# H's Brother



## Pilgrim

He's had weird issues pop up, but lately over the summer and getting much worse over the past several weeks is abdominal pain. 
He was prescribed Zantac for possible GERD which just doesn't make a dent in the pain. 
We're getting a referral to GI,  labs (not fcal unfortunately ),and an abdominal ultrasound. He is also going to try a PPI for the possible GERD.
Anyone have experience with GERD? Did the meds help? Did it end up being Crohn's? 
We're having a hard time over here. 
I think I jinxed it by trying to start an exercise class, lol. Now I have some kid home from school every day.


----------



## my little penguin

Meds really help 
Oldest has Gerd  but not ibd
Diet is also key 
You often need a combo of both 
Not laying down after eating 
No spicy foods
Soda pop or carbonated drinks are a big no
No tomatoes/sauce etc...,

A lot of trial and error


----------



## Pilgrim

Thanks. It's good to know it might not be more than GERD. We'll try the next med.


----------



## Maya142

My kiddo needed a PPI for GERD - Zantac didn't work well enough. Like MLP said, diet changes also really help. 

How old is he? The other thing that bothers my daughter is caffeine - in coffee or tea. He may not be old enough for that but wanted to mention it. Also chocolate! And tomatoes.


----------



## Pilgrim

He's 9. He doesn't have coffee or tea, or soda. Tomatoes and sauce really bother him. Good mention on the chocolate right before Halloween.  I will pull it from his bag. We saw a dietitian and she said garlic could be a problem too. We cut out orange juice.


----------



## Pilgrim

Any side effects from the PPI?


----------



## Maya142

Yes, garlic is definitely a trigger for my daughter. No side effects from a PPI for us. My daughter has been on one for years. There are risks with being on them - they prefer using Zantac or Pepcid now, but we tried those and they didn't work for M. 

She is also on an NSAID, so it's very important for us to protect her stomach.

Gastritis can also cause stomach pain and can be caused by reflux. For that, we use Carafate. M takes Carafate regularly to prevent gastritis, but it is often given for a short period of time if gastritis is suspected or found on a scope.

Have you tried something like Maalox or Tums for the pain? If it's acid, that should help. We find Maalox works better, so M takes that when she has really bad reflux. It works pretty quickly.


----------



## Optimistic

Hi. From birth my son was always a weird throw up kid, usually on airplanes or school plays or malls. Every time he got sick it included a stomach issue.  He would get nauseous at times. We just  thought he was different! He was - he had Crohn’s!  Tums never did much. 

He started a PPI when first hospitalized as an off label treatment for inflammation he had in duodenum, along with steroids and EEN.  He stayed on the PPI when he moved  to some food. Still on it years later. No side effects.


----------



## my little penguin

Our GI will NOT use ppi in kids anymore 
They know ppi lower magnesium and cause polyps to grow
The GI will use carafate / zantac etc...


----------



## Optimistic

No magnesium or polyps here. In fact, the one time I convinced - well I won’t say name bc it might show up in a search  - a GI IBD specialist at Boston to switch to carafate, which he said would not work, horrible reflux returned but  worse...the next biopsy showed trace inflammation in duo. Coincidence? Maybe. But after returning to PPI, next one was clear. So PPI it will be!


----------



## Maya142

We haven't had issues with PPIs either. Our GI still uses them when necessary - at one of the big children's hospitals, which has one of the biggest pediatric IBD centers in the US.

I do worry about them long-term but I also worry about inflammation in her stomach long-term.

M also has moderate/severe Gastroparesis and severe reflux is very common with that. It actually has taken a double dose of a PPI (we had to really fight insurance to get them to pay for a double dose), daily Carafate, Pepcid and Maalox as needed to control it.

It is a LOT of medication, but like Optimistic's son, if we step back even a little bit, her scopes show inflammation in her stomach.

Long-term PPIs do put you at risk for low bone density, and while M has that, it has actually improved in the last year as she has gained weight and has become a healthy weight. They also put you at risk for CDiff. which she has had twice.

Both times she had CDiff it was after antibiotics, so not sure if it was related to PPIs at all, just wanted to mention it.

I don't see us stopping her PPI any time soon.


----------



## my little penguin

> Go to:
> Abstract
> Fundic gland polyps are now commonly recognized during endoscopy. These polyps are benign, often multiple and usually detected in the gastric body and fundus. In the past, these polyps were sometimes associated with familial adenomatous polyposis. In recent years, it has become evident that increasing numbers of these polyps are being detected during endoscopic studies, particularly in patients treated with proton pump inhibitors for prolonged periods. In some, dysplastic changes in these polyps have also been reported. Recent studies have suggested that there may be no increase in risk of colon cancer with long-term proton pump inhibitor therapy. While temporarily reassuring, ongoing vigilance, particularly in those genetically predisposed to colon cancer, is still warranted.
> 
> Keywords: Gastric polyps, Fundic gland polyposis, Gastric dysplasia, Gastric cancer, Colon polyps, Familial polyposis coli, Adenomatous polyposis coli gene mutation



*

Published online 2008 Mar 7. doi:  10.3748/wjg.14.1318
PMCID: PMC2693675
Proton pump inhibitors and an emerging epidemic of gastric fundic gland polyposis
Hugh James Freeman
*


From
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2693675/


----------



## my little penguin

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5214735/



> Stomach polyps form in response to damage to your stomach lining. The most common causes of stomach polyps are:
> 
> Chronic stomach inflammation. Also known as gastritis, this condition can cause the formation of hyperplastic polyps and adenomas. Hyperplastic polyps are unlikely to become cancerous, although those larger than about 2/5 inch (1 centimeter) carry a greater risk. Adenomas are the least common type of stomach polyp but the type most likely to become cancerous. For that reason, they are generally removed.
> Familial adenomatous polyposis. This rare, inherited syndrome causes certain cells on the stomach's inner lining to a specific type of polyps called fundic gland polyps. When associated with this syndrome, fundic gland polyps are removed because they can become cancerous. Familial adenomatous polyposis can also cause adenomas.
> Regular use of certain stomach medications. Fundic gland polyps are common among people who regularly take proton pump inhibitors to reduce stomach acid. These polyps are generally small and aren't a cause for concern. Fundic gland polyps with a diameter larger than about 2/5 inch (1 centimeter) carry a small risk of cancer, so your doctor might recommend discontinuing proton pump inhibitors or removing the polyp or both.


From

https://www.mayoclinic.org/diseases-conditions/stomach-polyps/basics/causes/con-20025488


----------



## my little penguin

> No clear mechanism has been found to explain the possible pathogenesis of FGPs due to PPI use. Hypergastrinemia due to PPI use was thought to be a probable cause of gastric mucosal hypertrophy and polyp formation. However, a study by Fossmark and colleagues found no relationship between FGP formation and serum gastrin levels due to PPI use.16 Our patient had serum gastrin levels within normal limits.
> 
> There is no evidence that any PPI increases the incidence of FGPs. In most studies, the most common PPI was omeprazole, which could be because it was one of the earliest PPIs to be marketed and it is commonly prescribed.
> 
> However, the use of PPIs for more than 2 years may increase the risk of FGP formation.11,12 Ally and colleagues demonstrated that PPI use of less than 1 year did not increase the development of gastric polyps, while PPI therapy for more than 2 years was an independent risk factor.17 No dose-dependent association has been described in the literature. Our patient reported the use of PPIs for approximately 12 years.
> 
> No surveillance is required for FGPs because they are not premalignant lesions.18 Genta and colleagues found no increase in gastric neoplasia in patients with FGPs.19 There was an inverse correlation between the FGPs and gastric neoplasia.19 In our patient, we repeated the endoscopy within 6 months because of worsening GERD symptoms.
> 
> In conclusion, this case demonstrates a possible association between long-term PPI use and large FGPs. Because many patients take PPIs for GERD and other conditions, doctors should be aware of this potential adverse effect. The use of PPIs should be limited to patients who need them, and the duration of treatment should be monitored.





> A 42-year-old white man was referred to our center by his primary care physician for symptoms of chronic diarrhea associated with cramping, abdominal pain, and flatulence. The patient had chronic gastroesophageal reflux disease (GERD) and had been taking omeprazole 20 mg twice daily for the past 12 years.
> 
> A colonoscopy and esophagogastroduodenoscopy (EGD) were performed for symptom workup. The colonoscopy revealed no significant findings. The EGD showed approximately 30 large pedunculated polyps in the gastric body and fundus (Figure 1). The size of the largest polyp was approximately 2 cm. Biopsies of the polyps were obtained with cold forceps. Histologic examination of the specimens showed multiple fragments of fundic gland mucosa with occasional dilated glands. Based on the EGD and histology, the patient was diagnosed with fundic gland polyps (FGPs). The most likely etiology was thought to be the prolonged use of proton pump inhibitor (PPI) therapy. Therefore, omeprazole was discontinued, and ranitidine 150 mg bid was started. A repeat EGD performed 5 months later showed a significant decrease in the size of the polyps and no polyps were pedunculated (Figure 2). Pathology of the biopsy sample confirmed the presence of FGPs with no evidence of malignancy.


*
Large Fundic Gland Polyps in the Stomach

Download PDF
Gastroenterology & Hepatology
March 2016, Volume 12, Issue 3

Sonia Varghese, MD,1 Vu Le, MD,2 Tauseef Ali, MD2

1Department of Hematology and Oncology, Stephenson Cancer Center, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma; 2Department of Gastroenterology, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma
*

From

http://www.gastroenterologyandhepat...016/large-fundic-gland-polyps-in-the-stomach/


----------



## Pilgrim

Maya142 said:


> Yes, garlic is definitely a trigger for my daughter. No side effects from a PPI for us. My daughter has been on one for years. There are risks with being on them - they prefer using Zantac or Pepcid now, but we tried those and they didn't work for M.
> 
> She is also on an NSAID, so it's very important for us to protect her stomach.
> 
> Gastritis can also cause stomach pain and can be caused by reflux. For that, we use Carafate. M takes Carafate regularly to prevent gastritis, but it is often given for a short period of time if gastritis is suspected or found on a scope.
> 
> Have you tried something like Maalox or Tums for the pain? If it's acid, that should help. We find Maalox works better, so M takes that when she has really bad reflux. It works pretty quickly.


Thank you! We purchased Maalox tonight and he said it helped more than the tums. Said his pain went to a 4-5 from a 6.


----------



## Maya142

I'm so glad it helped!!


----------



## my little penguin

Woo hoooo!!!!
Glad you found something that helped


----------



## Farmwife

Both kids have been on PPI's, tums and such. 
Along with myself.  Green tea..... ya,  sounds weird.  But it works for us.  I have to drink it for a week to work but it's worth it for us. 

Grace is no longer on any tummy meds.:dusty:
But was on it for YEARS!


And my forum friend
You give me yet another reason not to exercise.:ack:
I lift my cherry fritter doughnut in appreciation to you! Your :welcome:


----------



## Jabee

my little penguin, thanks for the information about polyps. Like Optimistic’s son I was first prescribed PPIs for crohn’s in the duodenum. They worked very well and at that time I didn’t need a stronger medication. I now take dexilant twice a day as well as Entocort since the inflammation popped up in my jejunum and ileum. I will definitely speak with my GI about polyps and PPIs at my next appointment. At one point I had Barrett’s esophagus; the twice a day dexilant healed that so I do need to be careful. I may have to switch to Humira since Entocort varies in its effectiveness and I can’t take 6MP or azathioprine because they give me pancreatitis.


----------



## kimmidwife

Caitlyn has low bone density from being on PPI’s for way to long. She is now on Zantac and carafate. Her last few scopes her esophagus has looked really good.


----------



## Pilgrim

My son has 2 weeks to wait for an ultrasound. I am going to try the Omeprazole for 3-4 days just to see if he gets any relief. Gave up on Tums and the Gaviscon (Maalox) as well as the Zantac. Nothing is working. They told me to stop the med if it isn't helping.


----------



## Farmwife

Grace's Omeprazole took weeks to work. 
I think he'll need more if this episode doesn't pass. 

Ironically my son is going thru another bout of abdominal  cramps.
He was given a med for anti cramping.


----------



## Maya142

Yes, I'd check with your GI on how long it takes to work. I can't remember now, but I do think it was longer than a few days...


----------



## Jabee

Can you give him the omeprazole twice a day? I took nexium twice a day for years. You might need the two doses to make a difference.


----------



## Pilgrim

The dose says 1 per day early morning. He weighs about 75lbs. Don't know if that makes a difference. 
I had read on the internet that we should notice some improvement within 3-4 days, but it sounds like I should keep researching. It's just that I was told to stop if no improvement-  unfortunately no time frame given.


----------



## Maya142

When we have tried PPIs, we've always tried them for at least a week or two (usually two), not just a couple of days. 

Is there any way H's GI can weigh in? When does he see the GI? Has that been scheduled yet or am I getting confused with H's appt.?

I'm just thinking that the dose may not be right - our pediatrician put M on a PPI but once we finally got in to see M's GI, she doubled the dose immediately. M was on Prevacid, not Prilosec, but took it twice a day.

GIs tend to be more aggressive with these meds. M was immediately put on Prevacid twice a day plus Zantac once a day, so that she'd have something before each meal to prevent reflux. 

It worked well for her, though it did take a while to work.


----------



## Pilgrim

I was able to get him in to GI on the same day as H but that will be about 3 weeks. 
I don't mind limping along with this until the GI weighs in. We do get imaging in about a week or so.


----------



## Lady Organic

I have been prescribed PPI from an ENT for possible GERD and issues in my throat, but I decided not to take it considering the associated risks on stomach mucosa, which have been identified with endoscopy research (polyps, cubblestone mucosa, etc). As a CD patient I believe our mucosa is maybe even more vulnerable to possible side effects of PPI. I chose to adapt and change my lifestyle to minimize possible GERD eventhought that full change is not yet achieved :shifty:


----------



## Pilgrim

I understand that,  Lady Organic! It's even tougher maybe to make medication decisions for another person, and more so a young child. 
For H's brother we have also: put the head of his bed up on blocks, limited food before bed, cut tomatoes, garlic, and citrus fruits, and totally eliminated dairy. He eats a plant based diet. We tried 3 less potent medications that didn't help.
If the omeprazole doesn't help after a few  weeks then I will wonder if acid is the problem. Yesterday was day one and he still had an unreasonable amount of pain.
He can't live like that. He's missing some school, turning down some invites, and then sometimes he's ok.


----------



## Maya142

I think he probably needs to be scoped. Poor little guy. 

We also worry about the side effects and long term effects of PPIs but the long term effects of GERD and inflammation in the stomach from reflux aren't good either. And like you, we have tried changing diet and all that without much success. 

A PPI has made all the difference for my daughter - before she was on one, she had constant stomach pain, would not eat, lost 15 lbs (and she didn't have any extra weight to start with) and was just miserable. When we started Prevacid and got her on the right dose, it really improved her quality of life.


----------



## Farmwife

Same here!
I'm glad wet did because after scoping we say damage that could have been so much worse if not for ppi's.
Now with that said,  mine is controlled with out meds. 
I prefer natural but will use meds when needed.


----------



## crohnsinct

Ugh!  I'm gonna say it.  Could be IBS also. IBS can cause a great deal of pain and until you identify the culprit and get on the right meds it could be miserable. I hate the IBS dx because they know so little about it. Plus plant based diet could still aggravate it. Many plants are culprits for people. Just stinks!  I vote fecal cal. ThAt will at least let you know which tree to bark up. Normal then functional (IBS gastroparesis, allergy etc) or  High organic. (IBD). 

I hope he can last the three weeks.


----------



## crohnsinct

sorry for the double post but might not hurt to try some simple IBS stuff. Our GI had my daughter start on probiotics. Culturelle was the beans he recommended. Double dose for two weeks then down to regular dose. Takes up to a month to be effective but I don't think probiotics will hurt so worth a try.


----------



## Maya142

My kiddo has an IBS dx in addition to IBD - in her case, it flares up when she is stressed out. We added probiotics - we also use Culturelle and worked on controlling stress. That really helped her. Her symptoms were diarrhea and abdominal pain and cramping.

Levsin also helped a lot with the cramping.


----------



## Pilgrim

Here's a dumb question. Can you have IBS without bowel symptoms? His output is totally normal.


----------



## Pilgrim

Maya142 said:


> I think he probably needs to be scoped. Poor little guy.
> 
> We also worry about the side effects and long term effects of PPIs but the long term effects of GERD and inflammation in the stomach from reflux aren't good either. And like you, we have tried changing diet and all that without much success.
> 
> A PPI has made all the difference for my daughter - before she was on one, she had constant stomach pain, would not eat, lost 15 lbs (and she didn't have any extra weight to start with) and was just miserable. When we started Prevacid and got her on the right dose, it really improved her quality of life.


I'm pretty sure the GI will offer a scope. If not, I am prepared to ask. He is also avoiding food. Smoothie for breakfast but then he suffers for awhile. He had a couple crackers at lunch. His lunch box is coming home fill when he goes to school.
He only grew 2.5cm over the past year and half a lb. So, I personally think something has been brewing for awhile.


----------



## my little penguin

Ibd or ibs ?
Ibd you can have no bowel symptoms at all 

Ibs is symptoms with signs of damage ..


----------



## Pilgrim

my little penguin said:


> Ibd or ibs ?
> Ibd you can have no bowel symptoms at all
> 
> Ibs is symptoms with signs of damage ..


No, I know full well he could have IBD with no bowel symptoms (living it with H) but I know nothing about IBS.. ..


----------



## Pilgrim

crohnsinct said:


> sorry for the double post but might not hurt to try some simple IBS stuff. Our GI had my daughter start on probiotics. Culturelle was the beans he recommended. Double dose for two weeks then down to regular dose. Takes up to a month to be effective but I don't think probiotics will hurt so worth a try.


I don't see the harm in trying a probiotic. Good idea. As for the fcal, I have already asked. We are limited to two a year and only for diagnosed IBD patients as per GI. I am not allowed to pay for one myself, which I would very gladly do. But the U.S. border is only 2.5 hours south and I am thinking about it!


----------



## Pilgrim

Farmwife said:


> Same here!
> I'm glad wet did because after scoping we say damage that could have been so much worse if not for ppi's.
> Now with that said,  mine is controlled with out meds.
> I prefer natural but will use meds when needed.


What natural remedies help you? I could try along with meds maybe....


----------



## Maya142

With IBS, I think you would usually have diarrhea or constipation. 

What are his symptoms? I know he has stomach pain, but anything else? Is the stomach pain after meals or before food or at any specific time? Where is it located?


----------



## Pilgrim

Maya142 said:


> With IBS, I think you would usually have diarrhea or constipation.
> 
> What are his symptoms? I know he ha8s stomach pain, but anything else? Is the stomach pain after meals or before food or at any specific time? Where is it located?


He usually wakes up with pain (probably mingled with hunger) and immediately after he eats it gets worse up to a 6 on the pain scale. Sometimes he feels like crying. After 30-60minutes sometimes with a heat pack it starts to become more mild pain. Then when he gets hungry again the cycle repeats. 
At first some weeks back he would indicate the pain was right under his rib cage. Lately he indicates it is right around the navel from left to right.
When we saw our GP last week,it was obviously tender on palpitation.
No bowel changes. So, a proper #4 Bristol once a day without much variation.
He said he sometimes had indigestion backing up, but not lately. Although his dental check this morning was terrible, so I wonder about acid by his teeth.
That's about it.


----------



## Farmwife

Interesting. 
I always thought GERD for Grace because she said tummy but when the doc asked where, it was below the belly button. 
Of course her main area was the TI section that showed problems. 

I use green tea for relief on my acid reflux. Peach flavor is my favorite. It works for me.  It takes about a week to work. 
However, this didn't work on Grace. Lol, now we know why.


----------



## Maya142

What about nausea? Any nausea? Does he get full quickly when eating?

If it's pain after eating, I wonder if it's a motility issue.


----------



## Jabee

Acid can damage teeth terribly. Poor guy, he is really suffering. Since Gaviscon didn’t help him I’m questioning GERD. Although if I weren’t taking my PPI I don’t know how much it would help me, either. I’m also wondering about nutritional deficiencies weakening his tooth enamel. He really does need to be scoped, doesn’t he. Has he had any blood work to test his vitamin/mineral levels?  Any chance he could have celiac disease? When I was diagnosed with it my one symptom was severe pain; I never had diarrhea. With H’s headaches and her brother’s pain you’ve got your hands full. I really hope the omeprazole works.


----------



## my little penguin

Is he still on dairy/cows milk ?
Does he do better with a low fat low fiber low cal meal (snack )?
Ds has gastroparesis which we thought was ibs at the time since his stomach hurt /nausea etc
Wouldn't eat much 

Non ibd kiddo we were worried about ibd 
Scopes looked clean but had severe lactose intolerance which no one even considered since the kid was drinking large amounts of milk a day 
We tried gerd meds for him prior to scope 
And no luck 

Ds takes vsl#3 double strength prescription  probiotics to help with his GI /rectal symptoms 
They do help him 

Hard to know what is going on


----------



## Pilgrim

Maya142 said:


> What about nausea? Any nausea? Does he get full quickly when eating?
> 
> If it's pain after eating, I wonder if it's a motility issue.


No nausea and if he stops eating prematurely it's pain, not fullness as far as I know.


----------



## Pilgrim

My Little Penguin he has been completely dairy free since July. He had been having eczema and also stool accidents last year for months. Taking out dairy has solved those issues.
Our meals are typically low fat and high fiber. He will sometimes eat a snack but it depends on pain.
Jabee I think it does need a scope. Celiac is always possible, I know they will check.
He will get full nutritional labs at the GI. His basic labs - hemoglobin and such were fine.


----------



## Maya142

High fiber could be worsening the pain pain, if it is Gastroparesis. The symptoms are usually pain after eating, nausea, early satiety (feeling full after a few bites for example) and for some kids, vomiting.

Some kids lose weight, others do not. The symptoms can REALLY vary. You would need a gastric emptying scan to rule it out - scopes won't really tell you anything if it's Gastroparesis (though I do think he needs them, since there is Crohn's in the family).

Worth asking your GI about.

Sending hugs - hope the GI has some ideas for you.


----------



## kimmidwife

Sorry you are dealing with all this. Itmis not fun having a second one with issues. Let us know what the GI says.


----------



## Pilgrim

kimmidwife said:


> Sorry you are dealing with all this. Itmis not fun having a second one with issues. Let us know what the GI says.


Thank you. I will update after we travel home.


----------



## crohnsinct

Who knows Pilgrim.  The Rome criteria says recurrent abdominal pain or discomfort at least 3 days/month in the last 3 months associated with two or more of the following: Improvement with defecation. Onset associated with a change in frequency of stool. Onset associated with a change in form (appearance) of stool. 

O never had pain which was the primary diagnosing factor.  So really, who knows.  I guess if you can have IBD without change in bowel habits then it is possible to have IBS without a change also.

It could be so many things.  IBS is a dx of exclusion so I think you are smart to investigate other causes. Celiac, allergy and IBD would be top suspects.  I just don't get them not covering a fecal cal test.  It could save them from costly scopes and save him from having to go through them.  Payors can be so short sighted sometimes. 

If the GI wants a scope no matter what then there is really no need for the fecal cal as the scopes will really tell the story.  

Was he getting some imaging?  When does that happen?  I guess there is a chance this could be constipation????  I have heard of kids being pretty miserable with some impaction and still having what appeared to be normal bowel habits.  I am going to cross my fingers for this one.  

Going to check on your girl now.


----------



## Pilgrim

Crohnsinct,
If there's any word that seems more the devil, it's "constipation".
Ultrasound in a week.
It's good to see you back! Don't forget to update somewhere about your girls, plus new GI and all!
ETA - found the update


----------



## Catherine

Do you have any previous blood test results for hemoglobin?   If so has been any drop hemoglobin over time?


----------



## Pilgrim

We had H's brother's visit to GI. Scope in the next 3 months (backlog). He is taking Miralax just in case it provides relief from the pain. So far, not.
They ran several blood tests and a stool test. They only can run fcal on confirmed IBD, so we won't be getting that test.
He mentioned h pylori and celiac as possibilities as well as Crohn's. The scope should get us the answers. 
If anything interesting comes from test results, I will update.


----------



## my little penguin

Hugs on having to wait 
Btdt for scope on kiddo two and it's so hard
Even without a wait (they got him in Igor the scope in less than a week )
Never do back to back scopes


----------



## Maya142

Wow!! That is quite a wait!! Your poor little guy. Is there any chance there's a cancellation list to get him in sooner?


----------



## Pilgrim

We're used to waiting, lol! Expectations are low. When H had her diagnosing scopes, we had to wait 12 weeks on pathology to get results. But, I digress...
I think they'll bump him up if he starts bleeding. Also maybe something will turn up in the labs?
But poor kid, only made it through half a day of school today (he's missed about 8 days so far), and I am thinking of home schooling until we get through this. So much stress every morning to get him going due to pain.


----------



## Farmwife

I never wanted to homeschool.  But now I love it. 
Of course,  she was taught up thru 2nd grade. 
So the foundation was laid. It makes it a lot easier for me. 
It does ease my mind to know that I can work with Grace's health issues and tailor her classes to her.
Plus,  on a side note, not that out should matter.......
I don't have to worry about future blizzard. Lol


----------



## kimmidwife

We love homeschool it has been a blessing especially for kids with health issues. Hugs in having to wait. I know it is not easy. Hoping they get some cancellations and can get him in sooner.


----------



## Jabee

Gosh 12 weeks is a long time to wait. What grade is he in? There are a lot of people who homeschool their children; I think it depends on both the child and the age. I’m assuming his school knows about his medical issues? Could his teachers be helpful about sending work home and modifying his assignments? So sorry he’s no better.


----------



## Pilgrim

Jabee said:


> Gosh 12 weeks is a long time to wait. What grade is he in? There are a lot of people who homeschool their children; I think it depends on both the child and the age. I’m assuming his school knows about his medical issues? Could his teachers be helpful about sending work home and modifying his assignments? So sorry he’s no better.


We don't have a diagnosis for him so there's nothing I can tell them but his teacher is aware there's an issue. Luckily he's a good student and hasn't fallen behind. 
He's 9 years old.


----------



## Pilgrim

So in case there is a constipation issue my son was put on one cap of Miralax per day. First few days were  normal 4 Bristol, and now liquid or very soft and he's had two accidents related to urgency. One of the accidents after I dropped it down to a half cap. 
I guess I will call GI and see if we can drop it. This would be a nightmare for him at school. Pain levels are the same so I think it doesn't help anyway.


----------



## my little penguin

Just remember any change to miralax is actually whatever dose it was three days before 
It takes three days to start working 
So if he was only had one day of 1/2 cap 
Then that was actually the dose from two days before 

That said maybe GI will let you stop and then start at 1/4 cap 
You can use a kitchen gram scale 
Put the cap on 
Hit Tare so it reads zero 
Then slowly start at 3-4 grams etc
Or what the GI recommends


----------



## Pilgrim

Thanks!


----------



## Farmwife

Second what mlp said about the 3 day rule on miralax.
Grace was up to 3 adult doses a day. 
Ya, that was fun trying to get a young Grace to drink. Lol
Also push water big time. Since miralax pulls water from the body it can actually cause constipation and dehydration.


----------



## DanceMom

Our GI does not order Miralax unless an x-ray shows constipation (or it is obvious). Just be cautious if you're not sure that constipation is the issue. I used to think common medications like Miralax and Ibuprofen were relatively harmless. Then I watched A have a scary reaction to a very common antibiotic and my opinion changed. Hope your boy gets some relief.


----------



## Pilgrim

We are still waiting on scope date. All of his Labs, 11 vials worth, came back normal. His pain is steady on every day. What is this?
Could it even be Crohn's with all normal labs? 
This is turning our lives upside down. He is not coping well.
I am calling GI tomorrow to beg for as quicker scope.


----------



## Jabee

Please forgive me for not remembering. Has he been tested for celiac disease? Has he been evaluated for abdominal migraines? In addition to the 50,000 other things you are doing, it might be worth checking that out. 

https://americanmigrainefoundation.org/understanding-migraine/abdominal-migraine/

https://www.ncbi.nlm.nih.gov/pubmed/11817981

https://www.ncbi.nlm.nih.gov/pubmed/9890466

It must seem like I am foisting migraines upon you! I don’t mean to! It’s just one of the things that pops into my mind when thinking about children and abdominal pain. I grew up with headaches, my sister with stomach aches; there is a strong family history of migraines on my Mother’s side. 

This must be so difficult for you; sorry I can’t be of more help.


----------



## Farmwife

All normal labs here! Only a scope showed the issue.


----------



## my little penguin

Normal labs here as well
Only biopsy showed issues


----------



## Maya142

Normal labs here - scopes showed ulcers in the colon and very red and friable TI. The only thing her labs showed was anemia.

M's only symptoms at the time were abdominal pain and constipation. I was SURE it was IBS and we were ruling out IBD. 

I really hope they can get him in for scopes faster. Can they admit him through the ER for pain? Once you're inpatient, scopes can be done the next day (at least in the US, no idea about Canada).


----------



## Pilgrim

Unfortunately the people who do pediatrics are 4 hours away. I don't know if I would trust anyone here to do it. I think ER trip might get him a CT scan in our location. Would that help? Or just a bunch of radiation exposure for nada?
H was anemic with elevated esr and low albumin when she was initially scoped but things had been terrible for a long time by that point.
Farmwife and My Little Penguin, did your kids have pain then?


----------



## Pilgrim

Jabee we haven't looked at abdominal migraines - I will read about that. They ran the celiac panel on him though. It was negative.


----------



## Maya142

A CT scan could show inflammation, if that is the issue. 

Would you be able to drive to a pediatric hospital? I know it's far, but would it be more likely that they'd do testing or admit him there? I'm just thinking that an adult hospital will not really know what to do with an 9 year old in pain. A pediatric hospital is more likely to admit to find out the cause - at least, that's the case here.

In the juvenile arthritis world, since there are so few pediatric rheumatologists in the US, driving 4+ hours one way is common. It's tough, but that's the way it is. We were lucky that our pediatric rheumatologist was only 2 hours away.


----------



## Maya142

A CT scan could show inflammation, if that is the issue. 

Would you be able to drive to a pediatric hospital? I know it's far, but would it be more likely that they'd do testing or admit him there? I'm just thinking that an adult hospital will not really know what to do with an 9 year old in pain. A pediatric hospital is more likely to admit to find out the cause - at least, that's the case here.

In the juvenile arthritis world, since there are so few pediatric rheumatologists in the US, driving 4+ hours one way is common. It's tough, but that's the way it is. We were lucky that our pediatric rheumatologist was only 2 hours away.


----------



## my little penguin

It would need to be a ct entography not a regular ct 
And adult hospital have much higher radiation settings on their machines than pediatric hospital 
Pediatric hospitals go with the lowest possible “dose”


As far as my kiddo prior to dx 
Abdominal pain 
Rectal prolapse 
And no weight gain 
Which turned into slow weight loss
And 8 months later rectal bleeding so he was scoped 

If the pediatrician is 4 hours away how do they handle kid stuff 

I know a parent here drove to sick children’s ER 
Then was admitted tested /scoped quickly


----------



## Pilgrim

I am just going to call GI and honestly ask if we could do that - drive to ER and get a scope. Maybe he'd even tell me when he is on duty.


----------



## Pilgrim

Have a there is no "symptom relief between episodes" which I think would rule out abdominal migraines. There aren't even episodes. It's been pretty much relentless abdominal pain. Usually in the moderate pain category. Every few weeks he might have a couple of mild pain days but those are coming less and less.


----------



## crohnsinct

Pilgrim said:


> Could it even be Crohn's with all normal labs?
> This is turning our lives upside down. He is not coping well.
> I am calling GI tomorrow to beg for as quicker scope.


O.K. I know you know the answer to that question and you are just tired and desperate to get help for your son and maybe a little desperate for it not to be IBD. Not that I am saying it is that.  BTDT. But in the interest of a complete response.....  

T had normal labs and normal growth and everything.  Her only symptom was abdo pain.  FCP was the kicker for us.  Is there any way you could push the GI to get that test done right away.  I get having to wait for scopes, room scheduling, staff, time etc.  But an FCP is no skin off anyone's nose. 

Celiac testing can also come up negative but Celiac could be found on endoscopy.  It just happened to be girlfriend's daughter. But don't pull gluten until after an endoscopy because then results won't be accurate.   

I hate to even suggest this because you know how I feel about it but it could also be IBS (I think I just threw up a little in my mouth).  Have you looked at and tried the FODMAP diet?  It doesn't treat IBD whatsoever so you could try it and still not screw up scopes, FCP etc.  It is a hail Mary pass at this point but I remember being in your position and desperate to try anything.


----------



## Farmwife

Pain, yes!
Cycles but never ending.
It finally stopped when she started Humira.


----------



## my little penguin

I wouldn’t change diet fodmaps or others wise
Since you may be fixing something other than ibd 
My oldest was scoped horrid belly pain

Scope found severe lactose intolerance even though kiddo drank milk by the gallon 

Hope the GI helps 
But wouldn’t expect them to say go to ER  to be scoped 

They probably wouldn’t be allowed to say that 
Unless they felt he actually needed the ER that minute 
Vs you as a parent who is concerned  for your child taking them to the ER


----------



## Carolina*

Pilgrim said:


> Jabee we haven't looked at abdominal migraines - I will read about that. They ran the celiac panel on him though. It was negative.


I am on a Celiac forum also, it is very common to have negative panels and still have Celiac or gluten intolerance.


----------



## DanceMom

A was sick since birth - FTT, bloody stools and diarrhea, erythema nodosum...lots of symptoms. Labs were always mostly normal which delayed a diagnosis. If something was off, even way off, they'd consider it a fluke. Sure enough, tested again a few months later and it'd be normal again. Very frustrating! I think that some kids are very sensitive to what's going on in their bodies and they detect a problem before science can. Just seems to be that way in our experience. If the scope doesn't give you answers (and it only sorta did for us) wait a short time then continue your search for answers. Unfortunately your search could last years. We finally settled on a generic diagnosis.


----------



## Catherine

Do you access to the blood results?  Do have any previous lab results?

If so compare the results and post any results where there has been a change.  Look at hemoglobin levels, ferritin, and any other iron numbers you can find.  Just compare the results.

You are looking for a trend either way.


----------



## Pilgrim

my little penguin said:


> If the pediatrician is 4 hours away how do they handle kid stuff


In our experience the GP will try and call a pediatrician to get med recommendations. It's not perfect. Not sure about other kid stuff.


----------



## Pilgrim

Catherine said:


> Do you access to the blood results?  Do have any previous lab results?
> 
> If so compare the results and post any results where there has been a change.  Look at hemoglobin levels, ferritin, and any other iron numbers you can find.  Just compare the results.
> 
> You are looking for a trend either way.


These would be his first full panel. Plus I don't have access.


----------



## Pilgrim

crohnsinct said:


> O.K. I know you know the answer to that question


To be honest, I didn't know the answer. I do know that now, down the road of meds, my H can have fine labs and be riddled with disease. But I was not sure that any of our kids had good labs at diagnosis. It's surely been said but we have years of stories, worries, cups and saucers, bottles of wine and bars of chocolate on this forum. So thank you all for saying it in black and white on this thread so now I  can accept it as a real possibility. It will give me fuel as I argue the necessity for quicker care.


----------



## Pilgrim

He has scopes after Christmas! I am bringing chocolate for his secretary who was a great help. He has to start prep Christmas day but I don't care!


----------



## Farmwife

Yes,  a big box of chocolate is in order. 

Now remember that Grace's first scoped  looked clear visually but the biopsies showed a different world.


----------



## Pilgrim

That is good to know! I didn't realize that was a thing.


----------



## my little penguin

Great news 
Same here
Ds looked great visually 
GI even commented about things to do for ibs etcin the consult room after that first scope

GI of course changed his tune after the biopsy came back
After that any scope done GI says let’s wait for biopsy first


----------



## pdx

Pilgrim said:


> He has scopes after Christmas! I am bringing chocolate for his secretary who was a great help. He has to start prep Christmas day but I don't care!


So glad to hear this!


----------



## Maya142

Glad you got a date!!! What a relief!!


----------



## crohnsinct

Good for you!  O.K. now we don't have to force the FCP issue, although it would be nice for a baseline but I will stop being greedy.


----------



## CarolinAlaska

My daughter had normal labs for years, literally.  They finally took her serious when she was 12 without a bit of puberty, severely underweight and in constant pain.  Before that it was IBS, IBS, IBS.  The only lab that ever confirmed any abnormality was her fecal calprotectin.  Other labs would be off a little here and there, but not conclusive.  Even original scopes and biopsies were inconclusive.  Pill cam was diagnostic originally.  I hope they can find answers for your son.  I'm sorry he's suffering.


----------



## Mehita

Good news! As the others have said, be sure a biopsies are done. Good luck!


----------



## kimmidwife

Great news about getting a date for scopes!
My older daughter is also one of those with normal Labs all the time. Fecal calprotectin is the only test that works for her.


----------



## Pilgrim

Scopes done. He has small ulcers in his colon, not too many, and some changes in the TI. 
Biopsies will be at least a few weeks for results.
Dr. Is planning to schedule an MRE for him.
He said if it's Crohn's, then we caught it early.
I asked him if what he saw would cause pain for months and he reminded me that you can get pain with ibs too and nothing on scopes. Really no correlation.
His stomach looked fine. So at least we know there was no gastritis, etc...
Anyone get a mild Crohn's at diagnosis? What happens with meds? H was more severe.


----------



## my little penguin

Ds had a visually normal looking scope 
Biopsy results showed acute and chronic inflammatory changes plus granulomas so Crohns dx
GI tried pentasa at first since he wasn’t convinced completely of Crohns
MRE showed thickening in the TI
Second opinion said yep Crohns
So Ds was switched to een /6-mp 
Which he took for 8 months 
Added steroids twice 
Second scope showed inflammation 
So switched to mtx and steriods
Too many extra intestinal manifestation when steriods were lowered. 
So switched to remicade 1 year after dx


Kids even mild kids tend to need an immunosuppressants minimum 
They now started with mtx 

Your Dd was only 3 so even severe Crohns at three starts woth immunosupressabts typically 
Then moves up to biologics 

Since your in Canada who knows how they will start 

Did GI try to explain away the ulcers as ibs ???
That’s concerning 

Especially since he had belly pain and they found evidence of ulcers 
Wow  

Big hugs to you


----------



## my little penguin

Wanted to add you can get belly pain with Crohns and inflammation 
Because Crohns hurts


----------



## Pilgrim

No, I should have explained that better. GI was trying to explain to me that pain level does not always match what he sees visually.
But you are wonderful to be irritated by the idea he might say IBS.
Dd started with Aza once biopsies were returned. I wouldn't allow ds to be given AZA because of risk. That drug scares me more than biologics. 
I wonder if what he saw today could be something else. Scope prep? He was very mellow about it. Said "if" a few times...


----------



## Maya142

> Scopes done. He has small ulcers in his colon, not too many, and some changes in the TI.


That sounds exactly like my daughter's first set of scopes. She had ulcers through her colon - from her rectum till her cecum. Her TI was friable and bled when they biopsied it.

Biopsies showed granulomas and chronic inflammation, as well as acute inflammation. Every single biopsy showed inflammation.

Our med situation was complicated, because M was already on a biologic for her arthritis, but it didn't treat IBD. Since she was already on a biologic, her rheumatologist felt it would be best to switch to one that treated both diseases. So we switched to Remicade.

She was also on MTX for her arthritis.

We added Entocort because she had abdominal pain and Remicade took a while to kick in.

So essentially we treated her Crohn's very aggressively and I am SO glad we did. Scopes done 8 months later looked so much better. Her colon looked "perfect" and her small bowel looked slightly red but mostly normal. Biopsies were NORMAL except for in her TI where there was mild inflammation.

She has been on biologics since then and we have been lucky enough to avoid complications like abscesses, fistulae and strictures.

I am not sure what your med options will be since you're in Canada but if you're not willing to try Imuran (and I can understand why), then probably MTX will be used if the doc is not willing to try a biologic yet.

Sending HUGS :ghug:. Given H's history, I would prepare yourself for a Crohn's dx.


----------



## my little penguin

Glad I miss understood 
I would think mtx as well as a first step 
Given family history and you caught it early 
When used as a monotherapy 
Mtx typically is shots 
Only pills are used for combo with biologics 

More hugs your way 
I hate the @ifs


----------



## Maya142

I wanted to add - my daughter takes Levsin for belly pain. It is an IBS med but it works well for crampy belly pain. I just wanted to mention it because whatever he is put on will probably take a while to work and your poor kiddo has been in pain for quite a while now. 

The other option for pain relief would be EEN or steroids. Those would probably work a lot better. Do you think he'd be open to trying EEN?


----------



## Pilgrim

Maya142 said:


> I wanted to add - my daughter takes Levsin for belly pain. It is an IBS med but it works well for crampy belly pain. I just wanted to mention it because whatever he is put on will probably take a while to work and your poor kiddo has been in pain for quite a while now.
> 
> The other option for pain relief would be EEN or steroids. Those would probably work a lot better. Do you think he'd be open to trying EEN?


At this point I think the pain he thought was stomach pain must be TI or other intestinal pain since his stomach looks fine.
He used to love drinking his sister's shakes(foreshadowing?) I think he could do EEN but now I want to wait for MRE so all the diagnostics are in.. 
He's lately moody so would hate to live with him on steroids but we do what we must.
Does Levsin work for any part of the system?


----------



## Pilgrim

P.S. Thanks for the hugs. I think I am in denial so I might need them again later too.


----------



## my little penguin

Levsin works sometimes on intestinal cramping 
Other kids use bentyl 
Ds does better on bentyl 
But has tried both 
It’s hit or miss 
Both are anti spasmodics

Definitely wait till after MRE before changing anything 
Dx first 
treatment afterwards 
Better to know what your treating 

Sometimes once kids start to feel better even in steriods 
They act better sorta thing 
It’s hard to be up beat when you feel horrid and no one tells you why 

Poor kiddo

Hope you get answers quickly 
They really make you wait a few weeks for biopsy results 

When my otherkiddo (non ibd) had a scope for possible ibd
Ds GI has them give him the biopsy results the next day 
GI figures one kid with Crohns was difficult enough 
He didn’t want us to have to wait longer than necessary 

Normally out patient biopsy results are given within or less than a week 
Inpatient scopes within 24 hours 

The past 4 scopes have been inpatient so very spoiled
Next one is outpatient


----------



## Pilgrim

They told me 6-8 weeks! But they put a "rush" on it so if I'm lucky ...2 weeks.
It was 12 weeks for H!


----------



## my little penguin

Your poor mom 
That’s horrible to make you wait so long 
3 weeks for a “rush”


----------



## Farmwife

Hugs, hugs and more hugs!

Even if it was suspected...... Your never ready! 

Not much I can say but offer an ear if you need one.


----------



## Maya142

Levsin does work for intestinal pain. I mentioned it mostly because I figured he can't start EEN or steroids till you have a firm dx. So in the mean time, maybe Levsin could help. My daughter's pain is in her TI based on where it is located (lower right quadrant).

Steroids may make him moody but sometimes they have the opposite effect. If the kiddo is feeling better, then they become so much happier. Sometimes my daughter is SO happy because her pain is FINALLY better and is bouncing off the walls on steroids, but other times she cries easily becomes moody.

It also depends on the dose for her.

Hang in there - 2 weeks is not too bad...especially considering for H you waited 12 weeks!! We only have to wait a week for outpatient scopes. Sometimes two or three days.


----------



## pdx

Glad you are starting to get some answers, even if it's not necessarily the answers that you wanted... Hope the biopsy results come back soon--it's so hard to wait.


----------



## crohnsinct

OK. I will let you stick your head in the sand a little longer.  When I had my "you are getting old time to screen for cancer" scope, I had ulcers in my TI and my colon.  The GI was concerned because of my girls' history so took biopsies and it was all normal.  She chalked them up to prep.  I have actually heard that story from a few people.  BUT they were all non symptomatic.adults.  

What did the GI mean by "some changes in the TI"?  Has he been scoped before?  What kind of changes?  

I don't like IF and I don't like waiting.  HUGS!  

T was "mild" an went right away to MTX.  20mg.  She did injections for a while and then moved to oral.  It takes a while to work fully so most GI's have you attack the disease with either EEN or steroids while waiting.  

Sorry if I am misunderstanding anything or missing anything.  Reading and typing in the dark with severe jet lag,  I will catch up again tomorrow.


----------



## DanceMom

A's scopes are never "impressive". Mild acute inflammation and the elusive lymphangiectasia. It doesn't look horrible, but it's certainly life altering. We were offered bandaids like Bentyl and Levsin but they didn't help. IVIG was life changing and Cellcept fills in the gaps. 

He may or may not have Crohn's. I think it's important to remember that Crohn's is probably one of the more common diagnoses he could have. It certainly sounds and looks like more than IBS. Sorry Mama.


----------



## kimmidwife

I totally understand about keeping your head in the sand. I was the same way when kiddo number two was diagnosed. Sending you lots of hugs too!!!


----------



## crohnsinct

In the category of things we forget.....

If you can, show up to mre with very little in their stomachs and with them hungry. It helps get the barium down.


----------



## Pilgrim

We received the news today that C has Crohn's (H's brother). 8 weeks of EEN plus 20mg Mtx injections to start asap.
He's handling it ok. Truthfully we've been really distracted getting the tb skin test and chest xray done, buying the shakes and so on.
I'm bribing him to do EEN so he's on board.
I saw it coming so just in taking care of business mode now. I think the shakes will help his abdominal pain.
Tomorrow we talk to the dietician, I guess he'll need about 8 plus calorie shakes a day, he's about 78 lbs. Does that sound right?
I'm keeping him home a few days to get used to the dietary change.


----------



## pdx

Oh--so sorry about this news, even if you were expecting it. I hope that there is some relief in at least knowing what it is and being able to start treatment. Good luck with EEN; hope it brings quick relief to his symptoms.


----------



## my little penguin

Great big hugs
Even if you know it’s coming
It’s still sooo hard to hear 
I think the calories depends more on age than weight 
“Plus” versions are harder on the gut 
Might be easier to start with the regular version first 
Since he already has a lot of abdominal pain

What is his age ??


----------



## my little penguin

https://www.nhlbi.nih.gov/health/educational/wecan/downloads/calreqtips.pdf

So about 2000 at least 

https://www.nestlehealthscience.us/brands/boost-kid-essentials/boost-kid-essentials-1-0

So about 9 a day at 240 calories each 
More if he is hungry


----------



## crohnsinct

I am so sorry! Sadly, I know how you feel.  Like you were somehow sucker punched.  It's not fair but on the brighter side of things, you are way more educated this time around and IDK if it will be the same between a brother and sister but it does give them a "special" bonding it is nice that at least one person in the family knows exactly how they feel.  

If he is anything like T, he is probably relieved that it wasn't all in his mind, it is real, people will take him seriously and now he can get treatment.  

You know what is best for your children but for mine I think staying home would have been torture.  They rather liked the distraction of school when they were on EEN.  The first few days they didn't go to the lunch room and got special privileges to drink their shakes in the guidance office. 

I am really so sorry you have to travel this road again.


----------



## Pilgrim

He's 9
I'll pick up some regular formula tomorrow then too.


----------



## kimmidwife

Sending you big hugs!!! It is not easy having two but at least you know what to expect!!!


----------



## Maya142

Sending HUGS!! It is really tough to have a second kid diagnosed. When my younger daughter was diagnosed with arthritis, I was shocked. We went to multiple doctors looking for other explanations - just hoping it was something else.

Eventually, we had to accept that it was arthritis. 

The advantage is that you know the disease and the ups and the downs. Of course, every kid is different, as you already know. My two girls both have AS but they have different "problem" joints and have responded to meds very differently.

But they do have a built in support group right at home . 

In terms of formula and EEN, my daughter was never able to do 100% EEN, but did do 85% EN, 15% food. She went to school while doing it. At that point she was so sick and miserable, she didn't even want to eat.

But he may also have diarrhea while his body adjusts to the formula, so keeping him home may not be a bad idea. My daughter was not able to tolerate Boost/Ensure - caused diarrhea and nausea and belly pain. So watch for that (I know H tolerated them, but C might not). We switched to Peptamen Jr which was good for a while and then eventually Neocate.

Good luck. Hope the MTX works quickly and doesn't cause side effects. My older daughter uses Buzzy for the shots and says she can't even feel them, so if he's nervous about the shots, you could try that.

Sending hugs!!!


----------



## Pilgrim

my little penguin said:


> https://www.nhlbi.nih.gov/health/educational/wecan/downloads/calreqtips.pdf
> 
> So about 2000 at least
> 
> https://www.nestlehealthscience.us/brands/boost-kid-essentials/boost-kid-essentials-1-0
> 
> So about 9 a day at 240 calories each
> More if he is hungry


We can do 9 of the regular shakes!I was thinking it would be about that of the high calorie shakes because last time I talked to a dietician he was eating 2500 calories a day. Which is insane, but kids are different. He eats like a full grown man!


----------



## Pilgrim

crohnsinct said:


> I am so sorry! Sadly, I know how you feel.  Like you were somehow sucker punched.  It's not fair but on the brighter side of things, you are way more educated this time around and IDK if it will be the same between a brother and sister but it does give them a "special" bonding it is nice that at least one person in the family knows exactly how they feel.
> 
> If he is anything like T, he is probably relieved that it wasn't all in his mind, it is real, people will take him seriously and now he can get treatment.
> 
> You know what is best for your children but for mine I think staying home would have been torture.  They rather liked the distraction of school when they were on EEN.  The first few days they didn't go to the lunch room and got special privileges to drink their shakes in the guidance office.
> 
> I am really so sorry you have to travel this road again.


You know, that is happening with the kids. C was always really mean to H because she is the next younger kid from him and on top of that was perceived to be special and favored because she was sick. But lately, something has changed for the better. Now they will be travelling overnight with me to the city for GI appointments-lots of bonding time.
And he probably is relieved. That was the one thing he would say to me at night alone, "Mom, what if I have a scope and nothing is there?"
I think the only thing that really bothers me right now is the road ahead. I can deal with injections and tests and travelling so far for appointments. And all the weird stuff that comes up literally ALL of the time. But when I read here about the older kids, surgeries, emergency room, missing opportunities....but there is no point borrowing trouble.
I feel really bad for kids who are navigating this as young adults.


----------



## Pilgrim

kimmidwife said:


> Sending you big hugs!!! It is not easy having two but at least you know what to expect!!!


True.  But I feel like a robot this time. I never even cried yesterday. It's just part of life around here.


----------



## Pilgrim

Maya142 said:


> Sending HUGS!! It is really tough to have a second kid diagnosed. When my younger daughter was diagnosed with arthritis, I was shocked. We went to multiple doctors looking for other explanations - just hoping it was something else.
> 
> Eventually, we had to accept that it was arthritis.
> 
> The advantage is that you know the disease and the ups and the downs. Of course, every kid is different, as you already know. My two girls both have AS but they have different "problem" joints and have responded to meds very differently.
> 
> But they do have a built in support group right at home .
> 
> In terms of formula and EEN, my daughter was never able to do 100% EEN, but did do 85% EN, 15% food. She went to school while doing it. At that point she was so sick and miserable, she didn't even want to eat.
> 
> But he may also have diarrhea while his body adjusts to the formula, so keeping him home may not be a bad idea. My daughter was not able to tolerate Boost/Ensure - caused diarrhea and nausea and belly pain. So watch for that (I know H tolerated them, but C might not). We switched to Peptamen Jr which was good for a while and then eventually Neocate.
> 
> Good luck. Hope the MTX works quickly and doesn't cause side effects. My older daughter uses Buzzy for the shots and says she can't even feel them, so if he's nervous about the shots, you could try that.
> 
> Sending hugs!!!


I think the kids who have done Humira think Mtx is a walk in the park! He'll get used to it. I do have a buzzy around here somewhere...
I think we did the denial thing for awhile. We went through all of the GERD meds and so on. I get that. It's part of the process. It's interesting looking back on it.
He has to do 100% EEN. No option for partial food. If oral doesn't work, then tube. Or we can go to steroids.


----------



## Maya142

Well that's probably true :lol:. Compared to Humira, MTX is easy! 

I hope he is able to do EEN - fingers and toes crossed. If he needs a tube, it won't be so bad. It really seems a lot more intimidating than it is.

Good luck :ghug:.


----------



## my little penguin

Also remember on the een not all kids tolerate kids boost 
Depends on how much damage is inside 
Ds couldn’t and had to drink peptamen jr 
The good news is those are 250 calories per shake 

The other thing Ds was eating a ridiculous amount prior to dx
He wasn’t absorbing much
But needed far less calories in peptamen jr since his body had to work less to absorb them

We started with 8-9 and just gave him more if he was hungry 
He did drink all of his 
But only after 3 days of tears 
Then he could drink it quickly 
No issues 
A little longer time to get used to oral neocate jr 

About a week 
Again now no issues 

Good luck 

It’s tricky with two woth the same illness 
Mine both have asthma 
But meds and how their bodies react to things is completely different
That was hard to figure out in the beginning


----------



## crohnsinct

Pilgrim said:


> I think the only thing that really bothers me right now is the road ahead. I can deal with injections and tests and travelling so far for appointments. And all the weird stuff that comes up literally ALL of the time. But when I read here about the older kids, surgeries, emergency room, missing opportunities....but there is no point borrowing trouble.
> I feel really bad for kids who are navigating this as young adults.


I think you have a good ability to stay positive but I really want/need to say that you can NOT go by what you read on here.  This is a very small and skewed subset of the IBD population.  Most are on here for a reason.  They are having trouble and need advice.  A lot come here, get what they need and then skip off happily into the long term remission sunset.  I dare say an overwhelming majority of IBD parents don't even know a forum like this exists.  Many kids do well.  Look at O!  6 years with disease and she is doing great.  Sure she has been in a two year funk with the disease but even with that she is at college and thriving.  

As for the missing things, well I think you know what I say about that.  Everyone misses something for some reason.  Some kids miss the big game because of the flu, some kids miss a season because of mono and others miss the year because of a torn ACL.  There are other countless surgeries that could pop up at any time for anyone.  O missed two years of track and had surgery because of her hip.  Had nothing to do with Crohn's.  

The future is bright and your kids have a well IBD educated mama!  Tight control!  Watch the biomarkers!  Look inside! Don't get too set on one therapy that you miss the right time to switch.  You got this!


----------



## Maya142

> I think the only thing that really bothers me right now is the road ahead. I can deal with injections and tests and travelling so far for appointments. And all the weird stuff that comes up literally ALL of the time. But when I read here about the older kids, surgeries, emergency room, missing opportunities....but there is no point borrowing trouble.
> I feel really bad for kids who are navigating this as young adults.


I have one of those VERY complex young adults who has missed out on a lot. She has had a really tough time in the last few years and has been diagnosed with many additional conditions. Ironically, her Crohn's has been one of the easier conditions to manage. 

But anyway, M has gone back to college after taking a semester off to have two surgeries. Yes, her life is VERY different from a typical college student's. She is on about 18 meds and has a color coded excel spreadsheet as a medication schedule. I sent her with 4 pillboxes and an additional big box full of PRN meds and feeding tube supplies and a whole lot more medical stuff.

It is her third day back at college and she is struggling. Not sleeping well, very tired, having trouble remembering all of her meds . But even then, she is so happy to be there. And academically, she LOVES it and is thriving. 

Her life is different and there is a lot we have to work on to get her feeling better and to make her life more "normal."

But even in very difficult circumstances, she finds a bit of joy. Today she texted me to tell me she had "the best chocolate chip cookie EVER" .

These kids are incredibly resilient. They grow up to be smart and empathetic and compassionate. 

And, as my daughter puts it, she has a lot of diseases but she got three kittens because of them . So that's "a pretty great deal" according to her!!


----------



## Farmwife

Sorry about his dx but he has an amazing mum! 

As to calories.
Grace is 71 lbs and almost 9 (this Sunday).
On full EEN she needs about 8 boost boxes.
However,  during a full fledged flare,  I don't think she can do boost. 
Not broken down enough.


----------



## Pilgrim

He drank 10 regular and one plus calories today. Over 2700 calories of formula.
Wowza!


----------



## my little penguin

Woohoo!!!
That’s great 
Hope it calms his belly pain


----------



## Maya142

Way to go C :dance:!! Hope he starts feeling better soon.


----------



## Pilgrim

Hopefully it goes well tonight. GI ended up prescribing 25mg injections. It seems like a high dose to me.
I have Ondansetron to give him to prevent nausea.
He tried school today but called before first snack break. He said pain, but I wonder how much was his anxiety about drinking formula at school.


----------



## Maya142

It's usually the max dose given. I would give Zofran half an hour before you give him the shot. We gave the shot at bedtime, so they'd sleep through the worst of the nausea.

Did the doc prescribe Leucovorin by any chance? It's folinic acid and is used as a "rescue drug" when MTX is given in much higher doses as chemotherapy.  

They only use it with "high" doses of MTX (by high I mean high by Crohn's/arthritis standards, not high by cancer standards) because it does make MTX a little bit less effective - not a big deal at a high dose. 

It really helped both my daughters. Rheumatologists tend to use it more than GIs though.

Both my daughters had side effects at 25 mg of MTX - nausea, vomiting, dizziness etc. For both girls, we had to reduce the dose. For my younger daughter, that didn't help enough and we moved on to different meds. My older daughter is still on MTX, on 15 mg by injection.

Good luck!


----------



## Maya142

> He tried school today but called before first snack break. He said pain, but I wonder how much was his anxiety about drinking formula at school.


Could he take an opaque water bottle, so no one has to know what he is drinking? He could also call it a protein shake - older boys use them to bulk up . That might make it more acceptable.


----------



## my little penguin

Big hugs 
We used hydroflask 
https://www.hydroflask.com

You can’t see what in them 
And they keep it really cold 
We just put it in a lunch box with an ice pack 

But given he just started een it could take a while 
Ds did 25 mg injections of mtx 
Got very ill 
Second lecovorin given 12 hours after the shot 
For ds it still wasn’t enough to keep him from being extremely sick so he was switched back to 20 mg woth oral tablets 

But definitely worth trying 


I now my kiddo took weeks to feel even a tiny bit better on een 
Even with 6-mp


----------



## Pilgrim

Maya142 said:


> Could he take an opaque water bottle, so no one has to know what he is drinking? He could also call it a protein shake - older boys use them to bulk up . That might make it more acceptable.


It is funny you said that! He talked to his best buddy tonight and was explaining that he has to drink "Boost drinks" and the friend literally said, "Like protein shakes? Cool!" You are on to something!


----------



## Pilgrim

my little penguin said:


> Big hugs
> We used hydroflask
> https://www.hydroflask.com
> 
> You can’t see what in them
> And they keep it really cold
> We just put it in a lunch box with an ice pack
> 
> But given he just started een it could take a while
> Ds did 25 mg injections of mtx
> Got very ill
> Second lecovorin given 12 hours after the shot
> For ds it still wasn’t enough to keep him from being extremely sick so he was switched back to 20 mg woth oral tablets
> 
> But definitely worth trying
> 
> 
> I now my kiddo took weeks to feel even a tiny bit better on een
> Even with 6-mp


He likes the idea of a thermos bottle. Too bad I will need to buy four because even with the high calorie formula he will go through four over the school day. Today the calorie count was 3135.
He had the shot and is in bed. I gave him a bucket. If it is tough tonight, I will call about Leucovorin on Monday.


----------



## my little penguin

They are 16 oz thermos 
So only two for school 
Ds drank 16 oz at a time 

As far as getting sick on mtx
Remember you tend to get a honeymoon period for the first shot or two 
Until they get sick
So if you call Monday at least you can have it on hand if you need it 

Good luck 
Hope he sleeps well


----------



## my little penguin

Ds also said they were protein shakes at the lunch table 
His best buddies knew what they really were but 
His average school friend protein shakes


----------



## my little penguin

Depending on your kiddo 
Ds drank 16 oz for breakfast 
16 oz for lunch 
16 oz after school
16 oz for dinner 
Then more as needed before bed

Please let the GI office know he is needing 3135 calories 
That is concerning given his age 
His body may just be trying to make up for earlier losses 

Or his body could be having a hard time absorbing the whole proteins 

Either way just let the GI office know


----------



## Pilgrim

my little penguin said:


> Depending on your kiddo
> Ds drank 16 oz for breakfast
> 16 oz for lunch
> 16 oz after school
> 16 oz for dinner
> Then more as needed before bed
> 
> Please let the GI office know he is needing 3135 calories
> That is concerning given his age
> His body may just be trying to make up for earlier losses
> 
> Or his body could be having a hard time absorbing the whole proteins
> 
> Either way just let the GI office know


Yeah, it seems really odd to me. Plus he would have had more before bed if I had allowed it. 
I will call on Monday, thanks for commenting on that, because I otherwise would have just watched and waited.


----------



## Maya142

Yeah, he may need Peptamen Jr or something that is easier to absorb. Though after Boost, getting him to drink it might be tough!

Hydroflask also has 32 oz bottles. Those are pretty big, but my daughter has the 24 oz one and it's not huge and fits easily in her backpack. She loves them - they keep liquids very cold.

When my daughter was trying her best to drink Neocate, we also got her this: https://www.amazon.com/Zoku-Slush-Shake-Maker-Blue/dp/B00EVHFK7Q

It makes sort of a slushie. She could not bear the taste of Neocate, so we were trying to make it as cold as possible. If he has to transition to Peptamen Jr or a nastier tasting shake, you could try that.

You aren't supposed to freeze formula but I'm not sure about a slushie. my little penguin - any idea?? We didn't count it in her calories if we made a slushie - we were just trying to get her used to the taste and trying to get her to drink it without getting super nauseous.

Peptamen Jr is definitely MUCH better than Neocate so if you do have to switch, don't panic. My daughter hated it at first, but it was drinkable. She got used to it and over time, started liking it.


----------



## Maya142

> It is funny you said that! He talked to his best buddy tonight and was explaining that he has to drink "Boost drinks" and the friend literally said, "Like protein shakes? Cool!" You are on to something!


I work as a teacher in a high school...teenage boys are always talking about protein shakes :lol:!


----------



## my little penguin

No slushee
They can’t be frozen or taken below 32 F which you need to do to freeze it 
When Ds has to start drinking neocate 
We took a glass filled with ice and dumped neocate in that so it got cold but not slushee cold
Peptamen jr we got stuck with only one flavor 
They only carried vanilla 
So we added chocolate syrup to it at first 
Later he drank it as is 
They make a chocolate version
We just couldn’t get it at the medical supply place that covered it 

If he likes chocolate and has to switch 
Aim for chocolate 
It helps cover the taste 
Neocate jr Lp drinks orally the chocolate version 
Couldn’t even sip the other versions 
Hugs


----------



## CarolinAlaska

Yes, what age?  J was does 6 bottles of Peptamen 1.5 and handles it really well even when she can't handle Ensure.


----------



## Pilgrim

CarolinAlaska said:


> Yes, what age?  J was does 6 bottles of Peptamen 1.5 and handles it really well even when she can't handle Ensure.


He's 9 and just under 80lbs.


----------



## Pilgrim

Question. He is really constipated from the formula and it's causing more pain. I will up his water intake tomorrow. Meanwhile any suggestions? Is there anything I shouldn't give him?


----------



## Maya142

Miralax should be fine. But it will take 3 days to work. 

We use Milk of Magnesia for my daughters when we need something to work faster. That usually works by the next day. With my younger daughter, we give it at night and she has a BM in the morning. She doesn't have cramping with it - it's gentler than something like Dulcolax. Our GI said using it occasionally was fine and when her constipation was pretty bad at diagnosis, she was allowed to take it daily since Miralax did not work for her then.

On the bottle, it says 6-11 year olds can take it. Generally I'd run something like that by the GI but not sure you'll be able to reach him/her on the weekend? Does your hospital have a GI on call number so you can reach a pediatric GI?


----------



## my little penguin

The other thing is his body may need to get used to all liquid and less by product (waste)
Ds takes miralax daily - higher doses of miralax daily when he is all formula 
When Ds gets comstipated to cause pain
His GI allows us to use up to three doses spaced throughout a single day 
This really gets things moving 
So always be prepared and check with your GI first 
Since my kiddo is 14 
Don’t remember what age that we first started that 
But I know it was a while ago 
So definitely check with his GI first


----------



## Pilgrim

my little penguin said:


> The other thing is his body may need to get used to all liquid and less by product (waste)
> Ds takes miralax daily - higher doses of miralax daily when he is all formula
> When Ds gets comstipated to cause pain
> His GI allows us to use up to three doses spaced throughout a single day
> This really gets things moving
> So always be prepared and check with your GI first
> Since my kiddo is 14
> Don’t remember what age that we first started that
> But I know it was a while ago
> So definitely check with his GI first


We were moved up to two full doses a day. Things moved but unforfunately he had no warning. So I guess it's still leakage around a solid mass? IDK. Fortunately, he was home when it happened. He hasn't been to school for a week and a half. 
I'm supposed to call GI office and let them know how it's going today. So we'll see what they say.


----------



## Pilgrim

They are giving us the Pred option at 40mg. Anyone have this dose with their kid? We are having a miserable time with EEN.


----------



## crohnsinct

Aw pumpkin!  Yes. That is what O did at dx. she was inpatient so got her prednisone via IV but when discharged she was on 40mg. 

Good luck!  I hope this helps him!


----------



## Maya142

We have done 40 mg, but my daughter was older. Expect side effects - puffy face, very hungry and you may even have mood-swings. My daughter becomes upset really easily on 40 mg of Pred and very moody. 

But it worked really well for her!


----------



## my little penguin

40 mg here at age 7 at dx 
But to put it in perspective Ds was given 60 mg at age 5 for asthma flare 

Hope the steroids help 

Poor kiddo


----------



## Pilgrim

When I told C he had to try going to school for the afternoon block, he went into his room, slammed the door, threw his pillows and blankets plus everything off the tops of the bookcase, and yell-cried.
When I dropped him off he said, "I hate you."
I hope it's the pred. But it's only day two.


----------



## crohnsinct

Ooooh!  He is a feisty one.  This to shall pass.  

Prednisone could also have the opposite effect and make a kid giddy happy.  It does with O...but then again that could just be because they are so happy to be feeling better that they are happy.  

Hopefully as soon as it kicks in and he is feeling better his mood will even out.  

What is the taper schedule? How long do you have to stay at 40? 

Sometimes, I find the power of suggestion works in kids to our benefit but also against us. 

For example: With Methotrexate, doc tells a parent and kid, "could make you nauseous, feel like a truck hit you etc".  Kid sits around waiting to be nauseous and voila they are sick to their stomach.  I had this with O.  She started taking mtx and came downstairs the next day and said, "hey mom?  When am I supposed to start feeling nauseous?".  So after that I asked the GI just to let me know the possible side effects to watch for.  My kids don't know anything and I admit to white lying here and there and saying, "hey possible side effect of this med is it makes you happy".  Voila!  Happy kid.  I will pay for their therapy with all the quarters I rack up for the I hate you's!


----------



## Pilgrim

Lol!

40mg for 1 month then 5mg per week taper.

It was like that for H with Budesonide. Suddenly she could reach the high bar, go hiking, carry her little sister on her back. She felt like a superhero.

C is a mommas boy, and while he can be moody, I haven't been the target until now. He probably just feels awful.

I'll try the power of suggestion. Good idea.


----------



## Maya142

My kid is a mix - she has times when she is SO HAPPY to be feeling better, she feels like she can do everything (and then she does too much and pays the price the next day). But other times it has made her very moody.

One time she cried in Target because I offered to carry her crutches because she was having trouble walking with them.

Another time she cried when she couldn't find matching socks.

So she doesn't really get mad, she gets sad .

Fortunately she is old enough to later laugh about her tears.

That is quite a high dose for a little kid...I would definitely expect other side effects too (though I agree with CIC, no point in telling kids about them, especially young ones. Teens should know, I think). Expect hunger - he may even say he is STARVING, weight gain, puffy face/cheeks. We also always have stomach pain and reflux with steroids. Adding a PPI or Zantac can help.

Hopefully you will also see decreased pain and increased energy soon too.

We haven't ever done 40 mg for a whole month - just a week or 2 then tapered by 5 mg. Yikes! It could be a long month!


----------



## Pilgrim

I appreciate the honesty!


----------



## Pilgrim

After 2 weeks post diagnosis the constipation resolved! So happy. 

He still has so much pain. We're on 3rd week 25mg mtx, and day 9 pred 40mg.

Both the kids had MRE last week, so I am waiting for "the call".


----------



## Pilgrim

Great news!!!!! Our MRE reports came back and both H and her brother C showed no signs of Crohn's in the small intestine! So they're both dealing with disease confined to the Terminal ileum and some right side disease. 
It is a huge load off of my mind! It's terrible to wonder what's lurking between the reach of the scopes.
So glad it's nothing.


----------



## my little penguin

That’s good


----------



## Maya142

That's great!! My daughter is the same - nothing in her small bowel except terminal ileum. 

Has C's pain improved at all on the Prednisone? Some times pain takes a while to go away, especially if there has been inflammation for a long time.

How is he doing with the MTX?


----------



## Pilgrim

Maya142 He is still in so much pain. This is the part I don't get. GI said to me that the amount of damage on scopes was pretty small. The ulcers were small. He didn't think C had pain levels that correlated. If we had seen more damage in small intestine it could make sense but I don't know what to do with him. This is day 11 pred. 
We are going to family counselling this morning. Just a local person at our clinic. I am going to ask her to give him some ideas for pain management.
As for the mtx - we do it on Friday and he  has loss of appetite on Saturday and some nausea but ok on Sunday.  Pretty normal. He doesn't want to take Zofran. Not sure why. 
He is really moody on pred, but I figured out it's mostly hangry. Once he eats he is much better and more reasonable. I'm a home bakery. Have a muffin, kid!


----------



## crohnsinct

Is he taking a PPI with the steroid?  He is on a higher dose and a little guy.  Prednisone can cause some gastro issues.  O's doctor usually gives her omeprazole when he puts her on prednisone. 

Sorry if you mentioned he is on one.  I am on my phone and it is acting up and not letting me check past posts.


----------



## DanceMom

A's scopes never looked severe but her pain was. I think people just perceive things differently. Over time she's learned to deal with it and carry on. Your son will too. Hugs!!


----------



## Maya142

> Maya142 He is still in so much pain. This is the part I don't get. GI said to me that the amount of damage on scopes was pretty small. The ulcers were small. He didn't think C had pain levels that correlated. If we had seen more damage in small intestine it could make sense but I don't know what to do with him. This is day 11 pred.
> We are going to family counselling this morning. Just a local person at our clinic. I am going to ask her to give him some ideas for pain management.


It could be pain amplification from long term inflammation. Then you get much more severe pain compared to the inflammation/damage found. For some kids, it resolves on its own over time - as the inflammation goes away, it lessens, and then slowly it goes away. It does take time.

For other kids, it becomes a chronic issue. 

The best things for it are keeping things are normal as possible. It sounds awful and cruel to send a kid in awful pain to school, but it will keep him distracted. If he's at home, he is just going to dwell on the pain. Exercise also really helps - it releases endorphins which are natural painkillers. It doesn't have to be intense exercise - swimming or walking or anything he loves to do that keeps him moving.

Being distracted in general helps - when my daughter is in a lot of pain, she finds something to focus on. Sometimes it is TV, or a book, or her cats. Anything that gets her mind off the pain.

PT can help get him active and they may also have some pain management ideas. I'm sure you've already tried heat and ice, but what about a TENS unit? Massage?

And of course, seeing a psychologist, particularly one who specializes in pain and chronic illnesses can REALLY help. They are hard to find, but many big children's hospitals have them. Some do phone or skype sessions after the initial session. 

We drive 1.5 hours each way to see my daughter's psychologist and it is 100% worth it. We saw a regular psychologist before going to one who specialized in chronic illnesses, and my daughter really felt like it did not help. But she was much older than your son and very angry about having to see a psychologist.

For kids who stop being functional - miss a lot of school, stop wanting to see their friends, stop extracurriculars or doing things they love, stop sleeping - then an intensive pain rehab program is your best bet.


----------



## Pilgrim

Maybe we figured out some of the pain. He was sent for an abdominal xray which showed that he was still severely constipated- and this is after things seemed semi-normal again with output. 
GI said three caps of miralax per day for three days. 
Then maintenance of one cap per day for awhile plus bowel training. 
He's on day three and it's working.
We start the pred taper today, thank goodness.


----------



## my little penguin

Be careful of “bowel training”
When it comes to constipation associated with Crohns 
We were told that is never a good idea 
Basically very traumatic for the kiddo woth daily enemas 
It works for kids who are holding their bowels as toddlers 
But Crohns with constipation kids are not “holding their bowels”
Their gut just doesn’t move right 
We have done miralax daily for over 7 years
As long as we keep on top of things 
Keep things soft (Bristol 5/6) 
Then you can avoid things like rectal prolapse 
You don’t want rectal prolapse from trying to live what won’t moce 

Once you have it 
It’s there for life unless they have surgery 
It gets worse with an inflamed bowel 

Our second opinion place suggested the bowel training 
When they didn’t know about Ds Crohns yet 

Our regular GI promptly explained why that would be devastating to Ds 


We were also told surgery for rectal prolapse on a Crohns kid would result in a an ostomy due to the gut trying to heal the rectum over and over again 

Glad you found the source of the pain

Yes we tried all the usual constipation tricks 
Prunes pears juice fiber etc...
It only resulted in more pain and worsening the rectal prolapse 

We also do 50% diet as formula and 50% as food 
For ds this works 

Constipation is extremely painful and debilitating 
It does not get respect in the Crohns world by many GI 
It can damage structures inside 

Our thoughts are miralax is the least offensive drug Ds has to take 


I hope your Ds feels better soon 
It takes a while to calm the nerves down afterwards 
But daily miralax can help
Tremendously


----------



## Pilgrim

My Little Penguin what dose does your ds take every day? We were told a cap maintenance.
Thank you again. I will be wary when discussing the constipation with the GI team and with the "training".
It surprised me how constipated he became. At first it was EEN that caused the problem. He was backed up into his small bowel on MRE.
Then we switched to pred and returned to his regular high fibre diet. 
A month later and after seemingly good bristol 5's he is still severely constipated. 
It was hard to compute but what you say makes sense.
Crohn's constipation. But not stricture related, etc.


----------



## my little penguin

We use a kitchen gram scale 
He used to need 17 g(1 capful a day)
Currently it’s 10 g 
If Ds goes more than a day without a bm we increase 
If he gets pebbles we increase 
His MRE was clear last week no stricture fistulas etc...

The thing they don’t tell you 
Is constipation is linked to small bowel Crohns 
Not diarrhea 
But every single training GI (resident /fellow etc..)
Is shocked Ds has constipation as part of his Crohns 

We found high fiber makes Ds hurt worse 
So much so our gi has him on low fiber 

As part of Ds Crohns he has gastroparesis 
So that may be playing a role as well in Ds case 

Our gi has figured out we know Ds best 
And let’s us titrate miralax up and down so that he consistently has 1-2 soft bm a day 
GI said goal is to break up instantly when flushing 

On any given X-ray even with daily miralax Ds will have 
“Moderate stool”

Wishing your lo the best 
You will find a sweet spot with miralax
Adding activity helps reduce pain 

For my kiddo 
Pred /pure een always makes his constipation so much worse


----------



## Pilgrim

My Little Penguin pred also makes it worse?!

I am frankly shocked that GI's don't make that connection between small bowel Crohn's and constipation. 

Does TI Crohn's count as small bowel Crohn's?

Both kids had no signs of Crohn's in the small bowel on MRE, but both have it top right side colon and TI into where the scope reaches.

Your advice is gold. Thanks again.


----------



## Maya142

We also have constipation with Crohn's (also diarrhea now but in the beginning it was just constipation). My daughter's scopes are like yours Pilgrim - through the colon, but worst in the TI and cecum.

We also started Miralax when she was diagnosed and was not have 1 BM a day. That was also actually the time she had the most belly pain and now that I think of it, that was the time we were managing (or attempting to manage) her constipation.

It is really quite amazing about GIs who do not consider constipation part of Crohn's. Our GI says it CAN be part of Crohn's, whatever that means.

But anyway, we did was MLP did. In the beginning, when the x-ray showed she was very backed up, we did a clean out. Since she was older, we have used enemas a few times but no one mentioned bowel training - it was just to clean her out when the laxative did not work. But she absolutely HATED them.

So other thing we used when Miralax was not working was milk of magnesia (still use it). We give one dose before bed and by the morning she has a BM. 

She is on a daily dose of Miralax - she is on one capful (17 g). We used to use a kitchen scale but she is in college now and says that is too much work and unnecessary :lol:.

When she starts trending towards diarrhea, she reduces it.

If she has REALLY bad diarrhea, we stop it but honestly, whenever we stop it, she ends up constipated a few days later and miserable.

She also has Gastroparesis and poor motility everywhere.

We also go for soft "pudding-like" BMs. Sometimes they are formed, sometimes not completely formed. She also has fissures from Crohn's, so anything harder really hurts.

Make sure he drinks a LOT of water with Miralax.


----------



## Maya142

Wanted to add - for a LONG time (years) she could not tolerate fiber. It did not help, caused more belly pain.

Now that her Gastroparesis is better, she can have some fiber, but not a lot.


----------



## my little penguin

Yep TI /ceacum is where Ds has disease as well as some of the sigmoid colon /rectum .
He did have duodenum inflammation for years prior to developing gastroparesis 


What we have found is unless you have what the GI community believes is classic crohns(bloody diarrhea woth ilcers strictures etc...)
They will not include the other kids in their Crohns studies since it may “skew “ they resukts they know they want to have 

Hence the perpetuation of what Crohns should look and behave like 


Just a word of warning 

Ds was dx at 7 due to biopsy showing noncaseating granulomas/acute and chronic inflammation etc...
Next scope 8 months later showed the same 

Then he went on remicade due to severe EIM’s
All scopes after that were so clean visually and microscopically 
They literally changed his dx to possible Crohns 

Because the meds worked too well 
I kid you not 

It’s inky because he switched to Stelara and they actually caught the inflammation in biopsy again as it was healing in his TI that suddenly 
His dx was changed back to officially having Crohns 

When you have a kiddo who doesn’t fit the literature (because the literature refuses to include those kids in the studies )
It makes it difficult at best


----------



## Maya142

My daughter is not the "typical" Crohn's picture either - but luckily, she has been included in two studies. 

She used to have bad constipation but now does have diarrhea with flares. She very rarely has bleeding. She also has abdominal pain but generally it is not too bad. Sometimes has mouth sores. But she is not and was never really a "typical" Crohn's kid (now young adult).

When she was scoped, we were sure we were ruling out Crohn's for good.

She also had inflammation and ulcers in her rectum at diagnosis which they said was seen more in UC and less in Crohn's.

We have (thankfully) not had the experience MLP has. 

M's scopes did becomes almost completely clean on Remicade (mild microscopic inflammation of her TI, but ALL the ulcers and visible inflammation in her colon was gone) but they just said she was in remission. No one ever mentioned taking away her diagnosis.

When she flared again, a couple years later, she had ulcers and mild inflammation (in her TI and cecum).

But we go to one of the biggest pediatric IBD centers in the US (in the top 2), so they have seen a LOT of different manifestations of Crohn's, so maybe that is why. Or maybe we were just lucky.

I will say that we have had some times when they discount her symptoms because it is constipation and not diarrhea. Especially since her FC is generally low. But over the years, her GI has learned to look at her trend and not the numbers. 

But we have heard IBS many times and officially, she is also diagnosed with IBS. I do believe she has it, I just think sometimes they are a little too quick to say her symptoms are IBS vs. IBD, though recently that has not happened, so perhaps they are learning that Crohn's kids do not fit in neat little boxes.

I am just glad she is included in studies (though one is an 18+ study done by CCFA) because she isn't exactly the normal picture of Crohn's.


----------



## my little penguin

In Ds case it was because he completed healed no visible or microscopic inflammation nothing nada 
But still had multiple severe extra intestinal inflammation 
The EIM required multiple biolgics at once 

The docs felt he had some significant going on autoimmune related but stayed woth even just one EIM they would expect severe Crohn’s disease 
And Ds had mild disease if that 

So they spent years looking for something else (not ibs)
Some other autoimmune disorder to explain Ds better


----------



## crohnsinct

I am so glad you found a possible reason for his pain and have a plan.  

I have two kids with constipation issues.  One with a solid Crohn's dx and the other not.  

All of the GI's T has seen absolutely accept that constipation is a sign of small bowel Crohn's.  Ironically, they take T's constipation more serious than O's diarrhea! 

The thing is that while all our kids have Crohn's they could also have an overlay of IBS, regular old constipation, motility disorders etc.  I recently read a paper that said that up to 86% of IBD patients also suffer from another gastro disorder!  

It makes it extremely hard for us all to flesh out what is causing their issues.  Thus the constant blood and fecal monitoring.  If those are normal then we assume it is the overlay disorder.  If treating overlay disorder doesn't fix things we move to scopes.  

T has "mild" disease that presented only with abdominal pain, constipation and slowed growth/weight gain.  Treated for a year and no progress.  For some reason her mild disease required biologics.  

We have moved and there has been A LOT of adjusting for her.  A few months ago she started with abdominal pain etc.  I mentioned it to GI but we all decided it was stress.  Worked on that angle.  Couple of months later FCP came back at 250.  So now we know it was her Crohn's. Am I mad that she has been uncomfortable for months?  No.  Medicine is an art just as much as it is a science.  We had to make sure before increasing her dose and the medicine load on her body.    

It is just all a lot of trial and error. You will get there!  In the meanwhile absolutely treat the constipation and when that resolves you can figure a way forward.  

Hooray on the prednisone taper! :dance:


----------



## kimmidwife

It is so odd. It seems like a lot of us have one with diarrhea and one with constipation!
My older one is also your typical diarrhea Crohn’s and my younger one severe constipation all the time.
I am so curious if this is a genetics thing.


----------



## Pilgrim

So we treated the constipation two weeks ago with three caps peg per day for three days. Worked well.
Maintenance is one cap per day, worked well until this week. Volume and frequency is decreasing. Pain is increasing.
Luckily, we have a phone consultation with the GI today.
The good news is that I had been having trouble getting fcal through GI and have ironically been able to order it through GP - we now have a standing requisition for fcal every three months for C. I plan to get one for H too, if I can. It is a huge relief. I am looking forward to finding out how much of his pain is functional vs. inflammation.


----------



## crohnsinct

Great news!  I have read two recent papers that suggest every 1-3 month monitoring of fecal cal, even in remission, to monitor and react to disease activity.  

I really hope the constipation and pain is functional and that the IBD treatment is working...but it is still early.


----------



## Pilgrim

crohnsinct said:


> Great news!  I have read two recent papers that suggest every 1-3 month monitoring of fecal cal, even in remission, to monitor and react to disease activity.
> 
> I really hope the constipation and pain is functional and that the IBD treatment is working...but it is still early.


Did you post those? I think I remember seeing one.


----------



## my little penguin

Has he tapered pred ?when
Maintenance drug due?
Not enough water ?
We use water bottles with time marks on when to finish by on it 
Feeling better so ate more veggies ?


----------



## Pilgrim

my little penguin said:


> Has he tapered pred ?when
> Maintenance drug due?
> Not enough water ?
> We use water bottles with time marks on when to finish by on it
> Feeling better so ate more veggies ?


We're tapering now. He's at 30 mg this week. Still a pretty high dose.
It could be the 25mg injection of mtx. I am going to raise his folic acid to 2mg per day.
He has 5 cups diluted juice in the morning that I measure out. After that I quit counting but he has a juice box at school plus water, fluids at home after school and with supper. We definitely hit the 7-8 cup mark each day (that was recommended).
We always eat a lot of veggies, plus with the pred he's eating more than he needs so I guess that is possible....


----------



## Pilgrim

Just got off of the phone with GI. He said he'd be surprised if the fcal was very high because scopes showed very mild/early disease primarily in TI with only 2 lesions in the colon. He said clearly Crohn's on biopsy but very early. I am going ahead with fcal anyway - doesn't hurt and our family has been surprised before.
He figures the pain is constipation related and we should repeat PEG cleanout. If that doesn't work he'll prescribe pico-salax (mag citrate) cleanout.
That's the plan....


----------



## my little penguin

Also look at the veggies 
As a family we love veggies 
Ds over the years has slowly developed issues with them due to Crohns 
Raw veggies are out 
Steamed veggies are out 
Well cooked veggies -squashes tomatoes carrots are ok 
Cabbage Brussels sprout broccoli etc(gas hard to digest veggies ) are a big no 
These cause cramps


----------



## Maya142

My kiddo is the same. Ate lots of veggies until the year before she was diagnosed with Crohn's (I assume that is when she started developing it). Then she just stopped. Said her belly hurt. Would only eat certain vegetables. I though she was just being picky...

We also only do very well cooked veggies. Or soup - soup is a favorite. My daughter doesn't drink smoothies, but those also are a good option for some kids.

Six years after she stopped eating veggies, she is beginning to try different things and is figuring out what works and what doesn't. For her it's been a slow process complicated by Gastroparesis. But she is so happy she can eat them again.

Remember after a child has been inflamed a long time, it will take the nerves a while to calm down. So even if the inflammation is gone, it might take longer for the pain to go away.

If it doesn't go away, then you are looking at some kind of pain syndrome, and you have to treat it accordingly.

This is, of course, assuming it isn't just constipation. Hopefully it is and the clean out will work wonders!


----------



## Pilgrim

There is definitely a theme here with the veggies.
I am wary of restricting raw veggies and fruits because I am scared of the constipation.


----------



## crohnsinct

I think this may not be the case because I think you guys ate pretty healthy to begin with but I will just put it out there...many people discover a constipation issue and then increase fiber greatly BUT too quick of an increase will actually work against the body and cause constipation rather than relieve it.  

I know you said he is drinking but wanted to put it out there that when increasing fiber you have to increase the water.  This does not count juice as sugary juice drinks can work against your constipation relieving attempts, although I also don't think this is the problem.  Anyway, as a guide he should be getting half's body weight in ounces.  Sounds like maybe he is getting that eh? 

Exercise will help move he bowels.  A quick run around the neighborhood...oops wait I forgot where you live there is probably snow...snow shoeing anyone?  Swimming is also great for constipation. 

As for the vegetables, I order for them to work for constipation they do not have to be raw.  The good fiber that helps does not go away when cooked and cooked veggies are sometimes easier for Crohn's sufferers in a flare.  Since he is so newly diagnosed I would try cooked. 

Other foods good for constipation, beans, oatmeal, ground fax seeds sprinkled in things.  Ohhhh there was a great recipe for some constipation relieving muffins on here years ago...I will see if I could find it.  Pumpkin and squash are both great so if you have any recipes using those go for it. 

If the diet, exercise, water etc have been good then I would think about investigating functional issues for the constipation.  I don't know a lot about gastroparesis but could that cause it?  Are there other things that could cause it?  

I totally agree with you n the fcp.  When H is feeling fine, hers can go over 1000.  I would definitely get that fcp.  It will be good to have as a baseline so you can monitor treatment.  

Good luck.  Poor kid.  Constipation pain stinks and makes you feel miserable.


----------



## Maya142

People with Gastroparesis do often have constipation because often they just have poor motility everywhere. Remind me, is the pain after meals? He hasn't had a gastric emptying test, right?

Constipation can really be awful. My daughter had bad constipation when she was first diagnosed. But after 3-4 Remicade infusions, the constipation was much better and the pain was MUCH, MUCH better.

So hang in there. It may just take time.

In terms of fiber, some kids do great and really need it and for others, it is hard to digest. My daughter was unable to eat even cooked veggies for a while, but that was her Gastroparesis not her Crohn's, I think.

Now she is able to eat small amounts of salad (if she eats too much = pain), oatmeal and certain veggies cooked.

I think it will be trial and error to figure out what works for him. And if his inflammation goes down and pain does not go away, you could ask for a gastric emptying test to rule out Gastroparesis.

As for the water thing - yes, make sure he's drinking lots! My daughter carried around a water bottle all day (even at home) to remind her to drink. Based on how big the bottle is, you can tell him how much he has to drink. It's a good visual reminder.


----------



## kimmidwife

I would also wean him off the juice and get him to drink more water. It is really hard and we are working on that with my younger daughter. She now gets one small cup of juice a day and the rest water. 
She hates it and it is a fight but we are working hard on it.
We have also been surprised many times by the fecal calprotectin.


----------



## Pilgrim

We had the fcp come back for C at 116.Lab value is anything above 50 is abnormal.  I haven't spoke to GI but would guess that was the kind of number he would expect for only two small lesions on the colon and some TI activity.
We are down to 10mg pred. When do the mood swings stop? Pred is the true test of unconditional love. 
We did another clean out on the weekend and are maintaining with a cap of peg still, yet he was constipated two days later AGAIN. So I am rereading all of your advice here.
I think I will try the premeasured marked water bottles. We dropped all juice except for about 1 cup a few weeks back.
It is very frustrating.


----------



## Pilgrim

He hasn't had a gastric emptying test but he doesn't have a problem eating. His portions can be larger. But I don't know if that rules out gastroparesis.


----------



## Pilgrim

We use flax as an egg replacer, so that is in all my baking, pumpkin muffins, ground oats as part of the flour in any recipe for muffins, in pancakes. 
We're not Hippies, but we eat like one, lol.
I am serving applesauce, to cut down on all the raw apples he ate. Cooked veggies instead of salads. Smoothies frequently. Swapping out the raw, whole veggies.
I'm not sure about his pain levels, because he can't explain to me what level he's at. It must be a little better, because he is going to school. 
Anyway, we are taking advice and running with it. Thank you.


----------



## my little penguin

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/


----------



## Pilgrim

my little penguin said:


> 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

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.


----------



## Pilgrim

Maya142 said:


> 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.


----------



## Pilgrim

When he brings up pain again I will reteach the pain chart. Very good examples- thank you!


----------



## Pilgrim

So, does anyone have an anecdote about how much of a decrease in fcp a kid would have with a course of Prednisone?


----------



## Maya142

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

Pilgrim said:


> 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

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!


----------



## crohnsinct

Found it! 

http://www.crohnsforum.com/showthread.php?t=55773


----------



## Maya142

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

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

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


----------



## Pilgrim

my little penguin said:


> 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

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

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


----------



## Pilgrim

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

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


----------



## Pilgrim

my little penguin said:


> 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.


----------



## DanceMom

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.


----------



## Pilgrim

DanceMom said:


> 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

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

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

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

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?


----------



## Pilgrim

crohnsinct said:


> 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

Maya142 said:


> 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.


----------



## DanceMom

my little penguin said:


> 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 ....


It was just a suggestion. IVIG does not burn.


----------



## Maya142

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.


----------



## Pilgrim

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

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

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

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!!!


----------



## Pilgrim

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.


----------



## pdx

So glad to hear that both your kids are doing well! Thanks for the update.


----------



## crohnsinct

AWESOME NEWS! :dance:


----------



## Pilgrim

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

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.


----------



## Pilgrim

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

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


----------



## Pilgrim

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.


----------



## Pilgrim

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

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

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:.


----------



## pdx

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

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

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


----------



## pdx

Any news after the appt today?


----------



## Maya142

Have been thinking of you!!


----------



## Pilgrim

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

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.


----------



## Pilgrim

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

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.


----------



## pdx

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.


----------



## Pilgrim

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

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?


----------



## Pilgrim

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

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

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!


----------



## Pilgrim

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

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

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.


----------



## Pilgrim

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

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


----------



## Pilgrim

my little penguin said:


> 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

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

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.


----------



## Pilgrim

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.


----------



## Pilgrim

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

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

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

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.


----------



## pdx

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!


----------



## Pilgrim

pdx said:


> 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?


----------



## Pilgrim

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

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

> 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.


----------



## Farmwife

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


----------



## Pilgrim

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

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.


----------



## pdx

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.


----------



## Pilgrim

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

Yes, the stool is definitely odd - I wonder if it's a motility issue?? Those can cause pain too...


----------



## Pilgrim

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

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

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

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.


----------



## Pilgrim

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.


----------



## Pilgrim

Did M always deal with constipation with Crohn's? During active disease and in remission? I don't read much about it.


----------



## Maya142

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

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

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

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

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

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.


----------



## Pilgrim

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.


----------



## Pilgrim

Also I know about zero when it comes to IBS-C so I should probably research that as an overlay.


----------



## crohnsinct

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

> 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.


----------



## Pilgrim

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.


----------



## my little penguin

How is his fecal cal ?
Still on daily miralax ?
A lot of kids who have constipation as part of crohns need daily miralax 
Ssri are not recommended for kids (under age 25 ) unless there is mental illness since they increase suicidal thoughts (all have black box warning so to speak ) 

what other activities are in this time frame ?
Busy with activities sometimes means more car time less home time and faster meals 
So less time to “go” right or eat right 

more stress from school (first month is review )

lots of factors
And sometimes we have found with Ds 
It’s just crohns -others  more miralax daily 
Whole Foods 
And exercise/rest/water ratio


----------



## crohnsinct

It is a great book but as you know; as much as they kept thinking that O had some sort of IBS overlay she didn't and we kept coming back to IBD.  Even this last two weeks on the Xifaxan to treat bacterial overgrowth (which isn't necessarily IBS per se but is thought to be the contributing factor of a lot of IBS issues) hasn't helped her.  I might rather pull a fecal cal test to see where he is and once IBD inflammation is ruled out then go down the IBS route.  Although, changing diet to treat IBS can't hurt him other than delaying discovery of IBD inflammation.  

Years ago there was a lot written on the parents forum about how kids seemed to flare up a bit with the start of school and the fall.  The thought being stress is a contributing factor.  Emotional stress but also stress on the body.  As O's GI explained when we were sending her back to school, stress on the body (lack of sleep, running to class, swim practice etc) means that the body switches from healing to maintaining and just keeping up and that jeopardizes a flare. So could be stress that is causing IBS or stress that is causing IBD inflammation...clear as mud. 

One good trend I am seeing these days is a huge amount of research on IBS and the fact that the gastro circles are taking it very seriously.  There are even gastro psychologists who are studying and treating the brain/gut issues (IBS).  I will see if I can pull some of the research and posts of late.


----------



## Tesscorm

I recall discussing Fall flares and something else that came up were allergies??  When S was flaring for the first time and we were still trying to figure out what was going on, he was given Cipro to treat possible stomach bug.  He had two doses and had an allergic reaction (hives).  He and was given an anti-histamine and told to take it for a couple of days.  His crohns symptoms (fever, nausea, etc.) went away for 3+ weeks.  That was the longest stretch of being symptom free that he'd had for months. 

I suppose it may have been the two doses of cipro??  

But, in the past, I do recall reading about some connection to either allergies and/or anti-histamines.  Does C have allergies?  While it wasn't allergies that triggered S's initial crohns symptoms, it did seem that the treatment for his allergic reaction (anti-histamines) alleviated his Crohn symptoms at the same time??


----------



## Pilgrim

Another thought Tesscorm, is that his immune reaction switched gears to attack the med, and so it calmed the Crohn's for a time. 

Sort of a "bait and switch".


----------



## Pilgrim

C doesn't have allergies that we know of. 

I have avoided calling the GI as I like to give it a few days to rule out a gastro bug, but I guess today is the day. 

I feel better armed with experience and advice this time thanks to the committee.  I am going to ask about different types of meds, possibly looking for something that stimulates gut motility better than Miralax. The osmotics don't work too well for him in our experience,  at least when he gets like this. He will respond a bit to Senna, but it does cause pain, and I'm not sure if he should take that regularly. 

I will ask about IBS-C.

I will ask about fcal . 

But major focus motility....I think.


----------



## my little penguin

So he isn’t on daily miralax.?
Ibs c is only when you ruled out crohns 
He has crohns with constipation which means 
He will have constipation blips similar to other kids diarrhea blips with crohns
It’s not a flare per say but is watched as it can lead to a flare 
It’s not ibs-C


----------



## my little penguin

I did want to add 

sometimes the muscles do not work properly to produce a bm (if he has this issue consistently ) then they can do more invasive testing to determine treatment

in Ds case his constipation gets worse
Spasms the gut causing pain /constipation even with miralax 
Tends to be mild rectal inflammation/prolapse of sorts 
Fecal cal tends to be normal since just the rectum is affected 
Uceris foam has fixed the issue in the past but it takes a few months


----------



## Maya142

My kiddo has horrible motility pretty much everywhere and add that to pain medications and there is no way she'd go without a laxative.  Miralax works most of the time, but sometimes when things are really bad, we go to Milk of Magnesia. It is NOT a stimulant, it's also osmotic. But in our experience, it works much more quickly and better than Miralax. M has no cramping with it, like she has with Senna or Dulcolax. Her pediatric GI recommended it.

Generally they do not recommend long-term stimulant laxatives, because you essentially become dependent on them. Which is why Miralax and Milk of Magnesia are typically recommended first. 

I would definitely ask if it could be his Crohn's since small bowel Crohn's can cause constipation. Fecal Cal should tell you about that.

If inflammation is ruled out, then you look at motility issues or IBS-C.

If he is dealing with moderate to severe chronic pain, another important specialist to see is a pain psychologist. They are now usually psychologists who work with kiddos with chronic illnesses/chronic pain. Our children's hospitals has 4-5 psychologists that work specifically with GI patients. 

In terms of SSRIs, it is true there is an elevated suicide risk if the patient is under like 25. But it's very rare. And untreated depression, anxiety or chronic pain can cause serious issues, so you have to weigh the risks and benefits. There are also specific meds for IBS-C that help you have more regular BMs, but I have no idea if they are used on kids. We haven't ever tried them but that's because generally either Milk of Magnesia or Miralax works for my girl.

My daughter recently developed post-infectious IBS, due to months of C.Diff. We tried the drug crohnsinct mentioned - Xifaxan. M lasted 4 days on  it the first time - it caused such bad nausea. She re-tried it several weeks later because she was still having diarrhea and cramping and belly pain,  and that time lasted a week. It didn't seem to help her unfortunately.


----------



## Pilgrim

After labs and rectal check at hospital we did an enema,  followed by weekly pico-salax starting tomorrow, and daily miralax.  

I'll find the Canadian version of milk of magnesia and keep it around for good measure. 

The ER doc talked to our GI. Those were the recommendations.


----------



## my little penguin

Glad you have a plan 
Hope he gets some relief soon


----------



## Maya142

Oh poor kiddo - enemas can't be easy at that age. I hope the change in laxatives does the trick. One thing to keep in mind with Milk of Magnesia is  that if you take too much, it can cause diarrhea. So start with a small amount.


----------

