Sam's Journey and Nissen Fundoplication 12/17/13

Hi DSMB,

Have you tried well-toasted bread? I found it chewed to a liquid easily, without getting clumpy like untoasted bread. My surgeon told me no sandwiches, untoasted bread, or steak until at least Week 8. Glad to hear you're able to add more foods into your diet.

Hang in there!
Happy healing,
Denise

Hi DSMB,
Cinnamon toast is not the only kind of bread that can be toasted well, and chews to a liquid. Pretty much all bread will do. Give it a try!

The water thing is really something, I know. Feeling that cold water sit there, is an interesting feeling, for sure.

Happy healing,
Denise

My first two days of the new semester went well with no problem walking across campus or sitting and standing through classes and labs. It seems like I have been able to eat everything except for soft breads, red meat, and soda. I've been doing plenty of walking, but I am still getting a lot of noise and discomfort from gas. What methods or OTCs work for bloating when you can't burp?

I used to have a strong gag reflex and I couldnt swallow pills for many years. If yours is as strong as mine was, you might be able to find dysphagia therapy that could improve your gag reflex management like it did for me. I only had to go to therapy for that for a couple weeks and that was the first time I could swallow pills, when I was 16 years old.

Not every surgery is done the same way. By the time I woke up after the surgery, there were no tubes going inside or outside of me except for an IV. They didn't even put a catheter in me, which I was surprised to find out, but I ended up not needing it.

I certainly had breathing problems before the surgery. Coming out of the surgery, breathing was hard because there were stitches in my diaphragm and deep breaths were painful. My diaphragm was the first thing to heal though, and I was able to breath and play trombone a week after the surgery. Now the only breathing problem I still have is from the large amount of post nasal drip continuing to build up and choke me if I don't swallow every 5 seconds. Hopefully that will end when all of the scar tissue in my esophagus is healed, however long that takes.

My surgeon actually said that he did see a hernia and he was able to fix it during the surgery, but for me it was so small that he couldnt imagine it causing any of my reflux. With laparoscopic surgery, the major muscles of your body do not have to heal the same way they would if they were cut in a non-laparoscopic surgery, so I was instructed not to do strenuous activity in general until my post-op appointment 2 weeks out. Since then, I have had no limits on weight lifting and have even gotten back to doing some actual lifting this past week.

After having 2 major surgeries, I can say that when you are seriously struggling without it, hard recoveries prove to be worth the investment. I had brain surgery in 2012 and was expecting to not have any trouble with pain management, but I had forgotten exactly how painful having major parts of body cut or wrapped can be. The reason that I was able to forget about the intense pains from my brain surgery though was that it was gone in no time. I had pains for a longer time after brain surgery and having part of my brain removed than I did having my esophagus wrapped though, so pain isn't even the trouble anymore. Now all my effort is focused on diet and trying to ignore the remaining pain from scar tissue in my esophagus, which I have always had. Luckily, both of those are temporary problems.

I understand how much of a crutch GERD can be when you have it young. I am 19 and currently in college, where if I do decide to bring it up, it is pretty much foreign to everyone. My reflux was so severe that it was the reason that I couldn't be active at all. I was glad that I could have the surgery because it meant that I would be able to be active at some point, and am already back to speed skating and being active, so having this surgery certainly won't prevent you from living your life. You just have to baby your recovery for a few weeks, and then you can return to your life.

It's been about 7 weeks and today was the first time I tried soft bread. It went down just fine, and that means that there really isn't much food I am avoiding at this point. The only major change diet wise at this point is feeling full very fast, but still having a large appetite shortly after food moves past my stomach, and having to eat much slower.

My EE was actually cured a long time ago. After my first endoscopy in 2009 when I was 14, I was diagnosed with GERD and EE. I originally saw an ENT specialist for a breathing problem, who referred me to a GI, who diagnosed me and referred me to an allergist to have an allergy test for EE, a pulmonologist to test for asthma, and a separate GI who specialized in EE. The pulmonologist proved in 5 minutes that I didn't have asthma, and I continued to look for the cause of my breathing problem. After being put on PPIs though, I was now having heartburn quite frequently and things were getting worse for both GERD and EE. The allergy test found that I was allergic to corn, beans, peas, shrimp, rice, nuts, milk, and pollen and cats. I removed all those foods from my diet and had another scope that showed my EE had gotten worse, and my EE specialist removed soy from my diet. After another scope showing my EE was worse, I had gluten and eggs taken out of my diet. It took more than 2 years, but after all of that, I finally had an improved scope.

After waking up from my 5th endoscopy, I was told that my EE was healed and that my eosinophil count was at zero, even though I felt worse than I did the day I was diagnosed. When I said this to every one of the doctors I was still seeing, they all said that there is no reason to treat the EE any further but that I needed to stay off of all of the foods I was "allergic" to since it is a condition caused by allergic reactions. I felt no different off of all those foods, and was upset to be on such a restricted diet that still gave me heartburn, so I ended up slowly adding foods back until I was back to everything but milk, soy, and rice since I can't digest milk and rice and I had more soy in the time period that my EE worsened the most. I had a 6th a final endoscopy 3 years after the one that said I was cured, and it found that my esophagus was in horrible condition but had no eosinophils, even with some of the "allergic" foods added back.

So to answer your questions, no it was not cured by my surgery since an elimination diet was able to cure it years before. This "cure" has made no difference, and my doctors have not been able to confirm anything, but they felt confident saying that they had cured me. It's hard to say that the EE was never caused by allergies because it got worse between two time points of having additional soy and then got better when I was off of soy. It's hard to say that it was entirely caused by acid damage because over a 3 year gap, my GERD continuously got worse and was giving me nonstop heartburn, and the EE remained cured or invisible.

There is some research being published right now that believes that there is more than one specific cell responsible for EE symptoms and that the focus during endoscopies and biopsies should not entirely be on eosinophils. This research is progressing fast, but probably will not reach the clinical side all too soon because of how the medical system works with clinical trials and waiting for multiple researchers to publish work before considering what one publication says. After 5 years of indecisive treatment under some 50+ doctors, I have decided that I want to research EE because I couldn't stand having 50 specialists all say that they didn't know how to treat me and that I needed to see more specialists.

I am impressed with how fast my recovery has gone and have been able to add back all foods but red meat. There are still two things that are really bothering me, and hopefully people on this forum can give me some tips. The pain spikes and regurgitation are completely gone, but the pain in my throat is still there and just as strong. I guess that is just going to take a long time to heal, and I don't think there is much I can do about that. The other major thing though is bloating. Most products and remedies I can find online work when you can burp, but when the wrap is too tight to burp, what could possibly be done to dissipate the pressure inside my stomach? It's hard for me to prevent it from happening when I play trombone and tuba, but I need to find some way to be able to make it better when the pressure builds up.

I was able to try a hamburger and after a few bites, I had even forgotten that it was the last thing to add back to my diet. Now I can officially eat everything that I have tried and I do not think there is anything I have tried yet. I can even swallow pills. The only thing I am intentionally avoiding at this point is carbonation and straws since I am still feeling bloated most of the time.

This Monday I went rock climbing for the first time in my life and it felt great. It didn't even matter that I had just had surgery. It took a long time, but I finally found a good sport for exercising that is not cardio-intensive. I am certainly not good at it now, but I will get better hopefully soon. I have been doing a lot of exercises the last couple days and have noticed that straining my diaphragm and abdomen tend to bring along those "hiccups" more often. I cannot tell whether it is more like an esophageal spasm or if it is mostly the diaphragm moving, but it feels mostly like a hiccup and only happens once every so often. My throat is still radiating pain all the time since the scar tissue is still always there, but hopefully that won't be permanent.

I think there was one small part of the packet my hospital handed me that said do not lift anything heavy until after the first follow up appointment two weeks after the surgery. Other than that, I have had no restrictions of any kind. That's mostly because I don't have any doctors that care about me enough to want me to keep in touch with follow up appointments, but for the most part I have been doing fine doing regular activities.

Around two and a half months out right now, things are not changing very quickly but I am noticing some major differences. I am still getting some hiccups/spasms rather frequently that at this point I am assuming are caused by the large amount of pressure inside my stomach that can't be diffused. I am still avoiding carbonation and straws since both of those are easy for me to avoid, but bloating is still a major feeling I have most of the time that has not gone away. It took until this week to notice that I am no longer tasting food all the time. It took more than two months after the surgery, but I finally noticed this week that I am not tasting any digested food in my mouth, which is great to realize.

I have been a lot more active the past couple weeks. I went speed skating and sprinted all out yesterday, and I went rock climbing for the second time earlier this week. I do not understand why I still get this combined burning and choking feeling that stops me from exercising if there is no acid rising up. It's the same exact feeling I used to get while exercising. I can't really push through it like I can push through other pain since it is a feeling of choking. It is probably caused by the large amount of mucus that gets created in my mouth and esophagus, but I have no idea how to stop it from blocking my breathing tube, or prevent it from being formed in large amounts since I don't need that much for any reason.

Hi Crystal. Sorry for the late response, I had a crazy busy week and haven't even had enough time to post anything big on this forum. EE and GERD have an interesting relationship. They are genetically similar in that mutations that cause one tend to cause the other, but when it comes to phenotypes, they can be easily confused on some levels. Since the treatments are very different, giving a wrong diagnosis can be a very bad thing that leads to no progress at all. I have seen some people on another forum (at inspire.com) that primarily have EE and also have GERD, but I definitely primarily have GERD and also have EE. Some of my doctors mentioned that eosinophils in the esophagus can be caused by GERD OR EE instead of both and that GERD must be ruled out before EE can be diagnosed. Somehow, my doctors did not agree with that statement and decided to diagnose me with both at once.

EE was discovered so recently that there are truly no approved treatment options for physicians to use and agree on. There are some physicians that use medications that already existed that treated similar things, but every single doctor you see for EE with have completely different ideas on how to treat it. I was put on inhaled steroids and an elimination diet. After two years of food trials and five endoscopies, we finally concluded that I was allergic to milk, soy, and rice and that the other seven foods that came up on my allergy test were completely irrelevant. It is hard to say that my GERD caused my EE though, since when I finally had a clean scope with zero eosinophils in my esophagus, my GERD had continuously been getting worse and was giving me a LOT of pain. My EE responded to some diet modifications, has been gone for two years, and did not respond to being aggravated by acid refluxing up.

So little is known about EE and I hated being shoved around 50 different doctors before being told I was "cured" but didn't actually feel any relief, so now I am planning on doing research on EE within genetic engineering. If everything works out, I should be working under one of the leading researchers for EE this summer. Do your pains and swallowing problems look like they are more symptomatic of GERD or EE? I was not told that EE patients should not have the nissen, but I was told that people under 18 should not have it since growing bodies will "outgrow" a nissen before adult bodies will, and I was 14 when I got diagnosed.

I don't know why some doctors feel so strongly that EE patients shouldn't have surgery. Ultimately, so little is known about EE that I don't think any doctors can ultimately know whether surgery is a good treatment option, and that uncertainty causes most doctors to choose to avoid it rather than give it a try.

It's been about three and a half months, and nothing has been changing fast. It looks like I am going to have to wait a while to get some pain relief. I have been heartburn free since the surgery, but I still get the same constant pain radiating from the entire length of my esophagus and I still choke on my own saliva constantly. Exercise is still incredibly hard because of the choking, even though there is no acid contributing to it. Hopefully those are things that can be fixed over time.

The main three problems I have been having post surgery that still bother me are these hiccups that shake my entire diaphragm suddenly and then go away, bloating that has no relief, and constipation. I have been used to going to the bathroom between one and three times a week before the surgery for a number of years. At this point, I am rarely getting to the bathroom more than once every two weeks and that does not help the bloating when gas can only go down. Stool softeners tend to make no difference and the only thing that helps is magnesium citrate. The problem is that I can't take that more than once every so often and I am constantly blocked up. I really don't want to have to see a doctor for more problems.

I am in college and playing trombone, bass trombone, and tuba in 4 different bands right now. One of my professors that plays trombone told me that he had a hernia repair surgery a number of years ago. He said that his body rejected the surgery and he had a horrible time, but I didn't ask him to explain his situation since I really can't ask that. I do know that it was a hernia repair without a wrap, and he is still able to actively play and teach now. With that in mind, I would not think that a conclusion could be made by a surgeon that he couldn't or shouldn't play wind instruments.

When I talked to my surgeon before my surgery, he said that I shouldn't play my trombone for about a week after my surgery. I was shocked that he said that, and even more shocked that I could play my trombone with no problem 10 days after my surgery. Thinking about the mechanics of the wrap and hernia repair, the only way that I can think of the surgery and playing a wind instrument directly relating is the stress put on the diaphragm. A hiatal hernia tends to disrupt the diaphragm, and repairing the hernia involves putting stitches in the diaphragm. Because of these stitches, I had a lot of discomfort in taking deep breaths immediately after the surgery. I was able to take unrestricted deep breaths a few days after the surgery and my diaphragm hasn't given me and pain or trouble since then.

Since playing a wind instrument puts stress on the diaphragm and not really any part of the esophagus not connected to the breathing tube, I can't imagine this being as big of a problem as the surgeon is claiming. Playing a wind instrument puts just as much stress on the diaphragm as taking deep breaths without the instrument, and I can't imagine that causing any trouble in the physiology of the junction between the stomach and the esophagus, with or without a wrap. If you want a professional opinion that isn't from that surgeon, there are definitely different people to ask. Not many surgeons have any knowledge of how this surgery impacts playing a wind instrument, but there may be other professionals to consult, or other musicians who have had the surgery.