My story of a crappy uncaring doctor, occasional GERD, and a lousy paraesophageal hernia

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amazonblonde
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Date Joined Jun 2013
Total Posts : 7
   Posted 6/29/2013 8:46 PM (GMT -6)   
about six months ago I had a gigantic chocolate milkshake that gave me the worst heartburn imaginable. After a few days, I called the doctor and he said to take OTC Prilosec for a month. That worked pretty well. I had been having trouble swallowing for quite awhile, several years really, but just thought I needed to chew better, eat slower. I also wake up at night a lot, coughing, but I thought maybe I had swallowed a dust mote or something. (Although my house is not THAT dusty.) Easter Sunday, during dinner, my food got seriously stuck in my esophagus and I erupted all over the table. It was just awful....I was gasping and coughing and vomiting. My family was horrified.

That scared me into going to the doctor. He ordered an endoscopy and 40mg prescription Prilosec. I had a Schatzki Ring that had to be cut open and they said I had a 5 cm haital hernia. Went back to the doctor so he could tell me about the test results - that I already knew because they post them online - and when I told him I have a hiatal hernia, he said "So?" and that it is no big deal at all; very common. Why was I even worried about it? We had a huge argument until he finally agreed to give me a referral to a GI doctor.

My 86-year old mother died two years ago from complications of GERD and Barrett's esophagus but it never occurred to me that *I* could have a similar problem. But all of a sudden, it looked like I might be following her down the same path and that was no bueno.

I finally saw the GI doctor. She ordered more tests.....barium x-rays and a motility test. Then it was back to the GI doctor to get a referral to a surgeon. Met with the surgeon this week who said I have a weak esophagus that's all twisty and weird and maybe too short and a Stage III paraesophageal hernia that's now 7 cm. Most of my stomach is in my chest cavity. This could explain a lot! Bloating, a feeling of having something caught under my rib cage all the time, shortness of breath, uncomfortable trying to find a position to sleep in at night. Misery. I don't have that much reflux anymore - although I'm still on the hated Prilosec - but I feel awful most of the time.

I am currently awaiting a date for surgery, (soon!) and hoping my stomach does not strangulate in the meantime. I am so angry with my PCP that I am changing doctors after 14 years. I've been reading threads on this forum and although I have some trepidation regarding this surgery, I most certainly am not prepared to live the rest of my life with this much discomfort. Onward and upward, the sooner the better!

I need to have my stomach pushed back down where it belongs, a hernia repair using mesh for reinforcement, perhaps have a section of my stomach removed to build a longer base for my esophagus in case it really has shortened, and a partial wrap due to the inherent weakness already present in my esophagus. I'm encouraged, after reading these posts, that perhaps I'll be able to burp again someday after this wrap is done. I'm excited at the prospect of perhaps losing weight because I've gained 15 in the three months I've been on Prilosec, mostly because I feel hungry all the time. I'm 58 and this is not my first rodeo with surgery so I know that getting better is a process not to be rushed. Still, I intend to push forward as much as possible.

I'm happy to have found a forum of other people who have had this done and can provide helpful advice. Bring it on! :-)

opnwhl4
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Date Joined Dec 2008
Total Posts : 4961
   Posted 6/29/2013 10:26 PM (GMT -6)   
amazonblonde

Welcome to Healing Well!

Thank you for sharing your story with us. We have several members who have had your type of hernia. Alcie also had the short esophagus.

I am quite familiar with using part of the stomach as an esophagus as I almost had my esophagus removed after a tear that wouldn't stop leaking.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5029
   Posted 6/30/2013 7:39 PM (GMT -6)   
I didn't think anyone used mesh anymore. It has a reputation of cutting into the esophagus. Better check on that. Maybe get a second opinion from a more experienced surgeon. My surgeon said they use the patient's own tissue instead of mesh.

Paraesophageal hernias are really serious, even life threatening, and not within the expertise of most gastro surgeons. I had a whole cardio-thoracic team of university surgeons and the surgery took about 5 hours. This isn't just abdominal surgery!

I'm one of those people who had my stomach pushed into my chest in an accident. I'd had GERD for a long time (got the refluxing stopped when I found out it was triggered by food allergies), but I knew immediately after being told that what felt like a heart attack was the giant hernia was going to need surgery.

With a short esophagus you may need a Collis gastroplasty (Collis-Nissen). Discuss this with your surgeon. They take a bit of stomach and make it into an esophagus extension. Mine was just long enough that when they "took it down" (cut the tissues holding it up), it extended barely below the diaphragm. They have to reach in around your heart - in the mediastinum.

I also have a weak swallow so I needed the Toupet partial wrap. I'd never have been able to swallow past a full Nissen.

If you need to lose weight do it now. The fat you have under the skin shows you a tip of the iceberg idea of how much fat you have in the mediastinum crowding your heart. I read in the operative notes about them having to take out a large amount of fat. It was embarrassing.

Now that I've scared you, try to calm down. It's lifesaving surgery and you'll be much better off for it. I'm so thankful I had it done. I can burp now, although I couldn't for a few months while things were swollen. I can't vomit, so I have to be careful to keep anti-nausea meds on hand. No more reflux, no PPIs. Of course I still can't eat foods that were my food triggers before. Allergies and sensitivities don't get cured by surgery.

amazonblonde
New Member


Date Joined Jun 2013
Total Posts : 7
   Posted 7/13/2013 7:36 PM (GMT -6)   
I had my surgery on Tuesday. It wasn't as bad as originally thought because my esophagus was long enough. I got a partial wrap because of weak motility. I could burp right away, which was a huge relief.

I don't even know if they used mesh or not. My surgeon is a top notch guy at one of the leading university hospitals in the USA, co-director of their Minimally Invasive Surgery Center, so I'm assuming he knows what he's doing. I will ask about it at my follow up appointment in a few weeks. He did say I would have five incisions, and in fact I have seven. He said I had "white coat hypertension" and sent my home from the hospital late in the day, the day after surgery. Maybe that was too soon, I don't know. I have had ridiculous diarrhea ever since early afternoon, the day after the surgery. I haven't read anything about that on this message board. Anything I "eat" goes through me immediately, and violently. It's exhausting.

I must be feeling better because I'm hungry and want some food, and I'm bored. I am having a lot of trouble sleeping, and that's making me very tired. Overall, I'm glad I can quit worrying about my stomach killing me. And I've lost 12 pounds in the past week. I wasn't ridiculously overweight to begin with, so I was not too worried about losing a bunch of weight prior to the surgery. But my heart and lungs are adjusting to their new, more roomy quarters. However, my stomach does not seem to be that happy in its new location. Hoping that will change sooner, rather than later.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5029
   Posted 7/13/2013 8:28 PM (GMT -6)   
Great to hear from you again! I'm so glad they were able to pull down enough esophagus so you didn't need the extra procedure. I'm really surprised they sent you home quite so soon, but that's the way insurance goes, and you must be young and in good shape.

My non-doctor advice: Call the doctor and ask to have a prescription for something for the diarrhea. I like the new Donnatal formulation, but Lomotil is good too. Only take it as long as you absolutely have to.

Don't worry about the extra incisions. In a year or so they will be invisible if they taped them.

I would stick with the liquid diet for a while, mainly because you had a bigger surgery than just a fundoplication. Some patients start with soft foods right away, but I wouldn't with all you had done. Don't worry about the weight loss unless it gets bad. I just ate a couple of tablespoonsful every time I could swallow.

You'll have swelling which will probably get worse for a while, but then it will get better. Take it easy, watch the box, read, relax, post. I'm sure you had instructions.

So happy for you!

TheSiXness
Veteran Member


Date Joined May 2012
Total Posts : 541
   Posted 7/13/2013 8:30 PM (GMT -6)   
Great! Good for you! Hopefully everything heals up well.
-TheSixness-

amazonblonde
New Member


Date Joined Jun 2013
Total Posts : 7
   Posted 7/13/2013 9:45 PM (GMT -6)   
I did call the surgeon's office yesterday. They advised me not to take anything for the diarrhea so it continues. I guess I'm going to have to "eat" way less at a time....just a swallow or two but more frequently.

I'm not young....I'm 58. The dr. did say that the swelling would be worst on days 10-14 so I'm waiting for that. I would feel a lot better about life in general if my stomach wasn't a raceway. :P

GC1pink
Veteran Member


Date Joined Nov 2012
Total Posts : 532
   Posted 7/14/2013 3:14 AM (GMT -6)   
God bless, you've had a really tough time of it! I hope things get better very soon, and that you are quickly back to your old self!

amazonblonde
New Member


Date Joined Jun 2013
Total Posts : 7
   Posted 7/14/2013 6:49 AM (GMT -6)   
After doing some reading, I've decided I most likely have the immediate kind of dumping syndrome, something I'd never even HEARD of before. My surgeon is on family vacation this upcoming week, so I'm calling my GI doctor first thing tomorrow. This CANNOT be good for me. I can only hope that it is a temporary affliction, due to the radical rearrangement of my stomach and the stupid liquid diet, otherwise my life will certainly never be the same and that is as depressing as it can be.

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 7/14/2013 10:42 AM (GMT -6)   
amazonblonde

Dumping is very common after this surgery. When they inflate your belly the gas puts pressure on your bowels and they react to that and the surgery itself causes dumping while things are healing.

It's not a permanent issue, but does take some time to go away. With the liquid diet it is going to be worse, but once you can eat soft food add fiber and it will bulk up your stools.

Sugary and greasy foods will cause this later on also.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11

amazonblonde
New Member


Date Joined Jun 2013
Total Posts : 7
   Posted 7/14/2013 12:15 PM (GMT -6)   
Thank you, Bill! That makes me feel better. If this is temporary, I can get through it, no matter how gross and uncomfortable it is to endure. Nobody in the surgeon's office or the hospital mentioned this to me at all. And when I called on Friday, they acted like I was crazy.....said there must be something wrong with me and they would need a culture! If it's common, you'd think they'd heard of it before. Losing confidence in the surgeon's office, although I still think the surgeon did a good job. It's a university medical center full of residents and interns, who handle the phone inquiries. Sadly lacking, unfortunately. :P

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 7/14/2013 12:46 PM (GMT -6)   
The issue of the surgeons or their staff not knowing what the recovery is really like is 1 of the major reasons some of us have been here so long. It amazes me how little they know or tell their patients about the recovery.
So many believe this surgery is just like most other lap surgeries and after 2 to 3 weeks you should be good to go. That is just when the recovery becomes the toughest due to peak swelling.

Be very patient with your recovery and diet. When you do advance your diet do so very slowly and be sure to eat small and frequent meals. Something like 1/4 to 1/2 cup 4 to 6 times a day depending on how your stomach feels. It will let you know if you go too fast. If you do just back off your diet a bit for a few days and try to advance it again. This is a big complaint. When the wrap gets irritated it will make you feel like you are refluxing, but usually it's just irritated and swollen. That keeps it from working as well as it would if it wasn't irritated.

During the 1st 6 months about any strange or weird issues can come up. Anything from feeling like reflux to incision pains to dumping. There are some issues that seem to happen about to everyone and some that only hit certain people.

Take Care,
Bill
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11

amazonblonde
New Member


Date Joined Jun 2013
Total Posts : 7
   Posted 7/14/2013 1:01 PM (GMT -6)   
Bill, I know I'm supposed to stick to the liquid diet for at least two weeks, but I cheated today and just ate some KFC mashed potatoes and gravy for lunch.....just a tiny little bit and I didn't drink any water with it other than just a sip when I was finished. I need to see if I can keep something in my stomach. I was already having diarrhea from the liquid diet before I even had the surgery. All that sugar can't be good for me (juice, Jello, sorbet, popsicles, etc), and they said no dairy because I tend toward being lactose intolerant anyway. My wrap is the 180 kind so I've been able to burp since Day 2. I figure if they can make me swallow that much barium on Day 2, I ought to be able to eat some runny potatoes by Day 5. So far, so good. I'm down 13 pounds in seven days and that can't be good for me either.

Keep your fingers crossed! I will, too!

Diane

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 7/15/2013 12:45 PM (GMT -6)   
Diane,
 
I would not be to concerned about the 13 pound weight loss at this point as long as you can keep the diarrhea in check.  As for "the sugar not being good for you" all the products you mentioned except sorbet, which is not a product I use, are available in a sugar free option.
 
Most of your body is made out of water, and of course, fat and muscle. It's possible to see the scale go down by five to 10 pounds in one week, but  that's usually not real fat loss; it's water.
 
I would suspect your Dr. will want to watch your electrolyte lab values closely.
 
Bill is an expert on knowing this surgery and has learned patience through his many recoveries.  I am glad he has responded to you as I have learned so much from him.
 
Remember to be your own best advocate and ask for what you need.
 
Kindly,
Kitt
 
 
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

amazonblonde
New Member


Date Joined Jun 2013
Total Posts : 7
   Posted 7/18/2013 10:24 AM (GMT -6)   
My doctor said the swelling would be worst in days 10-14. I think I'm at day 10. It feels like somebody rolled up a beach towel and stuffed it up underneath my rib cage. Any medications I take are getting momentarily stuck in my throat. Is this about what I should be expecting?? I'm kind of scared, not knowing. And my surgeon's office is useless in disseminating any useful information.

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 7/18/2013 3:38 PM (GMT -6)   
amazonblonde


Yep, you're hitting the peak swelling and lots of weird issues can pop up until it goes down. How long that takes depends on how your body heals.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11
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