High output, port, fluids, low magnesium. Am I the only one?

[countrycoffeehouse]

After spending 36 days in a hospital due to electrolyte issues. Low magnesium and low potassium. Due to high output. I was sent home with an acessed port. I run IV fluids and magnesium 2 times a week. My home nurse stops by once a week and takes my port tubing /needle out and starts a new one. She also does labs. My magnesium was holding at a low low normal for a couple of months. But now in the last month it's dropped a lot. From 1.8 to 1.3 and that's with running IV magnesium .. My body will not absorb it..even without drinking very much orally I fill the large ileostomy bag with yellow water stuff every 90 min? The IV bag is about 1100 ml and my large ostomy holds 800.. I'm still struggling with hydration and the feeling of crap in general due to low magnesium. I've never met anyone like me? I've tried every med and home remedy to slow output.. So I don't need advice for that.. If it wasn't for home IV fluids I'd be back in the hospital ..

 

[nogutsnoglory]

Are you on tincture of opium for high output? I also have issues with dehydration and almost needed a port but they released me with lots of meds. On top of the IV fluids can you have coconut water, Gatorade, bananas and salty foods? The more you take in the more you force your body to absorb. Also maybe you need to alter your diet to slow output and eat more peanut butter, rice, marshmallows etc.

 

[Gwen]

I too have the same issues. I do IV Fluids every 4 to 6 days, I have a port as well. I have been doing this for almost 2 years. It is the only way that I can combat the dehydration from my ileostomy. I take tincture of opium and have altered my diet but I still can only go about 4 to 6 days without requiring fluids. On the positive side as long as I can get the fluids that I need I feel much better. Hang in there.

 

[countrycoffeehouse]

Yes I have tried Tincture of Opium.. the highest dose possible. And it worked for a few weeks, yes I have tried all the foods you mentioned.. and yes they helped for a few weeks.. but for the last 3 months nothing has helped.. I ate 2 huge bags of marshmallows, banana, and a cup of rice.. and ALL if it was passed through the stoma at high speed within an hour.. as water.. I know it came through because the rice was not digested.. I am running 3 bags of fluids a 24 hr period.. I am tied to a pole! ha ha and I am not dancing! I am not processing any food.. and to say just add more to get more out of it is kinda nuts for me.. the more I drink the more my body pushes.. I would be dead by now if it wasn't for fluids and my vitamix..I eat really healthy and blend mango's banana, spinach and apple, and coconut milk and coconut water. I know the foods to avoid.. I am not knew to this disease.. I have been very sick for 7 years. I just have never met anyone like me.. I am online a lot and I seem to be the off person..

 

[bigtruck]

Hi there I'm sorry to hear of the trouble your having I also had this problem when I had my loop ileostomy even though I still have a lot of small bowel, in the end I had to have it reversed, I now have a loop colostomy. I hope they can find a solution for you soon.

 

[bigtruck]

Just a thought, are you taking lansoperazole or any ppi for ant acid etc?

 

[nogutsnoglory]

Gosh that's terrible. I really don't know, I had major diarrhea before surgery and after but it sounds like you are much worse off. I'm sorry I can barely control my own so I am not sure how else to advise. I hope in time it will get better.