Crazy crohns

[dodie74]

My 13 year old is eating me out of house and home I'm not complaining as its great he has a great appetite but his calprotectin level is very high and due scopes on Friday but how can he feel so good, no symptoms and appetite like a horse!!! Crohns really does baffle me!!

 

[my little penguin]

Good luck with the scopes on Friday !!!

 

[dodie74]

Thankyou. It was meant to be done a fortnight ago but he took a cold and cough so got rescheduled. I'm just praying it's not too bad, only been 16 months since his right hemicolectomy x

 

[pdx]

I hope that the good appetite bodes well for your results on Friday. Good luck with the scopes.

 

[Clash]

Good luck with the scopes!

 

[Maya142]

Good luck!! Glad he's still eating well .

 

[ronroush7]

Best to you.

 

[Sascot]

Very odd isn't it. Hopefully the scopes will look okay. Very strange the calprotectin is high

 

[dodie74]

No idea what's going on....praying it's not much Sascot xxx

 

[crohnsinct]

Good luck! Will be praying alongside you!

Fwiw- at dx my daughter felt great. No idea she had disease. Only hint was growth. She had an fc of 1150!

 

[dodie74]

My son has been Like this since diagnosis 7 years ago...it's really bizarre how they can feel so good but not so good inside. Damn crohns!! Xx

 

[kimmidwife]

Good luck tomorrow!!!!

 

[dodie74]

So scope showed mild crohns at an area in large bowel and moderate crohns at the join where he had his hemicolectomy. One thing the consultant did say was that looking at the join you'd never know he'd had surgery as it was " a work of art"...surgeon had done a fantastic job ( was 16 months ago) and he got scope through that area and there was no crohns at other side. So next step is infliximab or humira but given the distance where we'd have to travel to for infusions ( 3 hours) we are leaning toward humira at this moment.
Can anyone give us any good advice on this med please? He is also staying on weekly mxt injection. Xx

 

[ronroush7]

So scope showed mild crohns at an area in large bowel and moderate crohns at the join where he had his hemicolectomy. One thing the consultant did say was that looking at the join you'd never know he'd had surgery as it was " a work of art"...surgeon had done a fantastic job ( was 16 months ago) and he got scope through that area and there was no crohns at other side. So next step is infliximab or humira but given the distance where we'd have to travel to for infusions ( 3 hours) we are leaning toward humira at this moment.
Can anyone give us any good advice on this med please? He is also staying on weekly mxt injection. Xx

I wish him the best. I have had two loading doses and the first maintenance dose.

 

[Pilgrim]

A few comments - sorry I missed this at first.
Yes to your first post! Daughter showing no bowel symptoms and great appetite with fcal over 3000. I don't get it either. Scopes in a few weeks.
She has been taking Humira for a year and a half. The injection stings quite a bit. It helps us to keep the med out of the fridge to warm up for a few hours. She was quite tired/out of sorts with the loading doses but it got better within a few months. It has worked for us but we did end up moving to a weekly injection.
I'm sorry the scopes weren't great!That is so disappointing when there is no real indication.

 

[dodie74]

Pilgrim is it the pen your daughter is on? Does she also take methotrexate or any other meds too? Xx

 

[my little penguin]

Ds has been on the humira syringe for 4 years .
He is on weekly shots
He also takes Mtx pills (17.5 mg)
We have a script for lidocaine - draw it up and disassemble the humira syringe
Inject the lidocaine into the back of the humira syringe
And then inject the humira
This makes the medicine less painful

We tried without the lidocaine for about a year and half
Ds cried a lot since he was older ( age 9) and knew when shot day was etc...
Now at 12 shot day isn't a big thing.

It took about 5 months to be therapeutic for ds

Good luck

 

[Sascot]

No experience of the meds. Good luck with the Humira, hope it works great

 

[kimmidwife]

Good luck with the humira. I second MLP about asking for lidocaine e for the injections.
My daughter only had two due to an allergic reaction but she found them terribly painful.

 

[Pilgrim]

Dodie my DD is on Humira monotherapy at this time.
We use the syringe and not the pen.
We were advised against adding lidocaine by her physician just to keep it simple. She got used to the sting. Not saying anything against the idea in general but just offering another view in case you need to use the pen or don't want to deal with it. The discomfort lasts 10-20 seconds and helps so much. Well worth it for us.

 

[Maya142]

We used the pen. It is painful - really burns. We used ice, did the shot while watching TV and gave them treats after (chocolate, cookies). We never tried adding Lidocaine, but I have heard it helps.

We iced before and after and both my girls said that helped. They did get used to the shot and understood that they needed it, but hated it. It was much more convenient than Remicade (but both did prefer Remicade).

My older daughter recently switched from the pen to the syringe and says the syringe is less painful because you can control the rate of the shot. She wishes she had switched long ago.

Good luck with whatever you choose!!

 

[dodie74]

Why does it burn? It's really scaring me is humira weekly injections too? Xx

 

[Maya142]

It's the medication that burns. It has to do with the pH I believe. It can be weekly but generally it is given every two weeks at least in the beginning.

Just as a head's up - there is a loading dose that it is 4 shots on the first day and two shots two weeks later and then you go to the maintenance dosing (which is typically one shot every two weeks).