My Nissan Fundoplication experience - gas bloat, dumping syndrome, hypersensitivity

My Nissan Fundoplication experience - gas bloat, dumping syndrome, hypersensitivity

I'm four months into recovery from Nissan fundoplication surgery and I'm writing this so others may benefit from my experience and mistakes. I was particularly unprepared for the surgery and had multiple difficult issues afterward.

BEFORE SURGERY:
My surgeon seemed excited for the chance to do the surgery. I didn't know it then but that's a reason to go to another surgeon. You want someone who's done a lot of these because a small mistake can cost you big. If I could do it over again I would get it done at a large teaching hospital. Traveling is inconvenient, but not as inconvenient as a problem surgery.

AFTER SURGERY:
I had so many problem symptoms that it was hard to pick out what all was going on. I had multiple syndromes that can happen after this surgery. The four months since have been like peeling an onion…choosing a syndrome to work on, spending weeks solving it, then seeing what symptoms are left and choosing what to work on next.

Gas bloat syndrome:
Finding myself in ER three days after surgery getting my stomach pumped because of gas bloat convinced me that was the first problem to solve. I didn't realize it but I was one of those people who had learned to swallow saliva frequently as a response to acid reflux. When I did that after surgery each time I swallowed it pumped a little bubble of air in to my stomach. The hard part was I didn't have conscious control of it so I couldn't just stop by thinking about it.
The immediate solution was to hold my nose every time I swallowed because that's how I pulled in the bubble of air. It was uncomfortable but it worked and kept me out of the ER. After a week or so I found I was swallowing less. After about six weeks my lower G.I. got efficient enough at moving air that the gas bloat syndrome disappeared.

Dumping syndrome:
It felt to me after the gas bloat syndrome was gone that my stomach was moving things through very quickly. I got a gastric emptying test which confirmed my stomach was moving things out about twice the rate as normal. The biggest problem that caused was that sometimes delayed release medications would be moved through my G.I. tract before they were finished with their delayed release. So sometimes they would lose their efficacy earlier in the day than expected. I still have dumping syndrome, but I'm told it should disappear sometime in the next few months.

Stomach hypersensitivity:
During the dumping syndrome I think my surgeon and I had me try too many meds in rapid succession. My stomach was already insulted by the surgery and the first week of round-the-clock ibuprofen. Then we tried a few other meds, including Reglan, and my stomach reached a point where it just rebelled. Anytime I took a tablet or capsule of any med, as soon as it would hit my tender stomach lining I would be rewarded with six hours of nausea. That included antinausea meds. The only exception was that I could sneak in granules from a PPI capsule that I opened up.
So I simply had to quit almost all meds and wait for my stomach to begin to recover. It was a week or two before I could begin introducing oral meds again. From then on I took as few meds as possible.
Skip ahead two months… I have a gastroenterologist who theorizes it may be a form of visceral hypersensitivity. I was actually aware of, and could feel my stomach lining all the time. My normal gastric acid felt like intense burning every day. They ramped me up on amitriptyline, a tricyclic antidepressant that is also a nerve regulator used for visceral hypersensitivity. I started at half a 25 mg tablet and ramped up to 50 mg over a few weeks. It reduced the burning but my stomach still felt beat up. So I also started treating it as if I had gastritis. I modified my diet and started using supplements that I found described in this forum for treating gastritis. Slowly my stomach lining started to feel better. (I had already had a test and knew I did not have an H. Pilori infection.)

Hypersensitivity to medication:
After the surgery I found I got multiple "rare "side effects from all acid reducing medications (PPIs and H2 blockers). They hadn't bothered me so much before the surgery. H2 blockers bothered me less, but were also less effective. But if I didn't take them my stomach would burn up every day. So I was stuck taking medications that made me sick until I could finally stop them four months later. Side effects included anxiety, depression, nerve pain in back, flu like symptoms, shortness of breath, tinnitus and just feeling bad all over. I had my vitamin and mineral levels checked and the only thing I was low on was vitamin D. So it wasn't a simple nutritional deficiency.

So now I'm just starting to feel better because I got to stop taking the meds that were making me sick. I'm taking stock of what symptoms remain to see what to work on next. I think it's stamina because I don't seem to have any after being practically housebound for four months. Eventually I also need to taper down on amitriptyline. I haven't worked since the surgery and need to get back to my job before short-term disability runs out.

I lost 45 lbs dealing with those issues. I had no idea that a person could go six weeks on a clear liquid diet and still get up and walk around.

Post Edited (DennisinNY) : 12/5/2016 3:50:43 PM (GMT-7)

dennis I really feel for you I replied to your other post:

i am also 4 months post op nissen, you need to get a glucose monitor I have the contour next ez monitor, the strips are from contour next and they are fairly cheap on amazon, 50 strips for $13, I highly recommend you get one, I guarantee your sugars are going high then low.

you need to be careful because you do not want to get too low, I guarantee you your getting hypoglycemia attacks after eating. im assuming you get these attacks about 30 minutes or less after eating. be careful with refined sugar, white bread, milk, look up hypoglycemia diet or dumping syndrome diet. I also take shakes, I use shakology (not trying to promote them), add chia seeds for fiber and protein, add peanut butter, and avacodo for fat. you need lots of fiber and good fat because it will digest slower. Also after you eat lie down flat for about 20 minutes this also helps.

I will say this..,if the doctor wants to perform more work up, i.e. colonoscopy or endoscopy be careful. I did an endoscopy and made things worse for a good month. This surgery is hell, its impacted my life like yours, and you are correct about peeling off layers of illnesses. I have dumping syndrome with hypoglycemia, and feel dizzy all the time, im scheduled to see a cardiologist...im going to request a tilt table study to see if their is nerve damage.

I did a little research and it seems you're right. I'm almost certainly having reactive hypoglycemia between meals. It hasn't been obvious because it's not hitting me as hard as it apparently hits others. I've just been feeling like a nap. Have not had dizziness or the other more obvious symptoms.

Luckily I've been eating more frequent smaller meals anyway because of the surgery. And the diet I've been eating for my sensitive stomach is also a pretty good diet for dumping syndrome. That's probably why I haven't been having much of the lower G.I. issues of dumping syndrome.

I read online that I should keep a small sugary snack or drink with me to take when I feel a crash coming on between meals.

Explains why I felt wiped out unexpectedly an hour after lunch today.

One thing that I found was that I was drinking too much with my meals and that seems to force the food through your body quicker. Only take small sips while eating and reserve your fluid intake until after your meal has settled. Also try to limit your sugar intake, and continue with the small meals.

I stopped the H2 blocker and tapered down amitriptyline (Elavil) to see what pain I had left. Turns out my Fire stomach is much improved but I still have fire esophagus. I thought when I lost the burning stomach I would lose the burning esophagus too but that doesn't turn out to be the case. I have crippling heartburn that lasts from seven in the morning till seven at night with peaks about a half hour after meals.

I don't know which it is:
1. Heartburn caused by the amitriptyline? That drug is known to relax the LES.
2. Heartburn caused by hypersensitivity to normal or slightly above normal acid reflux exposure?
3. Heartburn caused by abnormally high acid exposure, meaning the Nissen fundoplication I had has failed. That's not terribly likely but does happen in about 5% of the surgeries. It's hard to imagine that's the case considering that I still can't burp.

Have you contacted you OBGYN? I would't mess around with this, and two years post-surgery is way too long to still be suffering from dumping syndrome.

Original poster here. I've been fully tapered off the Nortriptyline for a week. Now I can tell what symptoms I had that were side effects of Nortriptyline vs withdrawal effects from tapering it down vs my remaining underlying symptoms.

My conclusion after a year is that before the surgery I had some sort of stomach problem and non-erosive reflux. The surgery helped the reflux...my esophagus is in better shape than a year ago. Not perfect, I think there's still some reflux, but better than it was. But it didn't help my unidentified stomach problem at all. I still develop a sour acid feeling upset stomach every morning that lasts until evening. With it comes some new nerve symptoms such a a hot feeling on the back of my tongue and a "nervy" sensation that runs up my back to the back of my head and triggers and anxiety response in my brain. Didn't have that before the surgery.

My gasto doc is referring me to the Cleveland Clinic.

I should note they did not give me some of the important tests before the surgery. I had no ph testing or espophagial mamomatry. And my surgeon wasn't very experienced. Don't make that mistake.

For reference the side effects I had to Nortriptyline were feeling sedated all the time, feeling generally sicklier, brain fog, a flat personality and I developed a heart arythmia (premature atrial contractions) that went away after I tapered off.

Each time I reduced the dose I had a few unwell days of withdrawal. Feeling a little shaky, insomnia, loose stools. Not feeling very well.

Update - went to the Cleveland Clinic. The dr there didn’t have any more ideas than my local Gastro. I was hoping he would know something more leading edge or would have some insight that would be a game changer. Nope. He’s starting me on a low dose of Xanax to see if it helps the daily anxiety that comes with my upset stomach. But otherwise no treatment. After PPIs, H2 blockers and tricyclics are eliminated from possibility nothing is left that’s known today.

He’s hoping it’s visceral hypersensitivity from Vagus nerve injury and will improve itself over the next 6 months. Theory is I’m 1.5 years into a 2 year recovery after fundoplication surgery.
I don’t know. It could just as easily be something else beyond current science that won’t get better. There are lots of dyspeptic people with no medical explanation.

For now it’s daily burning upset stomach. There are days it’s better than others. I’m trying to work out what leads to better days and do more of that.

The Dr at the Cleveland Clinic put me on a low dose of Xanax to see how I tolerate it and if it helps with with my stomach pain and anxiety. The starting dose is .25 mg 2x a day and check in after 3 weeks.
It does reduce the stomach pain quite a bit and takes some of the anxiety away. But it’s making me feel a tipsy kind of drunk for the hour after I take it and feel sedated for about 6 hours.
I suppose since it affects the pain that suggests the pain is actually neuropathic as they’re theorizing. That’s good I guess since it may still slowly get better.

Going to try the Xanax for a couple more weeks. He chose Xanax over other antidepressants due to low incidence of side effects which I seem prone to.

I’ve been walking every day for exercise. Exercise mildly distracts from the pain because it divides your attention.

A quick update. A very low dose of Xanax is surprisingly helping with the stomach pain. It was for anxiety but helps both happily. I’m taking only .12 mg (half a .25 mg tablet) 2 or 3 times a day. That’s a miniscule dose but it affects me every time. It makes me sleepy in hours 2 and 3 but the pain is greatly reduced and fades back in after about 6 hours. I only need pain help for about 12 hours a day. The pain subsides at night anyway.
I prefer it over tricyclics like amitriptyline or Nortriptyline because it doesn’t have to build up over weeks. So I can tell easily if it actually helping or not. Because i can tell how I feel when it wears off.

The other thing I have to do is limit my diet strictly. I have to not make my stomach work too hard or it burns more. I can make myself feel worse for days by eating a sub roll for example.

Chickenlady52

My suggestion would be to go back to a soft food diet, avoid sugar and dairy, and regularly use an anti-gas medication (simethicone). Your diagnosis is also known as dumping syndrome and is very common after surgery. Try not to drink a lot of liquid during your meals (8 small meals a day), because it has a tendency to move your food too quickly through your system. You should talk to your doctor and he can direct you as to what you need to be doing to remedy your situation. There is some helpful information on the Mayo Clinic website.

Sharon

There are prescription medications that can help with the dumping syndrome, hopefully your doctor has some good advice for you.

Spangler.115

You are still very early into your recovery. Please make sure that you are continuing to eat 6-8 small meals a day, and chewing your food to a liquid consistency. If you have recently advanced your diet somewhat, you may want to consider going back to the soft/mushy diet temporarily. Please call your surgeon and discuss your concerns with him/her.