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Hello all, I just wanted to share what my daughter has been going through this winter until now-early June. She has been in increasing pain. She ended up in hospital mid-May. Boyfriend found her passed out on bathroom floor-toilet full of blood and gash in head. After week in hospital-bleeding out three times, (and stitches in head due to fall against bathroom counter)cuffitus was controlled with Kenelog injection.(this after more radiation-scopes and upper GI). She was sent home only to return two weeks later in extreme pain, vomiting, not tolerating any food. Again, after MRI, upper GI, blood work-it all came down to extremely low levels of Magnesium, Potassium and iron. She will be anemic forever, but long story short-she should have blood-levels checked every 3 months and get infusions of deficient minerals and iron. She was told not to take iron pills as they are so harsh on pouch and system. Can anyone add to this experience or care for electrolytes?
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Art mom,

I was on iron infusions for four months after having my pouch. I have been anemic for years due to the UC and will probably always be due to the disease itself. The iron did help with my energy levels. I am sorry I cannot speak to the other issues your daughter is having. I certainly hope she is feeling better soon. I do know potassium loss can make you very dizzy, lightheaded and can cause you to pass out. She needs to be very careful here as low potassium can be dangerous.
Artmom,
So sorry that she is going through all of this...pouches can be very delicate and you need to make sure that she has enough suppliments and a very balanced diet to help her deal with mineral loss and dehydration...a diet rich in potatoes (not fried!), bananas and tomatoes helps with the potassium levels, sea salt on her food helps with the sodium and trace minerals and tons of herb (chopped parsley and cilantro on all of her foods) help a lot with the iron levels...if she likes and can eat some dried frutis like raisins and nuts that helps a lot too and the salt on the nuts is a good thing. All of those canned soups are good too (add rice to the soups for a healthy meal!)
Yes, Iron infustions help...a lot of us did them for years and still do when needed...pill form can give her the runs and complicate things so make sure that she tests them for a couple of days and that she takes them with food.
Homemade energy shakes can help a lot too and carrot juice is great ( throw in some parlsely or cilantro and celerly salt)...
Make sure that she keeps a diet diary for a while...it will help her to monitor her intake and output.
Sharon

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