Going into my 6th week and very sick (x-post)

I know that no one likes to hear negative stuff about surgery.  I am truly trying to be thankful.  I am thankful that I am alive and have my family.   But, I have been sooooo sick after surgery.  This Thursday will be my 6th week since surgery.  I have been into the hospital 3 times after surgery and afraid of the 4th because I am so sick now.  I cannot keep anything down, everything burns.   Even water.   I either lose it one end or the other (TMI), I know.   I am back on liquids again....pretty much baby food and I can hardly tolerate it.   DId any of you have a problem with dehydration?  I am TRYING SOOO HARD to get liquids in, but, I am so sick with basic water.    What did you guys do?    And yes, my doctors know and the surgeons told me last week that the surgery was fine (they did CT scan and endoscope), so they are now pretty much out of the picture.   Which, I don't think should be the case...not as sick as I am.   My gastro is involved and have to have an Ultrasound in the AM for such a high elevated liver panel.  My blood sugar and pressure is now very high.....so, I know that things aren't getting out of hand again.    HELP!!  I am at such a loss!!! Caroline

Caroline -

I'm so glad you are posting. I didn't want to say anything on the board because you hadn't posted it yourself. Hopefully, others will have some suggestions that might help.

Have you asked for a second opinion yet? If not, I would immediately. Like you, I have no idea what's wrong, but something is and has been since surgery. If you don't have one already, you might consider creating a chronicle of what's happened since surgery. What seems to trigger episodes, how much of what you can tolerate, how often you void (top/bottom), when, where and how intense the pain is. If they can't figure it out at Duke, what about going to UNC or another program?

Also, please see someone about the depression that you are experiencing. I know that anyone in your situation will experience depression, but I think that you have so much going on it might be reasonable to get some help with it.

I was sincere when I said that I'd be glad to pick you up and take you to any appointments you might have.

Please call if you want to talk, need an errand run or need to go to an appointment.

Warmly,

Barb

Caroline:      Let me say that I am quite sorry for all the troubles you are experiencing. I wish that there was something I could say or do to help. I don't understand what is happening and know you must feel frustrated and sick and tired of being sick all the time. Perhaps they will find something out once the ultrasound is done. I hope and pray things get better for you. No one deserves this and I know you went into this with the best of intentions and I am sorry that you have experienced problems.  Please keep us posted and we will send up some prayers that you get some relief soon.  Lisa

Caroline,
I'm so sorry to hear that you're having such a difficult time. I don't have any idea what is wrong, but obviously something is. I just want to encourage you to be an advocate for yourself. Don't give up until they find what's wrong and fix it.
You will certainly be in my thoughts and prayers.

Oh Caroline!  My heart just goes out to you in fellowship and prayer!  I also had a bad start with my surgery and I wasn't as reticent to share it as you have been.  The support and prayers of everyone here helped me out more than anyone can know.  Please never hesitate to share what is going on, good or bad.  Prayers make a huge difference and GROUP prayer works wonders!  Your sharing this burden will hopefully cut it in half for you, and may well help someone out who is now or will later go through the same thing.  Also right at this moment you are giving folks who are considering the self-pay route something serious to think about.  I would not want to have to pay for my post-op hospitalizations and treatments! I am keeping you in thought and prayer and hope that you will PM me if there is anything I can say or do for you during this time.  Never hesitate to reach out to me if I can be of help. (((((((((((Caroline))))))))))))))

Dear Caroline,

I am sorry you are having a hard time. You say your surgeon's  are out of the picture. They should be the one's in the forefront trying to help you! They didn't just sign on for a two hour surgery for goodnes sake! Call them again (and again****il some one listens. At least you do have  the Gasto helping you. I hope this all passes quickly.

Caroline,

I'm not sure I have much to add to the advice of what other have already said, but I WOULD be making a scene with my doctor who did the surgery and if need be, get your insurance company involved!  That doc signed on (as noted) for more than a couple hours of surgery.  I'm not sure I would WANT them touching or treating me at this point, but that's where the immediate responsibility should be.  If your insurance company realizes they are paying docs who drop their patients when post- care is needed, that doc might just fall off the insurance list, and I'll be your doctor doesn't want THAT to happen.  Perhaps your telling him you will be involving your insurance company to intervene on your behalf will get the doctor's attention immediately.  Money (and being on insurance co. approved list) speaks volumes!!!

What were you admitted for those 3 times and who admitted you? I'm not much of a water drinker either.  I do better with iced tea and Minute Main "Lite" Lemonade.  How about SF popsicles?  Once in a while I have coffee in the AM, and might try this. I read on the main forum yesterday from Allie (who's had a HORRIBLE experience and practically lives in the hospital... but with a problem her docs have had a hard time diagnosing)... she said one morning she was so tired of her Carnation Instant Breakfast, and thought she'd stir it into her coffee...and voila, a tasty new way to have her CIB... in the coffee. When I saw my NUT last week, she was more concerned about my fluid/water intake than my protein intake for now... so I've been really pushing liquids... mostly Iced Tea now.

I, too, will pray for you that things turn around for you soon.  Please stay in touch with us here so we can support you as we can! 

Caroline, I am so sorry you are sick I would get that surgeon of yours back in the picture, I really hope you find out what is going on and that you get better soon!!

(((((hugs)))))))))

Darcie

I cannot say too much that has not already been said.. except that you are in my prayers.  God bless you Caroline.  Have faith!

I will think of you in my prayers over this wonderful Thanksgiving Holiday.  I will think of you and your family and pray for your health and for you to be ok.  God knows what you are going through and if you let him, he will help you.  Just keep yourself in positive spirits.  That is half the battle I'm sure.   I also agree with Barb about the possibility of seeing a Psyc. for the depression.  It will consume you before you realize it.   Good Luck to you and Happy Thanksgiving  Connie