12 year old extremely fecal calprotectin IBD

[Remmy123]

My son has had constant diorreah since Xmas with fresh blood. We are waiting for an appointment to the gastro ward but I saw his results and his fecal calprotectin was sky high (2,000) the week before it was 550.

He does not suffer, he has no stomach aches , eats normally and has energy, looks well, etc

The doctor was amazed with such a high reading he is not in pain.

He tested negative for celiac so they think it's IBD.

I'm thinking Chrones but the more I read doesn't that come with stomach pain and feeling unwell?

Anyone have any thoughts?

Thank you

Update from the appointment.

They think the bleeding is a polyp and he may have very mild Chrones so we will be having a colonoscopy in a few weeks.

Feel a bit better for some reason - very nice doctor, was very reassuring

I meant to come on here earlier @Remmy123 and wish u luck. So glad u feel a bit more reassured. How is DS feeling?

Thank you @Whywonttheyletmeusemyusername

He is totally fine in himself .. thankfully and understands why this is necessary.

How is yourDD? Hope you are both well?

The doctor was v kind - I said I had read so much ( a lot scary) he said when I know what it is, I can read info relevant to my son.

Hope we can get the answers on the colonoscopy 🙏

Thats the power of Google It is so easy to go down rabbit holes, and scare ourselves witless. Not always a good thing, but then on the other hand, I know I could definitely tell you the complete workings of the lower and upper intestines . Glad he is taking everything in his stride. My DS has had a bad day today unfortunately, and been in bed sleeping for most of it 😒

😂😂 that's hilarious!! I must say I've also learnt an awful lot that too - the doctor kept asking me how I knew so much!!

One thing I didn't ask is how come they didn't think it couid have been colitis as there was bleeding.

Anyway I'm going to try and not over analyse too much as no one really knows until they look.

He did also say that just because the reading is high from stool samples it doesn't mean there is more inflammation (that's what I thought)

I hope your DD feels better today, poor thing - hopefully you get a date for the pill camera soon?!

@Remmy123 Thank you...do I. I'll keep u updated . Unmumsnetty hugs for you and ur DS

*so do I

So colonoscopy is booked in for end of March - 2 weeks self isolation before hand so no school - gutted 😞

Well back for a few days

@Remmy123 Good luck with the colonoscopy. Be prepared that the prep they have to drink beforehand is vile. It may take a lot of bribery to get him to drink it. Do not add anything with colour into it, you can add something like lemon squash to see if that will mask the taste.
Have soft toilet wipes to hand, cream for a very sore bottom, and stay near to the toilet. Don't worry if it takes time for the prep to work, that happens sometimes, but it will start to work. If you want to check out the bowel prep diet, I have used this one in the past.
www.yeovilhospital.co.uk/wp-content/uploads/2015/07/Colonoscopy-bowel-prep-diet-sheet-Oct-15.pdf

@Londonnight thank you!

He is going into hospital for the bowel prep the day before and staying over night as I said I was worried he won't drink it and they recommended he goes day before - I haven't told him any of this yet!!

Hi @Remmy123, pleased you've got your appointment date. We're still waiting 🙄. Have u told your DS yet? How has he been ?

@Whywonttheyletmeusemyusername sorry to hear you are still waiting. I can't believe how good they have been with us, every appointments had been within two weeks but it makes me anxious they are prioritising him 😞

He is delighted he is only going back for 2 days and then self isolating, he has loved homeschool and will continue with online learning. I'm guttted tho as really keen for him to get back into school like his mates.

I've not mentioned the drink he has to drink and won't until he is there, or that he can't eat until the procedure.

I'm so anxious as to what they may find it's causing me restless sleeps - I generally always fear the worse!

How is your DD feeling? Is she ok to go back to school?

Pleased to hear he is going in and staying in for bowel prep. We were supposed to do that but for some reason GOSH decided at the last minute that she could do it at home. It was very stressful and getting her to drink the stuff was very difficult. She kept gagging and threatening to be sick.

In the end I put on her favourite TV show ( The Durrells ) and told her to sip slowly through a straw while engrossed in watching. Once she was relaxed the drink went down a bit easier. I remember she was allowed some light coloured ( not red or pink ) sweets to help take the taste away.

@AngelsWithSilverWings maybe I'll get some sweets for him to take in - I am so relieved he can go in for the bowl prep

Just can't wait to know what it is now and then hopefully move on!

@AngelsWithSilverWings how is your daughter getting on now with the medication, is she feeling better?

@Remmy123 she has finished her intensive course of prednisolone now but is on azathiaprine and some granules that she has to keep taking for the foreseeable future. She has constant tummy pain at the moment - it came on last week and isn't going away. No blood though thank goodness.

She was stressing about her weight gain ( she has put on a stone since starting her medication in January!) and her face has gone round and puffy because of the high dose of steroids and she has developed a double chin which she is most upset about. This will all go back to normal within 6 months and she was very underweight before this all started so a bit of weight gain is a good thing.

It's hard for a 12 year old girl who obsesses about her appearance all the time and she is worried about being teased when she goes back to school next week.

Oh bless her!!! At least it goes within 6 months - shame she still has tummmy aches, hopefully that eases off. Poor thing 😢

All such a worry this parenting!

Yes @Remmy123, she's going back next Thursday 11th. DDs school has been brilliant and I'm hoping that actually being with her friends again, gives her the boost she needs right now.

@Whywonttheyletmeusemyusername that's great .. def will be good to be with her friends and out and about!!

How are things @Remmy123? This thread fell off my list....nightmare . My DD is back at school, but is so so tired. How is your DS?

@Whywonttheyletmeusemyusername oh bless her, though to be fair I bet all the kids are shattered! Did you get the appointment date?

DS is fine he is self isolating after just a few days of school, has been football training from home and managed 2 hour of PE at school, not tired still full of beans!

Now down to 1 BM a day so it's improving. Or this flare is comong to an end.

It's like I have a very healthy child at home who is potentially about to be diognosed with a disease - none of matches up 😕

Oh thats good to hear @Remmy123. Its so frustrating isn't it. DD went in last Thursday for a "reintegration" session, and was also bouncing off the walls with energy. Sunday and yesterday she was a completely different child 😒 We have a videocall with GOSH later today, so hoping they give me a date 🤞🤞

@Whywonttheyletmeusemyusername Good luck with your call today!! Hope you get a date soon snd some answers so you can move on - hate being in limbo!! X

@Whywonttheyletmeusemyusername how are things?

Thought I'd update, my son was diognosed with colitis.. the bowel prep was pretty traumatic for him and not eating for nearly 30 hours as he was last to be seen!

Been put on 3 weeks of anti inflammatory medication then back to the hospital for follow up.

Very glad to have the diognoses so we know what we are dealing with.

He is back at school, colour back in his face, has even put on a bit of weight (trousers too tight!)

Hope everyone is well!