Surgical Referral - What to Expect?

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Brianala
Regular Member


Date Joined Apr 2014
Total Posts : 91
   Posted 4/22/2014 3:38 PM (GMT -6)   
I'm fairly new here, just found this forum recently when I started seeing a GI doctor. I've had bad heartburn/reflux symptoms for a long time, and I've been on prescription PPIs for the last four years. Got a referral to a GI doc last fall and had my first endoscopy in October.

I was diagnosed with reflux/GERD, esophagitis, gastritis, and hiatal hernia. Since then I've been on Dexliant, Prevacid, and Ranitidine daily. I was also put on Azithromycin but I could not tolerate it. Had a barium swallow test that revealed a filling defect. Had a second endoscopy with a Bravo ph test.

While on my PPIs the Bravo test showed between 22-24 instances of heartburn and regurgitation per day, while upright. The de meester score was 9.2, which apparently isn't too bad if you're not already on meds, but with meds is not great. Confirmed the esophagitis and gastritis, and added duodenitis to the diagnosis. I had three polyps removed and all results from biopsy were normal.

I'm 33 years old and while I'm mostly physically fit, my doctors suspect I have some sort of undiagnosed autoimmune issue.

I've got a referral for a surgical consult, and a manometry test scheduled. I've been reading as much as I can about the fundoplication surgery itself, but I'm not sure what to expect going forward.

What should I expect from the surgical consult? I know to ask about the experience of my surgeon. Are there other questions that you wish that you had asked? Has anyone else here who had the NF dealt with autoimmune issues, too? I have a lot of other medications I take and I'm not sure how I will manage to take them after the surgery, or what to expect from the healing process. Any other words of encouragement or advice? I'm really nervous and not entirely sure if I'm making the right decision.

Thanks!

1039smooth
Veteran Member


Date Joined Sep 2013
Total Posts : 2053
   Posted 4/22/2014 4:12 PM (GMT -6)   
That's a lot. Can I ask how you feel in general? Goodness. I'm 33 myself, but we may have covered that before.

Yeah, definitely ask how many procedures the surgeon has done. Unfortunately, not many people do this, but you could always Google them and see if they have been rated or anything like that. However, there's usually no more than say five participants.

I wish I had gotten a second opinion sooner. I have been to a second GI doctor post-surgery, not pre-surgery. Makes no sense, huh? #1 pretty much saw I wasn't improving with meds, so surgery was suggested. I just went with whoever he referred. She's apparently done hundreds. When I was told I'd only miss a week of work, I dismissed it as no big deal.

As far as your meds go, you might have to see if you can get the liquid version, because swallowing is going to be taxing for a bit. Things will get stuck in the wrap area early on. If they're not getting stuck, then that isn't really good, either.

Brianala
Regular Member


Date Joined Apr 2014
Total Posts : 91
   Posted 4/23/2014 8:38 AM (GMT -6)   
I certainly don't feel as good as I would like. In terms of my gastrointestinal symptoms, I struggle with heartburn and regurgitation daily, and frequently throughout the day. I haven't been able to actually burp without acid coming up in years. More often than not I have heartburn. Eating anything more flavorful than a banana or rice and chicken is painful. Carbonated beverages are a nightmare of pain and bloating and foamy regurgitation waiting to happen. While I wouldn't say that I have trouble swallowing, I do frequently feel like food or pills get stuck going down. I have a gurgling sound/sensation in the back of my throat after anything I eat or drink - kind of like pop rocks. If I lean over or sit or move the wrong way, I can feel the contents of my stomach sloshing back up into my throat.

There has been some improvement with PPIs - I used to wake up choking on acid/bile, and I used to have incredible difficulty sleeping without pain. One time it was so bad I literally thought I would choke to death. I still wake up with heartburn, but it doesn't wake me up in the middle of the night anymore. I used to have problems with recurring sinus infections, at least 2-3 a year, every year. Since being on PPIs for most of the last 4 years I have seen a decline in sinus infections, and I haven't had one the last two years at all.

I could probably tough it out and make do for a while longer, my doctor really has left the decision entirely up to me. Although, he did say that it is likely just going to get worse and that I'll need to have it done eventually.

It's impacting my quality of life, and that's my primary consideration right now. If this can buy me a few more years without symptoms, then I think it will be worth it. I'm not ready to resign myself to just living with this quite yet.
Hiatal Hernia, Esophagitis, Gastritis, Dysautonomia

Altair
Regular Member


Date Joined Aug 2013
Total Posts : 39
   Posted 4/23/2014 9:31 AM (GMT -6)   
When I had my consult, the surgeon and I had a discussion about:

1. What the surgery would do and how long it would take

2. How he would perform the procedure (lap in the first instance, open if needed, Nissan or Toupet or other modification depending on what suited my circumstances best - we had a chat about my medical history, symptoms, and previous test results)

3. The risks of having the surgery (fundoplication specific risks, general surgery risks, possibly not having total symptom relief despite having the fundoplication)

4. The benefits of having the surgery (symptom control, fixing the mechanical LES defect, no need for lifelong medication, Barrett's risk)

5. How long recovery would be (days at hospital, days at home, time of work, common and uncommon symptoms that could occur after surgery, when to see a doctor for suspected complication)

6. What my post-operation diet would be (step-by-step diet progressing from liquids to soft to hard food, foods to definitely avoid, liquid formulations of my routine medication ordered - make sure this applies to pain relief when you're discharged as well! I was discharged with pills that were really difficult to take!)

I had Google'd him before the consult to see how many procedures he had done, but if I couldn't find the information on my own, I would have asked that as well.

I think it can also be a discussion about whether the surgery is right for you or not (or if you prefer to wait or try more medication/lifestyle modifications first) , but mine was apparently really indicated and I was advised it was ultimately my choice, but they really thought I needed it.

Post Edited (Altair) : 4/23/2014 9:34:55 AM (GMT-6)


1039smooth
Veteran Member


Date Joined Sep 2013
Total Posts : 2053
   Posted 4/23/2014 4:00 PM (GMT -6)   
Brianala,

Goodness. It sounds like you're a good surgery candidate to me. Some here swear by a manometry or pH study. Considering my situation, I didn't really need those, but I also didn't report troubles swallowing. I would ask your potential surgeon about their stance on it. I came here, told people I didn't have those, and then everyone freaked out.

Hopefully the surgery will get you off PPIs. Long-term, they're not necessarily good for you. You may want to ask your chances of being removed from taking them, however, you may not be able to tell until after surgery. I haven't been on anymore. I started with Omeprazole and then went to Dexilant.

There were a few instances where I'd wake up with bad GERD before surgery and there was no fixing that burn, but it didn't happen too often. It's a God awful feeling. The only similar situation was laying down too fast after drinking some grape juice. My surgeon's assistant says to cut yourself off from eating by 8:30. That's what she does for herself as well.

Altair gave some awesome advice.

John

Brianala
Regular Member


Date Joined Apr 2014
Total Posts : 91
   Posted 4/24/2014 8:32 AM (GMT -6)   
Altair, thanks so much! This is wonderful information!

When I write it all out, yeah, it does seem like it's a pretty obvious decision. I still keep second-guessing myself, but I'm about 85% certain that it's the right decision. Thanks for posting your story here, John. I'm sorry your experience hasn't been the best - but what you've shared has been very helpful!
Hiatal Hernia, Esophagitis, Gastritis, Dysautonomia

1039smooth
Veteran Member


Date Joined Sep 2013
Total Posts : 2053
   Posted 4/24/2014 10:21 AM (GMT -6)   
Glad to help.
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