In the hospital for reversed RNY complications. Need help! Doctors not talking to each other.

The gist is that I had a very complicated RNY which was taken down as much as it could be, back in the Midwest. I now live in Seattle and do not have a bariatrics surgeon or a GI. I've begun to have serious problems just like before again (not able to keep down any food and almost no water for 3+ weeks, in the hospital almost 3 weeks, feeling like food is caught in my throat). Since I was admitted to the hospital through the ER, I've seen the bariatrics doc who wants me to have surgery but all the other docs have over ruled it. I don't know what's going on and i'm scared, because the same situation almost killed me before -- and that was when a bariatrics doc intervened! Story is below

Hi, I had my RNY done in 2003 at Spectrum Health in Grand Rapids, MI by Dr. Foote. I lost all the weight I wanted to, but unfortunately didn't stop. Had intractable vomiting and stomach pains and burning in my esophagus. I went in for my 2 year check up (2005) and was not doing well, still vomiting a lot, sometimes not able to keep water down, weighing around 100 lbs. They did an x-ray and CT scan.  Dr. Foote could see a small hiatal hernia and my intestines looked off to him on the test in a way he couldn't pin-point (but he did my surgery and had my pre-surgery films there, so I guess he had a baseline -- I guess I am "hard to image"). He had go into surgery that evening, from an afternoon appointment! He thought the intestinal stuff was probably nothing but had me sign a consent form for any need for surgery that came up while I was under. It was a good thing, too: when he opened me up, the hernia was not as small as it looked. My whole pouch was in my throat! He also had to do surgery on two (?) intusscussceptions. Major surgery on both my stomach and my intestines had to happen, they discovered when they opened me up.  My dad was told the surgery would take 1.5 hours and he'd be able to take me home. Instead, the surgery took four or five hours and I had to stay a week. I had to have another emergency revision surgery (I had moved to Chicago, but I kept seeing Dr. Foote) when I came back for my next check-in, this time just on the place where they attached the bypassed intestine.  When I kept having these problems, Dr. Foote referred me to the Mayo Clinic, because I needed specialized care (after a visit and a scope confirming that my pain was coming from strictures). For some reason my whole system was really rejecting the surgery.

I made an appointment at Mayo and began to look for a surgeon in Chicago, where I lived. Dr. Alverdy at UC supported me through trying to work with the revisions I had (with TPN, very restricted diet when I could eat, etc). He is a specialist and said he would be able to reverse if the time came. Unfortunately, the time came. I was very anemic and still vomiting a lot (dehydrated and malnourished, too -- plus I was sensitive to the TPN, which is what I needed to keep me going). Dr. Alverdy was very clear with me that reversing RNY is risky and rare and might not solve my problems They admitted me to the hospital the day before Thanksgiving and then did the surgery either on Christmas or the day before, 2006 -- they had been trying for days to get me to drink the surgery prep drink (multiple times a day!) and I just couldn't hold it down. 

The surgery with Dr. Alverdy was actually a big success. Over the next few months I stopped vomiting and wasn't in terrible abdominal pain any more. He is a wonderful doctor. Now, in 2013, since January I have had stomach pain and vomiting to the point that I got IV saline and phenergan at home. At first I thought it was a stomach flu, but I never had a fever and the symptoms never went away. Then I stopped being able to drink or swallow pills. Stuff feels *caught* in my throat -- I vomit because of that kind of choking feeling and not nausea a lot of the time. That is also exactly how it felt when I had the hiatal hernia. 

The problem is that I am in Seattle now, and Dr. Alverdy is very far away. I have been hospitalized and on TPN for nearly 3 weeks because I can't swallow and am vomiting -- I don't have a GI or Bariatric doc here yet, so they've just sent me ones from within the hospital system. Have seen two GI doctors, one bariatric surgeon, and a thoracic surgeon. The first GI doc just ordered tests and coordinating me seeing a specialist in "motility."  I had a barium swallow, many x-rays and a CT scan (without contrast, I am allergic). The bariatrics doctor, Dr. Ross MacMahon, was the first one I talked to after the CT scan results became available and he told me, calmly, that I was going to have to have my stomach taken out and that it was getting in the way of me healing. He said it wasn't a surgery he needed to perform himself, and that the Thoracic surgeons would be able to do it, and get me feeling better. I was not thrilled at losing my stomach, but I was told last EGD that only the pouch part was doing anything I still have the same limitations on eating as I did back then. (Plus, calling a pouch that was stapled back together with some tissue a "stomach" is really  a stretch -- I don't really have a stomach any more in the usual sense of the word.) 

Thoracic surgery has refused to do the operation. They think I've had too much surgery. (I have no idea what this means. Is there a lifetime limit and then you can't get any more, no matter what goes wrong? It's silly.) They want me to go home on TPN and see what happens, with a canadian drug, Domperidone on board.  That plan was interrupted by me getting even sicker. I have thrown up every day the past several days in the hospital, despite not eating anything. Once I threw up 6 times just from trying to take a pill. I am worse than when I came in. The only way I'm better is now I have aggressive TPN so it doesn't matter that I'm throwing up so much. The "motility expert" GI doctor brought on seems to have talked thoracic surgery out of more diagnostic studies. He keeps saying that because I am dependent on opiates for back/joint pain, that the tests would be a waste. He has some sort of program for people with paralyzed stomachs? When I took a dive for the worst this weekend, throwing up 6 times over an hour and only feeling ok if I don't drink water, I asked this GI doctor if we should try to get to the bottom of what's happening and see if it can be fixed -- or maybe he should pass me along to bariatrics, because this was getting more and more complicated, he said no. 

I've always been told, after my surgery, by both surgeons, to only let bariatric surgeons work on my bypass area -- or other surgeons but with a bariatric surgeon present. With a stomach as messed up as mine (two pouches stuck together, still has staples), even a simple procedure like putting a G tube in could be really complicated. Somebody who doesn't operate on people with bodies like ours all day could hurt me. My body, with several revisions and a taken down RNY, is even weirder than most other bariatric patients' bodies, I know. I had so many problems from surgery that I won't let anybody hurt me. When I asked to have the bariatrics person contacted again, saying I wasn't comfortable with a GI doctor puting in a tube, the GI doctor began shouting at me and my husband. My husband was taken aback. 

We are meeting with my primary care doctor this morning, so he can advocate for me. I am really scared. I've been in the hospital almost 3 weeks and am getting worse and nobody's doing anything about it (except for keeping me comfortable). I have been at home trying to ride this out with home IV's since January. The GI doctor's plan is to have me try his motility medication for 4 months and see what happens. How can I even go home like this? Also, the GI saw a hiatal hernia on the CT scan (or x ray or something) and told me about it, but decided it was too small to be causing my symptoms. I think that's possibly why the bariatrics doctor wanted them to operate? I almost died from this before, and I'm not sure what more I could be doing. Has anybody ever faced something like this -- needed a revision, but GI took over your case? And GI doesn't seem clued in to issues faced by people with gastric bypass, let alone somebody like me who has complications from a reversed gastric bypass. 

I am petrified. They are just letting me lay here and not doing anything to treat, diagnose or fix me. I don't think it is motility. I don't think having low motility is good, but I don't think it would suddenly produce such dramatic symptoms. I have had bad motility since my stomach nerves were cut to make my pouch in 2003. For ten years. I've only ever felt like this when I had a real problem.  What can I do? I can't leave the hospital; I'm not in stable enough condition to. I don't know what to do. 

You are in my prayers.   *hugs*

I strongly urge you to contact Dr. Ara Keshishian in CA. He's probably one of the world's best revision specialists. And I would contact him NOW.

Dr. Ara Keshishian, 1205 Garces Hwy  Delano, CA 93215

(661) 725-4847

 

^^^^What MsBatt said!  Call him now!

Yes, I am in COMPLETE AGREEMENT!!!!!  Call Dr. Keshishian............. Get on a PLANE TOADY, he will get you checked into either hospital (Delano or Glendale, outside of LA) as soon as you arrive.

He thrives on complicated cases, he is a VERY GOOD bariactics doc!!!!  He did my RNY to DS revision.

(800) 816-6647 is the toll free#

 

Good luck & keep us posted, PLEASE!!!!!

Wow I am sorry to hear this. I agree with the other ladies. Dr. Keshishian is an amazing Surgeon. A true innovator.

Best,

Whitney 

From all I have heard here, I agree with the above. Get the best in messed up bariatric bodies to do what is best for you. You need the best!

I agree - I'm seeing my internist on Thursday and asking that my doc support me (recommendations to insurance, etc) for having surgery with Dr. Keshishian.  I've got horrible dumping and hypoglycemia and think it's time to act before I run out of things I can eat!

You are in my prayers.  Please keep us posted.  Hugs, Barb

Thanks, everyone, for helpful and supportive responses. I have been in the hospital 3 weeks now and am getting back my strength on TPN. I have met with a bariatrics doctor (McMahon) and that put me at ease. I have gastroparesis, according to the team, and they haven't fully decided what to do about it yet. There is hope that I can avoid surgery with a stomach stiimulating drug available only outside the US, domperidone. It hasn't arrived yet, so I don't know if it works and can't leave. Otherwise, a G tube, GJ tube or J tube is called for. Possibly also completely removing my stomach. 

I am satisfied with this. Does it sound ok? At very least, I need to be in the hospital until I'm healthy enough to travel if somethig else is really wrong. I'm very weak right now from weeks of not eating.