Interesting doctors appointment

[Floridatilly]

Just for comparison

Normal lips

Todays lips

[MinniMouse]

Can you send a pic to your GP, along with a note explaining things and ask if they can expedite the appointment?

[HenrysDad]

My 15 year old has sever Ulcerative Colitis which was diagnosed over 3 years ago, but we have yet to find a successful treatment but have just started a new drug which we are keeping our fingers crossed will help.

Our lad has not really been to school since December as the Colitis has led to chronic fatigue also, but he has just started joining his class by video link using Teams, so there is hope.

Colitis & Crohns are not pleasant, fingers crossed your Son get a diagnosis and they can find a treatment which works for him

[soooexcited!]

I totally sympathise. My DD was diagnosed with Crohns August 2019 age 20. Unfortunately I knew what it was straight away, cant turn my nurse head off sadly. Her Dad and a few of his family have it to. The risk with a live vaccine comes from having medical interventions that suppress the immune system such as high dose steroids infusions and oral medicine ti treat IBD. I cant fault the care my daughter has received but unfortunately she didn't respond to any medical treatments and had surgery in March. Try and contact the IBD nurse or speak to the gastroenterology secretary to see if you can get some help. Its a hideous disease and very debilitating during flare ups.

[Floridatilly]

Originally Posted by soooexcited!

I totally sympathise. My DD was diagnosed with Crohns August 2019 age 20. Unfortunately I knew what it was straight away, cant turn my nurse head off sadly. Her Dad and a few of his family have it to. The risk with a live vaccine comes from having medical interventions that suppress the immune system such as high dose steroids infusions and oral medicine ti treat IBD. I cant fault the care my daughter has received but unfortunately she didn't respond to any medical treatments and had surgery in March. Try and contact the IBD nurse or speak to the gastroenterology secretary to see if you can get some help. Its a hideous disease and very debilitating during flare ups.

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The consultant did mention the possibility of removing a section of his the diseased bowel and using a catheter for a period of time then re attaching his bowel. But we are not at that stage yet.
I am just worried the more we wait, the worse it may get?

[Floridatilly]

Originally Posted by HenrysDad

My 15 year old has sever Ulcerative Colitis which was diagnosed over 3 years ago, but we have yet to find a successful treatment but have just started a new drug which we are keeping our fingers crossed will help.

Our lad has not really been to school since December as the Colitis has led to chronic fatigue also, but he has just started joining his class by video link using Teams, so there is hope.

Colitis & Crohns are not pleasant, fingers crossed your Son get a diagnosis and they can find a treatment which works for him

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His fatigue is shocking. He comes out if school crying it is also causing him to be rather grumpy too.
How old is your son? I hope he can find something that works 🤞🏻
My little one is 7

[Mariesmith]

Thats a shame for him. He must be so fed up feeling not well and sore lips.

If you search on the dibb 'special needs' forum there will be lots of previous posts about crohns and colitis that may help.

[Feebee2]

Can you contact PALs at your son's hospital?
They can sometimes help.
Best wishes to you all xx

[Floridatilly]

Originally Posted by Feebee2

Can you contact PALs at your son's hospital?
They can sometimes help.
Best wishes to you all xx

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I have never heard of PALS. What it is?
Thank you

[Feebee2]

Originally Posted by Floridatilly

I have never heard of PALS. What it is?
Thank you

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It's a patient liaison service. The hospital switchboard would put you though.
We've used them a couple of times to speed up appointments.