Hi all! I’m chronicling my Lap Nissen Fundo experience so others affected with the same condition as me and who have been presented with similar solution options as I have, and feel the same struggle I felt in deciding what was best for me – can gather intel from someone who has been there, done that. Reading through all these blog threads (I’ve been lurking around for 6 weeks) helped to educate me and ultimately prepare me for my own decision, so I really wanted to do the same for someone else.
Here’s my story. It’s lengthy, but interesting – I promise!
Up to the time my story starts, I never experienced a single moment of GERD symptoms in my life – can even count how many times I ever burped - EVER. In fact, never needed more than an antibiotic in my whole life (maybe 3-4 times). I could not relate to chronic illness.
One day, roughly 7 years ago, I woke up with acute pain and pressure in my chest. Out of the blue, suddenly, no warning – totally shocking! Having googled my symptoms, I presented to the family Dr. my diagnosis of Haital Hernia. Yet, Barium Swallow resulted in no hernia. Was told to lose weight, keep good posture and sent on my way.
Fast forward 2 ½ agonizing yrs later… now, I’m a hot mess. Some sympathy here is warranted for my delay in going back to the Dr. cause I was traumatized by my earlier treatment and I believed (wrongly) that this condition would resolve itself – like a cold or a stomach bug would.
Anyway, out-of-control symptoms now include burning in my stomach, belching (like I’m blowing the right-of-way for a steel barge), constant feeling like food is lodged in my throat (forcing me to continuously swallow to alleviate the feeling even if for a few seconds), tight esophagus making swallowing food difficult, so tight in fact nodding my head or moving side-to-side became limited and uncomfortable, frequent esophageal spasms (averaging hourly and lasting several minutes - like the worst Charlie Horse you have ever experienced in your life – in my esophagus! Agonizing pain), dry and inflexible esophagus (which made laying prone impossible – felt like I was choking), random food just comes flying up the back of my throat without warning, acid flies up and out my nose (ouch, that hurts!), and of course the lovely lava-vaporized flavored heartburn - all. day. and. night. long.
So, back to the family Dr., I’m now insisting on an EGD (love google), my GI diagnosis is severe GERD, Eosinophilic Esophagitis or EE (with rings – very bad), and Gastritis (still no hiatal hernia found even though I felt I had one and believed it started this whole mess). Prescribed a shot of Carafate before each meal, 40 mg Nexium 2x daily (to treat – not fix – GERD), 220 mcg Flovent 4 puffs 2x daily to be swallowed, not inhaled (to treat – not fix – EE), lose weight – again!, eat low acid/low fat (GERD) diet, and go see an Allergist to rout out cause of EE (fyi, known causes are exotic virus, an allergy or – wait for it – excessive acid). Gee, I wonder which one I had? And, with the high dosage of Nexium I’d been taking at this point (for about 6-8 wks), I still have enough acid backing up to cause esophagitis and need that steroid to keep my esophagus from spasming, inflaming and tightening ? And now asking myself, am I heading toward getting Barrett’s one day, eventually cancer from this?
I actually did see an Allergist who “wasn’t sure” – after lots of testing - but agreed my EE was likely caused by my esophagus being bathed in acid 24/7. He was nice though, and offered me some allergy meds – which I took for 6 weeks to rule it out. I also pulled more food out of my diet that was suggested possibly problematic.
So, again at this point, I am reeling over the idea that I have a DISEASE having been the healthiest person I know, now being told has no cure and I’ll be dependent on meds for my lifetime in order to be comfortable (not symptom free, but mostly tolerable). Surely I cannot be on meds the rest of MY life – not ME? I went through stages much like grieving a death. Yet still, I was feeling so debilitated that I welcomed the meds for the basic relief I was getting.
[SIDE NOTE: For those unfamiliar with EE, eosinophils (eos) are white blood cells. When your body has an injury, it sends eos to that area to plump it up or swell, essentially cushioning the area to help protect it during healing. So in my case, acid bathing my esophagus 24/7 is continuously injuring it and my body is trying to protect the organ. A healthy person will have zero eos in their esophagus. When I was first diagnosed, the EGD biopsy showed I had 100%, then after taking Nexium and the anti-inflammatory steroid (Flovent), a 2 ½ yr later EGD resulted in 30%. The percentage has remained at ~30% for 5 ½ yrs despite taking up to 80mg of Nexium daily and the highest dosage of Flovent that is allowed. Over time, this condition causes scaring (strictures) and much worse to the esophagus.]
At some point, midway to the present day of my story (probably been taking Nexium for about 3 yrs or so by now), I start to notice a life disrupting fatigue. I mean TIRED, can’t get my energy up, sleeping fine, working out regularly – such as I can, eating a rainbow of fruit and veggies and taking my vitamins, but FATIGUED. Got a blood test, came back deficient in B12 – otherwise fine (yes I had my thyroid checked). Googled PPI(s) aka Nexium, and found out long term usage side effects include the body’s inability to absorb B12, magnesium and calcium. GREAT! Got a B12 shot, but no joy – my body cannot absorb the vitamin. Now, looking forward to living life with chronic fatigue and getting osteoporosis in my future!
Also, FYI and just for the record, I did NOT experience a change in my GERD symptoms (not for the better, not for the worse) after losing the weight my Drs were hammering on me to lose.
Fast forward 5 LONG yrs taking meds (aka today)… relocated to a new state and got set up with a new GI, had another EGD done – Diagnosis of GERD, EE and – wait for it – sliding Hiatal Hernia. Finally! Some validation. (At least the gastritis cleared up and I was off Carafate, and by now I cut my Nexium intake in half using a restrictive diet, but unfortunately still have GERD and EE problems.)
GI casually says I can get the hernia repaired through surgery. Whaaat? A flicker of light sparks in me – the possibility of fixing my whole condition (at this point I’m still convinced the hernia is the rout cause of my GERD), not just treat it, but FIX IT! I’d be healed and no longer dependent on meds! After 7 plus years of tolerating my “new normal”, I’d be HEALTHY AGAIN. OMG! It’s like I won the lottery, that’s how I feel.
Anyway, the GI refers me to a bariatric surgeon, and after an esophageal manometry (mind over matter for this test is necessary), CT scans (that iodine I.V.’d into my arm was crazy, burned my arm and felt like I’d peed my pants), Upper GI series, Gastric Emptying (which came back abnormal and from google - love google - found out that’s common when the lower esophageal sphincter or LES is malfunctioning), and after MUCH RESEARCH INTO THE BACKGROUND of this guy – which is impressive, I meet for a consult.
Surgeon recommends a Laparoscopic Nissen Fundoplication (LNF). Says my primary issue is the GERD/EE, not the hernia (got a malfunctioning LES! aka a gaping hole at the base of my esophagus, and explains why even with so much Nexium, acid continued to freely move up my esophagus causing my EE – and strictures), but the small hernia (1cm) will also be fixed during the procedure. It’s a TWOFER! I consent –on the spot – to go ahead with the surgery (strong intuition from in-person discussion, like I said, he is impressive). Surgery is scheduled in 6 weeks (Jan 14 2013 – assuming the world doesn’t end on 12/21/12 LOL). I’m on top of the world! Yey! …And kind of ticked off that either of my GIs didn’t guide me in this direction themselves a LONG time ago, then, maybe I wouldn’t have so much scarring from EE/GERD after 7 plus years of living with this condition on meds!
Cut to… I go home and start researching LNF procedure, prep, aftercare, patient experiences, etc.
Well, WHOLE. E. CRAP! I’m most certainly Fah Ree King Out! Bone chilling… Vagus Nerve sliced and diced, or just plain damaged and killing ability of digestion. Esophagus paralyzed. Stomach paralyzed. Chronic Explosive Diarrhea. Stomach wrapped wrong way, too tight, not tight enough. Even if successful only short-term lasting results. Oops, goofed and esophagus gets sliced, liver sliced, spleen sliced. Esophagus spasms. Excruciating gas pains. GERD returns. Bloat. Inability to swallow. On and on and on…
Now, I’m a level-headed person and believe in educating myself. Obtaining a complete picture of everything that could or will occur with this procedure arms me to make the best decision I can as well as be fully prepared. Full disclosure!
I reviewed LNF medical white papers, medical sites and of course, discussed what to expect with my surgeon. So I have the stats and from vetted sources. And in my case, with undergoing the LNF the odds are excellent for gaining a 100% normal, healthy life, symptom free and med free. My surgeon said there’s every reason to expect this stomach wrap to last the rest of my life (I’m 40) without issue – as long as I allow proper time for healing and not do anything crazy to damage my wrap while its healing.
But, when I’m measuring my current situation (pre-op) against those horror stories of agony from botched LNF noted in these blog threads, and frankly quite vulnerable to the fear that’s generated while reading them, I not only stop and re-evaluate, but I’ll be totally up front with you, doubt doesn’t even begin to describe my reaction. Cold tremble of terror up my spine, loosened bowels – I actually got diarrhea from fright, insomnia 7 days straight, tension headache, reduced appetite – way beyond preop jitters…I must have gone over every aspect of pros and cons with my –absolutely wonderful and patient - mother 10 times, rehashing over and over as my anxiety built up for over 4 weeks. I mean, this is MY body, the one and only! No second chances if it gets screwed up!
We all know that we need to ensure we get our information from a valid source. And from a medical research perspective, this procedure has a high long-term success rate, and in my case in particular the odds are in my favor. But, we also know that there is a LOT of anecdotal – and equally important - information that comes from first-hand experience – which medical papers and physicians just don’t capture. And hey, surgery is plain scary even for the most courageous! Especially MAJOR surgery, with 6 months to a year for healing time as a best case scenario. Dreadful!
What to do?
Bottom line…I trust my surgeon. I’ve done my homework, I know the risks, and I’m reaching for the brass ring. Taking a leap of faith. May the force be with me.
What’s been the most beneficial reading through first-hand experience is seeing the similarities experienced by folks. I’ve got a profile of normal symptoms to expect while recuperating from the LNF procedure. I’ve got suggested menus and likely schedules for graduating through the recovery phases (picked up a lot of good links). I’ve got a list of do’s and don’ts to avoid setbacks and unnecessary pain. I’ve been able to prepare mentally for the patience I’ll need – surrender to recovery – as well as get my pantry and fridge in order for high protein liquid and puree meals.
[SIDE NOTE: I don’t eat sugary or high glycemic food preop and I’m not gonna postop, so no pudding, ice cream and that kind of thing for me, rather I’m preparing with nutritionally sound liquid meal replacements (the stuff is pricey, but worth it). ]
I’m working out rigorously an hour a day – pushing through GERD stuff as it presents itself, my cardio is in good shape. Lifting 15lb dumbbells every other day (not bad for a 5’4” woman!).
I’m about 30 lbs overweight, so dropping a few lbs during recovery shouldn’t affect my health. In fact, I see it as a bonus. I’m in excellent health otherwise. I’m ready.
And I’m now just days pre-op.
I plan to post my own experience as I go through LNF recovery.
And to those who are considering having this surgery, know that while you read through my journey, I just say it like it is. No sugarcoating. Also know that I have a high tolerance for pain and really no patience for those who don’t – just don’t have sympathy for it, I mean suck it up and get on with it - persevere! I’ve inherited this no-nonsense perspective from a LONG line of VERY strong women on my mother’s side and I’m proud I did! So don’t seek platitudes from me, but I do hope my own experience provides some value to others.