My GP thinks my son has Crohns :(

[SJ!]

Hi All,

I'm not really sure what to say to the GI when we see her next month. And I was hoping for some advice from some other parents. Our GP thinks that my son Elliot 12yo needs a colonoscopy

My husband became seriously ill last year and was diagnosed with Crohns in January.

I have ALWAYS known that Gregory ( My husband , Elliot's loving dad) was suffering from something..... I had myself convinced he had Chronic Fatigue.. at one stage anorexia because he kept ducking to the bathroom so frequently.

My 12 yo has been diagnosed with chronic fatigue also due to a connective tissue disorder. When Elliot was 5yo a GI diagnosed him with IBS, but wouldn't do a colonoscopy because he was not in the lowest 10th percentile for his height and weight (he was in the lowest 20th..) but yes, his ribs weren't sticking out. Elliot has cycles of feeling terrible feeling unwell, feeling average and occasionally (rarely) feeling good. Elliot is a natural athlete (I'm a proffesional swimming instructor). But he has gone from being great at sport to barely participating over the last few years.

I really agree with the GP but I feel I can't ask for a colonoscopy...

 

[DustyKat]

Hey SJ!...:ghug:

I am so sorry to hear that your son is having problems.

Do you keep a diary of your son's symptoms? If not perhaps start one now and begin by documenting everything you can remember over the years and then go from there. We have suggestions in the wiki that may help to get you started...

http://www.crohnsforum.com/wiki/Diary-Inclusions\

...writing things down means you don't have to rely on memory so much and also when things are in black in white it is harder for health professionals to refute.

In view of your son and husband's history, plus the GP's recommendation a colonoscopy shouldn't be difficult to obtain BUT if the GI baulks at doing an invasive procedure straight up you have a trump card up your sleeve and it will be something you can use to negotiate /compromise with if the GI won't agree to the scope. That is a Faecal Calprotectin.

I would say the following if the scope is a no go:

I understand your reluctance to perform such an invasive procedure on my son but in view of my justifiable concerns then I think it only fair that you request a faecal calprotectin be done.

A faecal calprotectin is a stool sample that will indicate if there is inflammation in the bowel. It is a non rebatable Medicare item but the cost isn't overly prohibitive. The most expensive lab charges about $140 but you can get it done quite a bit cheaper than that.
These days it is often used as a predictor to needing a colonoscopy. It won't diagnose Crohn's but at least it is a step in the right direction.

Is there any particular area of the bowel that you suspect the Crohn's may be located?

Have any blood tests been done?

Dusty. xxx

 

[SJ!]

Oh Dusty!!

Thanks so much for your reply. I feel so lonely with this No Idea how Elliot and Greg feel.

The Gp did the blood test in his office yesterday, he is fantastic! Elliot hasn't eaten properly for over a month. The poo test needs doing too.... I know he'll be reluctant for that one!

Your advice was perfect I will start writing tonight and I will request the test you have mentioned although I know nothing about it (will research it tonight) also I will ask her to phone my GP if she doesn't believe me surely he will have some sway.

I feel like terrible mum, I wish I had fought for a diagnosis years ago I suspected IBD 7years ago. This time I am getting them sorted because their quality of life is horrible

Elliot's pain is in the center of his stomach, for about 1 month his stomach has been gurgling, very audibly, forgive me but I thought he was reacting phsychosomatically to Greg (as he has been so sick). The final straw was Elliot waking up feeling like making pancakes before school which I let him because he had barely eaten anything and then after serving his brother/sister and me, he said he felt sick again and refused to eat.

 

[Mehita]

I don't even know you yet, SJ, but I can tell you right now you are NOT a terrible mom. I got that award five years ago when I discovered my then 8 year old thought diarrhea was normal. I had to take him to the yard and show him a dog poo. He said he's never pooped like that for as long as he could remember! And that is where our Crohn's story starts.

Why do you feel like you can't ask for a colonoscopy? Like Dusty said, fecal cal is a good, non-invasive place to start along with the standard labs. An endoscopy and MRE may be in order as well, especially if his stomach and/or small intestine is involved. An MRE is best for identifying possible strictures. Is he in a lot of pain? Is it constant?

I hope you find some answers soon and can get him feeling well again.

 

[DustyKat]

Oh mum, I know it's hard not to feel guilty. :ghug: Actually I think that is one of my best traits! Along with its twin worry! :lol:
Hindsight is a bugger and I don't think I would be wrong in saying we can all look back and wish we done at least one thing differently and in my case the things are too numerous to count! :eek2:

The thing is, we do the things we do based on what we know at the time. Had we a crystal ball then we wouldn't make those choices. :hug: And hey, it isn't usually us brushing things off but listening to others telling us that everything is fine. :wink:

Do you know what bloods he had done? Doesn't matter if you don't but now the journey is starting be sure and get copies of everything...blood results, imaging results and so on. It allows you to keep track of things and remain in control plus you can tell us and we can all put our two bobs worth in! :lol:

Dusty. xxx

 

[SJ!]

Getting ready to sort out a diagnosis!

Thanks Mehita and Dusty,

I said to Elliot yesterday that the problem with his Daddy is that he has like grazes inside his bowel, which bleed, as your not supposed to bleed from your bottom and he said "oh you're not supposed to bleed?" When he was 5 we oriiginally went to the GI as he had anal ulcers Not feeling hopeful.

But I am feeling supported thanks guys, this is not a discussion I feel I can have any where else outside a Dr office. The odd thing is I feel like I'm exaggerating it all but the truth is I'm not the facts are the facts.

 

[Niks]

Hi S J.

You've had some fabulous advice already. Definitely post everything on here! You'll get great support and advice and in my opinion end up knowing more about your child"s condition than most health professionals.

I really hope your son get the tests he needs quickly and he gets a proper diagnosis and treatment really soon. (((HUGS))) xx

 

[Catherine]

There are blood tests the GI will like order if they have not already been done Full Bloods, Iron studies, B12, folate, celiac, D

Sorry forgotten the names for the inflammatory markers.

If you can get your GP to order them first, you will get further with your first appointment. Get copies from the GP and taken with you if possible.

 

[Wendles]

Hi All,

I'm not really sure what to say to the GI when we see her next month. And I was hoping for some advice from some other parents. Our GP thinks that my son Elliot 12yo needs a colonoscopy

My husband became seriously ill last year and was diagnosed with Crohns in January.

I have ALWAYS known that Gregory ( My husband , Elliot's loving dad) was suffering from something..... I had myself convinced he had Chronic Fatigue.. at one stage anorexia because he kept ducking to the bathroom so frequently.

My 12 yo has been diagnosed with chronic fatigue also due to a connective tissue disorder. When Elliot was 5yo a GI diagnosed him with IBS, but wouldn't do a colonoscopy because he was not in the lowest 10th percentile for his height and weight (he was in the lowest 20th..) but yes, his ribs weren't sticking out. Elliot has cycles of feeling terrible feeling unwell, feeling average and occasionally (rarely) feeling good. Elliot is a natural athlete (I'm a proffesional swimming instructor). But he has gone from being great at sport to barely participating over the last few years.

I really agree with the GP but I feel I can't ask for a colonoscopy...

Hi sj , what about a ultra sound this is how they first suspected my son had crohns which we were finally diagnosed in may ( officially) still waiting for MRI ( in August) my son is 12 also good luck Wendy

 

[Tesscorm]

Hi SJ,

Welcome to the forum! It can be quite overwhelming at the beginning, so much information, so many questions AND so many decisions! The members and parents here are incredible!!! with both their support and their knowledge!

It certainly sounds like you're as on 'top of things' as you possibly can... as Dusty said, hindsight is so clear... I know I've thought back and wondered 'why didn't I check that?' or 'why did I do that?'!! :ghug:

Feel free to ask any questions here but also have a look through some of the other forums - tests for IBD, treatments, etc. The forum wiki is also a great source of information.

The inflammatory markers Catherine referred to are CRP and ESR (sometimes referred to as Sed Rate).

Completely agree with getting copies of reports, results, etc. You may not understand much of what's said in them now but they may be useful as time goes on.

If Elliot isn't eating well, consider supplementing his diet with nutritional shakes. Exclusive enteral nutrition (liquid only diet) is often used to induce remission in children. There are different formulas, some more palatable, some more easily absorbed, etc. I think it would be a good idea to get some info on this (in our treatment forum)... However, for now, it's a fairly easy way to simply supplement his diet with one or two (or more) shakes per day and ensure he gets a bit more nutrition. Some of the more 'flavourful' shakes would be Boost or Ensure.

Good luck!!

 

[CrohnsKidMom]

Welcome, SJ! Like the others have said, hindsight is 20-20. When I look back, my 8 yr old had signs of Crohn's since toddlerhood that both I, and our family dr, missed.

My son's pain sounds like it is where your son is having pain-middle of his abdomen, just above his navel. There were lots of blood tests, stool tests, ultrasound, MRE, and yes, a colonoscopy and endoscopy. One test my son had that I haven't heard others mention is an indium scan. It was really helpful in determining where the inflammation was. I could see it on the screen myself. The test is done in nuclear medicine, whereby they draw blood, remove the white blood cells, mix it with something radioactive (that's the scary part, although they assured me it was safe), then inject it back in the body. My son then laid under a scanner (and watched a Disney movie the whole time), I could see where the white blood cells collected, which is where he was inflamed. Perhaps this is an option for you. Less intrusive than the scopes.

Hang in there!

 

[Jmrogers4]

Hi SJ
You have been some good advice about keeping records, FC, EN.
All I can add is my hubby has Crohn's as well and when Jack started, well really he always had issues. But when he really quit eating and the weight was dropping on the growth charts. We were sent for colonoscopy right away based on his dad having Crohn's and the symptoms he was showing.

 

[my little penguin]

Thing to remember the colonscopy is more traumatic for the parents than the child.
Not doing a colonscopy will not make him it have crohn's
It just may let the damage go on longer.
Also looking via a colonscopy will only confirm one way or the other
It may lead you in a different direction for the cause
The other non invasive tests are ok to be used to get to the point of someone ordering a colonscopy but ideally the colonscopy is the hold std for a reason.

Our Gi thought my son had something completely different going into his colonscopy.
All of his other tests taken after the colonscopy were normal so for him it would have left his crohn's undx while it did more damage.

Good luck

 

[Tesscorm]

Just want to add one thing re the colonoscopy...

agree to all MLP said above, just keep in mind if the crohns activity is limited with in the small intestine, scopes may not show (scope can only reach a small distance into the small intestine).

Even if colonoscopy is clear, if symptoms persist, further testing should be continued. To see the small intestine, the options are MRE, CT scan or capsule endoscopy (tiny camera you swallow which takes pictures as it moves through the intestinal system). They all have their limitations compared to a colonoscopy, however, as far as I know, these are the best options to 'see' the small intestine.

(MLP, anyone, correct me if I'm wrong.. )

 

[DustyKat]

That is right Tess.

As Wendles has said, ultrasound can also be used for an actual diagnosis but it won't provide the level of information that scans, enterographs or the camera can so they usually follow on to give the GI a clearer picture of how extensive disease is.

You will also find that if a scope does detect disease in the terminal ileum one of the above tests, excluding ultrasound, will be performed for the same reasons. The small bowel is up to 7 meters long and scopes only get into the some of the duodenum and the start of the ileum so that leaves a huge amount of uncharted territory.

Dusty. xxx

 

[SJ!]

Hi all,

I have Greg (hubby)is still sick he hasn't even reached remission, when Greg started to get sicker this time last year we new nothing, we booked a non urgent GI appt as he hadn't been before! But then he got so sick that he went in through A and E. With BM every 20mins, they thought he had an arterial bleed as he was bleeding out... we joined the forum in January.

But thanks so much to all the mums responding with welcome messages, I feel Elliot needs the colonoscopy done. But yes I have so many options to bring to my appt if the GI disagrees! Thanks thanks thanks!!!

What I don't know is how to make my posts prettier so all G's med info is stated.

 

[DustyKat]

Do you mean a signature?

1. Go to settings on the top tool bar and click on it.

2. You will then find a menu on the left hand side of the page.

3. Scroll down to the third blue heading: Settings and Options.

4. Under that heading your 2nd option is Edit Signature. Click on it.

5. Happy signaturing! Remember to save your changes!

PS. Your signature will only appear on your first post of each page in a thread.

Dusty.

 

[SJ!]

Yay! Thanks Dusty! I have woken up a littke more happier today. Just to mention the GP said to Elliot directly that he will need a little operation. I feel very blessed to have such a kind GP. And thanks for the posts.


Elliot's sore stomach was felt by the GP, so I wonder if it felt swollen. As our GP isn't or over treat that wss a pretty big call!

 

[DustyKat]

If there is swelling/thickening due to inflammation they can feel it as a 'mass'

With my daughter's history, when I took my son to the GP he was able to palpate a mass in his RLQ, that coupled with his elevated CRP the GP said there and then he thought it was Crohns.

Ultrasound confirmed the thickening and colonoscopy confirmed the diagnosis.

Dusty. xxx

 

[my little penguin]

We just told DS the doc needed a closer look and he would be a movie star.
That the doc would take pictures to help figure out what was wrong and we would show him the pictures when he was awake. We also explained he would be asleep the entire time and they would give him special dream air to breathe .
He was 7 at the time... So it worked .

Make sure they do an upper and lower scope since one or both areas is more likely to be affected in kids.

 

[SJ!]

Thanks MLP. It is hard for you to to have your little one have this test at 7. Elliot turns 12 in 3 days, I think he is grossed out, embarrassed, but a little glad someone is listening, I know Greg is happy for Elliot because Greg doesn't want Elliot to suffer like he has.

Now we have the wait. Elliot's appt is on the 22nd August. 2 days after Greg has major surgery for a skull base tumor. I have been uplifted by this forum and your support and care has brought a tear to my eyes. I

 

[upsetmom]

Greg has major surgery for a skull base tumor.

I hope everything goes well with his surgery...:hug:

 

[DustyKat]

Whoa, you surely do have a lot going on SJ. :ghug:

Sending tons of luck and healing thoughts that Greg's surgery goes well and his recovery is speedy and uneventful. :heart:

:hang: mum, you are surely in our thoughts.

Dusty. xxx

 

[SJ!]

It all sounds so serious to write it out, that it can't be true. But it is happening. Thanks again, I thnk I'll go out into the sunshine and do some gardening for awhile. Keeping you all in my thoughts and prayers too.j

 

[Niks]

Sending hugs too. You really are going through the wringer .

Really hope everything goes well xxx