Hoping 4th Remicade will help Bailey

[Clarej121]

Hi

Bailey is going into hospital to have his 4th Remicade infusion tomorrow..
We need this to start taking effect as he has been suffering far too long now!

He was scoped 2 weeks ago & they said his ulcers are starting to heal! Still waiting on biopsy results..


We can't be happy as Bailey still no different & suffers pain everyday still.
His consultant said how well he was looking & he had put weight on..

Well he should be aware that he has always looked well & that isn't how he looked inside when he was pickles in ulcers from mouth to Anus up to April 11.

Is Crohn's all about ulcers??
Is there other elements that cause Bailey to suffer??
It's worse for him to be told your getting better & he still feels rubbish!!

We are so frustrated with it all now.. Staying strong just about but how long can you keep this going..

I stupidly promised him that he would start to feel better with the 1st Infusion..
Will never give him false hope again..

Current meds Chinese herbs
Remicade 8 weekly
100mg Azathioprine
2g Pentasa
40mg Omeprazole
Multi vitamin
Pain relief everyday inc Tens machine

 

[muppet]

The first infusion usually does work very quickly.

I'd be seriously leery of those "Chinese herbs". They can't be dosed accurately and may do more harm than good. What herbs are you using, and what research are you basing the treatment on?

The Aza dose is pretty high, how old is he? I'm not familiar with Omeprazole, what's that for?

Have you done any dietary modifications? Low residue? No dairy? Low carbs? Gluten free?

 

[chrisnsteph1022]

Omeprazole is a PPI for reflux.

I hope it kicks in with the next infusion! Waiting for meds to work can be very discouraging.

 

[Clarej121]

Hi Muppet & Chrisnsteph1022

Thank you for your replys to my thread.
We've not long arrived home from hospital ( infusion)

Bailey is 14 years old & been diagnosed 1 year ago.

Regards to the chinese herbs, he has been taking them for 3 months, i have chosen a doctor with clinics around the uk.

Mainly London, he has an amazing reputation & his special interest is Auto immune & Bowel.
I have a few friends that have been treated by him, he can be googled.. Ken Lloyd

He is pretty much prescribing along the same lines as western Medication but in a more gentle approach.
Eg, Suppress immune system, heal ulcers, help with retention of stools, fatigue.

I went to him with Bailey as i joined this forum & it didn't take me long to figure out my son was following the same route most of you were on, although they say no 2 sufferers are the same..
Bailey went on Modulen for 8 months as everytime we introduced food he got ill again, so mentally i had to help him & find more help..

I hope you can see why as i would do anything to help him..
Even if its not the herbs helping by the scope results a fortnight ago they are not harming him..

His consultant swears blind there are no food triggers with Crohn's, although i don't believe that with some threads on here say otherwise.
As everyone on here has 1st hand experience i know which advice i would rather take.
Ive put the whole family on as much Organic food as possible.
Eg, veg, fruit, milk, yogurts.

I would take any advice on diet that anyone is willing to give me.

The best thing i can hope for now is that Bailey gets some relief from this 4th infusion & trys to get to school as he is so far behind..
But most of all to see him smile & laugh like he used to..


Lots of Love
Clare X

 

[moogie]

it's bound to kick in at some point. I will keep my fingers crossed.

As for ulcers I've never had one and I have been sick since the age of 13, now 37.

 

[Clarej121]

Thank you

So i guess Crohn's isnt about ulcers he just had them too.
Immflammation must still be bad then..

Consultant tells me on a need to know basis & sugar coats everything.
Makes me feel guilty for being worried & asking questions.

Its still early days so sorry if i seem nieve

Love
Clare
X

 

[Dexky]

I hope it works for him Clare, but there are those for whom it doesn't. Has your GI suggested alternatives, perhaps Humira? If your son is in constant pain and missing so much school, something's obviously wrong. How could you do anything but worry and ask questions!!! Your baby is hurting! Nag the hell out of them until they make him feel better!!

 

[Clarej121]

Dexky
Thanks for your post.
Maybe its working very slowly as ulcers starting to heal since April.
I'd really like to think so..
Humira..i noticed on here that this is the next step.
Does it carry more risks than Remicade?

I know its all got its risks & if i think about it for too long i get weak, so confused by all the treatments..

You are so true about our right to worry..
Thats our job..
I'll keep nagging..
Looking forward to tomorrow as raising money for Crohn's research..

Will post on here how much we raise

Thanks for all your support
Clare X

 

[Dexky]

I couldn't truly answer which has more risk. Many will say Remi, since it is actually derived from mouse genes and Humira is fully human. It all scares the hell out of me but....

Devil.....................(we are here).......................Deep Blue Sea!!