Newly diagnosed

[Maximillion]

Hi I am new here and newly diagnosed , but have spent more time in hospital since then than I have at home . I am down to 6stone 6lb which means I am stick thin I do eat but can:ybiggrin:not put any weight back on . They are thinking of tube feeding me but I cannot stand the feeling of that tube down my nose and throat . They can't do it just yet as I have had a crohns breakout in my mouth and my goodness was it painfull my mouth and throat was full of ulsers . How do you all cope with the constant pain ? does it get you down too . Any advice for a newbie.:frown:

 

[crohnsguy057]

Why not ask them about elemental feeding? My doc mentioned it to me in my earlier days, and I actually tried it. I'll be honest: it really wasn't the best tasting stuff, and I never went through with it, but it might be easier than a nasogastric tube.

I used to have mouth and throat ulcers: they went away as soon as I started meds, even before any other symptoms did. I also gargled warm, light saline, which helped a lot.

Constant pain... Good question. I've never had luck with painkillers. NSAIDs just make it hurt more, and anything with Codeine backs you up, so that when you actually go, it's really really bad.

Hot baths are good. Try one of those.

*Newbie hug*

 

[Ckt]

Maximillion..I see you are in the uk so I am not sure if this will be helpful but my brother is an oral surgeon and when I began getting those horrid ulcers in my mouth and throat he ordered something called 'magic wash'..it's benadryl(an anti histamine),viscous lidocaine(a watery xylocaine) and Mylanta or maalox. You swish and spit and it's pure heaven!

 

[Angrybird]

Hello and welcome to the forum, I am sorry to hear you are so poorly at the moment

I would also ask the doc about perhaps having some shakes instead of the tube once they have sorted the ulcers out, out of all the ones I have been given I found Modulen that nicest (with added flavourings).

Out of interest what meds have they got you on at the moment for the crohns and are they giving you anything for the pain?

AB
xx

 

[karj]

hey Maximillion

sorry you have been in so much pain. Hopefully when you start to build up a bit of strength and the meds kick in you will start to feel better. How did you get so bad, when did it start?