Complications - HELP!

Hello! I am very desperate for answers so if anyone has had a similar experience or knows where to direct me then I would greatly appreciate it...

My husband had gastric bypass surgery in March of 2013. Since then, he has has complication after complication. 

First he had to get his gallbladder removed because of gall stones (summer 2013).

Then they found he had developed Kidney cancer and had to get a portion of his Kidney removed (fall 2013).

He started having trouble eating and keeping things down. Also extreme pain in intestines, vomiting, diarrhea... this went on for a while until it got so bad and they discovered an ulcer on his intestine where the sutures were made. Had surgery to remove that chunk of intestine and reattach (winter 2014).

Good for a while, but same symptoms acted up again... had a huge scare in fall 2015. He began feeling very weak and dizzy all the time. Sunken eyes, extreme weight loss. Muscle weakness and pain. We were walking and all of a sudden he passed out in the street. Doctors don't give us any answers.

He gets some hard medication but since the fall, things go downhill... he never sleeps. He constantly is twitching and gets into his REM cycle within seconds, so he is moving around and waking up constantly. He falls asleep while standing up for a few seconds and he says it feels like his mind slips. He is soo weak and tired and can barely get out of bed most days. He has moments throughout the day where he gets really shaky and sweaty and dizzy and he needs to lie down until it passes...

He gets another surgery to remove ANOTHER ulcer in his intestine (fall 2016).

Things are worsening... he has lost way too much weight and he has absolutely no fat or muscle tone. He can only eat very small amounts at a time and he can't really eat much of anything. Meat doesn't go through easily and he eats mostly jogurt because it's the only thing that goes through without an issue...

Then dec. 2016, he has a seizure and falls to the ground. He goes in an ambulance to the hospital and they did a few tests. Send him home without help or answers.

It is now Feb. 2017 and he hasn't been working since the summer. I begged him to try to get into a therapy center where maybe they can monitor him and figure something out. But I really need an answer and some help. We have a 2 year old and 3 month old, and as you can imagine it is very difficult for us to see my husband like this and it is beyond stressful for myself.

If anyone has suggestions or has had a similar experience, please comment! thank you!

Have they done a complete blood panel on him lately?  I'm suspecting some form of malnourishment. Here is a list of labs to be drawn if it's been a while for those of us who malabsorb (RNY and DS).  Many docs skip some and it does us a disservice to do so.  There should be a minimal of a dozen or more vials of blood drawn.

 Not to be construed as medical advice, this list includes labs we have had performed as gastric bypass patients

 * 10231 - comprehensive metabolic profile (sodium, potassium, chloride, glucose,BUN, creatinine, calcium, total protein, albumin, total bilirubin, alkaline phosphatase, aspartate aminotransferase)

* 84134 - pre-albumin

* 7600 - lipid profile (cholesterol, HDL, LDL, triglycerides, chol/HDL ratio)

* 10256 - (hep panel, includes ALT (SPGT) & GGT)

* 593 - LDH

* 718 - phosphorous - inorganic

* 83735 - magnesium

* 905 - uric acid

*7444 - thyroid panel (T3U, T4, FTI, TSH)

* 1759 - hemogram with platelets

* 7573 - iron, TIBC, % sat

* 457 - ferritin

* 945 - zinc

* 921 - vitamin A

* 680 - D (25-hydroxy)

* 4052 - vitamin B-1 (thiamin)

* 84207 - vitamin B-6 (Pyridoxine)

* 7065 - B-12 & folate

* 83970 - serum intact PTH

*31789 - homocysteine, cardio  

* 83921 - MMA 

* 367 - cortisol

* 84255 - selenium

For diabetics: *496 - HEMOGLOBIN A1C

DIAGNOSIS CODES:
269.2 hypovitaminosis

244.9 hypothryoidism

268 vitamin D deficiency

250.0 diabetes

401.9 hypertension

276.9 electrolyte and fluid disorders

579.8 calcium malabsorption

579.8 intestinal malabsorption

272.0 hypercholesterolemia

275.40 calcium deficiency

266.2 cyanocobalamin deficiency

280.9 iron-deficiency anemia

269.3 zinc deficiency

281.0 pernicious anemia

281.2 folate deficiency anemia

281.1 other B12 deficiency anemia

285.9 anemia, unspecified  

 

By preference, do not use *579.3 surgical malabsorption*

This is exactly where I would start as well! 

Malnourishment is the first thing I thought of as well. No health professionals have said anything about this? I think it's critically important that you continue seeking medical help until you get some answers and a plan of action. Good luck and best wishes.

The other posters are correct.  Get blood tests ASAP.  Are you near a major university hospital that does research and has a bariatric center?  This is a serious situation that requires a step up from local doctors, possibly.

Nutrition is important after the bypass and the duodenal switch for a number of reasons.  One that is poorly explained (or never explained) to patients is that it can make the bowels the consistency of wet tissue paper. basically, so it becomes exceptionally easy to damage them.

Seizures are also caused by glucose and neurotransmitter dysregulation in the brain.  Very low carb diets (which are also good for the bypass) tend to help this.  If he is eating lots of sugary yogurt that is not going to help the seizures, either.  The brain is highly sensitive to nutrition.

How old is he?  If he's under 50 especially it's much more likely he is not getting the protein and fat he needs for his brain and body to work.  Without protein and fat we will die.  If it's severe enough he may need TPN.  He should also see a neurologist versed in degenerative disorders to rule those out after his nutrition has stabilized.

I'm sorry you are going through this. What country are you in? Usually when someone has a seizure, they start them on anti seizure medications. Have they done that? It sounds like he needs a total work up. 

Wow thank you everyone for the responses! I know he has gotten blood work done, numerous times, but everything always comes back normal which I do not understand. Just looking at him you can see something is wrong... I do not know to what extent the blood work has been done so I will make sure to pass this on to him and push the doctors to do more tests.

Unfortunately I do not live in the states, I live in Austria but I still dont understand the language enough to talk about this on the German forums. I came to this site because I really dont know where else to go.

I will definitely look into a University, maybe there is a medical one in Austria but I dont know for sure. What I do know is that the doctors in his hospital dont seem to care at all and dont seem interested in finding an answer. He has been to 4 different hospitals already and everyone sends him home without an answer.

After his seizure they did give him anti seizure meds but he decided not to take them because it was a one time thing? I dont know... he said there was really terrible side effects and he didnt want to get worse than he already is...

Ive read some stuff about neurological complications after the surgery but his symptoms dont seem to fit one thing specifically. I read that it could have to do with Vitamin B1 (thiamine) deficiency in particular, and he already gets B12 infusions monthly.

I did think at the beginning that it could be diabetes because he would get so weak and shaky and dizzy, then eat something and it would pass. But apparently they tested him for that too and it was a negative. 

Im very interested in looking to the University route now. Thank you all

 

I do not know much about Austria, sadly.  One option is writing a big research facility here, like the University of Chicago bariatric department, and explain what is going on and ask if there is anyone they might suggest.  I'm not sure where the best programs in Europe are, unfortunately, or the best medical schools.

Whatever happens, viel Glück. :)

I am very sorry to hear about your husbands suffering and I can understand how frustrating and difficult it is to be living in a foreign country and needing medical advice but being unable to communicate properly.

I lived in Belgium for the past 15 years and though I have just recently moved to Japan, I am still in contact with my Bariatric Center in Brussels where I had 5 abdominal surgeries, including Gastric Bypass.  In fact I will be returning there next month for some follow up exams and scans that I can not do here in Japan due to language barriers as well as inexperience in handling Bariatric patients.  I am happy to share my Belgian center information with you, they do speak English and may be able to help you find someone in Austria with Bariatric experience.  

Send me a PM and I will forward you what info I can if that helps any.  Wishing you all the best -

Have they looked in to putting in a TPN? To help with nutrition? How many protein shakes is he drinking a day?

I agree with everyone else- start with labs. Have they talked about revising, or reversing the RNY? Unfortunately-cancer is not is not a complication of the RNY- but it is a really terrible disease. Could it be possible that the treatments he got during his cancer treatments have had a residual effect?

As for seizure meds...I'd highly recommend your husband find anti-seziure meds that work for him if they are being prescribed. Seizures are not just "passing out". I have met quite a few people that have had traumatic brain injuries because they fell out during a seizure and hit their heads....and/or they just had neurological damage from constant seizures.

GOOD LUCK! I pray your husband is around to see your babies grow old and have children of their own.