Good Morning fellow sufferers!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

zeldagoblin
Regular Member


Date Joined Mar 2010
Total Posts : 204
   Posted 3/7/2010 3:42 AM (GMT -6)   
Hello everyone! My name is Liz, and I have just stumbled across this forum.

A bit about me:

I am a 35 year old teaching assistant living in the UK, with 2 amazing, adorable sons and a lovely, supportive, long suffering and hilarious husband. I am learning British Sign Language at level 2, and would love to be an interpreter one day! I love movies, psychology, children, and most of all, hula hooping!

I have always had "stomach problems" since being a small child, I remember my mother getting me to lie with a cushion under my stomach when I was as young as 4, to ease stomach pains. I had some recurrence in my teens, where I had many visits to specialist, and even had barium Xray, but a cause was never found. My whole life I feel I have had food getting stuck in my chest, and had to bang my chest to get it to move.

Jumping forward to my first pregnancy, acid heartburn was excruciating. I lived on milk and Gaviscon. My 2nd was even worse! Well, cutting a long story short(er), for 3 years I have found my generally good singing voice was becoming unreliable, my range was reduced, and my overall speaking voice was a little hoarse. I went back and forth to my GP, who prescribed labeprazole, which did nothing for the voice, but eased the burn a little. I was taken off that, but then last summer I started to feel like I had a lump in my throat. At first I thought it was a virus, but after 3 weeks I got worried and went to the GP. I had bloodwork done, and apart from a mild case of anaemia things were all ok. I was put on rabeprazole 20mg, but it didn't help at all. So I had to keep going back and insisting it was hell, til finally at Xmas I was referred to an ENT. I saw him New Years Eve, and after an examination he determined my vocal chords were bowed and referred me on to speech therapy, and doubled my rabeprazole, and put me on 4x10ml of Gaviscon advance daily (yuck!).

Things got steadily worse. I started to feel like my throat had turned to concrete, it felt like stone and I couldn't cope without chewing gum all day long. I had explosive belching and wheezing with the stoney feeling. The gum helped for a while but for the last fortnight in Feb the pain in the pharyngeal area was so intense I started to take NSAIDs. Strangely, one of the side effects of the Rabeprazole is pharyngitis!! So i made the decision to cut my 40ml dose in half. I did this with no advice from my GP. I had been to her about the awful pain and she told me not to come to her about my throat anymore, because she had already referred me. Well it seemed to make a difference, the terrible concrete throat went away, but yesterday it returned. So now I am wondering if it was the rabeprazole at all! I am so confused!! I am experiencing the burn again since Thursday, I put that down to the reduction in rabeprazole, but I don't see the sense in going back to 40mg when it wasn't helping the throat anyway. I am hoping the burn will die down once my body adjusts.

I had my review with ENT on Wednesday. I told him about the pharyngitis, and he said I could stay on 20mg, although he questioned it being a side effect, and looked it up in his own book even after I had shown him the list in the pamphlet that came with the meds. He sent me for more bloods, and a barium swallow booked in next Friday.

I still have the lumpy throat, hoarseness, and the burn. I am hoping I will find an answer soon, or at least some relief, this i driving me crazy!

I am very pleased to find you all, maybe I will find some good advice here!

Liz x

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 3/7/2010 7:52 AM (GMT -6)   
Good Morning Zelda,

Welcome to HealingWell and the GERD/Heartburn Forum.

After reading your history it feels to me like you need a new GI physician, one that is perhaps a bit more aggressive and will do more testing to see if your problem is GERD and you would benefit from the surgical procedure that has helped so many here in the forum.

Here is some info re the tests that could be done:

An X-ray of your upper digestive system. Sometimes called a barium swallow or upper GI series, this procedure involves drinking a chalky liquid that coats and fills the hollows of your digestive tract. Then X-rays are taken of your upper digestive tract. The coating allows your doctor to see a silhouette of the shape and condition of your esophagus, stomach and upper intestine (duodenum). Looks like you did have this one once.
Passing a flexible tube down your throat. Endoscopy is a way to examine the inside of your esophagus. During endoscopy, your doctor inserts a thin, flexible tube equipped with a light and camera (endoscope) down your throat. The endoscope allows your doctor to examine your esophagus and stomach. Your doctor may also use endoscopy to collect a sample of tissue (biopsy) for further testing.
A test to monitor the amount of acid in your esophagus. Ambulatory acid (pH) probe tests use an acid-measuring device to identify when, and for how long, stomach acid regurgitates into your esophagus. The acid monitor can be a thin, flexible tube (catheter) that's threaded through your nose into your esophagus. During the test, the tube stays in place and connects to a small computer that you wear around your waist or with a strap over your shoulder. Or the acid monitor can be a clip that's placed in your esophagus during endoscopy. The probe transmits a signal to a small computer that you wear around your waist for about two days, and then the probe falls off to be passed in your stool. Your doctor may ask that you stop taking GERD medications to prepare for this test.
A test to measure the movement of the esophagus. Esophageal impedance measures movement and pressure in the esophagus. The test involves placing a catheter through your nose and into your esophagus.
Most GERD can be controlled through medications. In situations where medications aren't helpful or you wish to avoid long-term medication use, your doctor may recommend more invasive procedures, such as:

Surgery to reinforce the lower esophageal sphincter. Called Nissen fundoplication, this surgery involves tightening the lower esophageal sphincter to prevent reflux by wrapping the very top of the stomach around the outside of the lower esophagus. Surgery can be open, meaning the surgeon makes a long incision in your abdomen. Or surgery can be laparoscopic, meaning the surgeon makes three or four small incisions in the abdomen and inserts instruments, including a flexible tube with a tiny camera, through the incisions.

Surgery to create a barrier preventing the backup of stomach acid. This procedure, called EndoCinch endoluminal gastroplication, uses a tool that's like a miniature sewing machine. It places pairs of stitches (sutures) in the stomach near the weakened sphincter. The suturing material is then tied together, creating barriers to prevent stomach acid from washing into your esophagus. It's not clear who is best suited for this treatment and research is ongoing.

A procedure to form scar tissue in the esophagus. This approach, called the Stretta system, uses electrode energy to heat esophageal tissue. The heat creates scar tissue and damages the nerves that respond to refluxed acid. The scar tissue that forms as your esophagus heals helps to strengthen the muscles. It's not clear who is best suited for this treatment and research is ongoing. (reference: Mayo Clinic)

I am sure you will be hearing from some of our great members who have been through the testings as well as the surgery so please stick with us and know we care.

Again a warm welcome.

Kitt

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 3/7/2010 10:37 AM (GMT -6)   
Hi Liz,
So glad you've joined us! You're now among those who know what it's like to always be aware of their GI tract and always have to watch what they put into it! It's not easy, and the fact is, the delicate tissues lining the GI tract take what seems like forever to recover from any onslaught of acid.

I joined this group a little over a year ago, and have found tremendous support and information here. It's one of the few really active forums. In addition, while it is filled with people who've suffered greatly with heartburn and reflux, they are extremely positive and reaffirming.

I would think that you need to take the rabeprazole or some other PPI that doesn't list your disturbing symptom. You could research online for a different med.

It sounds like you've suffered greatly, and it's time to get some testing done to see how to best help your problem. Kitt has provided a great list of the types of procedures we've found to be very helpful and informative as we move forward in finding a solution to a very difficult and challenging problem.

We're here for you, Liz, so be sure to hang around. As Kitt said, others will be coming by to offer support and share their own experiences.
Hope today finds you feeling more comfortable!
Denise

zeldagoblin
Regular Member


Date Joined Mar 2010
Total Posts : 204
   Posted 3/7/2010 4:43 PM (GMT -6)   
Thanks for the welcome! Today has been a little burny but the lump isn't so bad. I am worried though, that because of reducing my rabeprazole, the rebound will cause more damage. It is such a tightrope. I have had an endoscopy about 18 months ago, only as far as my vocal chords, and nothing was revealed, although this was a while before my throat problems became severe.

I am having the barium xray on friday, so we shall see what becomes of that. I just want to get back to normal, I really feel this has impacted on my family very heavily, and they are all holding me up instead of living life.

speden
Regular Member


Date Joined Oct 2009
Total Posts : 175
   Posted 3/8/2010 8:41 AM (GMT -6)   
Sounds to me like you probably have GERD and that the rabeprazole doesn't work too well for you. Seems like most ENT's aren't that good at treating GERD, but don't want to admit it. You should see a gastroenterologist instead.

I'm not familiar with rabeprazole. Is it a timed release PPI? I've been having good results from Prevacid 24hr, which is available over the counter in the U.S. When I used to take non-timed release medications, I'd get a big spike of the medication when I took it, to the point where it made me feel tired and almost sick, and then it would quickly wear off and not control the acid for very long.

For me most of the throat damage happens at night, so I take my PPI's in the evening. Elevating the head of my bed is also critical to avoiding throat damage for me. When I travel and have to stay in a hotel, I need to prop up my upper body with pillows, or else the acid will get to my throat and lungs. Just one night of lying flat will take me two or three weeks to heal up from.

Good Days
Regular Member


Date Joined Oct 2008
Total Posts : 146
   Posted 3/8/2010 9:38 AM (GMT -6)   

Zelda,

Sorry you are having problems.  You did come to the right place.  Many of us have suffered as you have and some are still sufferring.

I had the Nissen done in 2008 and so far am doing great as far as the reflux and HH.

I think it is time to ask your doctor to refer you to a GI doctor.  You need loads of test, especially the ones that Kitt referred to.

We are here for you so know you are not alone.

Jayne

 


zeldagoblin
Regular Member


Date Joined Mar 2010
Total Posts : 204
   Posted 3/8/2010 3:30 PM (GMT -6)   
Thankyou. I think you are right, although I didn't realise the ENT would be so inept. I have seen 3 different people, as they are an "ENT team", and each one has given me a different response. The team leader was the most helpful, but he isn't always there. I am very surprised that no one suggested changing my meds. I will bring this up at my next review.

I woke up burning but it gradually went off, although I have VERY strictly controlled what I have eaten today. I am in a positive mood, despite a severe headache, and am looking forward to getting this under control.

I will certainly raise my bed head, I have asked hubby to get hold of some breeze blocks or something for the legs. I have been taking PPI morning and evening, and not really noticed any change in the throat symptoms, although the burn was totally eliminated while I was on the 40mg.

Good days, do you know if Nissen is done in the UK? I have never heard of it.

Good Days
Regular Member


Date Joined Oct 2008
Total Posts : 146
   Posted 3/8/2010 3:35 PM (GMT -6)   

The Nissen is the fundo Wrap.  I would assume it is done in the UK.

I had a loose wrap and it has worked great.  I was one of the really lucky ones.  I was back at work in less than a week.  And eating normally after a couple of weeks.

I attribute that to the skill of my surgeon.  The swelling was obviously minimal.

Good Luck,

Jayne

 

 


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 3/8/2010 3:36 PM (GMT -6)   

speden
Regular Member


Date Joined Oct 2009
Total Posts : 175
   Posted 3/8/2010 4:01 PM (GMT -6)   
I used to take my PPI in the morning and evening, but eventually I came to believe it was like damming up a river. No matter how high you build the dam, the water will eventually build up and flow over the top. The stomach must make acid and if you try to stop it 24 hours a day, it will fight and fight until it overcomes the medication. So I let my stomach make acid during the day and I'm very careful to never lie down or bend over during the day.

Then I take half my PPI dose before dinner and the other half just before I go to bed. I also take two extra strength Gaviscon just before lying down to sleep (which is a fast acting antacid to neutralize any acid left over from dinner). I also try to only eat fast digesting foods and little or no meat for dinner. I have learned over time that if I eat fast digesting foods during the day, my stomach will be empty by about 2am and will no longer try to make acid. If I eat a lot of meat or high fat food during the day, my stomach will not be empty the entire night and it will try to make acid.

What works for you will depend on the source of the problem. For me it is an LES valve that never closes. The best test to have is an endoscopy (a camera passed down the esophagus).

Good Days
Regular Member


Date Joined Oct 2008
Total Posts : 146
   Posted 3/8/2010 4:05 PM (GMT -6)   

Speden,

Another thing that helped me was to not eat after 3 PM.  It really worked for awhile.  Seemed to get much better.  Not easy but I would often eat whatever was for supper for breakfast.  That way I never felt deprived.

It does sound like your way is working for you and that is great.

Jayne


ncbluesky
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/9/2010 6:34 AM (GMT -6)   
Dear Zelda, Wow, I am a teaching assistant and sign language interpreter for 20 years+. Sorry to hear of your ordeal. I don't know much about GERD yet as I was just diagnosed last week. I can tell you that you came to the right place. The forum members here are very helpful and a blessing. Take care and God Bless.
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, June 20, 2018 3:28 PM (GMT -6)
There are a total of 2,973,777 posts in 326,128 threads.
View Active Threads


Who's Online
This forum has 161113 registered members. Please welcome our newest member, bbruneau.
457 Guest(s), 16 Registered Member(s) are currently online.  Details
SoMuchFun, Lapis_29, mattamx, mysweetpanda, sandyfeet, LucyDog, JohnMorales, opugirl, Scaredy Cat, The Dude Abides, Saipan Paradise, blksteeda, OriolCarol, straydog, TheJay, WV Mike