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Wasting away, please advice needed

Im a 55 year old female, I have lived with Crohn's for 20 plus years and done fairly well, A few resections, every med out there but all and all have lived a happy live with my very understanding and loving family. Things have gotten so bad this past year as i've developed a crippling problem with low potassium, long story short Ive been in the hospital 15 times in the last 2 years just to replace very low levels of potassium. I take 40 plus pills a day of potassium but it just doesnt seem to do anything. Ive had to have a port a cat put into my arm for access for the the potassium. It is a nightmare. I've dropped 60 pounds in the last 2 years and am now under 100, My Gastro FINALLY seems to think he knows what my problem is which is a 2 strictures in the terimanal Illium, and wants to do yet another surgery. My problem is "he thinks" what if he is wrong, what if I have another resection, and I still have the low potassium problem. I'm getting ready to welcome my first grand child in Sept and want so bad to be around to at least see my pride and joy but I'm really wondering if Im going to make it to the big day. Please anyone have any problems like this, I would be greatful for the feedback. I just want to be able to enjoy a few more years but if they r going to be like this I don't know if I can do another year like the last 2. Thanks friends
 

my little penguin

Moderator
Staff member
Have you tried elemental formula ?
Elecare or neocate or e028 splash are all elemental meaning they are amino acid based.
They only required the first few inches of the small bowel to be healthy so absorption is better than pills.

Not saying it will fix it but may be worth asking your Gi about
At least it will add weight.

You can get your insurance to pay for the formula through your durable equipment clause and a script from your Gi.
You can also order it on your own direct from the company.
 

nogutsnoglory

Moderator
I am so sorry you are suffering endlessly. Have you seen a GI who specializes in Short Bowel Syndrome? I don't understand why your doctor allowed you to drop so much weight without intervening. I agree you likely need a specialized mail order nutritional formula.

What foods are you able to tolerate? Can you incorporate healthy fats?
 
this is has been going on for about a year now, as far as not absorbing "electrolights" as they say, but I cont u ask why? Why is this just happenening now? I live in Nevada and have been told that this is the state where the Dr's go that get jobs anywhere else. I'm trying to remedy my malnourishment problem now but will be moving soon hopfully. LOL My daughter is NP and really gets upset with me for putting up with what I put up with, but I do everything they tell me to do, I have a home health nurse that comes by once a week just to draw for potassium and if its lower than 2.7 they admit me, hook up to my port cat and there I lay for another 2 days till two weeks later when it happens again. To anyone suffering from this terrible disease the most important part (to me) is to keep my sanity because I could so easily go into such a deep depression. I drink a lot of Ensure, I can eat Chicken and potatoes pretty easily, but the whole situation was made worse when I met with a quake of a surgeon who refussed to try a colonoscopy balloon treatment on my diseased intestine, his words were "that is a freakin pain in the ass procedure" Really! I'm crying as i'm writting this just because i have not really had a chance to really process the whole appointment. thanks to all of you for any feedback
 

my little penguin

Moderator
Staff member
Ensure is whole proteins so it needs more of the digestive track to be healthy to work its magic.
The elemental formulas and semi elementals do not require as much to be healthy for your body to absorb it.
 
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