Wow my son was 21 when he had colectomy,he made the decision since he was 21,I am glad I did not have to make it.
There are some other possible options,that the docs will not talk about
LDN is Low Dose Naltrexone, very safe.
FT Fecal transplant,where you take stool enemas to re populate the bowel with good bacteria.
Triple antiobiotic therapy.
The easy things to try first is to take her off of all dairy,butter,cheese,milk,any food that says casein,or milk proteins.
Next you might try taking her off of all wheat,corn or grains in general.
Another possibility is to take her off of all nightshade vegetables,potato,tomato,eggplant,peppers of all types.
Sweet potato and black pepper are ok.
The first thing I would try is no dairy,for a month or so that is the easiest.
This is why I say try no dairy,this is old old data that the doc's may have forgotten about.
Also get her out into the sun as much as possible,vitamin D status is
My other advice is to educate yourself as much as possible on this disease
and its treatment,especially the surgery and j-pouches.
I am really very very sorry she has to go through this at her young age.
Many people exhaust all options before giving in to colectomy,it is a big
decision and once done it is done,no going back.
That being said sometimes colectomy is the only option.
What is the extent of her UC,since she has been on powerfull drugs with poor response
the options are becoming limited. Have they tried rectal meds,of course they may not
do much if she has pan colitis.
One other point is if surgery is decided upon it is
best that she is not too weak/sick at the time.
One other thing fo over to www.j-pouch.org
Look around ask questions,but don't let the site scare you.
Also here is a site for people with children and IBD.
I see from your other thread,she seems to be in the hospital at this time,
looks like you are running out of options. She has a very agressive immune system.
What are they feeding her,if possible request that she be taken off of all
dairy proteins,including eggs.
I am still fighting this disease after 32 years,still have a colon.
Post Edited (Old Mike) : 5/30/2012 6:10:44 AM (GMT-6)