Rapid onset of dysphagia - Long post...

Hello all. I am very happy to find this forum. I hope my post makes sense - it is a quite rare situation.

I am a 32 y/o female, history of gastric leak post bariatric surgery nearly two-years ago. Long story short, I had surgery, my stomach staples leaked, and a stent was placed in my gastroesophageal region to correct the issue. After 6 weeks of having my little flapper (sphincter is perhaps the medical term) pried open, there was pretty extensive damage, which led to my GERD diagnosis. I also had some ulcers from the stent, which healed on their own after a few weeks of PPI therapy. I have been on twice daily omeprazole ever since the stent removal about a year and a half ago (40mg per day).

My symptoms have been completely tolerable and rarely an issue up until the past couple months. I have had some breakthrough heartburn/reflux issues, though relatively minor until this Monday, just a few days ago. I suddenly felt as though there was a giant piece of food stuck in my chest, and nothing was going down nicely. I chewed and chewed until my food was mush (which I do all the time), and I was still having trouble swallowing. Even liquids were difficult. The next day was worse. It became painful, and even swallowing my own saliva began to hurt. I couldn't eat a thing, and drinking was even a task. I am VERY familiar with normal heartburn/acid reflux symptoms (aren't we all), and this was SO different. So I called my GP to see if I should come in and be seen or whatnot. She recommended going to the ER, given my history.

ER ran a CT to rule out any form of a gastric leak and ran blood work. All normal. They called my GI doc to see what they thought, and GI said I needed to be seen for an endoscopy as soon as possible, but in the meantime gave me a giant bottle of Carafate and some hydrocodone for the pain, in the rare event that it's some type of esophagitis (apparently very uncommon for the non-immunocompromised patient).

The GI clinic called me the next day to schedule my endo, but if I wanted to see my own doctor, I would have to wait two weeks. I took the appointment, because I know and like him. But I am starting to second guess waiting that long...

I am now about 4-5 days into this dysphagia, and even with the meds and pain killers, I am really having to force myself to eat even a few bites of some soup. I have lost about 8 pounds already. I don't like taking drugs, but it really helps ease the constant pressure in my chest.

I love to research, so of course I have been trying to narrow this down to what it might be. I choose to stay away from Dr. Google, because he is always wrong, and instead read actual medical journals, case studies etc. Everything I read says that rapid onset of constant dysphagia needs to be considered cancer until proven otherwise.

Truth - I'm not worried that this is cancer. The odds are definitely in my favor - I'm young (at least in my eyes), I am female, I am healthy, I am not overweight, and I am not a drinker. But I AM worried about stricture. I AM worried about Barrett's esophagus. I AM worried that I may need to have surgery, because I am already taking twice a day PPI meds and still having issues like this without warrant (I don't drink, eat triggering foods often, etc.). I do things according to plan and I am still having trouble. And it makes me sad.

I guess I am wondering if anyone has had anything sort of similar happen to them and what the outcome was..? Or if anyone may be able to shed some light on what they think it may be? Or if it would be silly of me to call and try to get an earlier appointment with a different doctor..?

Thanks in advance!

Is it not ok to post my question on different boards? That is the rudest response I have ever come across. I have a problem and am looking for answers so I posted on a few boards.

Why in the heck would someone find think this is being "a joker?" Do you really think people don't have better things to do? I am a person, not a joker. And this is a real situation.

You, my friend, sure know how to make people feel welcome.

tooyoungforthis!

Welcome to Healing Well.

Please don't let the rude comments from one person effect your opinion of this site. I apologize for that.

I had a similar situation and here is a link to my story of a torn esophagus.

www.healingwell.com/community/default.aspx?f=45&m=2337138

I had an esophagus stent for s few weeks and it tore my wrap completely apart and left my LES gaping open. If your stent was also there it is very likely it damaged your LES and it is causing your reflux. Depending on which surgery you have they may or may not be able to do anything for it if it is.

As Denise said it sounds like you have developed a stricture. It is very common with reflux and I had good results when mine needed dilated before I had my Nissen. Sometimes it does take a couple times for it to hold though.
As for Barretts, it has a very low chance of advancing any further and even less if you can keep the reflux under control. It sounds like the meds have been working for you.

I know about the esophagus pain you feel and the worry that something has opened up again. I had a hole in my stomach and esophagus and have had a couple scares it had reopened.
Those stents really do a number on the tissue inside and I think they can cause some nerve damage as well. I saw pictures of mine and it looked like someone took a cheese grater to my esophagus where the mesh was pushing into it.

If the pain gets any worse or you just don't think you can wait I would ask for an earlier appointment if it's available.

Take care,
Bill

Thank you all, for your kind replies. I am very glad I decided to check on my post again.

Denise - I read somewhere about not being able to have laparoscopic surgery for Nissen if I have already had an abdominal surgery. Boo! I am hoping that it doesn't need to come to that. I never had a fear of surgery until I had mine and had a complication. Now it scares the bejezus out of me! Thank you so much for your reply!

WJF - I have not had any other testing except for a couple scopes and some barium swallows while I was in the hospital. I will definitely inquire about manometry, and of course, do some research before my appointment! Thank you!

Bill - your journey is quite similar to mine, in a "different" sort of way. I read through your posts and truly appreciate you sharing your story. You should definitely start a blog, as your doctor suggested! I have one started, but haven't opened it yet. I think many people would benefit from browsing the internet and reading a blog from someone with your background. You have a great and positive attitude, even with all you have been through - and THAT is what people need to hear when they are faced with scary situations like this. I am very happy to hear that you found the right care team now. And very thankful that I could read your story. Thank you for your comments.

As for me - I still fear eating food, but am taking a few bites here and there after my pain meds kick in. I am able to drink without painful swallowing, but I still feel pain when my liquids "slosh" around in my stomach and regurgitate, but I am doing my best to keep as hydrated as possible. I think this is probably TMI, but I know based on my urine (and lack thereof) that I am already bordering dehydration. I need to take in more water. I am having trouble sleeping, too. I really dislike the feeling of being on vicoden. My appointment cannot come soon enough! This is all just happening so quickly.

Besides the basics (tomato based products, alcohol, caffeine, etc.), are there any other things you all avoid? I guess it doesn't matter too much right now, as I'm not eating much of anything, but when I AM able to eat again, I would like to know what foods to avoid. Does anyone food journal to find trigger foods? It seems like a lot of work, but would probably be worth it for quality of life, I wager...

Don't have any advice for you, but just wanted to say that I hope you feel better and get some answers soon! Take care of you and let us know what happens!

Aww, thanks for your support. I spoke with a triage nurse who assured me that my fever had absolutely nothing to do with my GERD or gastric issues. I had classes all day that I needed to attend, so have been taking Tylenol all day. Therefore, I am not sure if the fever is still there. If it is, and if it persists in to tomorrow, I will find someone who will agree to see me! I never go to doctors, so i am kind of lost in this whole shuffle.

My scope appt cannot come soon enough! And it is not until April 11. Sigh. Thanks for listening. I promise I am a much more positive person, generally