Does she have Crohn's?

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Kgrant82

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Any answers would be greatly appreciated. My daughter is eleven. Three weeks ago she was became sick at home on a Sunday morning. She had a 102.3 fever and my husband took her to the dr office where she threw up twice. The dr. Said it was probably a virus and sent her home. When I got home that evening around 8:45pm she was feeling pretty rough still. All day after the dr visit she had had a rusty maroon colored diarrhea and no more vomiting. Her fever was still up so I gave her some Tylenol and around ten she went on to bed. At about 2:30am she went through my room to go to my bathroom and get in the shower. All of the sudden I heard a loud thud and hollered her name. When she didn't answer I got up and went to check on her. I accidentally hit her with the bathroom door and it roused her and she was able to move away from it. She had passed out in the bathroom!!! I checked her temp and her blood pressure and called her dr. (I am a nursing student and will have my RN in May). I took her to the ER and they admitted her for dehydration. They got a sample of her stool and it was more blood than stool. She stayed for four days and the doctors never even called a GI doctor. I finally requested one before we left the hospital and he ordered a lot of tests. I told him that my husbands first cousin has Crohn's disease and he said that it was possible that this was crohns. They tested her for rota virus E. coli shigella and all the other big ticket bacterias and they all came back negative. her c reactive protein was 5.5 and her esr was 16 and her calprotectin was 538.8. She is scheduled to go back to the GI dr on the 1st of April. Is he going to tell us she has crohns? Could it have been a virus that they didn't detect? Could it be something else?? I wonder if a stomach virus can cause your calprotectin level to be that high??
 
No the GI doctor said if he did one right then while she was having those GI issues it would just look just like crohns so he wanted to allow the gut to heal some first so he put her on flagyl and Prilosec and culturelle for a month and said that he wanted to see her April 1st and we would talk about it then. He didn't have the calprotectin test back then... It came back last week on the patient portal with her hospital record.
 
I'm so worried about her. I have IBS and she has always had a "weak" stomach. She can be in the middle of a meal and just see someone smacking their food or talking about something gross and she loses her appetite. She is super skinny too just 11th percentile for weight.
 
Hi Kgrant82 and welcome to the forum. I copied your thread to here so you could get more replies. :)

I would definitely request a colonoscopy as it is the best test out there for a diagnosis. If they continue to refuse then you may want a second opinion. It's hard to say what she has exactly without those biopsies. Hope the GI changes their mind. Her symptoms sound very similar to mine when I was diagnosed but Crohn's mimics so many illnesses.

Good luck and keep us posted.
 
I sure hope not! I imagine the GI will request scopes after that next visit with a FC test that high. Does she still have bloody stools? Is the Flagyl helping?
 
Second getting a second opinion
Crohns would show chronic inflammation as well as acute in the biopsy samples
If it was just a bad infection etc... Then there wouldn't be any chronic changes in the cells
I would try to push for the scope
 
Yes I am definetely going to request a scope. The flagyl has helped and she hasn't had anymore bloody diarrhea since about the second day home from the hospital but she has had stomach pain. I think the waiting and not knowing is the worst part.
 
So sorry to hear about all of this. My daughter is a fainter also. A lot of times in the bathroom because she got up too quickly.

A fecal calprotectin that high would almost always move to scopes. A high fc could be from a few different sources so scopes are absolutely necessary to rule in or out IBD.

I am glad she is feeling better but hoping the GI has some sense of urgency so if it is IBD you are dealing with you can get her started on appropriate treatment as soon as possible.

Keep us posted!
 
Thank you crohnsinct for letting me know my daughter isn't the only one who has fainted. I'm going to push for the scope ASAP! I hate for her to have to have one at 11 but I know it is essential to getting to the bottum of this. Being a nursing student during this has been a blessing and a curse because in one hand I understand the tests and what they're looking for but on the other I understand the gravity of some of her symptoms. 😳 I will def let everyone know what we find out. Keep us in your prayers please! I'm praying it was just an isolated incident and it was just a virus or bacteria they didn't test for but if it is crohns I'm preparing myself and my family for that as well. She is so tiny I just hate for her to have to go through any of this!!
 
I hear you! O was dx'd when she just turned 12, T at 11. When we were going through evaluation with T, we kept saying, well at least it is something we are familiar with and we don't have the steep learning curve again...BUT...it is something we are familiar with and sometimes a little knowledge is a dangerous thing.

Hard to do but try to take it a day at a time and not scenario out every bit of information...and if you figure out a way to do that, you can write a book and make a fortune!
 
Haha thank you so much. It means so much to just know there are others who have experienced some of the same things. And I'm trying to not think to much about it. It's not easy to do though. Not to mention I am in the pediatric portion of my nursing school to make matters even worse. Lol. But I keep telling myself that just because I have knowledge about these things doesn't mean I am a physician and even when I think I have the whole picture and can diagnose I can't because I don't have the years of experience and the whole picture that the doctor does. Because I dont! Thank you so much though for encouraging me to not worry. I need to hear that even if i intellectually know it I need to hear it anyway. Thank you!
 
To help her feel better make her some SCD soup. This will help with the inflammation. Google SCDdiet.
 
Sorry to hear that. My son was scheduled for scopes within a week of a high Calprotectin result. It is the only test that ever showed anything for him - bloods were always normal. I'm not sure if every high calprotectin means Crohns, we were only told that a normal calprotectin means it can't be IBD. Hope you can get scopes organised soon - it's better knowing what you are dealing with
 
Kgrant,
I would get another opinion. What the doctor said to you doesn't really make sense that it would look like Crohn's because of what is going on currently. Visually that could be true but biopsies would be able to tell the difference. Sorry your daughter is going through this right now. Glad to hear she is feeling a little bit better now.
 
I think he also didn't want to put her through anything more at the time. I will def get a second opinion regardless of what he says on April first. I think that is just a prudent practice especially when dealing with something like this. Thank you for suggesting that tho. You just reinforced what my gut has already told me!!😳
 
I'll just toss in my usual advice about Celiac Disease, though with bloody stools, IBD seems more likely, but as long as they're doing labs and scopes, ask to check for Celiac. A high fecal calprotectin can sometimes an indicator of it.

Good luck!
 
Mehita they did check her labs for celiac and they said she didn't have celiac. Thank you for the input though.
 
Kgrant82, a better indicator for celiac is during endoscopy, as blood tests can get it wrong. So they should biopsy for that as well.
 
We went to the dr last Wednesday and he scheduled her for a scope this coming Monday. Please everyone keep us in your prayers! This is scary for all of us!! I'm praying for a miracle and that she doesn't have an IBD! I'm prepared to face it if she does and I've tried to prepare her the best I can but I'm still hoping for a miracle so I cover your prayers!!! Thanks!! I will let everyone know what we find out Monday.🙏
 
Just wanted to say that calprotectin can be quite elevated with gi infections, esp bacterial ones. See below. Also, cultures may be negative sometimes (false negatives) when there is a bacterial infection. I read that happens 40% of the time for campylobacter bacteria; not sure about salmonella, shigella etc. There are other non-culture methods that are more sensitive. I would ask the GI how sensitive the tests were for bacterial pathogens.


Journal of Pediatric Gastroenterology & Nutrition:
November 2012 - Volume 55 - Issue 5 - p 541–547
doi: 10.1097/MPG.0b013e318262a718
Original Articles: Gastroenterology
Fecal Calprotectin as a Correlative Marker in Clinical Severity of Infectious Diarrhea and Usefulness in Evaluating Bacterial or Viral Pathogens in Children
Chen, Chien-Chang*; Huang, Jing-Long†; Chang, Chee-Jen‡; Kong, Man-Shan*

Supplemental Author Material
Collapse BoxAbstract
Background: Calprotectin is a marker associated with intestinal inflammation. The aim of this study is to explore the diagnostic value of fecal calprotectin in predicting bacterial/viral diarrhea and the application of fecal calprotectin in the clinical course of infectious diarrhea.

Methods: Patients ages from 3 months to 10 years with infectious diarrhea were enrolled, and from each patient, 2 to 3 stool samples were collected. Fecal calprotectin levels were determined by enzyme-linked immunosorbent assay and compared by pathogen and disease activity. A univariate linear regression was used to determine the correlation between fecal calprotectin and the clinical parameters, and generalized estimating equations (GEEs) were used for the time course analyses.

Results: The data include 451 evaluations for 153 individuals across 3 different time points. The fecal calprotectin level was higher in patients with Salmonella infection (median with range 765 [252–1246] μg/g) or Campylobacter infection (689 [307–1046] μg/g) compared with patients with rotavirus infection (89 [11–426] μg/g), norovirus infection (93 [25–405] μg/g), or adenovirus infection (95 [65–224] μg/g). Fecal calprotectin concentrations were elevated in patients with severe (843 [284–1246] μg/g) or moderate (402 [71–995] μg/g) disease activity compared with those with mild (87 [11–438] μg/g) disease activity (P < 0.05). GEE analysis suggests that fecal calprotectin is correlated with clinical severity (eg, Vesikari score) and may provide information for disease management.

Conclusions: Fecal calprotectin levels increased during bacterial infection and as disease severity increased, and its levels on the initial evaluation and follow-up visit are correlated with clinical severity. Fecal calprotectin may be a useful marker for application in children during infectious diarrhea.
 
She has had intermittent belly aches since she has came home. Some days she will be mid meal and begin to get nausea. She hasn't had anymore bloody diarrhea though. And the sensitivity on the cultures was supposed to be very high. They did it in house in her children's hospital as well as sent them off to an independent lab. That being said I do know people can have multiple tests not show a bacteria that is infecting them.
 
Well today is the day for the colon cleanse. I'm supposed to give her her first dose of magnesium citrate at 10 so wish us luck. She's so tiny to start with I hate to have to put her through this but I know it is necessary to figure out what we are dealing with. 😁
 
Well we made it through the worst parts. She was really Nauseated during the Mirilax stage. Me too. I've been doing it with her so it isn't as hard on her. Figured my colon could use some spring cleaning too!! Hard part now is she is so hungry and grumpy. She has a bad case of the hangry's!! And I'm catching them too!!
 
Oh no! I give you credit. I have to prep Tuesday and I am a way bigger baby than either of my girls. It's the no food thing that has this Italian mama freaking out.

What time tomorrow are her scopes? How far is the hospital? Bring a change of underwear and pants just in case. Some people even put pull ups on the little ones and adult diapers on the older kids. Our hospital is over an hour away and with the no liquids for 2 hours prior to check in time we were good but as soon as we got there, they both had to go. Just sayin', good thing there was an open bathroom right near the check in desk.
 
We have to be there at 9:45 and it is an hour and 1/2 away. Thanks for the advise about the clothes I hadn't even thought about that lol!! Hard to imagine either of us have anything left in there!!😝
 
Praise the lord he found a little polyp and he thinks that was what was causing it!! He removed it and he said she had no signs of an IBD NO CROHNS!!!!!!
 
Thank you guys for all the kindness you have shown me and my daughter during this time!! It has meant a lot!!
 

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