Posted 7/5/2015 5:42 PM (GMT 0)
Firstly, I want to share my whole story for one reason. At one point in time I was lost and distraught. I did not know where to turn, was clueless, and told medially I did not have an issue. In case someone else comes along with the same symptoms I would love for them to find some solace in knowing they are not alone.
I have been suffering for nearly 10 years.
When my first symptoms arrived years ago it started as hiccup fits when I would eat certain foods. I tried to narrow it down and believed it happened mostly when I ate tomatoes. Which saddened me due to my love of tomatoes. I would find myself with uncontrollable hiccups which was always accompanied with severe chest pain. After a year or so, it grew to (often times) leading to regurgitating.
After a year or two since the onset of my first symptoms, everything got progressively worse although I had cut tomatoes out of my diet. I could not lay down without possibly waking up with hiccups until I got sick. I would have to spend nights sleeping on the bathroom floor next to the toilet cause I did not know when I would wake up with a hiccup fit that would lead me down that path again. I spent multiple days at a time awake cause I could not lay down without waking and getting violently ill. We bought a (Bad) recliner which barely reclined so I could try to sleep in an upright position on bad days. I had to sleep next to a trash can with a liner in it for years.
As for treatment, after a year or two of the first symptoms my family doctor at the time told me that hiccups was not the symptom for anything. And that medically nothing wrong with the human body would be accompanied by hiccups. I left and suffered for another year or two. And when I say suffered, one month I did not hold anything down for an entire month. Every meal came back up eventually. Weakness and dizziness began most likely from malnutrition and lack of sleep. Pain nearly every moment. Regurgitating constantly. Sleep only happened when I physically passed out from exhaustion. I remember during that horrible month only attempting to eat soup and toast and not being able to keep anything down for a month straight. I would eat and only hope and pray to hold things down long enough to survive and allow my body some nutrition.
On a side note, my young son also has a different condition, and our family doctor gave us some medical advice on his treatment which we found completely OFF THE WALL, invasive, and made no sense at all in any manner. It is unrelated to my health problems but it triggered us to change doctors. At this point I had been suffering for nearly 5 years. So I made a decision to find myself a new doctor as well.
The new doctor quickly had me moving in the right direction. On the first visit I had only eaten one cracker in a week. He instantly put me on two 40mg pantoprazole pills per day until I could get an appointment with the gastroenterologist.
On the first visit there they reduced me to one omeprazole. They proceeded to give me multiple tests, endoscopy, manometry and others I can not remember. Yet not only did the omeprazole reacted badly to me and I proceeded to continue with the same symptoms as before the pantoprazole. The day of the endoscopy they placed me back on 2 40mg a day of pantoprazole. I was told my esophageal sphincter no longer closes as well as partial hiatal hernia. (Which I am guessing is the same as GERD although I was never actually told that specifically?) They wanted to rush me to a general surgeon for the nissen fundoplication.
I could not get in right away. So I began to research the nissen fundoplication (which I will return to later). At the same time my son was finally also getting the ball rolling on his treatment. He was born with an 85 degree curvature of his spine. He would need years of treatment as well as constant hands on care. He spent an entire year in a torso cast and has also since had two spinal fusion surgeries.
I am sorry, but regardless of my condition, he takes all priority over myself. To be blatantly honest, if I end up gone in ten years, but he is treated and has the best chance for a decent life, I am fine with that. So I have remained on pantoprazole for the last 4 years to care for him.
Things I have discovered which I hope may help other people.
Most importantly, ORGANIC FOOD!!!! Without a doubt organic foods has changed my life. Almost straight across the board, fresh organic food give me no issues. Yes occasionally I have bouts, and once they happen I cannot really eat anything for days. But organic items seem to be digested so much better than anything else. It doesn't matter if the foods are tomatoes or anything, as long as it is organic I seem to be able to handle it.
Secondly dried herbs are awful. If we cook with dried herbs over fresh, I am almost always sick. Not sure why or how this is. But fresh herbs (and organic ones if possible) digest much better.
Lastly not all PPIs worked the same for me. I was on I believe 3 and forget the one's name. But the only one which did anything for me was pantoprazole. I am sure for others that may be reversed. But if you find no difference with your symptoms once you are on a PPI, ask your doctor if they would think trying a different PPI is an option.
I do realize that this may not help everyone, and each situation is different. But at one point in time I could not hold food down for a month straight. At another time I ate only one cracker in a week. Now I have started to ween myself down to only take pantoprazole when I have one of those bouts. I don't take it daily.
I DO NOT think anyone else should do the same as myself with the meds. Please do not. But the fresh herbs, and organic foods may help someone.
As for my situation, my son is now sporting new magnetic rods, and will not need another spinal fusion for at least two years, so it is time to look into healing myself. And my big question is about the nissen fundoplication vs the linx system procedure vs the tif (transoral incisionless fundoplication) surgery. I have looked over this board and seen so much on the nissen and complications etc. But very little on the linx and even less if any on the tif.
Has anyone done the tif surgery? If so, what are your thoughts? It seemed like the best option if you can find someone qualified to do it. I have only ever heard of the linx from this board and would love insight on that as well.
While my life is a mess, and I do suffer still. It is worth it to see my son happy and doing well. But I would love any insight or help. Thank you so much for your time.