, but wanted to mention it.

Good luck!!!
 
I wanted to update while things are still good!
School started this Sept. and C is adding a hockey program into his school day. His energy levels are pretty good,pain is low or gone most days and his last fcal was......16! He also took on a paper route. Still on Humira monotherapy 40mg biweekly.

H is also doing very well. She makes it through the school day and just keeps things simple to conserve energy in the afternoon/evening. No symptoms besides some headaches and fatigue still and her last fcal was....203! (best # in 4 years) She is taking Humira 40mg weekly plus 10mg oral methotrexate.

It is great to have some breathing room with this disease going into fall/winter.
 
We had FCals in Sept. C was at 36, still great, and H up to 352. She hasn't had a change in symptoms, though.

C had bloody mucous on wiping today. It's the first we've seen either with him. What does it mean? The context is great fcal, normal stools, ok energy.
 

crohnsinct

Well-known member
GRR:ymad: on H's calpro. I would be watching that one very carefully.

As for your boy, mucus is a very normal thing. We (non IBDers included) all get it from time to time. However, if there is a lot of it and it is with every bowel movement then a GI's ears may perk up a little and I mean a little. You can get mucus with healing IBD inflammation, with regular IBD inflammation, with SIBO, with IBS and like I said normal everyday life.

Blood? Was it blood tinged or was there also blood in the toilet water, on the paper etc? If it was blood tinged then it could be anything, a fissure, hemmie etc. Even a hemmie could produce a good amount of blood.

With such a low fecal cal, a GI would likely put this down to SIBo or IBS. But I have a few questions.....

Where was his disease located at dx? The reason I ask is because small bowel disease does not usually return the very high numbers that colonic disease does. So while I would raise the alert too high, I would want to watch the fecal cal just in case appearance of mucus is a sign that inflammation is starting up.

Another area that does not produce high calpro is the rectum and this area is notorious for producing inflammation and blood with inflammation. So again, if he had rectal disease, I would watch things and maybe request a repeat calpro in a month if these symptoms keep up.

FWIW - O gets copious amounts of mucus with EVERY bowel movement and often passes nothing but mucus and often it is blood tinged and maybe even more. They think she has/had SIBO and IBS. I am watching calpro.
 
C had VERY mild disease on TI at scopes last Christmas. There were granulomas etc but the damage was mild.

There was a glob of bloody mucus when he wiped and blood on tp. He freaked out a little so he didn't have a bm at that point but I asked him to keep me posted.

Poor O having to deal with that all the time.
 

my little penguin

Moderator
Staff member
Ds has spots of blood on tp mucus or stool
Typically for him last 1-2 days tops
We call GI as an FYI and watch
Low fecal cal goes up but not too high
Then back down
Never had it last more than 3 days of a spot or two here or there
GI calls them minor blips
Good luck
 
Things aren't going well. ☹ That business of mucous or pus that C had, developed into a month of butt pain which has us concerned about abscess or fistula. His abdominal pain is terrible. He barely eats and is losing weight. Stopped going to school last week.
GI on Monday. FCAl done and submitted and Humira levels this morning.
I am feeding him clear gelatin because it is what hurts the least. He tries other food but it causes pain. Even juicing causes pain! If he tries a piece of toast he gets indigestion for an hour.
No fever and last months bloodwork was normal. His bm's are bristol 4.
Keep us in prayer, and send free advice.
 
Things aren't going well. ☹ That business of mucous or pus that C had, developed into a month of butt pain which has us concerned about abscess or fistula. His abdominal pain is terrible. He barely eats and is losing weight. Stopped going to school last week.
GI on Monday. FCAl done and submitted and Humira levels this morning.
I am feeding him clear gelatin because it is what hurts the least. He tries other food but it causes pain. Even juicing causes pain! If he tries a piece of toast he gets indigestion for an hour.
No fever and last months bloodwork was normal. His bm's are bristol 4.
Keep us in prayer, and send free advice.
 

my little penguin

Moderator
Staff member
Can they get you semi elemental or elemental formula samples to try ?
At one point a few years ago Ds couldn’t tolerate semi elemental formula (even though he had drank it for years)
Inpatient multiple times
Finally switched to complete elemental een for two months and then things turned around ...
Hope the GI has a plan soon for him
 

Maya142

Moderator
Staff member
Yes - I would agree. Trying semi-elemental formula - Peptamen Jr or Pediasure Peptide. They are expensive, so hopefully your doctor can prescribe them.

He needs nutrients and he isn't getting them, poor kiddo. I'm guessing you've already tried Ensure and Boost and they cause pain? My daughter could not tolerate them either and she actually had diarrhea when they put her on Peptamen Jr.

So we had to go to an elemental formula, which she was unable to drink. Said it tasted and smelled of stinky feet ;). Most kids tend to need tubes for elemental formula but some can drink it (younger kids tend to do better with drinking).

Glad you are seeing the GI tomorrow. Make sure he looks at C's bottom. You may also want to prepare him for a rectal exam, in case it's necessary. Some kids do better if they are told what to expect beforehand and some don't. Not sure which type C is.

My daughter likes to know what they're going to do, so I wanted to mention it.

Honestly, it sounds like C may need to be hospitalized, so you may also want to prepare for that. Take a packed bag in the car.

Wanted to add - we will keep C in our thoughts. Hang in there :ghug:.
 
Your poor son--I'm sorry that he's in so much pain. I agree about trying elemental or semi-elemental formula, and a tube would probably be best for those. My daughter was in similar shape just before she got her tube, and I have to say that her buy-in for using the tube went way way up after 48 hours on it, when she started feeling so much better than she had for months--her awful abdominal pain went away and she had so much more energy.

Hope the appointment on Monday goes well. :ghug:
 

Maya142

Moderator
Staff member
And remember that an NG tube does not need to stay in all the time for older kids. At our children's hospital, they have kids as young as 6 inserting their own tubes and doing the feed overnight and then pulling it out before school.

And MOST kids with IBD do tolerate semi-elemental formula. It doesn't taste great - not like Ensure or Boost. But it's not as bad as Neocate/Elecare which are elemental formulas. I have tasted Peptamen Jr. and to me it tasted medicinal but not too bad.

Neocate on the other hand - YUCK. I have to agree with M on that one!

My daughter was able to get used to drinking Peptamen Jr but she just couldn't drink enough to maintain her weight, much less gain. So that's when we went to the tube.

But some kids are able to drink enough Peptamen Jr and Pediasure Peptide. Our GI's office gave us samples of several flavors of both Pediasure Peptide and Peptamen Jr. M ended up liking the chocolate and strawberry Peptamen Jr.

Every kid is different and of course, it also depends on whether you're doing EEN to induce remission or supplemental EN for weight gain/growth purposes.

If you're doing EEN, then you may want to do a combination of drinking and the tube, so he doesn't get hungry during the day. Or you can run feeds during the day too - he'd just have to have the NG tube in all the time then (and there are definitely some kids who prefer not to insert it daily!)

At our children's hospital, they now do EEN with 80% formula/20 % food because it's easier psychologically for kids. Some kids do require 100% formula, but most do just as well with 80-85% formula.

I also wanted to add that while inserting the NG tube daily sounds very hard and intimidating, but my daughter got used to it after a few days and within a couple weeks, could do it with one hand in less than 10 seconds. There are videos on Youtube I believe.

The most important thing to remember is that there are options - so definitely do not lose hope!
 

my little penguin

Moderator
Staff member
I will say Ds agrees with neocate jr tasting foul
That said over two days inpatient he was able to get past the taste (few kids can do this
Not sure how Ds did )
He started with 8 oz poured over a large filled cup of crush ice
Straw and pinching his nose for sips
The after taste is what causes the gagging
He learned to sip as much as possible at once
Less after taste

But to be fair Ds had been drinking peptamen jr orally every day for 4-5 years prior
Which isn’t exactly pleasant

Just saying elemental formula can be taken orally
Just depends on the kiddo
And no one can drink any formula orally easily - think days to weeks to adjust to the taste except polymeric formula like boost and pediasure
 
I wanted to update yesterday but I came home to 5 parent teacher interviews.
So C has what looks like a large chronic fissure that would be the primary source of the bottom pain. Truthfully, I had not seen anything alarming nor the gp that checked the area a few weeks ago but there it was. So we have nifedapine ointment and he is on 2 caps miralax per day.
The miralax is both to aid healing and also to determine weather his abdo pain is due to constipation.
GI says that constipation can be a phenotype of Crohn's. We've seen it in both kids. GI said he could feel poop stuck all the way up the colon.
Meanwhile he is on the semi-urgent list for re-scopes. They are trying to book him for December.
Because his bloodwork is good, GI has to see disease activity on scopes to bump up Humira dosage. They are still waiting on the levels test and the fcal results.
The miralax gave him several rounds of diarrhea yesterday so he must be cleaning out. Pain is still ever present but maybe if we keep on the program we'll get some relief for him.
As for H, this is the best they've ever seen her.
 

Maya142

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Oh poor C! My daughter has had fissures like that and she said it's like pooping glass :(. Poor kiddo. Have you tried the cream? Because we were given a similar one - nitroglycerine. I believe the idea is to increase blood flow to the area.

Well, M used it once and got such a horrible headache (which her GI warned could be a side effect) that kept her up for hours. Just wanted to warn you.
 
I think I read that nifedepine is a calcium channel blocker. No headaches but I think it's affecting his blood pressure. He's been dizzy.
I just told him M's description and he said that pooping glass is accurate.
Our kids have to deal with terrible stuff.
 

Maya142

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Staff member
M has had some bad fissures. One that was just dripping blood into the toilet bowl - even when she just went to pee. Nitroglycerine is similar to what you were given and made her dizzy and she had a horrible headache for hours...

Her BP runs low naturally, and so it made her miserable.

We finally figured out that hydrocortisone suppositories work best. They are extremely painful to insert when you have a fissure (or at least, she found them BIG and painful), but in her case, they worked quickly - within a week, she felt MUCH better.
 
Thanks for the update. Hope that the ointment works fast on the fissure, and that he can get in for a scope soon. The miralax sounds like a good idea too.

So glad that H is doing well, and hopefully C will be there with her soon.
 
Thanks!

Maya142 I made a mental note of the suppository so I can suggest a change if it gets to be too much for him.
 

Maya142

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I hope he doesn't have to use it. M finds them painful, and I would hate for a younger kiddo to have to deal with that.

M found the cream Calmoseptine helpful - it's a great barrier cream. It is messy - if he puts it on his bottom, expect pinkish cream in his underwear.

I'm glad H is doing well. I hope the scopes provide more answers. He's on 40 mg of Humira every other week, right?
 
We definitely need the scopes. The PEG regimin is giving him D 4-5 times per day (on day 3 of that now) which can't be great for a fissure.
I have a call in to GI to lower it to 1cap.
I think if the issue is constipation then we're through it now. Yet his eating has now stopped for trying solids, and down to only polymeric formula and not much of that either.
Anyway, just doing the mental gerbil wheel.
Yes he is 40mg Humira biweekly. His younger sister is 40 mg weekly plus mtx. So unless the levels are good -but scopes bad -they will up the Humira. If levels are good with advancing disease I guess they would add mtx or switch to another med. Just guessing.
 

my little penguin

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Just remember 6-8 weeks of polymeric formula (even if it isn’t much ) and no solids may lower what inflammation they would see on a scope
Assume you would be waiting at least 6 weeks and muddy the waters
Not sure that there are any other options though

Just wouldn’t want a mild scope finding due to formula
Only to have inflammation come back right afterwards...

Was he in daily peg before at a lower dose ?
Ds has had to have a daily dose for years due to constipation version of Crohns

Without it
He gets to be a mess
Belly pain
Not eating etc
And even once we start back up
It takes months to get back to normal belly /eating etc
 

Maya142

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We have done treatment before a scope. M's GI wanted to do M's last scope herself to see if there was damage to the intestine. We got a scope date 6 or 7 weeks away. In that time, she was on Entocort AND Pred. (low dose of Pred for her arthritis, 9 mg Entocort) for 6 weeks or so before the scope date. The scope STILL showed visible inflammation on both steroids and several healing ulcers in terminal ileum and caecum.

Her GI did not want to leave her untreated and in pain till she had the scope. She says she said she thought that was unnecessary, and didn't want M to be nauseous and miserable. She said she would account for the two steroids. So her FCP of 200, she said, was more likely to be closer to 500 in her opinion based on her experience.

But that's just an estimate and treating first DOES give you a less accurate picture of the disease/infection et

Anyway, just wanted to give another perspective on the other treating before scopes. Since you have to prove he needs Humira you may not really have much of a choice - then you don't want to change much before testing.

Good luck!
 
Good points. For the EEN I really have no choice. He has been trying to eat but the pain is out of control. He has self imposed the shakes. I only wish it was helping.
We have 2 and a half weeks to scopes. They got him booked quickly. But I don't know if he'll make it without me needing to take him to emerg. But then what?
He was never on an ongoing PEG program but it sounds like he has a similar presentation to your son, mlp.
Steroids didn't help at diagnosis.
 

my little penguin

Moderator
Staff member
Not that this will help your kiddo
But the odd weird things that have helped Ds
Vsl#3 prescription strength probiotics daily
(Since it’s used for UC and Ds has rectal inflammation GI thought maybe - but it helps a lot ) - we tried stopping more than once
Daily miralax- keeping Bristol 5-6 (Ds has rectal prolapse from years of constipation /crohns version as a little kid)
Formula amino acid based 50 % of his calories
Too much and his GI track stops
Too little and he is mess as well
At one point stopped all food and added one food back every 3-4 days
Couldn’t tolerate chicken for a year
Just turkey
Squash potatoes green onions etc...
Very short list
Plus he was on humira increasing dose at the time

Scopes after two weeks should be fine
Cincinnati Children’s has a 6 -8 week “rule “ of thumb
Which they know some level of healing is occurring

Please take him to the ER if needed
They can admit and scope the next day
Inpatient kids get added on for scopes every single day
They don’t wait
Hugs
 

Maya142

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Staff member
Poor kiddo - if the pain becomes severe, I'd take him to the ER. Also, if he is not staying hydrated or not eating at all, I'd take him to the ER.

Sending hugs - I hope he feels better on the EEN.
 
We only have a week left before scopes. Not much has changed. He had an abdominal xray today.

We've fiddled with PEG dose. More peg hurts his gut, and less hurts his fissure. His formed stools are less than an inch in diameter. Sometimes they look about a half inch.

He drinks about 5 Boost per day. More equals more pain. So his weight is steadily declining. He has lost 7lbs in the last month or so. I would give him a higher calorie shake but his gut won't handle it. He does drink his 2 litres of water per day.

He has been home now for a month. No school or other activities. He watches a lot of shows and listens to audiobooks. He is missing out on so much.

If your child went through this, was there anything that was a good distraction?
 

my little penguin

Moderator
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Can the GI give you semi elemental samples or elemental formula samples ?
Since polymeric isn’t working.

He needs to focus on his health
But that said
Learn to mod is a good website that teaches coding while doing Minecraft for kids
Tons of “badges “ etc...

LEGO has ev2 robots you build and program with apps
There are other ball ones as well

Does he enjoy Xbox or online gaming (Steam has Engineering games )?
He can talk daily with his friends from school
This keeps Ds connected to what is what
FaceTime or Skype helps
 
Can the GI give you semi elemental samples or elemental formula samples ?
Since polymeric isn’t working.

He needs to focus on his health
But that said
Learn to mod is a good website that teaches coding while doing Minecraft for kids
Tons of “badges “ etc...

LEGO has ev2 robots you build and program with apps
There are other ball ones as well

Does he enjoy Xbox or online gaming (Steam has Engineering games )?
He can talk daily with his friends from school
This keeps Ds connected to what is what
FaceTime or Skype helps
Thank you! Great ideas.
 

Maya142

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Staff member
Is he on homebound school (meaning is a teacher coming home to work with him)?? My daughter has been on homebound before twice, and she really hated it. It was what her joints needed at the time.

Both times, we kept it as short as possible, mostly because she was bored and miserable at home with less to distract her. So it was only a couple months. The teacher only came for a couple hours a week, so we got a math tutor to help her keep up with math. But mostly she did the work on her own, teaching herself with tools like Khan Academy.

Of course, if you're homeschooling, then he will have work to do.

We also tried to have her friends over as much as possible. Or to at least text/call/Facetime/Skype with them. She had one friend who came over every single Tuesday after school and then they would go to get ice cream. If she couldn't go, he'd bring the ice cream.

If he can manage it, have him volunteer somewhere - it could be an animal shelter or something like that. M volunteered at an elementary school more than once. She'd just go in and was like a teacher's assistant and helped out with the first-graders. It took a lot out of her, but she enjoyed it.

What is the primary issue that keeps him out of school? Pain? Fatigue? If I know the issue specifically, then I could probably help more. M was on homebound twice in middle and high school and then missed about a month when she was severely underweight and hospitalized for Refeeding syndrome.

She has also missed full two years of college...it's hard.
 

Maya142

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Oh yes - I definitely agree about the formula. He is going to resist it because it tastes bad, but some kids get used to it and are able to drink a lot. Our GI had a lot of kids who drank either Pediasure Peptide or Peptamen Jr.

Honestly, if he is not able to drink and if he's losing weight that quickly, I'd think he needs a feeding tube.

I would also look for workbooks or educational sites for kids his age. There is a lot of stuff on the internet.
 
I've been a little head in the sand about the tube. My stupid brain keeps saying, "Maybe it's just fecal impaction they can clear next week and he'll be fine."

Realistically, it's probably not.

He can't go to school because his pain is at a 7 without food, more if he eats solids. He has done a little work at home but finds it tough to concentrate. I know he will be able to catch up when he is well, but it's not much of a life right now.

He doesn't want to FaceTime friends because they will see that he is sick.

I may try to find ng tube videos he can watch just to get the idea.
 
I have no idea what to prepare him for. Would it happen that he needs surgery right there at scopes? Do they do that? What about an ng tube? Would they do that when he is under anesthetic?
What could happen here?
 

Maya142

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They could certainly place an NG tube under anesthetic. Do you think he would rather have one in all the time vs. insert it himself daily? I know he is young - he's 9, right? At our children's hospital kids as young as 6 insert it daily and pull it out before school. Younger kids are actually better at adapting to tubes.

I will post more after M's appt. today but Pilgrim, search the forum for tube feeding/NG tube/EEN and you will find a LOT of info. I've written a lot about M's experience - first few days were rough and then she was ok.

I will write more when I get home, later today.
 

Maya142

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Wanted to add - they may want to admit him after scopes, but they don't typically do surgery during scopes. They might do something small, like removing polyps but surgery for a stricture would be done in an OR with a surgeon, not just a GI.

But being admitted for surgery could be a possibility. He may even be admitted for NG tube feeds - if the kiddo is very malnourished, then Refeeding syndrome is a possibility.
 

crohnsinct

Well-known member
Oh man Pilgrim. I am so sorry to hear he is feeling so awful. A month off from school...not eating...this is pretty urgent regardless of what the reason is. Is the school system trying to send anyone out at all? Even if just for an hour or two a day? I am just concerned that falling behind will just add to his stress and worry.

I would definitely try every formula out there and start introducing him to the idea of tube feeds. There is a link in one of the threads to this young girl who does such a great job explaining and demonstrating it. After my girls watched her they actually thought it was a cool trick and were looking forward to trying it (they didn't have to though because they could drink Boost and Ensure).

Do liquids give him a problem also? Perhaps there is a gastroparesis problem overlaying the other stuff?

Did you get a recent fecal cal test done? Results yet?

One other thing I would ask about for scopes and that is the possibility of placing the pill cam or dummy pill cam while he is under. I hear they are on the larger side and some kids have trouble swallowing them so why traumatize him if you don't have to....take advantage of the anesthesia.

Hang in there mama...answers are coming soon.
 
I just wanted to share that when my daughter was first diagnosed (at age 12), she felt similarly awful like your son, and she basically watched videos and played ipad games for 2 months straight. (lots of minecraft and many puzzle games, along with more mindless stuff) She finally got an ng-tube, and within a few days her pain went away and she started getting her energy back, but she still wasn't anywhere near being able to go back to school. We ended up home-schooling for the whole spring semester. The good thing about that is that we could leave the tube in all day and run the pump 22 hours a day.

Our home-schooling was really basic. I got materials from her teachers and we spent an hour or two a day working on them. She was in 7th grade, and the only classes where I worried about her falling behind were math and Spanish, so those were the focus. She still watched a lot of videos and played a lot of video games. She had her sister to hang out with after school, but she didn't want to have friends over while her tube was in. (She eventually asked one good friend to visit, but that was it.)

The next year she was back in school and wasn't behind at all. And her time at home didn't turn her into a TV or video game addict, although we still fall back on those when she's flaring or in the hospital.

So that's a long way of saying that I wouldn't worry about what your son is using to pass the time right now. Hope that the scopes give you answers so that he can start feeling better soon!
 
I just wanted to share that when my daughter was first diagnosed (at age 12), she felt similarly awful like your son, and she basically watched videos and played ipad games for 2 months straight. (lots of minecraft and many puzzle games, along with more mindless stuff) She finally got an ng-tube, and within a few days her pain went away and she started getting her energy back, but she still wasn't anywhere near being able to go back to school. We ended up home-schooling for the whole spring semester. The good thing about that is that we could leave the tube in all day and run the pump 22 hours a day.

Our home-schooling was really basic. I got materials from her teachers and we spent an hour or two a day working on them. She was in 7th grade, and the only classes where I worried about her falling behind were math and Spanish, so those were the focus. She still watched a lot of videos and played a lot of video games. She had her sister to hang out with after school, but she didn't want to have friends over while her tube was in. (She eventually asked one good friend to visit, but that was it.)

The next year she was back in school and wasn't behind at all. And her time at home didn't turn her into a TV or video game addict, although we still fall back on those when she's flaring or in the hospital.

So that's a long way of saying that I wouldn't worry about what your son is using to pass the time right now. Hope that the scopes give you answers so that he can start feeling better soon!
Pdx....can I just say Thank You for reading my mind?
 
crohnsinct

Fcal submitted Nov. 5th. Still no results. Also I have no idea about fcal for him. He was 116 after a month of Prednisone just after dx. This summer he was 16, then 36 in Sept. Great numbers. It will be interesting to see what the Nov. number is.

He is quite different from H in many ways.
 

crohnsinct

Well-known member
So annoying. The sample is only viable for 7 days so you know they did the test. They take so long to actually report it to the doc and then for the doc to tell you. UGH! I have to wait about two weeks these days. Can you hear my fingers drumming?

Your two are like mine. One colonic disease and sky high calpro, the other small bowel, pain and much lower calpro....our little studies of n = 2 show that no two cases are exactly alike.

Good luck with trying the home schooling. It is so hard to balance the needs of your ill child when you have others that also need your time and attention. Hang in there mama!
 

Maya142

Moderator
Staff member
One other thing I would ask about for scopes and that is the possibility of placing the pill cam or dummy pill cam while he is under. I hear they are on the larger side and some kids have trouble swallowing them so why traumatize him if you don't have to....take advantage of the anesthesia.
This is a great idea! I don't know if it's a test you'd have to get special authorization for. Our insurance did not want to pay for it since M had already been diagnosed and it took a lot of appealing to get it covered (it was a giant pain, but doable). So I would check about that and email his GI and see if it's possible.

It is more helpful for them to put it in duodenum, just in case he has just motility issue. M's pillcam sat in her stomach for 4 hours so we really did not get enough images of her small bowel :ybatty:. But actually, that was the first sign that she had a motility disorder, so the test wasn't useless.

If you aren't able to get a pillcam placed during scopes but can have it done later, that's not the end of the world. It's not too big - has he been able to swallow something like Pentasa? It's a little bigger than that, if I am remembering correctly. My daughter had no issues at all but she takes 6 pills at the same time every morning, so she had practice ;).

I also am worried about him falling behind BUT he is young enough that it may not be a big deal. Can his teachers send work home for him? Just to do 1-2 hours a day, as pdx suggested? We had work sent home for my daughter when she was on homebound because she only got a few hours a week with a teacher from our school district.

She didn't really actually need much help, except for math. She was in accelerated biology at the time and she was able to teach herself by using the textbook and going to online videos. I helped her with the reading and writing kind of classes.

So that's a long way of saying that I wouldn't worry about what your son is using to pass the time right now. Hope that the scopes give you answers so that he can start feeling better soon!
pdx is absolutely right about flares. I'm not going to lie - my daughter has had MANY flares over the years and without TV and the internet, I'm not she would have made it through them!!

I mean, I suppose she would have had to but distraction REALLY helps her with pain. Normally, kids with IBD/Juvenile Idiopathic Arthritis (JIA) or any other painful condition are distracted by school. But when they're too sick to go to school, we have to keep them distracted somehow or all they will do is focus on the fact that their belly hurts or they're nauseous or they've already had 12 BMs and STILL have to go again.

So that is where tv comes in for us. M uses it a LOT to distract her from pain. And her laptop - she actually watches most of her stuff on her laptop and is always on there talking to one of her friends on social media sites or even just via iMessage.

When she has a flare or a surgery, all rules go out the window. Now she is 21 and an adult so it's not like I can limit her screen time. But when she was younger and I did limit it at home to a certain amount of time except when she had a flare.

Now we try to go into surgeries with a tv show to binge watch ;)!! M tries to find something new on Netflix or Hulu (a TV series or a movie) before the surgery and saves it for the recovery period. Sometimes we go into surgeries with TWO shows to binge watch. She had major surgery over the summer - 8 days in the hospital, including 2 days in the PICU. That was when the World Cup was going on and she was a big soccer fan and two hours after surgery, she was watching a world cup match!!

But besides the many matches (we watched them all), you know what else she did? She watched Frozen, Coco, Moana, Finding Dory and Up which the hospital had on the TVs in every room (it was at Boston Children's).

AND then she watched some of Staircase and re-watched episodes of Broadchurch - both are murder mysteries (and one is a true story!).

Anyway, my point is just that she spent much of her time on her laptop, trying to distract herself from pain. She watched a lot of TV shows on her laptop, but she also reads the news a lot - she knows a lot more about current events than I do and I watch the news every night. She also likes staying up to date on the AS research - it makes her less anxious about the future. She really reads a LOT of studies on AS/JIA and IBD, and it has also made her want to work in medical research, particularly in immunology and how these diseases work.

So at least some of her excessive laptop use has been educational :lol:l!!

Keep us posted - hope those results come back soon.
 
So sorry to hear this. 😔
Such a rough situation to go through.
Can you try to call and get his FC count?
My Grace is back to being tube fed after stopping 9 lbs in 2 weeks.
She's Homeschooled which is a huge blessing but yes.........
Sometimes she needs movies to veg or on when it's bad.
Of course her mama needs that sometimes also 😉
 
We had C's scopes on Wednesday. GI met us in the waiting area before scopes to tell us that all of C's labs looked good including fcal, he didn't antipate finding anything, and that we need to start considering that this is a psychological issue and possible treatment for the psychological component.
My husband said later he saw a visible change occur in my eyes. I thought my head was going to pop off. Maintaining my cool was difficult.
In the end, the scopes were visually good except there was impacted stool stuck all the way up. This after 2 days (4 sachets) of Pico Salax for bowel prep. And 3 weeks of PEG before that. GI had to spray and suction to get it all out in order to do the scopes.
He did take biopsies which will be back in a few weeks.
We take him back for an MRE in a few weeks but I don't think it will be abnormal considering the labs.
So he will do a sachet of the bowel prep every 2 weeks as a preventative measure indefinitely.
Within hours of the scopes he was eating again and went back to school yesterday after 5 weeks. He is weak, but he did end up 8lbs lower, so he should be able to regain his strength over time.
We were offered the option of admitting him for tube feeding, but it was our choice and we declined considering the outcome of the scopes.
I really don't understand the persistant constipation but it has been a problem since shortly before diagnosis.
I made the magic poop muffins today. But clearly this is not ordinary constipation. This is his superpower.😎
But I don't think he needs the "psychological assessment" yet. I might....but he doesn't.
 

Maya142

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Staff member
Have they talked about amplified pain, given the lack of inflammation? They have to check his small bowel first, of course, to see if it's inflammation or a stricture or something like that.

If it's clean, it's likely some part of the pain, if not all of it, is amplified. Which essentially means that for whatever reason (likely past inflammation) his nerves are continuing sending pain signals, even though the inflammation is gone (or has lessened). Pain disproportionate to what is found on scopes is often amplified pain - it's sometimes called visceral hyperalgesia too.

The pain is REAL. That is the most important thing to understand. He's not making it up. But it has to be treated differently from IBD. As you probably know, there are medications and pain programs to help kids with this kind of pain. Biofeedback, massage, cognitive behavioral therapy (CBT) help. Physical therapy or exercise also helps - my daughter finds it has to be somewhat intense exercise to help her (so playing tennis for half an hour helps her much more than going for a walk). Psychotherapy/CBT are also very important, because chronic pain causes anxiety and depression, very understandably and stress can worsen pain, so it's helpful for the child to learn how to cope with this chronic pain.

Conquering Your Child's Chronic Pain is a great book to read that really explains how chronic/amplified pain works and what treatment strategies are a possibility.
 
Thanks for the update. That's crazy about the impacted stool after all that PEG and bowel prep. Hopefully your GI was able to clean everything out--it would be so great if that was all that was causing the pain and lack of appetite.

And grrrrr to the doctor for suggesting that your son's pain might be all psychological. I would also have had a hard time keeping my cool.
 
I am not discounting the idea of amplified pain, which may well have been what he was trying to say, but I do wonder if all of that hard intractable stool could have been the cause. Seems like it, although it is only 2 days past scopes. He is much improved.
 

Maya142

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Yes, the stool is definitely odd - I wonder if it's a motility issue?? Those can cause pain too...
 
I think motility is worth exploring. When I looked up gastroparesis it said there was usually vomiting involved, is that right? We haven't had vomiting. But I am encouraged that he wants to work through some treatment options for the constipation.
It might lead to other ideas if it isn't successful.
 

Maya142

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Staff member
No, not always. M didn't vomit much. Some kids with Gastroparesis vomit a lot, but others have severe nausea, but do not vomit. Some kids have abdominal pain because of the delayed emptying and others don't. It really varies - like with Crohn's, every kid is different.

The test for Gastroparesis is pretty easy. The kiddo eats eggs and toast with a radioactive tracer in them. They have to eat most of it within 10 minutes. Then they take pictures (x-rays) at intervals to see how much food have emptied out. If the child has more then 10% of his meal in his stomach after 4 hours, then he/she has Gastroparesis.

He honestly does sound like a good candidate for tube feeding, unless he can drink more Boost?? Maybe you could push that.
 

my little penguin

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Staff member
You said peg for 3 weeks
Did you stop after that ?
Ds gets really really bad if we ever stop miralax
We do miralax daily even with diarrhea
Just lower dose
The pain from impacted bowels is very real

I can say for ds at least
Fiber is a big no
Prune juice or prune etc...
Anything that is supposed to make you go
Makes him cramp so much more

9 years on daily miralax now

Hugs
 

Maya142

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Staff member
M is another kiddo who needs Miralax regularly. We only stop it if she has a lot of diarrhea but even then, missing one or two days will lead to constipation and stomach cramps.

I'm wondering if the tube feeding might be a good idea to control the pain. Our GI said there is evidence that EEN changes the microbiome. So considering he's in pain and losing weight, it may be worth trying. It won't hurt him and may even help with the constipation.

The other tests for motility would be a Sitz marker test, which tells you how fast it takes for these little markers to go through your gut - from when they are swallowed to when they are excreted. You come back several days after having them for an x-ray which shows if there are any still in your colon.
 
mlp it was probably closer to 5 weeks with PEG then scopes prep. We started at 2 caps but he was having diarrhea 5-7 times a day (blowing past the stuck bits). So we moved to 1 cap.
We haven't had luck much luck with it. GI wants to use bowel prep every other week to try to keep him clear.

Maya, he is actually able to eat now so I will see how it goes. If he can start gaining weight I think his strength will build. GI nurse thought it was possible the shakes could be contributing to the constipation but maybe in small amounts like 1 or 2 a day would be a good balance. Especially if there is any active Crohn's on biopsies.
 
Did M always deal with constipation with Crohn's? During active disease and in remission? I don't read much about it.
 

Maya142

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Staff member
She is one of those kids who deals with both. She started off with primarily constipation and then at some point, flares began to mean diarrhea and accidents sometimes and other times, it was severe constipation that required Milk of Magnesia and occasionally a stimulant laxative (like Senna).

Most of the time, though, we managed with Miralax and only switch to Milk of Mag when Miralax is not working.

Even if she is having diarrhea due to a flare, if we stop the Miralax or Milk of Magnesia during the flare, she will end up with painful constipation within a few days.

The last few scope preps have been poor, despite following the instructions and doing a low residue diet. After M's last scope, her GI said we will have to change the prep next time, since Miralax and Dulcolax didn't fully clean her out. She attributed M's poor prep to her motility issues - she has poor motility in all of her gut, not just her stomach.

I will add that M takes medication that contributes to her motility issues - pain meds for her arthritis. So that's another variable, in addition to Crohn's and dysmotility.
 

my little penguin

Moderator
Staff member
Formula only makes Ds constipated as well
Even with miralax
He needs a combo of miralax , formula and food
It took years to figure that out 😳
 

crohnsinct

Well-known member
pardon me while I get my soapbox out.....

A) you are giving me PTSD from when O had accidents, urgency, a fecal cal of 500 and was filling the toilet with blood and the GI said, "see a psychologist".

B) where was his disease at dx? If it was small bowel, you will excuse me if I don't quite celebrate the clean scopes just yet. I want clean MRE also...I am greedy that way

C) Constipation is a VERY real issue. I think I may have said it to you before and I know that I have said it on here many other times. It is a VERY complex issue and a HUGE topic in GI circles. I follow many ped GI's and there is a twitter post at least once a day about constipation. That said, I was also going to suggest a motility issue. However, there is also IBS-C. I know most people think of IBS-D when thinking about IBS but many, many people have constipation with IBS so that is also a possibility. IBS and motility aside, there is an issue he is getting so constipated that even with all that prep he still had impacted stool. That poor kid. No wonder he was in such horrendous pain. My oldest daughter suffered for 7 or 8 years with constipation. She was encopretic and had rectal prolapse. It was awful. We were in and out of GI's offices and no luck. All we got was daily Miralax and at the time Senokot for kids to soften everything. Ugh! It was awful. We also did a fair amount of psychologist visits. It all started as a toddler with holding so she didn't miss play time. Then as she got older it would take a long time to go and we were always rushing somewhere so more holding because she didn't have time to go. LOTS of bowel retraining. I am still not convinced that was the whole issue but probably part of it. She also didn't have the greatest diet. There is actually a practice now called psychogastroenterology. There is such a strong gut/brain connection. Check it out. I think a lot of the heavy hitters in this area are from Duke University in North Carolina. If it is IBS-C I wonder if Fodmap diet would help? UGH! SUCH a complex issue. I hope your GI is passionate about figuring this out. Lots of trial and error.

As awful as Crohn's can be at least we understand it and we know the treatments. I HATED that gray area of IBS/Motility etc. It was so frustrating when they thought that was what O had and we tried so many different things and nothing worked or they made her worse. The IBS dx actually made me way crazier than the IBD dx. And just to add to all the fun, the symptoms mimic Crohn's so you have no idea what is going on. ARGH!

But like I said at the beginning...I want MRE results, THEN I will entertain other theories.

I am so glad he has had a few days reprise and was able to jump back into school. Bless his little heart! And bless you to Mama. You have so much going on and this is a hard fight. You are doing a great job!
 

my little penguin

Moderator
Staff member
Crohn'sinct
Crohns can cause severe constipation
And most GI don’t understand that it’s component of the child’s Crohn’s disease
That when the Crohns is treated properly ( more importantly A med the kiddo responds to )
Suddenly the constipation lessens to manageable with a normal amount of. Miralax
We have seen it time and time again for ds
 

crohnsinct

Well-known member
Yes MLP I was just mentioning other reasons for constipation should the MRE also come out clean. T gets constipation with her Crohn's also AND I would venture to say that constipation usually is more associated with small bowel disease which is also why I don't want the GI jumping to any conclusions psych or otherwise until that MRE is done. I already ate a guidance counselor for lunch yesterday, don't make e eat a GI also!
 

Maya142

Moderator
Staff member
Yes, constipation by itself can cause severe pain even when there is no IBD involved. Both my daughters dealt with bad constipation as toddlers - I think at that age holding it is common - they don't want to stop playing or whatever they're doing. Luckily for us, my older daughter grew out of it completely - and there were LOTS of tears before that happened. She would then have hard stool and it would hurt to go, so she'd be afraid to have a BM and developed painful fissures. Both my kids did actually. So we had to do bowel retraining too - a laxative and stool softener were needed for a while.

And so far, my older one has no other GI issues and no constipation.

My younger one is more difficult to figure out. She had bad constipation as a toddler and it resolved but she continued to have a very sensitive stomach. It's hard to know if Crohn's played a part in it but I do know that when she flares, there are times the flare presents as constipation and other times as diarrhea. She mostly has disease in her TI and cecum, though initially it was all through her colon and rectum.

She still often says that the pain of constipation is much worse than diarrhea for her. And she was initially diagnosed with IBS-C before being diagnosed with IBD, years before (her fecal cal was normal, so we did not scope).

I think it's not quite as simple as IBS and IBD - I think they are often very intertwined. It seems to me that there are plenty of adult patients who continue to have symptoms even in remission - do you then call that IBS or consider it a part of IBD? I know in the rheumatology world, typically when there is no inflammation, you consider a pain syndrome but in my daughter's case, the pain syndrome is fueled or triggered by the inflammation. So it's not clear cut - it's not as easy as saying "this is AS pain" or "this is amplified pain" - it's usually both.

I think if he has an MRE or pillcam that is clear, then it's likely you have a pain syndrome or IBS-C to deal with. But until then, you can't know for sure.
 
We went through a similar constipation thing at diagnosis. Pain for months, I asked for scope despite good labs. Very mild TI disease found. Mild enough that the GI was 50/50 on the diagnosis but the biopsies did confirm Crohn's. We tried mtx and EEN, constipation built, but there was tons of pain - then switched to high dose pred....more pain and severe constipation. Then after 3 months of all that switched to Humira. 3 weeks after loading doses the problem left. Pain gone and pooping.
So it is complicated. Is he now overmedicated with Humira because constipation was more the problem and it wasn't properly investigated? Or is there something going on with Crohn's on a cellular level which contributes or causes the constipation as it did respond to Humira?
I am really curious about the biopsies.
But lets be clear- the pain had constipation as it's cause this time (if not also at diagnosis). Constipation that severe was truly painful. It stopped a child eating, playing, sleeping, and going to school. No syndrome happening. The constipation was manually cleared and within 24 hours he could eat, sleep and go to school and play.
No pain syndrome.
 

crohnsinct

Well-known member
I think there is so much they don't know about gastro issues. At times we are all just stabbing in the dark.

I wouldn't worry that you may have been overrating him with Humor. He got better and IBD or not that is the end goal. No other more conservative measures were working!

Good luck researching IBS. It is the most frustrating thing we have dealt with. No two people are alike and few doctors care to even bother to learn much about it because it doesn't do physical damage. HOWEVER, it does cause pain and causes much, much psyco social damage. IF what O has been dealing with for the past three years is in part IBS,I can tell you that bit has affected her daily life tremendously. BUT O's IBD hasn't really stayed in good control either so the water is so muddy with her.

I just ordered Kate Scarlata's FODMAP book. I will let you know how we do with it.

Are you on twitter? There are lots of world renown registered dietician who tweet on the topic of IBS. There are some great docs also. If you are send me a pm and maybe we could follow each other and when I see their posts I will send them your way.
 

Maya142

Moderator
Staff member
So it is complicated. Is he now overmedicated with Humira because constipation was more the problem and it wasn't properly investigated? Or is there something going on with Crohn's on a cellular level which contributes or causes the constipation as it did respond to Humira?
I am really curious about the biopsies.
I am not sure you're going to get a clear answer on this one. I would guess that if there is still microscopic inflammation or inflammation in his small bowel, then hopefully that is causing the constipation and pain.

But if it's very mild inflammation (that the GI feels is unlikely to cause constipation or pain) or if there is none, then you have to think about other causes of pain and constipation.

If I'm understanding correctly, his pain and constipation was gone after the loading doses of Humira, is that right?

So it could be that he has developed dysmotility for whatever reason - prolonged inflammation or an unknown reason. They call it "chronic constipation" or IBS-C or "colonic inertia." That would explain for the constipation. In that case, typically they'd change his laxative regimen, I'd think. Typically they start with a clean out and then the goal would be to get him to have soft BMs - we were told pudding like consistency.

Hopefully, that will clear up the pain. I say hopefully because pain is tricky - it can persist long after a trigger is gone. But considering there is clear evidence of severe constipation, I would hope C would feel better if you take care of that.
 
I thought I would update here, because reading back... C has had the same issue, same time of year 3 years running. It saves us having all the same constipation conversations all over again.

CIC, how was Kate Scarlotti's IBS book? I am trying an IBS diet starting tomorrow for C to see if we have an overlay.

Pain is back. He seems to be moving bowels (saw a Bristol 4 today) but I thought that last time. He is avoiding food again.

I also was reading about SSRI medications and possible lack of serotonin causing constipation. It seems to happen Oct/Nov/Dec each year. It is dark here.
 
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