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Crohn's Disease Forum » Parents of Kids with IBD » Ibs diagnosis common?


12-09-2012, 05:17 PM   #1
Irene3
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Ibs diagnosis common?

So I've taken my 9yo to the pediatritian, and now we wait 3 months for results. His doing calprotectan, and all the blood tests many of you suggested. He said that by her symptoms though. (Mainly daily pain), he would think its an ibs issue. But then after having that bit of reasurance, there are mornings like today, where she's in so much pain she's crying, and I can't stop thinking what if its crohns. What if she cryes like this year after year, no tests show crohns until she has strictures and needs surgery? Then I cry like an idiot.
I know many of you have written you have gotten ibs diagnosis. What do you do then? I thought I'd research diet?!? Do kids with only ibs have pain like that? I swear seeing her cry hurts me more then crohns does. So what do I do for her. What do you do for ibs? I'll research, but my first thought was ask all of you, who go through this daily.
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12-09-2012, 05:59 PM   #2
Sascot
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I really sympathise with you! I spent a year and a half fighting to get Andrew diagnosed and then only because the calprotectin came back high. If not I wonder if I would still be fighting!
At the moment I am up late again, as my daughter is whimpering in pain and unable to sleep. So far 7 months and counting fighting for her - only managed one blood test, one MRI and the calprotectin was normal. I had a good cry the other night - tonight just depressed. Hope you get answers soon
12-09-2012, 06:06 PM   #3
my little penguin
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At one point DS had a crohn's dx along with residual Ibs dx.
There are drugs to eliminate the pain- periactin, amyntripyline, there us he fodmaps diet.
DS had a tens unit .
Hot pack in the microwave.
Fwiw all of his blood work was normal we got lucky since he had rectal prolapse and chronic vomiting = scope . Without which they would not have scoped since his main symptom was C not D.
Did they refer you to a ped Gi ?
Peds are great but not for Ibd or even Ibs kwim.
Hugs it is never easy.

Btw all of DS symptoms went away once he was in the right Ibd meds.
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12-09-2012, 06:27 PM   #4
izzi'smom
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While Izzi has a Crohns diagnosis, I think she has some parallel stress related IBD symptoms. I suffered with IBD for two particularly stressful years, and yes, some days I was in so much pain I did nothing but lay around. (((HUGS))) mama. Hoping you get some answers soon...
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12-09-2012, 07:02 PM   #5
Irene3
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My little penguin, yes it was a Ped gi. Waited months to go see him after no answers from reg gp. I was told ibs with my crohns right up until I needed 70cm bowel recsection, so I wasn't going to just ignore her pain. He said (the Ped gi) that lots of kids have tummy pain and it dosnt necessarily mean ibd, but most likely ibs. And that he wouldn't even normally do a calprotectan and all the bloods just for pain, and mainly C. She does at times have D. But it's mainly the pain. But I've read about so many kids on here with the same symptoms. That alone wouldn't worry me, but when she starts crying and not just saying my tummy is sore, I worry more. We'll see what the gi says, but I worry if he says ibs, I'll do diets and whatever is recommended, while she could have crohns or colitis, which would then get worse as a result. Does MRI show more then just strictures. My barium follow through years ago showed stricturing, as well as my recent MRI. But I'm thinking if her labs are normal, with ongoing pain, and diet dosnt help, should I then ask for an MRI. I'd rather that then scope straight away.....?
12-09-2012, 08:01 PM   #6
kimmidwife
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Irene3,
A scope is more accurate then an MRI for diagnosis. With a scope they can take small biopsies and see if there is inflammation that is not visible to the naked eye. An MRI on the other hand is not able to do that. An MRI is good for monitoring for worsening of disease that is visible but for diagnosis I would go for the scopes.
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12-09-2012, 08:23 PM   #7
my little penguin
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Second scope over MRI.
DS had scope which lead to dx.
His mre was normal since he only had mild inflammation at the point it was done after pred no strictures or fistulas .
12-10-2012, 01:00 AM   #8
Catherine
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Irene

My daughter was dx with ibs, 6 months prior to her crohn's dx. But there were signs prior to dx in her blood tests. Her main symptom was pain, she has no D or blood.

See what the bloods show first. There were signs in Sarah blood tests, she had low iron levels which did not response to iron supplements.

Irene are you in Melbourne? Our adult gi says that she hates when she get patients that have been dx with ibs without any testing.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

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)
12-10-2012, 05:40 AM   #9
DustyKat
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Hey Irene3...

My Sarah went undiagnosed for 18 months but IBS was not given as a potential diagnosis. Crohn's wasn't even on the radar and I didn't know to even look for it. For her the symptoms were:

Headaches (migraine like)
Eye pain
Vomiting at times
Tendency to constipation
Stomach pain. By that I literally mean pain in her epigastric region.

The only thing they could come up with was abdominal migraine.

Normal blood tests, one week out from surgery a normal CT Scan with contrast.

What would I do given your circumstance?

If not already doing so I would start a symptom diary.

Continue to agitate for answers. Given your history this is far from unreasonable and I would not be backward in coming forward in telling them that. I would go so far as to tell them that you also had a diagnosis of IBS and look where it got you and you will not rest until they prove to you it isn't Crohn's.

Good luck Mum.

Dusty. xxx
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12-10-2012, 07:22 AM   #10
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Forgive me Irene does she have any EIM's yet?
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12-10-2012, 02:06 PM   #11
Lustforlife
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Dusty- I am currently Undiagnosed. Symptoms for two weeks now, waiting on blood and stool results. One thing I found interesting - "don't rest until they prove it isn't crohns". Can you help me understand better what would prove it? Because I'm worried about all tests being negative an going on suffering for years.
12-10-2012, 03:29 PM   #12
DustyKat
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@Lustforlife,

Sometimes in the early stages of the disease it is very difficult to obtain a diagnosis.

In our case, when Sarah was admitted to hospital the second time I was determined that she wasn't leaving until at least scopes were done. As it was she went for surgery but if scopes had been done earlier on they would have picked up the problem quite some time beforehand.

I guess what I am getting at by saying..."don't rest until they prove it isn't crohns"...is that more often than not a diagnosis, not just for IBD, is a process of elimination. A doctor starts with a list of possibilities and works their way through it ruling out the ones that testing proves it can't be and so adding and deleting as they go. If you have a reason to believe that IBD may be on your radar then that should be added to the list, not dismissed out of hand because the doctor either thinks it isn't possible or because your symptoms don't fit the norm.

The weekend that Sarah was admitted the second time I had a phone call from my husbands first cousin, she has Crohn's. She told me her story and I then spent quite a bit of time googling it. Sarah fitted. When she was seen by the paediatrician I told him about it and he ruled out on the spot and it was then I said...I am not leaving this hospital until you prove to me it's not Crohn's. The rest, as they say, is history!

Dusty. xxx
12-10-2012, 04:36 PM   #13
Patricia56
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You've gotten great advice.

You have very legitimate concerns. The uncertainty is a killer especially when your child is crying like that. If you can try to stay calm and not cry too during those times it may be helpful to you both. Reassures her that things are manageable and she can get through this.

I don't know if it's helpful to you but statistically speaking the chances that she doesn't have CD are much higher than the chances that she does. According to the US Office of Rare Disease Research she has a 10% chance of developing Crohn's if she has one parent with Crohn's.

So I think the part of your original post about wanting information on IBS and other possible functional causes of her abdominal pain is very sensible.

The very best resource that I know about that's here in the US is the University of North Carolina at Chapel Hill - the UNC Center for Functional GI & Motility Disorders. Here's a link to their extensive and very helpful patient education resources.

http://www.med.unc.edu/ibs/patient-e...al-gi-handouts

I hope you find the information useful and that things become clearer soon.
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12-10-2012, 04:39 PM   #14
Irene3
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Thanks everyone! Dusty, because of my own crohns, a and her on going pain, I feel like I CAN'T rest until I know for sure. So thank you for the encouragement.

Catherine- we are in Geelong, but I took her to the royal children's hospital in Melbourne, to see Tony Cato Smith. He was recommended by my own gis' secretary. He was wonderful with jas, but as soon as I hear ibs, I'm instantly worried that its a wishy washy word, and not a proper diagnosis. I will wait for bloods, but my bloods showed nothing at all.
Jas is constantly pale, so I think iron will be low. I guess I was asking this to see how many mums on here, got ibs diagnosis before proper dx of whatever that can be treated by meds. I know it could be a number if things, from infection needing antibiotics, I've read about bacteria in the gut on here, not just diseases such as crohns and colitis.... But, given genetics and how much more chance she has of actually having crohns and or colitis, added to the constant 'mummy my tummy hurts',I feel like I'm already two steps ahead of my self- in the 'if no diagnosis- then MRI?ct? Scope?' Questioning department. :/
12-10-2012, 04:39 PM   #15
Catherine
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We allow a gp to dx Sarah with ibs 4-6 months prior to dx crohn without scopies. He said further testing wasn't warranted. I now know that ibs should not dx when anemia is present.
12-10-2012, 04:47 PM   #16
Catherine
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Irene was your gp copied in on the blood tests. Is so you maybe able to get results quicker from the gp?
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