Hello everyone - newbie

[emie416]

Hello everyone,
I have been reading through this forum for a few weeks now, it has helped in so many ways in regards to so many questions, worries and general issues. I have read up to page 74 on the threads!
I thought I shall join and meet everyone properly!I feel like I know a lot of you already through reading your journeys over these pages of threads.
My name is Emie and I am from the UK , my son now 5 was diagnosed with Colitis in 2014, remission reached April this year. It took a long time to get his diagnosis , simply because Drs would never believe anything was wrong. First time Mum blah blah. It wasn't until I got in with a Children's hospital he finally got his diagnosis, as well as other diagnosis in other areas too.
Over the years, it has been really hard with never having anyone to talk to, or anyone who understood. From reading through these threads recently it has been the first time ever, I have felt comforted in the fact that the majority of everyone's stories are very similar to ours.
My son has just done his third fecal calprotectin in roughly a month (waiting on results) , it has been extremely frustrating because he has showed 'old symptoms' and the last two tests showed brilliant numbers. (First one was 35, second was 47). My issue is, he's never used Calprotectins before, these are the first time. I am slightly worried he is one of those that numbers don't show inflammation, when in fact there is.
At the time of diagnosis he was diagnosed via scopes, they found inflammation in the cecum, transverse, sigmoid and in the cecum they found granulomas. I am still unclear to how it was colitis rather than Crohn's because of the granulomas. I am still learning after all this time!
His stools have changed from 'normal' to flakey and undigested (sorry tmi) ! He also continues to complain of left sided tummy pain again too.
I am actually hoping the calprotectin will show something so they consider putting him back on some treatment! He came off treatment once he reached remission, which I had thought was a bit quick! He hasn't eaten properly for a while now and is loosing weight also.
So there it is, sorry for the long text , I was hoping for it to not be so drawn out!
Many thanks,
Emie

 

[emie416]

Also in 2014 they found ' significant lymphocytic aggregations' ( I still have no idea what that is) and one ill defined Granuloma. Again still no clue to what that actually meant. After a year of treatment the Granuloma had gone. He hasn't had another colonoscopy since 2015.

 

[my little penguin]

You can have Crohns colitis which means it's restricted to the large intestine
But still fits the definition of Crohns (patchy transmural non caseting granulomas etc...)
Or you can have ulcerative colitis which starts at the rectum and is continuous in the large intestine only
No granulomas would be found


Kids under 6 are considered very early onset ibd and sometimes have immunodeficiency which mimic Crohns and that is the true cause
They also tend to have different meds
Or more aggressive disease

Surprised he isn't on maintenance meds
Even if fecal cal is "normal "
They can do imaging /scopes to verify nothing is going on
Btdt many times before
Ds was 7 at dx and now is 13

 

[emie416]

Thank you ever so much for your reply, I had read quite a lot of your threads

This is what I thought, because typical colitis from what I 'thought' , was the rectum/ anus. He had inflammation in those areas I posted , but not the rectum/ anus. His Granuloma did go after a year of treatment, and after initial findings in 2014 the consultant stated it was early onset IBD , but said no to Crohn's.(how and why I have no idea) I have gone over his results over and over to see how they came to the conclusionof colitis at the age of 2 and not Crohn's. Everywhere I have read his results matched up to Crohn's a little more.
He also suffers from chronic gastritis, severe acid reflux and mild apthiod ulcers.
It sounds absolutely horrendous that as a mother I want his fecal calprotectin to show something so they will help us! I was initially pleased for him to try off meds because when you hear remission, you think fabulous, that's it where done!How naive was I?! After reading on here , it became clear that even if you are in remission you should still be on some form of medication?!

He's already complained of tummy ache and 4 stools today. Although they aren't particularly bad I know where heading up to something

I hope your little one is getting on ok?!

Once again thank you, I really appreciate it!

 

[emie416]

Does anyone else have any input, advice etc thank you

 

[Maya142]

Hi and welcome! I am surprised your kiddo is not on any maintenance medications. What was he prescribed when he was doing well?

Fecal Calprotectin, like any test, is only so helpful. It is generally quite accurate, but sometimes there are false positives or false negatives. If the next test is not high and he continues to have symptoms, I would push for scopes. They are the gold standard for determining if there is inflammation.

Like MLP said, if he has granulomas and has inflammation in his colon, it is likely to be Crohn's colitis, a type of crohn's that is confined to the colon.

Is getting a second opinion an option?

 

[Maya142]

I'll tag some other parents so you get more answers:
Clash, pdx, Pilgrim, Tesscorm, crohnsinct, Farmwife

 

[emie416]

Sulfasalazine which took a while but did work He use to go at his worst 17 times a day , sometimes they were so acidic smelling and burnt him . They thought he developed it from fructose and sucrose. After removing for a year, we found that wasn't the case but sulfasalazine worked. He came off whilst he had chicken pox and decided to keep him off. That's when they decided to try the calprotectine test. It obviously showed nothing, therefore they were happy he was in remission. I was so happy, we had never used calprotectin but was pleased it was a less invasive way of checking. Obviously now he's symptomatic and calprotectin isn't showing anything. I'm now concerned he may be one of those that doesn't show via that test .

 

[emie416]

Also forgot to ask, can GERD be a symptom of IBD? He was diagnosed with sever GERD at 2 also, and still suffers now. He had chronic gastritis in his stomach and apthoid ulcers. I have asked today for his initial report in 2014 , because nothing adds up properly :/
Thanks

 

[Jmrogers4]

Kids can have normal test results and still be in a flare, my kiddo is one of those. All his labs showed normal levels but an MRE showed massive inflammation in small intestine. He had also been diagnosed with GERD but once we figured out and changed his medication to conquer the inflammation in his small intestine all his symptoms disappeared was never GERD it was IBD. I had to push and keep pushing for further testing I as well wanted something to show so they would believe me that all was not well and although I'm sure I annoyed his GI at the time he tells me now he is glad I kept pushing and trusted my instinct he sees many kids but I only have mine and know when something isn't right.
My son has been in remission for 3 1/2 years now and is leading a completely normal life except for having to get infusions every 6 weeks. Just graduated from high school, will start university in August and just came back from a 13 day trip to Greece with his infusion due the day he got back was a little worried with all the changes he would get messed up but is doing great left 2 days ago to be a camp counselor. All that being said he is scheduled for another MRE in a couple of weeks as in the words of his GI "We never know what's going on inside him despite normal lab work and what he looks like on the outside"

 

[emie416]

Thank you for your reply, it is so nice to hear other people's experiences which are similar to ours. I sometimes think Am I going mad that I don't fully trust the diagnosis they are given him?!

They are overall really fabulous with their level of care etc, but poor at actually putting information across to you. It's only from here that I have learnt about Granulomas only really present in Crohn's ,not colitis. And also how he should still be on maintenance medication.

It must be difficult for them the older they get and the more understanding they have about it. It's lovely to hear that your son has been in remission so long, and living a normal life. I worked really hard when he was really little so he too could have that. He does and can do everything everyone else can, and is a happy little boy. It's just a few things that have started to niggle that I am worried about.

Thanks again for your reply x

 

[Farmwife]

HI and a late welcome.

My Grace was 3 at dx (she's 8 now) and much like yours was hard to dx because of her smile.
She also doesn't show much in her labs but her scopes showed a different story.

Aso far as, TMI on this forum. ......no such thing. :ylol:

A lots of symptoms you've mentioned that son is having would cause concern if it were Grace.
Grace never had a raised FC count. Which is frustrating because you want it to show something.

Unfortunately ibd in children can go from very mild to aggressive quickly.
If you feel he needs a maintenance med than ask I his gi.
Your his best advocate!:thumleft:

Grace is leaning on my shoulder
and I asked her what advice to give you and she said. ...
Make sure you stock your bathroom with lots of books and vidoes, cartoons are the best. :yfaint::ylol::yfaint::ylol:
Ibd kids are a breed unto themselves! :rof:

 

[emie416]

Awh thank you , what a lovely thing to suggest!

I hope she is doing well?

I am currently waiting for his next calprotectin results to come in, what ever they come back as, I will still request he goes back on his meds etc. I believe he has lost weight too, he just isn't bothered about food. Which is so dangerous for him, if he doesn't eat enough he becomes Hypoglycemia.

He has had every test under the sun to why it happens, but still no clue. His Metabolic DR is stumped by it. I believe it is linked somewhere with the IBD , but they are adamant it isn't !

Once again thank you. - Because he's still so young he find his stools 'funny' and pretends to be on a phone whilst on the toilet. Vivid imagination clearly :rof: To be honest , because he always has urgency he isn't on there very long, tends to go very quickly, comes off and then often goes back again.

 

[emie416]

A week in and still waiting on calprotectin ! So impatient with this test - I hate the wait! The lab at the Children's hospital only takes a week, but our local hospital labs take 4 week!! Bit of a difference!

The consultant has sent us an earlier appointment to see him, so i'm hoping we can get sorted again. He hasn't been complaining of pain the last couple of days, but is still going on average 4 times and still very 'flakey'. Does that seem normal or still a potential flare? I never usually have anyone to ask about this sort of stuff! He did tell me today that he gets constant tummy aches but 'I just get on with it Mummy and ignore it!' He is five though so we could be getting some 5 year old talk there - not sure !:shifty-t: