Elle Jay

I am scheduled for a partial wrap surgery next week and like everyone else - I found this site and have been extremely grateful for the peace of mind it has given me to read all the other stories so I wanted to take a few minutes to share my own.

I am a 28 year old female from Wisconsin. Up until this past summer I didn't even know that I was SUFFERING from acid reflux. I can probably count on both hands the number of times I took an antacid prior to 2013 because I didn't know that anything was actually wrong. I spent years crying in bathrooms and crying myself to sleep thinking I was going to die from choking on something while eating because food got stuck literally every time I ate. No doctors understood that I was serious about it being a problem until I came in with a piece of food stuck that I couldn't get out.

In the past few months I have written a blog for my family and friends to better understand what is going on... I figured I would include it here as an intro....




"Ever since I can remember I’ve had had some issues with choking when I eat. about 3 years ago my family was out to dinner for my sister’s birthday and I choked on a piece of chicken and thought for sure I was going to die right there. Since then it became more frequent and traumatizing with each occurrence. I knew I needed to do something but didn’t know what. My grandmother, uncle, and sister have all had the same problems but none had any major complications.

The problem became more frequent and nearly every meal I had to excuse myself to the bathroom to try to dislodge whatever became stuck – tacos, bread, apples, cheese, pretty much anything solid.

This June, we cooked up some pork chops on the grill and I couldn’t wait to eat them. After a couple bites I got up and ran to the bathroom to do it again. This time, nothing came out. I tried for hours to get it out and it just wouldn’t budge. Everyone gives the advice of “try to drink something” which is the most painful thing you can do with something stuck in your throat but I tried… and tried.. and tried. Nothing was going up or down. I wasn’t even able to swallow the saliva in my mouth and had to spit that out.

Eventually, I talked my boyfriend into bringing me to the emergency room because I was scared. In my head I thought it was nothing and I was wasting time and money going to the hospital and I was sure the doctor would just tell me the same old “eat smaller bites and chew better” like every other time so I debated going in until I was practically dragged inside.

The emergency room doctor made me do a couple tests and took some x-rays to see what was going on. He gave me some “sort of like pop rocks” stuff and told me to drink water – this was supposed to push the pork chop down. But in reality it just made me push the circle of nurses back so I could spit that out too. After that didn’t work, they called in a surgeon.

I was sedated and an endoscopy was done to cut out the food and look at my esophagus. The results were not what I was anticipating. I was told I had strictures (scar tissue) on my esophagus causing things to get stuck and a hernia which kept my stomach open to my esophagus causing increased acid which in turn scars the esophagus more.

A month later, I had the stricture dilated to break up the scar tissue and enlarge the space for food to go down. In the meantime, they did biopsies to ensure there was no cancer and that I wasn’t at risk of bigger problems. They also had me do a Bravo probe to test the pH levels in my upper esophagus. This was done while still taking an acid reducing medication.

The Bravo results showed that I was at about the same level as most patients with GERD and I would be required to take a pill for the rest of my life, have surgery, or both.

I started doing a lot of research on the medications as well as the surgical options and spent hours talking them over with my surgeon. In October, he suggested we proceed with the final tests and plan for surgery since I am only 28 and don’t want to live with this for the rest of my life.

I had a gastric emptying study done to ensure my stomach could digest food properly. This was done by eating radioactive oatmeal and hanging out in the Nuclear medicine room at the hospital for a morning. The results were normal and I'm still not a Super Hero (though no one has seen me in the same room as Wonder Woman, just saying).

I also had a menometry study done to see if there was weakness in my esophageal muscles. This was by far the worst test. They stuck a tube up my nose, through my tear duct, and down my throat… this is all done while awake and with very minimal numbing medication. From this study, we learned that there are parts of my esophagus that are paralyzed and cause me to think I am choking – even when I’m not. My body is so used to choking, the muscles have stopped working properly and may require additional physical therapy in the future.

The final step was to go off my medication for a week and try the Bravo probe again. This time the results were off the charts. A neutral pH is 7.0 anything lower is acidic; higher, basic (shout out to my middle school science teacher for that one). The monitor showed pH this time and I was able to watch as things made it fluctuate. From the first test, I knew that those with general GERD tend to range about 4.0 with a few dips below this level. I noticed I was spending most of the first day between 2.0 and 5.0 with many dips as low as 1.2. 1.0 is the same level as battery acid and this was happening in my throat… no wonder I had scar tissue. The test showed that on the first day I had 48 significant occurrences below 4.0 and 45 the second day.

With all the tests completed, we scheduled a major surgery. On November 21st I will be having a Toupee Fundoplication and hiatal hernia repair done. This is a procedure where they take the top of the stomach and wrap it 270 degrees around the bottom of the esophagus to recreate the natural bend that I no longer have. The recovery is expected to be pretty intense but worth it in the end.

It’s going to be a long, rocky road but I think I’m ready."

Post Edited (Elle Jay) : 11/18/2013 10:41:39 AM (GMT-7)

Thanks StephanieJean. I've actually been reading this forum since you started posting and have followed your entire journey. I am scared and excited and just a big mess of emotions. I have anxiety as well so I am going through all the "Is this the right choice?" "What if something worse happens?" "Am I going to die?" questions.

Hi Elle Jay,

Welcome to Healing Well!  I'm so glad you've found the forum, and have already been learning from our great members!  There is a very active contingent of "wrapped friends" right now, so you can have your surgery and heal right along with them! 

I found this forum a month or so before my surgery in February 2009, and it was a godsend.  Nobody prepares you properly for the recovery, so it's good to talk and share with others who've been through it. 

Be sure to ask any questions that come to mind, and we'll do our best to answer them!  You can be sure that we'll be here to provide support and encouragement throughout your recovery!

You may have already seen this, but here's a link to my early recovery journal. 

https://www.healingwell.com/community/default.aspx?f=45&m=2183443

Again, glad you've joined us!

Best wishes,

Denise

Thank you all. I did meet with my doctor for pre-op physical this morning and everything is still on track... as long as I don't get a cough or worse cold. Which is driving me crazy because when I get a cold-I get bronchitis. I just don't have enough time left to get bronchitis and still get this surgery done this year. With all of other procedures that we have done I'd really like to do it before starting another insurance year over!

Also, for those that mentioned it, I haven't taken anything for anxiety in quite a while. I was on every anti-anxiety med known to man at one point or another and I just couldn't deal with the side effects anymore so I gave up trying and have been able to control it quite well with just Vit. D and a healthy/happy lifestyle. I don't plan to take anything for or after this surgery to treat it. Its hard to treat only anxiety and not mess with emotions and I'm not depressed so the meds make me super manic to the point of not wanting to talk because I annoy myself!

I honestly think I'm ready for this and have all of you to thank for it!

Oh my goodness its almost surgery day. Just three more days. Huge THANK YOU to everyone here for making me feel so prepared. I'm a big mix of emotions - scared out of my mind but so anxious and excited to be moving toward a healthier/happier life.

And just a follow up on my pre-op.... I had a minor lung infection so they put me on steriods and antibiotic to clear that out. I'm feeling pretty good right now but have to have a final check to be cleared on Wednesday morning. I think everything should be good to go since I haven't been coughing much and my chest isn't heavy and tight anymore.

Please send prayers and good vibes my way.

AHHH... its almost time. I have to be at the hospital at 10 am tomorrow morning. I am finishing up on some work stuff trying to get that all in order and then attempt to get some sleep tonight.

Anyone have recommendations on what to pack for the hospital? I have seen that shoes and comfortable clothes are suggested by most people on here but anything else?

Anything I need to tell my boyfriend and mom who will be there after I get out of surgery that I might forget in the post-op fog? No straws, no caffeine, um...

Trying to stay calm but starting to freak out!

I hope everything goes better than expected for you today!

Yay Elle Jay! You will be just fine!

Elle Jay,

 

Welcome to Healing Well and I am sorry I am late posting this !  I am cheering you on to a successful outcome from your surgical procedure today. With so many people sending you good vibes you should do well my new friend.

Kindly,

Kitt

Quick update: was in surgery fr nearly 4 hours. Surgeon found a second hernia and had to repair both. Everything else went well. I'm feeling ok now just a sore back from laying around.

Thanks for all the positive vibes and prayers.

Thanks. I was glad they could do it all at once too and I feel pretty good. I've only had two doses of pain meds since the stuff they used during the procedure wore off....plus some Tylenol. Still on just ice chips. Trying to get upand wwalk once in a while but these morning nurses are not my favorite and less helpful than the others have been. I really wish I had brought a book...I'm so sick of tv. Other than those few very minimal complaints I'm doing really good.

Thinking of you and hope you are doing ok!!

You are doing well!
That pain in the neck and shoulder can come from diaphram irritation. I took childrens liquid motrin and it helped so much and went away in about a week.