10yrs of ups and downs.

[amberine]

Hi, my 18 yr old son was diagnosed with Crohn's 10yrs ago. We have been through so much with him culminating in him having to have a ileostomy when he was 16. in the last few months his lips have swollen to the point of not being able to eat properly. The hospital have said this very rare and are unsure of the correct treatment. Please, if any one has this problem or can help with information on how to deal with this, it will be most welcome. He is suffering a great deal and we are doing every thing we can but it has not been successful.

Love, light and blessings to you all

 

[fruitlover61]

I'm sorry to read of your son's suffering. I have not heard of this except with some type of allergic reaction? What about any of his meds or foods?

 

[amberine]

thanks for your re-ply. we have had all the meds and foods checked, nothing seems to be causing it except Crohn's.

 

[David]

Hi there and welcome. I'm so sorry to hear about your son. I can't imagine how hard that must be. Some questions:

1. Is he on any current medications? If so, which?
2. Are his lips simply swollen or are there lesions/chapping/any other symptoms associated with the lips?
3. Did the lip issue only start after the ileostomy?
4. Does he drink Irn-Bru?

I SUSPECT he has Orofacial Granulomatosis. The conventional treatment would be injections of triamcinolone (steroid) into the affected area every few weeks. This tends to work really quickly, the swelling usually resolves completely after a few injections (3 injections would be a usual course).

I would also be sure to cut out cinnamon and anything with benzoate including sodium benzoate which is a VERY COMMON and TERRIBLE food preservative and can also be in shampoo, soap, toothpaste, etc. Check EVERYTHING.

Finally, I would be sure to get his vitamin B12 level tested and even if that comes back normal (I doubt it will), get him on a high quality oral vitamin B complex and injections of the B12 if that is low.

All my best to you.

 

[amberine]

Many thanks David for the reply. Below is a list of his meds at moment.

Ciprofloacin 250mg 2 daily.
metronidazole 400mg 2 daily.
Ferrous Fumarate 210mg 2 tabs 3 times a day.
Prednisole as sodium phosphate 5mg tabs on a decreasing daily dosage chart.
Colchine 500microgram 2 tabs twice a day.
Soaium chloride 600m/r tabs twice daily.

He has had his bloods checked at hosp just waiting for the results.
Thank you for the info i will be checking with him what he has at work to see if there is anything he is having that maybe the cause.

Love, light and blessings to you all.