What would you do? Request the feeding tube or no?

Posted this on the FB page as well but wanted to post it here too

 Need some real help (and thank you who sent me bday wishes my bday is today) I was in the hospital for 6 days with nausea and abdominal pain and got released on Sunday. I was back in the ER all night last night as the GI Dr on call told me to come in because I was having the same episodes of not being able to keep much down. I have had almost every test done to man kind and they cant find anything besides a "defect" where my incision is in my belly button and esophagus spasms for my abdomen hurting so bad. While its good they cant find a reason it doesnt help the pain and I wish they could find something. I think they are running out of things to do with me. Anyhow while I was in the hospital I was getting all my anti nausea meds through my IV which was making me be able to eat and drink. Once that stopped and I went home I started getting that full sensation and vomiting everything up. I have anti nausea meds at home so thats not the problem but when I take them they dont stay down. I also have a script that I got last night for suppositories so I am going to get that filled and try those. I know my hospital doesnt know crap about the DS and I try to bring as much info but they kept telling me they would like to put a feeding tube in me but since my stomach is so small it would be really hard. I have an appointment with my liver specialist on Friday and they told me to tell him if I was still in pain and not keeping anything down. Does anyone have any ideas or suggestions? I honestly dont know what to do anymore.

zofran comes in a sublingual form. Have you tried that instead of the pills?

 I have not tried that. I cant get in touch with my PCP or see him today and they keep ref me back to the ER where I really dont want to go. 

 Are they sure the nausea & vomiting isn't from chronic dehydration?  Was your potassium low again?  How many ounces of fluids are you getting in (that stay down) approximately...  Dehydration can cause all of the symptoms you are having (nausea, vomiting, muscle spasms which cause pain, ect).

Yes the nausea and vomiting could be from just being dehydrated. They have seemed to rule out all the big things that could be wrong with my like my gallbladder, obstruction, stricture, ulcer etc so dont know why I am getting the nausea, vomitting and weak feeling. Everytime I go in though I am dehydrated and need fluids except one time I had fluids the night before so I wasnt dehydrated again at that point.

Since surgery I have been mainly drinking (unsweet****d tea and I dont drink it ice cold or it bothers me. I have tried a bunch of other drinks but they just dont taste right to me. I can sometimes keep down a few sips which I know isnt enough. With food I do get hungry and eat very slow and chew very well and then I get bloated and the nausea becomes really bad and it comes back up. My acid reflux is also hurting really bad with the burning and they said while I was in the hospital they tried adding Nexium to my Protonix 2x a day but it didnt do anything. All they can confirm right now is that I have severe GERD/Reflux, esophagus spasms, borderline anemia and unknown abdominal pain.

They took blood but they didnt run it because they ran it the day before when they let me out of the hospital and all my numbers were within the ranges. So I am not sure if my Potassium was low again or not. 

Dr E doesnt have any available appointments or I would have my husband take me up there. I dont know if its worth going to one of his hospitals and hoping to see him but at least they know what the DS is. The only bad part would be that I would be far from home and my husband would have to take off work and stay at a hotel. I am assuming since Dr E does the DS at 2 hospitals there they in general (as in the staff) should know what the DS is correct? That is one of the major issues I am having here is they dont know what it is and dont understand it no matter how much info and diagrams I give them. They keep telling me its the old surgery they dont do anymore because of issues like this with malabsorption. 

I can go to my hospital again and ask to be admitted and I am sure they would give me the feeding tube as they talked about but I dont know if that is what I need or not. 

 It doesn't make sense to stick a feeding tube down your throat when you are heaving, what good would that do.
You need to try the suppository and see if that helps, it should. And if tiny sips stay down then I would say keep taking tiny sips. Anything is better then nothing.

It doesn't make sense to eat solids if it won't stay down. 

Also, if you really can not eat and get any nourishment down I don't understand why they would keep sending you home  and not give you a pick-line so you can get what you need.

 When I was in the hospital getting IV Fluids and meds via IV I was able to have food stay down. They were going to put a feeding tube down because I wasnt able to eat/drink enough on my own. After being there a while and on IV meds/fluids/anti nausea meds I was able to eat and drink. When they sent me home they sent me home with antibiotics and it all started again.

I know they have feeding tubes that go in like an IV but they said they try not to do them because they cause so many infections. If anything was going to happen it was going to be through my nose. I am not sure what the difference bwn all the methods are of getting nutrition in are. 

 It really, really sounds to me like dehydration and low potassium (from the vomiting and/or diarrhea) are playing a HUGE role here.  It is a vicious cycle with that, they feed off one another.  If you are nauseated, you don't drink/eat, which causes you to become more nauseated, which can lead to vomiting, which leads to depleted Potassium, which causes more nausea, ad nausem.  I ESPECIALLY think this is the case when you say you do fine eating/drinking in the hospital after some time on fluids and meds to regulate the Potassium and nausea.  

The GRED is also playing a role, no doubt.  That can cause wicked nausea and vomiting.  You need to work with your PCP on trying EVERY medication out there for this.  Keep trying them until you find one that works, even just a little, then bump the dose until your symptoms are resolved.  There are SO many meds out there, and each person will have their "magic" one or combo.  You just have to keep trying.  

Is the tea caffeinated?  I would try switching to a white, decaf tea if so.  The caffeine and dark color are working against you right now.  I also would abandon solids for now.  Focus on any source of fluids, protein and calories.  (All sugar free of course) jello, pudding, yogurt, applesauce, broths, thin soups (wonton, egg drop, minestrone, ect), protein shakes, popsicles, ect.  

I would avoid TPN, they are right on it risking infection.  I'd go with an NG tube or maybe even a J-tube if you HAVE to go that route.

And yes, call Dr. E.  Demand to speak with him personally, keep calling until you speak with him.  Or have your hubby do it until he comes on the line.  Try calling after hours, many times, it will go right to his cell phone :)  

 I think you are totally right on this and it is a vicious cycle. I had my mom call Dr E's office because he is the only person who seems to get the DS and I dont want just anyone messing around with my body. She explained the situation and they had an opening tomorrow so I am going. I am taking stuff with me so if he wants to admit me he can either at one of his hospitals or one near me and give them orders not sure if that will work. However I feel I need to see him especially since the GI Drs here are pushing me to revise surgery which I totally dont want and arent listening to me about the type of surgery I had. 

And thats the kicker if I was able to stay on IV fluids and meds I can eat and drink normally. This has happened at every ER trip and they dont get it when they give me meds and then I can drink and say I thought you couldnt keep anything down. I went in and got some fluids today and they wanted to admit me but due to having an appointment with Dr E and him knowing what is best I am going to see him tomorrow before I do anything else. At least I got hydrated tonight and did get a script for sublingual Zofran. 

My GERD/Reflux is really bad. I am not sure which ones I havent tried but I will ask him tomorrow if there is another he wants me to try. When I was in the hospital they said they added Nexium and a few other things that should have controlled all the acid but they couldnt control the actual reflux but I was still getting major heartburn. Right now I am on Protonix 2x a day plus OTC breakthrough meds and it has worked better than other meds and thats why my PCP has been wondering if its worth changing or not. 

The tea I drink at home is not caffeinated, but I didnt even think to check what Mcdonalds unsweet tea is. I have started to drink my own tea more and more to save money but if I am out and dont have anything with me I do go to Mcdonalds and get unsweet tea. I def. need more options for drinks including things to mix protein with because nothing tastes good to me anymore. 

I am looking forward to seeing what Dr E has to say about all this. He is the expert and while I would rather have all my care closer to home I will do what I need to do for my health. I just want the Drs here to be able to listen to me and treat me when I cant make the 2 plus hour one way drive and am in pain. 

Thanks for all your help! 

Is it caffienated tea?? That will dehydrate you, its a diuretic.