Hello Everyone! - Still Miserable

Sorry to be the negative post here................but it is reality.  I am still not out of the woods.  Despite losing 97 pounds then hitting a brick wall stall.....I still have lots of complications and misery going on.  My surgeon's advice is "The body will heal itself." So, essentially he has written me off - (I feel).  Belly pain right upper quadrant persists (CT is negative so he has no clue what to do).  Innards rumble like the battlefields of the Civil War.  Drinking Carafate like a wino locked in a Boone's Farm distillery overnight.  Can't keep much down.  Sleeve is irritated, losing hair, depressed.....it is a wonderful picture. 

Recap for people who don't know my story:

DS on April 19, four leaks, clogged drain, abcesses, another "fluid collection" that required a drain through my ribs......2 weeks in the hospital for TPN, blood and hydration...then a hernia repair because he didn't sew the spot where he pulled my stomach remnant through the abdominal wall, (3rd surgery) then a lovely bout with kidney stones (requiring retrieval)........all this while trying to work 12 hour shifts in between.  Anyway...now I am weak and tired and at the end of the rope.  Praying to GOD more and more.  Need support from you guys.  My appetitie is there, but my little irritated sleeve rejects almost everything.......I am scared.  My hair is so thin, I look like a dog with the mange.

Now I am rambling.
Labs are still decent, though....thank GOD!
Just booked a hematology appointment to help follow my iron and labs.
Surgeon is NO HELP!!!!
HELP!!!!

Holy Cow!!  Who is your surgeon?  Can you get all your records together and go to another DS surgeon?

Are you able to drink protein shakes? Are you getting in all your liquids?

Ok, if it were me, I would get everything together and call Dr. Keshishian in California.  Will you insurance cover 2nd opinions?

This has gone on wayyyy to long.

I don't know what else to advise.

Michele

Do you have your gallbladder?  If so, have you had an ultrasound looking for stones or sludge?  If you have and it was normal, did you get a follow-up hepatobiliary (HIDA) scan?  The HIDA scan assesses how well your gallbladder contracts.  It can look pretty as a picture on an ultrasound and be deader than a doornail on a HIDA scan.  CT scans are the worst possible imaging studies for gallbladders -- even ultrasounds are better and tons cheaper.  I would proceed with a HIDA scan if you have a gallbladder and haven't had this test done. 

One more thought -- Carafate is like wallpaper glue.  it's sticky as ever and could be causing more problems than it's solving by plugging your already small sleeve. 

Hope this helps and hope you start feeling better!

Who was your surgeon?

Sounds like you have had and are having a time of it.  Start taking zinc or biotin for the hair...actually your hair will come back but why not help it to get there faster? 

Are you on any kind of acid reducer?  If your surgeon isn't helping anymore, try an internist...a good one.  Keep drinking and taking your vitamins...try eating small meals...maybe even just a bite or two and then wait.  Let that settle and then try some more.  Do it very slowly and see if that helps.

Seriously, try a good internist and see if they can help.  Sometimes the best cutters aren't the best at helping us afterwards. 

B

Sounds like you've been through the wringer.

I'm so sorry about all that is going on with you.
Who is your surgeon? It's hard to believe he would give up on you just like that. There has got to be something that can be done for you. I would be knocking down the doctors door and demand different meds or something.

No wonder you are losing hair if nothing will stay down in your stomach.

Hopefully you are taking a acid reducer because not using one can really make you nauseous. Also make sure you are drinking enough fluids.

I just wanted to wish you much luck and improvement soon.

ANSWERS:

NO gall bladder
I have tried reglan, zofran, levsin, symax, and phenergan for the nausea.
I take pepcid daily. - sometimes an extra tablet when I HOPE it will help.
I usually take a few bites, something gets stuck, try to wash down, projectile vomit - then slime comes up, then I can eat a little more. The stomach feels like a lot of acid - so TUMS (calcium carbonate - I make oxalate kidney stones - not calcium), then the stomach spasms and causes pain. Struggling with enough protein intake, but getting better. I know I need to force myself - it is difficult. Closest DS surgeon is 2 hours away....that's my next step. Insurance is limited. or a phone consult with Keshishian (wife called his office when I was in the hospital - but never spoke to him directly). I was hoping all this would resolve.

Pepcid does zilch for me.  Have you tried another acid reducer?  Prilosec or the generic? Nexium or Protonix?

Stomach acid will present as pain and nausea on a new stomach.

If it were me I would add the Prilosec to what you are already taking.  Pepcid works differently than a PPI, well you know all that, I forget you are a nurse...

I hope you get some answers SOON,

Michele

Ohhhh gee, hoping your on the mend soon....what a mess eh?  God Bless and stay strong!!

Big cyber hug to you!  You aren't rambling!  If you can't ramble on this board, who can you turn to!  Hope someone chimes in with good workable advice for you!

Yikes! Sounds like you are having a heck of a time. In one sense, your surgeon is right, you have been through a LOT and need time to heal. But that doesn't make you feel better NOW, and you need some relief now so that you can heal. You may indeed need to see another DS doctor to get another take on your situation.

Upper right quadrant pain, since you have no gallbladder, could still be some kind of blockage in your bile duct. I had that happen to me four years ago. Really painful. Sludge in my bile duct. They ended up giving me Hyoscyamine to help relax the duct so that the sludge can move on through. That and some ibuprofen to help with inflammation... which might not be good for your stomach at the moment. Of course, that may not be it. 

It seems that your stomach needs a break. What does go down easy? Maybe concentrate on that for a few days to give it a chance to recover? 

I wouldn't worry about your hair. Your body has been through so much stress that hair loss is inevitable. It will eventually grow back when you are recovered.