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Posted 9/29/2009 1:12 PM (GMT 0)
Joy, I am only 25 years old:( I am wondering how I am going to ever get married and get kids (Whilst taking these PPIS)...and I've googled the risks of the PPIS (excess release of gastrin, which encourages cancer cells)...honestly, too many fears to deal with, plus the agonizing reflux pain SPECIFICALLY when the sphincter opens and does not close back!!! It may sound weird but It has happened too many times...


I have done alot alot of research on the C.A.U.S.E.S of "chronic" Gerd and I would like to upload the differential diagnosis that I have "tried" to gather...Ill post in the next message
Posted 9/29/2009 1:36 PM (GMT 0)
Well, I'm 41 and haven't found the right guy or had kids, yet. smhair

My aunt didn't get married until she was 52. smilewinkgrin

So don't feel bad. rolleyes

There's alot of frighting things out there about GERD, but I try not to worry about them too much. I'm Cleopatra "Queen of Denial". turn

I've got so many things wrong with me that if I worry about them all I'd be a basket case.

GERD, Glaucoma, High cholesterol, pre-diabetic, hypothyroidism, asthma, allergic to everything, Chronic dry eyes, OA in my back from a car accident when I was 25, 100lbs overweight that I can't seem to get rid of. shocked

Mind you, I take meds for all of them, but I do my best not to dwell on them. nono

I'd  love to wait for the Linx but I don't think I can wait 5 years for it.

Joy

Posted 9/29/2009 1:37 PM (GMT 0)
One night I was a healthy young 24 year old lady...That night the microwave burst in my face , literally the food in the microwave exploded all over the room, and the microwave exploded such a loud loud voice - in my face- and i collapsed and did not know if ill be able to really wake up again, the explosion was too strong; I had third degre burns and my hands bled...how can a microwave burst? Something had happened with the electrical charge, I am not sure...

I WAS rushed to the hospital and ...given many medicines. I stayed at the hospital for 2 days. I am very slim, only about 110 pounds so when they gave me all those meds, my body just couldnt tolerate it...I threw up all night...I felt so sick...

The next day I had chest pains, heart pain, and the doc said it's as a result of the meds, the throwing up and the microwave bursting.

The doctor said the meds increase stomach acidity so I probably have reflux. It will go away in a week, he promised.

Weeks passed and my reflux did not go away.


I NEVER had hernia before that night. They found a 1-2 cm hernia . how? I believe that the throwing up sooo painfully on that night had caused my hernia.
Many who have hernias HAVE CHRONIC reflux ! WHY?!

I have come to believe that babies who may be over-fed and have to throw up their milk develop little hernias...the hernias lead to chronic reflux...the hernia weakens the valve of the esophagus since it seems to interfere with the alignment of the valve and sphincter cover...a valve and sphincter that are not perfectly aligned will lead to reflux....

Other causes of Gerd

some people just eat wrong...they fix their diet, and ha, the gerd is gone!

some people's stomach ph is too acidic, they take meds for a while, fix their diet, and the gerd is gone!

some people have hpylori bacteria (increases stomach acidity alot); they take their antibiotics, maybe probiotics too, and ppis or so for a while until they cure from it...

some people have weak valves; they are put in an esophagus transit test and given barium to swallow...not just 1 cup but many many cups of barium-mixed with water and the doctor is expected to shake these people in the CT scan machine alot, upside-down, all directions to see if the barium refluxes up - barium can be visible on the SCAN. Doctors can also sometimes detect hernias on the CT scan; so mannny people with weak valves also have hernias...many do not know how they developed the hernias...I developed mine on that night...PEOPLE with weak valves take the PPI on daily basis...the valve is barely working ...the acid -refluxes- upwards especially when the stomach is spasming...sometimes my sphincter opens and doesn't close! how do I know? it is when I can barely breathe and I feel the splash of acids up my chest to my throat...no one can live with such a weak valve...

some people have hpylori and a weak valve! now imagine that severe case? hyplori increases stomach acidity and then the weak valve together...oh goodness...if they get medicated for the hpylori, the acidity may decrease of course...but then they are also left with the weak valve...

when I go to doctors and explain my reflux is because of my hernia. I have no hyplori and I am slim and i do not have excess stomach acidity- the doctor asks me howcome you never had a weak valve all your life? howcome you just started taking these meds 1 year ago? It is after that night...that night when I developed the hernia when they loaded me with all those meds...

now at 25, i want people to know that gerd (resulting from excess stomach acidity, or hyplori) is really simple compared to gerd resulting from a very weak valve/sphincter (Anatomical reason)...an anatomical reason (hernias, etc) needs an anatomical cure...otherwise we'll be on PPIs forever...and sometimes it doesnt even help.
Posted 9/29/2009 1:43 PM (GMT 0)
You're right Joy...thankyou so much for the encouragement (F)

I am glad you are positive...I hope to be the same...I will keep that in mind.

Perhaps at my young age, it's all so new to me...I will try.

Thankyou again.
Jules
Posted 9/29/2009 6:54 PM (GMT 0)
jules, you probably just messed up something when you were so sick.
You're very lucky that you were not killed when the microwave exploded.

The way to look at things is: I'm young, I've still got 70 years to find someone.

My sister thought her life was over after she divorced her cheating husband of 20 years. She found a wonderful guy this past year and got married this past Feburary. They are like two teenagers. She's 49 and he's 56. There is life after 30! :)

Joy
Posted 9/29/2009 10:49 PM (GMT 0)
That's very positive JOY..I love your way of thinking; keep it up Joy...I will look forwards to that...thankyou(F)
There is life after 30-40-50; we just need to surround ourselves with the right people...and to fight through the struggles...but it is tough too...at least for me...Ill try...This is a big test...


Forgive me...It must be the reflux pain that is making me so depressed:(


my valve doesnt work at all...

I am currently doing research to whether eating yogurt-like foods (Soft soft foods) would help the valve strenghten...maybe solid foods hurt the valve...I dont know (uhh...desperate for something). I am just trying to figure out different ideas...I researched the esophyx too...
good and bad news as you already know....

thankyou JOY...and you're right...I will try to carry on that positive approach...




Jules
Posted 9/30/2009 12:56 AM (GMT 0)
My valve is half open.

We'll wait it out together. Next month I find out if I'm a good subject for the EsophyX. My new GI is going to do an endoscope for evaluation.

Joy
Posted 10/3/2009 12:00 AM (GMT 0)
Hi Shooz,

Congratulations on your successful surgery. It is very inspiring. And thanks so much for sharing your experiences.

I was wondering if you've had any difficulty burping after getting the device. Some people have a problem doing that after fundoplication, so I'm wondering if the Linx system has the same problem.

Also, did your doctor put any restrictions on your activities? I like to ski, and I'm wondering if bouncing around on the ski slopes could move the Linx device out of position.

Thanks, speden
Posted 10/3/2009 6:02 PM (GMT 0)
Hi Speden,
Yep, I'm having problems burping!!!!! I still have this bloated feeling and can't seem to get the burp out. I must admit last night I had a giant burp that escaped and did it feel good. I'm trying to watch what I eat to keep the gas to a minimum. I was out of work for 2 weeks. The day after surgery I was eating a soft diet and lots of liquids. My Doc wanted me to eat as soon as possible so the device would work. After the first day I was eating anything that appealed to me, and I do mean ANYTHING!!! I was told not to lift anything over 10 # for the first week and then be careful after that. I am pretty much back to my normal life style now. As I have mentioned here I stopped taking my Protonix 9/2 and haven't had a single bout of heartburn or reflux since. My biggest challenge has been to learn how to eat again. Other than a couple of minor issues this has been GREAT. I hope as the study continues they find a way to fast track it to approval. Thanks to all for your kind words and encouragement. Shooz
Posted 10/3/2009 9:15 PM (GMT 0)
speden

Hello and welcome to the GERD/heartburn forum. I am Kitt. Please do feel comfortable starting a thread of your own. Just click on new topic and name your thread something catchy. Then post away as we would like to get to know you better and support you here in the community.



Again a warm welcome.



Kitt
Posted 10/5/2009 12:30 PM (GMT 0)
Joy, hope you are feeling better...let me know when you have time...how is everything going on? goodluck

Kitt, thank youuuu so much for setting up questions for pregnancy, fundoplication and Gerd for me, Appreciated so Much...Hope to receive answers on that forum-topic soon...

Shooz, when you log in, let us know how have you been!!!??? Losing any weight??? GLAD you had 0 heart burn since the surgery!!!

Everyone, I contacted Linx system through e-mail and they said the experiment will be done/concluded next year about september...they are very helpful , even their e-mail sounded nice...


Thanks all
Jules
Posted 10/5/2009 2:40 PM (GMT 0)

Hi Shooz,

Sorry to hear burping is a little difficult for you.  It sounds like the magnets in the bracelet are perhaps a little too strong in your case.  They are holding the valve shut very tightly to keep the acid in, but making it harder to swallow food and burp than you would like.

Did your doctor say if there is any way to fine tune the power of the device after it is implanted?

When food gets stuck trying to open the Linx, does it help to wash it down if you drink something?  If you contract your chest muscles and kind of bear down, does that help to force food past the Linx?

When food is stuck, it seems like instead of stopping and waiting, you should eat more stuff to put extra pressure on the Linx and trigger it to open.  Then all the stuck food would whoosh into your stomach in one shot.  Have you tried that?

I hope in time you will find little tricks you can do to swallow and burp more easily!

speden 

Posted 10/6/2009 12:23 AM (GMT 0)
I'm over the flu, but my allergies are in full swing: coughing more than normal, itchy throat, sneezing, stuffy nose and itchy ears.
I'm supose to see my allergist soon. Maybe I can see him on Monday next week.

Joy
Posted 10/6/2009 6:25 PM (GMT 0)
Hey Shooz,
I'm glad you are doing well. Could you do me a favor and everyone else on the forum and ask your doctor a question for us? There is a Dr. Jeffery Peters from the University of Rochester that stated in a article ( Im pasting it here): The current trial is taking place in 16 cities across the U.S. (a list follows). However, the researchers are no longer accepting new participants. Peters says, even if the system is eventually approved, the treatment would most likely not be recommended for patients with severe GERD or Barrett’s esophagus.
Why wouldn't this treatment be recommended for people with severe gerd or barrets? Isn't the whole point for people like us on the forum to get this treatment. It feels like a damper on something positive. Could you ask your doctor his take on it. I'm sure people would like to know.
Again, good luck to you. Keep us updated on your situation. And enjoy your freedom from this aweful condition.
Tom
Posted 10/6/2009 7:18 PM (GMT 0)
tracks83, you are so right....

I am in so much pain nowwww....I am starting to give up
Should I wait for this LINX till it gets approved; last I heard it's for next december...

Tom, you can e-mail them and ask them! check torax linx website, e-mail section...they do reply...and give GOOD answers


Peopleeeeee.........i dont know what to do anymoreee

wait for linx?
do nissen...
Jump from 20mg/20mg nexium per day to 40mg/40mg but I am tooo skinny for 40/40= last time I took 40/20mg, I began to shiver...and nausea...

the pain is too much....ALL day acid leakkkkks up into my esophagus, the sphincter DOES not close...:( at allll

if I do the nissen, and in the future, I get married and want to get a baby, is it true the baby presses on the nissen and the valve may be ruined again?

But if I stay on PPIS, research says they are SO bad for the baby?

And PPIS also - research says many people develop alot of bacteria in intestines and alot of awful effects from PPIS like future related intestinal SERIOUS diseases

even with the PPIS, im refluxing so my esophagus is burning anyway....so...

I dont know....
jules
Posted 10/6/2009 8:09 PM (GMT 0)
Hi tracks83,

I see the article you mention where Peters says the treatment would most likely not be recommended for patients with severe GERD or Barrett's esophagus. That's pretty discouraging, but doesn't really make a lot of sense. I sounds like Shooz had GERD for many years and she qualified for the clinical trial. I find it hard to imagine someone with mild GERD being that interested in surgery when they could just pop a Zantac instead. Hopefully Peters is just being conservative since it is such a new treatment. Since the Linx procedure is reversible, it seems like people would want to try that before going on to fundoplication, which is not reversible.

I asked my GI doc about the Linx last week, to get his opinion of it. I couldn't tell if he was really all that familiar with it. He just dismissed it out of hand as another gimmick that would fail. He said the forces of the stomach expanding and contracting when you eat are so great that only fundoplication, which is anchored in multiple places, will be strong enough to stand up to it. But my doc is pretty old, so is probably very skeptical of anything new since so many different approaches have failed over the years.

I have not been able to figure out from the Linx website how the device is anchored into a certain position. They don't seem to show if there are stitches or something connecting it to the esophagus. It kind of gives the impression it is just held there by the surrounding tissues, which would seem to allow it to migrate over time. Perhaps this could turn out to be a first generation design and it will be improved over time. Hopefully they are learning a lot from the clinical trials about how to do the Linx surgery for the best success rate. If it gets FDA approval and becomes widely used, I suspect the technology and surgical procedure would improve rapidly.

speden
Posted 10/6/2009 9:14 PM (GMT 0)

Good Afternoon,

I just read this thread........wild ride that was :)

Joy, I would not wait if you have access to a good surgeon and can have surgery as you are in a lot of pain for one thing and waiting for the LINX most probably means hunting for a surgeon qualified to do the procedure and also falling in line on a waiting list if the procedure is one you qualify for.

I know you have to make up your own mind but like with anything what works for some may not work for all. Base your decision on your own sx, test results and your physicians suggestions.  Get 2 or 3 opinions if you need but don't wait in pain my dear.

Gentle Hugs

Kitt

Posted 10/7/2009 1:20 AM (GMT 0)
I'm not in pain all the time, skitt. I get pain maybe once a month.
I just cough constantly from mucus build up from the reflux.
The cough is what's driving me towards the surgery.
My current GI is sitting on the fence post about me doing it. He says I'm at maxium medications and it has not helped my cough any.

Joy
Posted 10/7/2009 3:39 AM (GMT 0)
speden-
My surgeon that did my Nissen redo says it can be taken down if it doesn't work. Not many surgeons are willing to do this though. My surgeon specializes in this surgery though. There is no way I am going to have mine undone. I am enjoying not having reflux way too much.

Take care,
Bill
Posted 10/7/2009 1:27 PM (GMT 0)
Hi everyone,
I agree with Kitt that this thread has been a wild ride!!! I read the same article by my surgeon Dr. J. Peters from the U of R medical center in NY. I must admit that I am a bit confused as he said my GERD was classified as severe. The good news is I'm negative for Barrett's. I will ask about this article and what he meant. To date the device is doing it's job, no reflux and no heartburn. That nasty acid is a thing of the past, a bad memory!! Someone asked how the device is placed, the Doc measures first with a special version of the Linx then places the device. To the best of my knowledge it is placed at the LES and stays there without stitching. The magnets keep it where it belongs. Before I could go home I had to have an xray to make sure it was in place. If anyone out there knows others that have had this surgery I would REALLY like to talk with them about their experience. As I have said before, keep after your Doctors. The right one is out there. You may have to do a little extra leg work to find him or her but it is well worth it. Hang in there everyone. Shooz

Kitt,
Thank you for this resource and being able to talk to others. You're the BEST smilewinkgrin smilewinkgrin smilewinkgrin smilewinkgrin
Posted 10/8/2009 10:18 AM (GMT 0)
thats the thing bill the reflux will be back again a nd maybe worse .i had thougf ht of  asking for  reversal as i rushed my surgery a little  and had osophogitis with hh.defective les surgeoun said.Didnt want to stay on pills long term and went like at t rooper for 2weeks best decision ive ever made as i felt 'great' then after doin physical work my own fault down hill from there.just writing this bill for newbys lol.i had 180deg wrap.takecareall andheal well...
Posted 10/8/2009 10:20 AM (GMT 0)
my friend had nissen 20 yes 20yrsago  and has no long term bothersome problems hes 50now...
Posted 10/8/2009 11:26 AM (GMT 0)
Shooz

You are very welcome and this is an interesting thread as there is a lot of info being shared here which I think is what makes this whole forum so successful.

Happy Thursday to you.

Hugs

Kitt


 

Posted 10/8/2009 5:50 PM (GMT 0)
someone said a 2cm sliding hernia could fixed without surgery...does anyone know how that is possible!!!?
Posted 10/10/2009 1:41 PM (GMT 0)
Hi Shooz,

How's the swallowing progressing? Is it getting any easier to swallow bigger pieces of food?

I haven't seen anyone else in the clinical trial posting on the internet, but I did notice a couple people are mentioned in articles on the Linx. One person who got the linx is named Casey Donahue and he makes some comments on it in this article:

www.post-gazette.com/pg/09161/976169-114.stm

Another person who got the linx is named Debbie Dearborn, and she has some comments in this article:

wcco.com/local/heartburn.esphogeal.cancer.2.1107370.html

It looks like she's on twitter as user "debdear" so you might be able to contact her through that:

twitter.com/debdear/status/2920468107

Well I hope you can find someone else with the linx to compare experiences with!

speden
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