Worried

[9Worriedmomma]

Hi everyone!

I am here hoping can get some opinions. My 5 year old daughter has been suffering with bad tummy aches and loose stool since August. After two back to back round of antibiotics (15 days total) for a sinus and ear infection she developed Intense pain and loose stools. A test for cdiff came back negative but her belly pain persisted. Finally in January they retested her and it came back positive for CDiff she was put on flagyl and seemed to be doing better however her symptoms returned the belly pain and frequent loose stools. Her GI did numerous blood and stool tests and everything came back clear. Her fecal cal protection came back <16 twice and every cdiff test since her diagnosis has come back neg. Her GI said that she has a low suspicion of this being early onset Crohns which put my into a total panic. I am a nervous wreck. Her stools does get better for about a week but then her symptoms of loose stool and belly pain return. Some days she won’t poop at all and other days she fgoes about three time loose and cried in pain. After she goes her pain usually subsides. I feel like in on a hamster wheel and can’t get off. I have no answers. I guess I am just here to ask if her symptoms sound like they could be crohns related. Even though she has a low suspicion she does not want to rush her in for a colonoscopy because her tests all came back pristine (as she put it) I am just at a loss and just want some answers for my poor kid. Any responses would be greatly appreciated!

 

[awoenker12]

If the results all come back positive, then it could be a sign of Irritable Bowel Syndrome. However, you cannot completely rule out Crohn's without a colonoscopy or an MRI.

 

[crohnsinct]

A fecal cal of 16 is very low and it is the extremely rare case that someone with Crohn's would return all normal blood and stool labs.

Unfortunately, symptoms of MANY gastro issues are the same as Crohn's so it is hard to say yes it sounds like Crohn's. It could very well be any number of things.

Diagnosing gastro issues can take a very long time.

Recurrent c diff could be tough. Paging Maya142 as her daughter has had c diff more times than I can count.

15 days of antibiotics is rough. They could rip apart your system. I might lean toward the fact that they upset the microbiota and she could have SIBO (small intestine bacteria over growth.

Did she have a celiac panel done? Those symptoms are also symptoms of Celiac.

For now, I would not worry too much about about Crohn's and just start ticking each syndrome, disease etc off the list. In the meanwhile, every 6 months or so you could pull a fecal cal test just to keep an eye on that.

Good luck! We are here for ou because while it is an IBD forum we have all been down the diagnosing route and many of our kids have overlapping gastro issues.

 

[my little penguin]

Ugh post went pooof

Very early onset ibd is different
Presents differently and has an extra set of goodies it cones woth
You reallly need to be seen by a veo ibd clinic
Since things that are seemingly unrelated may very well be blues

Children’s of Philadelphia has a good veo ibd clinic

Well worth the review

They gave you see at least 4 specialists in one day
(Genetics Gi immunology abd nutrition)
Then you could return to your normal Gi woth a plan

Highly recommend it

 

[9Worriedmomma]

Thank you for your reply ladies!! She did have a celiac blood test done and it came back negative. She hasn’t lost any weight in fact she has gained some and is ALWAYS starving. She can eat more then my husband. she also has a ton of gas and is always belching or passing gas (sorry if thats TMI) I just hate seeing her in such discomfort with these loose poops and belly aches.. Every time she tells me her belly hurts I can feel my heart twist. I do feel she has a lot of symptoms of SIBO. Her stools are just all over the place she can go a week with no issues and then the next she is crying in pain. Once the doctor mentioned Crohns that is all that has suck in my mind. What a scary and frustrating journey this is. Thank you again for your responses they truly mean a lot!!

 

[crohnsinct]

Awww it is so hard when they are young and you feel so helpless. But try not to get ahead of yourself. Just get with a good pediatric GI who will keep pushing for answers. This definitely isn't normal but could be a simple fix. Don't let them brush you off with, "oh well, normal labs". A good registered dietician can help you manage IBS and may not be a bad idea because they can start to work with you and sometimes they have advice on other things to look into and sometimes a physician will tae their suggestions more seriously than a moms.

 

[Maya142]

Her GI did numerous blood and stool tests and everything came back clear. Her fecal cal protection came back <16 twice and every cdiff test since her diagnosis has come back neg.

Sounds like she does not have C.Diff. anymore. My daughter has had C.Diff 6 times and has just had a Fecal Microbiota Transplant (FMT - or a poop transplant ). Nothing on this site is TMI, as you can see! Anyway, the GI we saw for the poop transplant told us a couple interesting things, one of which sounds relevant in this case. He said that patients after having C.Diff. sometimes develop what he calls "post-infectious" diarrhea.

He says that a certain proportion of C.Diff patients truly have recurrent C.Diff - like my daughter, who had 6 positive tests. They test not only for the bacteria, but for a toxin produced by it, because there are some individuals who are colonized with C.Diff and you have to test for the toxin to know whether it is an active infection of C.Diff (which requires antibiotic treatment) or if you are just colonized with it. For patients who've repeated active C.Diff infections, an FMT is very successful.

But other patients that continue to have diarrhea despite having negative C.Diff. results will not benefit from an FMT. Sometimes they'll have patients who are positive for the bacteria but not the toxin, indicating that they're colonized. Or if both are positive, then definitely an active infection.

But multiple negative tests confirm that it's not active C.Diff. So it could be definitely be post-infectious diarrhea. The GI we saw said this is usually treated like IBS and with help from a dietician, it's often manageable. He did say that he thinks that once you have infection like C.Diff., which you then treat with either Vancoymycin, Dificid or Flagyl, the gut microbiome is totally messed up. So it takes time for the gut to get back to baseline. They treat it the way they treat IBS, I think. But not entirely sure.

But if it is that, or is IBS, know that is can be miserable, even though it doesn't cause damage. But getting stress levels down and working with a dietician and figuring out food triggers can help.

A Fecal Calprotectin of <16, is very reassuring! I wouldn't worry about IBD. It sounds like IBS. IBS can be difficult, it's manageable.

 

[9Worriedmomma]

Maya142 thank you so much for your reply!! That CDiff is the worst.. I am so happy your daughter got an FMT I hope she is doing better and it stays away for good!!!! I am really hoping this is post infectious IBS. Her symptoms are all over the place. Every time she gets a cold her stools get loose her tummy starts to hurt and I start to see tons of mucus. I don’t know of a mucus from your nose can get into your poop. I spoke with my GI last Friday and told her her symptoms have returned she told me if they continue they will do another stool study but she doesn’t want to rush her in for a colonoscopy. This journey has been so stressful. Thank you all for helping me with all
My questions it is more appreciated then you know.

 

[crohnsinct]

A hallmark symptom of IBS is mucus in the stool.

You could also have mucus with IBD (see what I mean about overlapping symptoms?) but it is much more common with IBS.

 

[Scipio]

A hallmark symptom of IBS is mucus in the stool.

Another hallmark symptom of IBS is abdominal pain that is relieved by pooping, which she has shown. That's another point in favor of post-infection IBS.

 

[my little penguin]

Is she holding up ok ???
Has the doc given you ideas to help the ibs ?
Fodmaps ?
Elimination diets
Activities (swimming works well on belly pain )

 

[9Worriedmomma]

She is doing ok I think I am having more of a hard time then she is.. there are times when she will go a couple of days without going to the bathroom and then she will go three times in one day with bad stomachaches ( I cant take the stomachaches) and loose stool.. Her GI hasn’t really given me any advice on IBS she did put her on some Zantac twice a day but that really doesn’t do anything. Her ped suggested to give some benefiber to bulk up her stool... it’s just so frustrating because I can’t get any definite answers and I really do worry that this is more then just IBS.

 

[my little penguin]

It’s hard not to worry
But keep a log food /symptoms /stools /dates
Ask about FodMapS diet it can help a lot of kids
Fiber can help or make things worse
Depends on the kiddo but start slowly whatever you chose
Too much fiber too fast doesn’t help anyone
Liquids are also your friend
As well as making time to go each day
My kiddos had a set time to “try” when they were little
Typically that’s an hour after eating
Pebbles then loose stool can be the loose leaking around the hard stuff
Hard stuff causes belly pain
May take a bit to go a Bristol 4-5 evetryday
There is even a kiddie version of the chart so they can tell you

My kiddo needs miralax to go normally
Has since age 7
Tried other stuff
Never worked but he also has crohns so ..
Not the best example

 

[9Worriedmomma]

So the symptoms are still happening Monday morning she woke up at 6:30 telling me her tummy hurt and to rub it. She said mommy rub it but don’t push.. then she made a very soft poop and then another one later that afternoon. This was all after a weekend of no tummy aches a day of no poop and then some formed poop mixed with loose... this is all driving me so crazy I feel like I am loosing my mind.. I spoke with the doc and she ordered another round of blood and stool tests along with a complete abdominal ultra sound. She just keeps telling me she doesn’t want to rush her in for a colonoscopy.. I just need answers and I feel like I am not getting any. Sorry for the vent.. but thanks for listening

 

[crohnsinct]

Oh man have I been there before. I think the stool testing is a great idea as are blood labs and the ultrasound. Hang in there at least the doc is listening and trying a few things.

 

[Maya142]

Hang in there!!

So my daughter is now undergoing testing to see what is going on with her. She improved after the FMT but then the diarrhea came back. She had one C.Diff test after the FMT, so we think it's either a Crohn's flare or post-infectious IBS. The theory with post-infectious IBS is that there is dysbiosis in the microbiome due to the infection. They treat it with an antibiotic called Rifaximin. We were told unlike most antibiotics (the GI gave Cipro and Augmentin as examples), Rifaximin does not wipe out the entire microbiome, just certain types of bacteria that cause fermentation. I think it's kind of the same idea behind the FODMAPs diet, if you've ever heard of that.

So now we are re-testing for C.Diff and Fecal Calprotectin (which will tell us if there is gut inflammation and if it's a flare) as well as other infections. If all is negative, she'll be treated for IBS with Rifaximin for 2 weeks. And we can use Levsin as needed.

I would guess they will re-check Fecal Calprotectin for your daughter and go from there.

 

[9Worriedmomma]

Maya142,

I am so sorry to hear that your daughter’s been having diarrhea. Hopefully is just the post-infectious IBS.. It sounds like you have an awesome doctor!!! I wish my GI would give me a better explanation as to what to expect with post-infectious IBS. She did mention it to me briefly but never went into any detail. This whole ordeal would be so much easier if she would give me better insight into what she is thinking.. I handed in all of the stool samples (which is testing for Cdiff and Calprotectin as well as some other things) and blood work so now I just sit and wait which is complete torture. I feel like I want to crawl out of my skin. She is scheduled for her abdominal ultrasound next Wednesday. I am just not sure exactly what that is going to tell me.

Her symptoms are in such a pattern she will go a bunch of day where she wakes up first thing in the morning have to go straight to the bathroom (these are usually the tummy ache day) Followed by days that she will go only once in the afternoon or dinner time and somedays that she doesn’t go at all.

It is so crazy I beg for an answer but at the same time I am terrified of getting one

 

[crohnsinct]

Awww we have all been there and actually visit often. hang in there. You will get answers. You are on your way.

As for the "wish I new what she is thinking"....Go ahead and just ask! I know it could be a little intimidating but I have learned through the years to just lay it on the line. Especially now with O. I have literally said to her GI, "sorry but I am going a little batty over here trying to out guess you. Would you please tell it to me straight." And then asked the question. Sometimes they will tell you, "I don't know what to think...I am throwing darts at the wall and hoping one sticks" but at least then you know you are in it together. Honestly, I have dealt with both the girls GI's this way and they much prefer that you outright ask them than get frustrated and start making assumptions etc. They are human and need a little guidance also.

Hugs and sending you fastest result vibes!