10-27-2017, 11:12 AM   #31
Farmwife
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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.
10-27-2017, 11:26 AM   #32
crohnsinct
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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.
10-27-2017, 11:30 AM   #33
crohnsinct
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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.
10-27-2017, 11:38 AM   #34
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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.
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10-27-2017, 12:55 PM   #35
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Here's a dumb question. Can you have IBS without bowel symptoms? His output is totally normal.
10-27-2017, 01:02 PM   #36
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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.
10-27-2017, 01:02 PM   #37
my little penguin
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Ibd or ibs ?
Ibd you can have no bowel symptoms at all

Ibs is symptoms with signs of damage ..
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10-27-2017, 01:04 PM   #38
Pilgrim
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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.. ..
10-27-2017, 01:08 PM   #39
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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!
10-27-2017, 01:09 PM   #40
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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....
10-27-2017, 01:26 PM   #41
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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?
10-27-2017, 03:14 PM   #42
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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.
10-27-2017, 03:47 PM   #43
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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.
10-27-2017, 04:13 PM   #44
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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.
10-27-2017, 05:24 PM   #45
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Acid can damage teeth terribly. Poor guy, he is really suffering. Since Gaviscon didnít help him Iím questioning GERD. Although if I werenít taking my PPI I donít know how much it would help me, either. Iím also wondering about nutritional deficiencies weakening his tooth enamel. He really does need to be scoped, doesnít 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 Hís headaches and her brotherís pain youíve got your hands full. I really hope the omeprazole works.
10-27-2017, 06:06 PM   #46
my little penguin
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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
10-27-2017, 10:04 PM   #47
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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.
10-27-2017, 10:12 PM   #48
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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.
10-28-2017, 12:11 AM   #49
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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.
10-29-2017, 10:07 PM   #50
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Sorry you are dealing with all this. Itmis not fun having a second one with issues. Let us know what the GI says.
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10-30-2017, 06:25 AM   #51
Pilgrim
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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.
10-30-2017, 05:57 PM   #52
crohnsinct
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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.
10-31-2017, 03:09 AM   #53
Pilgrim
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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
11-02-2017, 07:21 AM   #54
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Do you have any previous blood test results for hemoglobin? If so has been any drop hemoglobin over time?
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Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
11-21-2017, 07:42 PM   #55
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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.
11-21-2017, 08:16 PM   #56
my little penguin
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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
11-21-2017, 09:03 PM   #57
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Wow!! That is quite a wait!! Your poor little guy. Is there any chance there's a cancellation list to get him in sooner?
11-21-2017, 09:37 PM   #58
Pilgrim
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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.
11-21-2017, 11:24 PM   #59
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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
11-22-2017, 12:22 AM   #60
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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.
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