14 month update: If it's not one thing it's another

Well, I am still struggling maintaining my weight. I'm about 14 months out now and have dropped about 150lbs total. My doctor is still concerned because I have no excess fat, but I seem to be maintaining my weight around 133-135 at least. Problem is, the cost of maintaining this weight is eating a TON. I think all I do is eat. I had read about some of the DS patients who had to eat around 3,000 a day just to maintain and never thought i'd be one of them, but apparently I am. I get bored without the carb food. Most snack foods are so high in carbs that it is ridiculous. I miss mindlessly munching on things like crackers or goldfish. But I don't miss the 150lbs.

Carbs still cause me some problems, but anymore anything I eat is causing problems. I had to go get a STAT CT done yesterday but the results didn't indicate I needed to be admitted into the ER. I have been having horrible pain about midway between the bottom of my sternum and my belly button. It gets worse as I eat/drink yet is always there. I don't know if the scan indicated anything other than not having to have emergency surgery until tomorrow.  I had just thought it was gas, but even my gas relief pills and a bunch of other remedies don't work for that.  

My iron never recovered after I had my gallbladder out in May so I finally went and had fereheme infusions last week and then again on Monday. They made me sick to my stomach but at least I can make it through a day without feeling like I am going to fall over. And speaking of falling over the stitches on my brow line are healing nicely. Note to everyone out there: DO NOT go a long time without eating when your iron is super low, you may collapse and hit your head on the bathtub and get a concussion. 

Until next time - K

You have my sympathies.  Sounds like a hell of a road you have been on.   Before my surgery I would have thought that having to eat 3K calories per day wouldn't suck, but now I know it is its own form of hell.

There was a guy in the local DS support group that was in the same boat, but his surgeon asked him to add some carbs to his diet.  He very happily added beer.  Perhaps you could find something similar that you love. 

Good Luck!

Oh yeah beer is yummy, I've drank it a few times. I added popcorn and some low carb vegetables. I am almost at 200g of carbs a day but they cause my stomach havoc - but not worse than everything else! So I eat what I enjoy and deal with the gas. Just wish I knew what was causing this sharp pain. Hopefully i'll know more on Friday. 

I've wanted to make it to the group in Bellevue, but you know - there is always something going on. :)

Sounds like a lot to deal with. Sorry you are going through this. I hope they get to the bottom of the pain - must be hard to eat at all when you know you are going to be uncomfortable because of it.

Has you Doctor tried something like the enzyme creon to increase your absorption?  It might let you cut back on some of the eating...  Just a thought.

Pete