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Posted 12/11/2014 6:05 PM (GMT 0)
Hello there,

I’m new to Healing Well and have finally decided to post after a few months of reading what others have shared. My story:

In August 2014 I had a routine colonoscopy and endoscopy. The colonoscopy was recommended due to a family history of cancer. The gastroenterologist specialist also suggested an endoscopy as I had been very low in iron. He figured it made sense to do this while I was in for the endoscopy. My results for the colonoscopy were fine but the endoscopy showed, much to my surprise, a small hiatal hernia and Barrett’s esophagus. To my knowledge I had no acid reflux symptoms but must’ve been suffering from silent reflux. Within a month of having the endoscopy (September 11 to be precise) I began to have severe symptoms. Bloating, burning, and excessive foam coming up from my stomach. Because of the concern with Barrett’s I started PPI medication with has only really taken the edge off the burning. I still have excessive foam coming up all day whether I’ve eaten or not and always feel bloated. At night I’m lucky to get maybe 4 hours of sleep due to the fluid coming up and burning. In addition to the PPI (Dexilant) I’ve also been instructed to take an additional 300mg of Zantac over the course of the day (24 hour period). I’ve lost 30 pounds since Sept and concerned about losing too much weight. This is due partially in trying to ease symptoms (I was overweight) but mostly due to inability to eat very much and lack of appetite. The specialist has said that I’ve done everything I’m supposed to be doing and has now referred me to a cardiothoracic surgeon and I’ve begun the required tests to see if I’m a candidate for surgery. I’ve had the Barium swallow which confirmed the small hernia and moderate acid reflux and will be having the 24 hour ph and manometry tests due in early January. As far as surgery goes I’ve been told it could take 6 months to 3 years before I can have it done due to wait times.

Needless to say I’m simply devastated with what is happening to me. It is like a nightmare as I’ve had no real obvious symptoms prior to September. I turned 50 this year and I’ve always been relatively healthy (i.e no medications). I don’t smoke, rarely drink and eat a fairly balanced diet. Obviously something was happening as I do have a hernia and Barrett’s. I am concerned thought that having the endoscopy aggravated my condition as my symptoms are so extreme now. Like a faucet that has been turned on. I constantly have fluid/foam in my mouth and I already feel the effects on my gums and teeth.

This is completely blindsided me. I’m looking for support. I’ve already found this forum to be very helpful (particularly the information on successful surgeries) and was wondering if there were any members located in the Vancouver BC area. It would be great to connect with others in the same area as I find the practices on how to deal with this issue vary from country to country and province to province.

I apologize for the length of this post but thank you for listening.
Posted 12/11/2014 8:10 PM (GMT 0)
Hello Kathy999!

Welcome to the forum! Given your situation, you're definitely in the right place. You'll read lots of stories on here...some good and some bad. Please ensure that you keep an open mind when reading as some of them can be scary and are atypical.

Regardless of what you read here, always follow your doctors instructions. No exceptions!

To give you the condensed version of my story, up until my surgery, I'd been a life-long (I'm in my 40's) sufferer of incredibly painful reflux. My endoscopies showed lots of erosion, severe Barretts, and grade 4 esophagitis and gastritis. I was sleeping sitting up and anything I ingested caused me to have reflux. Even water and brushing my teeth. I was on Protonix 4x's a day with little to no relief.

All of the scores from the manometry and 24hr pH study were off the charts. My Nissen Fundoplication surgery was complicated by significant scarring and inflammation. I spent 3 days in the hospital post-op and had a relatively uneventful recovery. Almost two years later, I feel fantastic. Barretts is completely gone and the esophagitis and gastritis are completely healed. There IS hope!

While you go through the motions of all the testing, etc. you're really in symptom management mode. What you'll need to do is really manage your diet, activity, and medications. It helps to keep a food diary so that you can evaluate what types of food aggravate your reflux symptoms. Eating smaller, more frequent meals will help control the acid. I found it handy to keep crackers around if I felt it acting up. Plain bread was my friend for a long time as it helped soak up the acid and keep it at bay. How/when you take your medicines will be crucial. And, if they don't work, then you need to communicate that to your GI so that they can be adjusted or changed out for something different. It might be a little bit of trial and error until you find the right mix for you, but your GI should be able to help you manage that.

For your teeth, keep water handy and ensure that you're using a fluoridated mouthwash regularly to keep your teeth strong and the bacteria in your gums at bay. If you feel lots of foam in your throat, don't just spit it out, but rinse your mouth out with water to get the acid out and off your teeth.

Some people found herbal remedies that work for them. I wasn't as successful in finding one that worked for me but that doesn't mean you won't. We're all different that way. :)

In the meantime, you'll need to be your biggest cheerleader. Don't accept what your doctors say if it doesn't make sense. Ultimately they are there to help you. If whatever they tell you isn't working, then make sure they know and ask for changes to be made to your treatment plan.

Hope this has been of some help. We're all happy to answer questions here and feel free to be as graphic as you need to. Likely, at least one of us has encountered it.

Take care and be well!
-TonyG-
Posted 12/11/2014 8:17 PM (GMT 0)
Hi Kathy

Is quite peculiar that your reflux started so soon after finding out about the Barrett's esophagus, but it doesn't really change anything. The first thing I'd suggest is looking at your diet to make sure you aren't eating any common trigger foods, like peppermint, chocolate, caffeine. You can find some good guides on Google, but I think you may have done this already from the sounds of it.

Id also suggest sleeping on a wedge or even sitting up to help with night-time reflux. This feels very awkward at first but you will get used to it and it will feel very comfortable eventually. I used to be someone that could only sleep in one position, but I eventually adjusted to sleeping very inclined and on my back. I'm sure if I did it then anyone can.

Your symptoms seem quite typical which is good because it means surgery is more likely to give you relief. Have they explained your options? There are at least 2 different procedures to fix this, one is decades old called the Nissen Fundoplication but is quite major in that it rearranges the top of your digestive track. Other newer surgeries like Linx have had some success and are less invasive, but don't necessarily have the track record.

6 months is a very long time to wait for the surgery, and 3 years is beyond ridiculous! I hope it wont be that long for you, but not being in the US can't really advise how to speed things along. Hopefully others can.

Lastly I'll give you this tip which I did but I have no idea if it is safe or advisable so word of warning!
I managed to go from having a very large hiatus hernia to none at all using a couple of simple techniques. Firstly I would drink some warm water, then go onto tip toes and then fall down hard onto my heels. The aim is to get your stomach, which should be heavy with the water, to pull back down to where it should be. I would repeatedly do this every morning.

The second thing I tried is a self-massage to push the stomach down with your hands. I looked up the technique on youtube, so yeh... this is far from a medically approved thing. Like I said, use at your own risk!

Also you should note that the above didn't actually cure my reflux, though it did my large hernia. Hiatus hernia tend to slide up and down so even if you do get rid of your hernia doing this it will probably still come and go throughout the day.
Posted 12/11/2014 8:24 PM (GMT 0)
I forgot to ask, did you start the PPIs before or after you started to have reflux?
Posted 12/12/2014 2:39 AM (GMT 0)
Hi Kathy,

Welcome to Healing Well! You're definitely in the right place. This forum is great, and there are lots of really caring and helpful members, as you can see by the responses you've already received.

You've been given some great advice, so I'll just add a couple things that come to mind. First, if you're taking a PPI, it's very important to take it correctly to get the full benefit. Here's a very informative document that can provide you with directions. www.practicalgastro.com/pdf/January07/Jan07FrankArticle.pdf

It could help you to elevate the head of your bed about 7-8" if that's possible with your type of bed frame. Otherwise, purchase a good wedge, which can also be helpful. This will help keep the contents of your stomach where they belong because of increased use of gravity. Using a stack of pillows is not a good option, as it can bend your body in a way that can increase pressure on your stomach and create more reflux.

My doctor had me take 300mg Zantac at bedtime before my surgery. His big concern was to keep my reflux in control at bedtime, to avoid migrating acid while laying down. Just a thought.

I hope your testing goes well, and that your surgery is prioritized and can be done soon, if it is indicated.

Hang in there!
Best wishes,
Denise
Posted 12/15/2014 10:09 PM (GMT 0)
Thank you Tony, Andy and Denise for your replies, supportive feedback and tips. I'm so glad I've finally decided to post and to hear of your stories of success! My apologies for replying sooner. I've been having a lot of issues with my computer.

Since I started having noticeable symptoms (approximately a month after my endoscopy) I've raised the head of my bed almost 8 inches and tried a number of alternative remedies:

1) Slippery elm bark powder
2) DGL
3) Aloe Vera Juice
4) L-glutamine powder, Calcium citrate, Magnesium citrate
5) Visceral Manipulation (once - not sure if I would do this again as I'm concerned about doing more damage)
6) Homeopathy
7) Probiotics
8) Digestive Enzymes
9) Warm water jumping technique (as you've described Andy)
10) Self-massage

I feel like I'm all over the map here but desperate to try to "cure" myself. I am starting to come to terms that surgery may be my only option.

Note to Andy. Yes it does seem peculiar that I started having very noticeable symptoms within a month of my endoscopy. As mentioned I had originally gone for a colonoscopy and the specialist suggested I have the endoscopy as I was low in iron. Looking back now I realize that prior to the procedure I probably had some symptoms more related to silent reflux (i.e dry cough, plugged ears) as well as some in frequent deep hiccuping. There was obviously something going on as I've been diagnosed with a small hiatal hernia (up to 2 cm) and Barrett's. I wondering though whether the endoscopy aggravated something to cause my current symptoms or perhaps it is just a coincidence. I have fluid coming up 24/7. And I started PPI's after these symptoms began.

I'm located British Columbia, Canada so if you know of any British Columbian's that have had the Nissen Fundoplication surgery it would be great if I could connect with them.

Thanks again for your feedback.
Posted 4/18/2017 2:33 AM (GMT 0)
Hi Kathy,

I hope that you are still following this forum. You mentioned that you are in the Vancouver, BC area. I, too, live in BC and if I have the Nissen fundoplication which is likely it will probably be in either Victoria or Vanacouver. I live on northern Vancouver Island. In November of last year I had an endoscope and was diagnosed with very severe esophagitis. I was prescribed a PPI and ranitidine and had a repeat endoscopy in mid March (four months later). The medication was not working although it did help my symptoms. Last week I had manometry and pH impedance tests at Victoria General. When the results come back I will probably be referred to a surgeon in either Vancouver or Victoria. Have you had your surgery and, if so, do you mind sharing your experience? My GP isn't very familiar with the procedure but has let me know that he will find out the best surgeon for me.
Regards,
Sue
Posted 4/18/2017 12:26 PM (GMT 0)
Since it might be a while before you find out if you are a candidate, and when you can actually have surgery, I would suggest starting a food journal. It might help to try and pinpoint what your trigger foods may be. Are you following a strict GERD-friendly diet? You might ask your doctor about switching to a different PPI, which may work better for you. I now a lot of people who have great success with Dexilant, but it did nothing for me. Medication can reverse the damage of Barrett's, and your hernia is relatively small, so switching medication might help you a lot. Believe it not, your weight loss will only help you. You have lost about 5 lbs a month, that's not too bad. If you can get the symptoms and the proper diet, you should get some relief, a balanced diet might not be enough. Use the search engine to look for the proper diets for acid reflux/GERD.

Sharon
Posted 4/18/2017 5:01 PM (GMT 0)
Hey, i'm in Vancouver, and while I haven't had the nissen, I have been doing research on it and you should take a look at Dr. John Yee perhaps. He's a highly rated cardiothoratic surgeon but I am not sure on how many nissen's he has done.

Nessie12 said...
Hi Kathy,

I hope that you are still following this forum. You mentioned that you are in the Vancouver, BC area. I, too, live in BC and if I have the Nissen fundoplication which is likely it will probably be in either Victoria or Vanacouver. I live on northern Vancouver Island. In November of last year I had an endoscope and was diagnosed with very severe esophagitis. I was prescribed a PPI and ranitidine and had a repeat endoscopy in mid March (four months later). The medication was not working although it did help my symptoms. Last week I had manometry and pH impedance tests at Victoria General. When the results come back I will probably be referred to a surgeon in either Vancouver or Victoria. Have you had your surgery and, if so, do you mind sharing your experience? My GP isn't very familiar with the procedure but has let me know that he will find out the best surgeon for me.
Regards,
Sue

Posted 4/18/2017 5:29 PM (GMT 0)
Hi,

Thanks to both of you for the suggestions. I will check out Dr. John Yee. I hope to hear about my recent tests in a couple of weeks. I do have a medium to large hiatus hernia as well and the technician who did the manometry and pH impedance test said that she could feel the back pressure from the hernia when she was inserting the probe. I have a problem with PPIs and have tried two. If I take a higher therapeutic dose I get numbness in my mouth which is considered a serious side effect and requires a reduced dose. I also donated a kidney last year and with the recent evidence of possible kidney damage from PPIs I would like to avoid taking them. I'm almost positive that surgery is my only option.

Regards,
Sue
Posted 4/19/2017 12:59 AM (GMT 0)
Curious, how old are you and how big is your HH?

I'm 23 and got a 4cm sliding and its really bothersome even with PPI (40mg a day).

I dont want to take PPIs forever because of all the side effects and such. Im scheduled for an endoscopy in July but not sure what to do next.

Nessie12 said...
Hi,

Thanks to both of you for the suggestions. I will check out Dr. John Yee. I hope to hear about my recent tests in a couple of weeks. I do have a medium to large hiatus hernia as well and the technician who did the manometry and pH impedance test said that she could feel the back pressure from the hernia when she was inserting the probe. I have a problem with PPIs and have tried two. If I take a higher therapeutic dose I get numbness in my mouth which is considered a serious side effect and requires a reduced dose. I also donated a kidney last year and with the recent evidence of possible kidney damage from PPIs I would like to avoid taking them. I'm almost positive that surgery is my only option.

Regards,
Sue

Posted 4/19/2017 1:18 AM (GMT 0)
Hi,

I'm 69 and have had GERD symptoms for just over 2 years. I had a large retro-sternal goitre removed from my thyroid. It had pushed my esophagus over to the right and it may have contributed to the beginning of the of the hiatus hernia as I had no symptoms prior to the thyroid surgery. I think that my hernia is 5cm but don't have the endoscopy results with me.

I can understand why you wouldn't want to be on medication for the rest of your life.


Where do you live? I belong to a Nissen fundoplication group on Facebook and have noticed that the medical systems in different countries handle GERD and its complications differently. I think that Canada is quite conservative and doesn't do the surgery as often--don't have any statistics but just get that feeling. The doctor who did my two endoscopies has been very good and after the second endoscopy showed no improvement after 4 months of medication referred me immediately for more testing (pH impedance and manometry). People complain about wait times in Canada but I had my testing in four weeks.

By the way, I did a quick search for Dr. John Yee. He sounds excellent and does do esophageal surgeries. I will mention him to my GP as he's already said that if I need surgery I should get a very experienced surgeon.

Regards,
Sue
Posted 4/19/2017 2:34 AM (GMT 0)
I live in the greater Vancouver area, Burnaby to be precise. I think we are conservative, two doctors I've seen have said surgery isn't successful and don't recommend it.

It did take me a month to get m barium, and I have my endo in July so wait times do vary. I guess I'm currently in the process of getting things checked out. The way my hernia affects me is weird. The best example is you take a straw, and you push the end up and you get a shortened straw with an indent. That's how it feels and I always feel my stomach, not in the right spot, and it makes it difficult to workout.

Keep me updated! As we are in the same city I would love to know what another person in the same vicinity of me is doing and how their treatments are coming along.

Nessie12 said...
Hi,

I'm 69 and have had GERD symptoms for just over two years. I had a large retro-sternal goitre removed from my thyroid. It had pushed my esophagus over to the right and it may have contributed to the beginning of the of the hiatus hernia as I had no symptoms prior to the thyroid surgery. I think that my hernia is 5cm but don't have the endoscopy results with me.

I can understand why you wouldn't want to be on medication for the rest of your life.


Where do you live? I belong to a Nissen fundoplication group on Facebook and have noticed that the medical systems in different countries handle GERD and its complications differently. I think that Canada is quite conservative and doesn't do the surgery as often--don't have any statistics but just get that feeling. The doctor who did my two endoscopies has been very good and after the second endoscopy showed no improvement after 4 months of medication referred me immediately for more testing (pH impedance and manometry). People complain about wait times in Canada but I had my testing in four weeks.

By the way, I did a quick search for Dr. John Yee. He sounds excellent and does do esophageal surgeries. I will mention him to my GP as he's already said that if I need surgery I should get a very experienced surgeon.

Regards,
Sue

Posted 4/19/2017 2:50 PM (GMT 0)
Yes, it's a great idea to keep in touch. I will post again when I see the doctor after the results of the pH impedance and manometry tests come back.
Posted 4/30/2017 7:41 PM (GMT 0)
Hey Nessie12!

Any new updates so far?

Nessie12 said...
Yes, it's a great idea to keep in touch. I will post again when I see the doctor after the results of the pH impedance and manometry tests come back.

Posted 4/30/2017 10:31 PM (GMT 0)
Not yet--I was told it would take at least 3 weeks for the tests to be interpreted. It's only been a little over 2 so far. I'll wait until four weeks and if my GP hasn't called I'll call his office. Waiting is hard.
Posted 5/2/2017 3:37 AM (GMT 0)
Ah fair enough. I guess i'm being anxious for your results too ahaha.

Talk to you soon then!

Nessie12 said...
Not yet--I was told it would take at least 3 weeks for the tests to be interpreted. It's only been a little over 2 so far. I'll wait until four weeks and if my GP hasn't called I'll call his office. Waiting is hard.

Posted 5/25/2017 4:02 PM (GMT 0)
Hi,

The preliminary results of my tests finally came in and I saw my GP yesterday. The manometry results showed that I have ineffective esophageal motility. Don't know how bad it is. The 24 hour pH study showed a lot of acid reflux but no non-acid reflux. Here's a summary: percentage time spent in acid reflux 27.4%, DeMeester scale 129.7 (normal is less than 14.72), Symptom index for acid reflux heartburn 95, cough 66.7, burp 71.4. My GP told me to call the surgeon who did the endoscopies to get a follow up appointment. The bottom line is that I have bad reflux and severe erosive esophagitis. Now the decision has to be made about what to do. In the meantime I plan to lose weight and make some diet changes which I already have started. Still thinking about giving up coffee as I really enjoy my two cups in the morning. I started back on ranitidine (Zantac) after the testing as it does help with symptoms. I will update when I see the specialist who did the endoscopes.

Post Edited (Nessie12) : 5/25/2017 1:12:40 PM (GMT-6)

Posted 5/25/2017 4:24 PM (GMT 0)
Nessie, you may want to look into organic coffee. I have seen some posts here that people are able to tolerate it much better, something to think about.

Take care.
Posted 5/25/2017 4:37 PM (GMT 0)
Hi Susie,

I do drink a very good organic coffee. I love the ritual of that first cup of coffee in the morning. I've already given up most of the acid foods and hot and spicy food, all of which I really miss. Cooking different ethnic foods is a hobby of mine so life is a little more boring now.

Thanks for your suggestion as I didn't know that organic coffee might be better. Coffee doesn't give me heartburn anyway.

Regards,
Sue (Nessie12)
Posted 5/26/2017 7:02 AM (GMT 0)
So i assume the fundoplication is what is going to occur? Who was your surgeon who did the endos? I have one coming up at St Pauls, July 11th. Pretty nervous about it. Did you get referred to or speak with Dr John Yee?

Good luck on the progress, i'm sure you'll be fine! Looking forward to hearing more!

Nessie12 said...
Hi,

The preliminary results of my tests finally came in and I saw my GP yesterday. The manometry results showed that I have ineffective esophageal motility. Don't know how bad it is. The 24 hour pH study showed a lot of acid reflux but no non-acid reflux. Here's a summary: percentage time spent in acid reflux 27.4%, DeMeester scale 129.7 (normal is less than 14.72), Symptom index for acid reflux heartburn 95, cough 66.7, burp 71.4. My GP told me to call the surgeon who did the endoscopies to get a follow up appointment. The bottom line is that I have bad reflux and severe erosive esophagitis. Now the decision has to be made about what to do. In the meantime I plan to lose weight and make some diet changes which I already have started. Still thinking about giving up coffee as I really enjoy my two cups in the morning. I started back on ranitidine (Zantac) after the testing as it does help with symptoms. I will update when I see the specialist who did the endoscopes.

Posted 5/26/2017 2:58 PM (GMT 0)
Hi,

Don't know yet what will be recommended. My GP wants me to go back to the surgeon who did the endoscope in Campbell River, Dr. Piotr Juszkiewicz, to discuss the options. I imagine I'll have to wait for that appt. I don't think he does the fundoplication surgery. I would likely be going to Vancouver or Victoria if I'm considered a good candidate. The manometry test showed that I have impaired swallowing which I know can mean that only a partial wrap is recommended. Depends on how bad it is. I will mention Dr. John Yee when I see Dr. Juszkiewicz. I have family in the Lower Mainland so having surgery in Vancouver is no problem. Let me know how you do with your scope. I''ll update once I have more information.
Posted 5/30/2017 2:20 AM (GMT 0)
Hi I'm new to this website. I have had problems with HER for many years now. I will be having my Nessin Fundoflication and hiatal hernia surgery on June 5th at 715am Monday morning. To be honest I'm somewhat nervous about everything. I have read so much information concerning the recovery stage on weight loss, not being able to take in that much food, pain, nausea and vomiting, diarrhea, and the recovery time from 2 to 6 weeks or longer. My brain is on over load!!! Help me please!

Post Edited (Ltcwalker1) : 5/30/2017 7:20:03 PM (GMT-6)

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