Hi from a Newbee

Diseases & Conditions GERD & Acid Reflux
1
Hello, all.  My name is LauraV and I was diagnosed in October w/ severe GERD and a small hiatal hernia.  Since that time, I've done tons of internet research and experimentation with visceral manipulation to bring down the stomach.  I've seen a chiropractor and osteopath, the latter of which showed me how to do a self-manipulation for the hernia.  Has anyone else tried similar techniques with success?
 
This disease is so difficult.  My symptoms are at times unbearable.  I've already been on famotadine, omeprazole, and now Nexium without much success.  I am thinking of getting the Nissen next year because there is just no way I can see myself being able to tolerate these symptoms long term.  I know the surgery is not a 100% quick fix, but it has to be better than this.
 
Thanks for your patience in letting me rant.  I've been reading your posts and think you are all very brave and positive people.
 
 
2

Hi Laura and welcome

Its a terrible disease. I too have a hernia and have suffered from it. I was recently put on perscription prilosec which has helped alot with the pain. The hernia has caused swallowing issues which has stressed me out. The doc said I need to be patient and he seems to think the hernia may shrink if its not irritated by the acid. Eating stresses me out so I am not eating because of the anxiety of not being able to swallow real well. I use to run alot up until my son was killed in May. I started back up and it is helping with the stress.

Did the doc say if yours would shrink or not.

Hugs

Marsha

3
I am terribly sorry to hear about your son, Marsha. God gives us a lot sometimes and the only answer seems to be plugging on.

I hear what you're saying about not eating. I had 1/2 a bowl of cereal today and it's 4 p.m. Try to eat, though (even baby food if necessary), b/c your body weakens without food. The docs give us these long laundry lists of what not to eat. I believe it creates fear of food, which leads to malnutrition on top of the GERD. I never thought that the kitchen and bathroom would become places I dreaded at only 33!

My GI doc never mentioned the possibility of the hernia shrinking. The osteopath and the chiropractor seem to think that the hiatal hernia manipulation is an effective pull-down for some people. I would also suggest a general GI system self-massage (good if you have spasms, D, or C). Use lotion and begin around the area of your ileocecal valve (near your appendix). Work your way under the ribs, down the left side, and across the lower bowel.

Hang in there and so will I.

Best,
Laura
4
Hello Laura,
 
I have only been on this site for a week but I feel your pain...it IS a terrible affliction and no one who hasn't experienced it understands just how bad it is.  I have not had the stomach manipulation you mentioned, however I have had a Nissen which with a few complications worked well for a year, but recently my symptoms have returned... they don't return for everyone however, so you should still consider it...just a few notes on the Nissen... don't listen to anyone who tells you "its easy. its no big deal" ... I can tell you, IT IS A BIG DEAL.  Pain is not a serious issue, but getting used to having a new fundus IS!  If you think food goes down the chute slowly with the hernia (which I had as well, and had fixed at the same time as the Nissen) it will go down even slower with the Nissen.  You will also lose your ability to burp, possibly permanently which I can tell you can be uncomfortable when you have gas, by the way, your body doesn't know its lost the ability to burp so it will try to anyhow which can be painful until you get used to the sensation.  You will also lose the ability to vomit, probably permanently, which can also be a serious issue...for example if you get a stomach bug or flu or if you ever get drunk, you won't be able to vomit...again, no one tells your body this so you'll heave anyhow with no result...that IS painful, it happened to me twice, the 1st time I spent 2 days in the hospital taking meds to stop the nausea/heaving)  I don't drink at all but if you do, just keep that in mind.  I'm not trying to dissuade you from doing it, just make sure you know the pros and cons before you dive in.  I have heard of a plicator procedure which is new that can be tied/untied if necessary lightly sedated non-surgical so try looking into that before you plunge into the Nissen...one more thing...PLEASE research your surgeon before you have a Nissen done...there are experts then there are are "well, I've done a few... doctors"  It makes a difference, believe me.  Good luck....I hope that helps you with your decision.  Write back and let us know your progress, we can compare horror stories...believe me, it helps, misery loves company...LOL...Good luck, best wishes...Sean
5

Sean123

Sounds like you have been through the ringer. How are you managing now? Since you have already had the surgery what can they do to fix your problems now?

After you talking about all the side effects of the surgery there is no way I would consider it at this point.

Marsha

6
Hi Marsha.

Well, they are trying to treat it more aggressively with meds right now, switched from prevacid 2 a day to protonix higher dose 2 a day (the doctor said I might be developing a resistance to the drug, I've been on Prevacid 5 years) Then he wants me to drink 2 teaspoons of Carafate before each meal and once before bed to numb/soothe the esophagus. Plus he gave me sleeping pills so I can actually sleep through the heartburn at night. If in 3 weeks its not better he suggests trying a new procedure called the "plicator method" which is done endoscopically with a tool that looks interestingly enough like a crocheting needle. They grab the top of the Nissen and basically button it up a notch tighter...the cool thing about this is that it isn't permanent (at least I think) and can be adjusted for comfort/effectiveness...the bad thing is that insurance companies aren't really on board yet so I might not be able to do it even if I want to...we'll see. Well, in regards to your question about how I'm doing now, I guess the answer is best put as this... I'm stuck in this body, I have to try to make the best of it. The symptoms are still there constantly low grade, sometimes good days, sometimes days where I'm miserable...about 2-3 times a year for 2-4 weeks at a whack i'll get a bout of blast-furnace burn that I simply can't stop...I'm at the tail end of one of those bouts now, hence the recent doc. visit (yesterday) I'm sorry to scare you about the Nissen and don't rule it out completely just yet...they are getting better at perfecting it and new techniques are coming along...a la the "plicator method" which I just mentioned. I have heard of people who have said that the Nissen was a Godsend and I've also heard horror stories...in my case, I hoped for the Godsend but kind of got some of both ends, a few complications, and side effects (no burping/vomit-ability) but also about a year with no heartburn, was it worth the scars? Good question...as of now, since I will always have the side effects and now 5 belly scars, and unfortunately the burn has returned, I'd say no. However, I'm still hopeful that my body will eventually make an adjustment and I'll get better, I do know that this is an awesome site for people like us. I feel like I at least have an outlet for some of my frustration and possibly someone out there (on this site) has an idea or method that I haven't thought of yet for relief. In your case, I'd recommend this...RESEARCH RESEARCH RESEARCH Gastroenterologists in your area, find the best one, get a surgical consult and listen to your body as much as possible... pay close attention to it because with a sensitive GI system, the slightest thing can set it off, exercise, overexertion, medications (acetominophine can irritate it) soda, citric products, stress, you name it...when you get a bad bout of it, think HARD about exactly what you did the day prior, the night prior, the minute prior etc... to the attack. Best advice I can give, TRY, I know its hard, but TRY to be positive and hopeful and TRY to relax as much as possible, that usually helps me through the tough times. Please let me know if there's anything I can do to help. Thanks Good Luck, Best wishes...Sean
7

Thank you Sean for your words you write very well.

I was diagnosed with a hernia several years ago I never really was bothered with the problem until May of this year when my 15 year old son was killed in an accident. I think the uncontrollable bouts of my crying made it worse. I think I even remember when it happened I felt a pop. I don't know if that sounds crazy or not.

I know to what triggered the hernia in the first place I was bulemic for a period of time. With your situation it does not make sense. You said your not oveweight, drink, or smoke so what caused it? You said you are 36 that is way too young for someone to have to go through this. My symptoms are bad but yours make mine sound like nothing.

This site is great and its good to know there are people out there that understand our frustration. I sometimes can feel the burning in my nose and ears and then I start to get panic attacks from it thinking I'm dying and its something more serious than the doctor saids. I never have gotten the bile come up its only been the burn but I don't know whats better of the two evils.

I will keep you in my thoughts and hope things improve for you. Please keep us posted on how you are doing.

Take care

Marsha

8

Thanks Marsha,

     I appreciate the kind words.  I'm sorry to hear about your son, that is terrible.  I too have a 12 year old and the thought of something happening to him makes me sick to my stomach, so I can see where your's got its start.  Where did mine get its start?  Good question.  I'm a teacher (high school) and it IS very stressful, but my issues started years before I started teaching... I do remember falling hard on my stomach when I was young (early teens) where I tripped on a stump root and landed square on the point of another stump root right under my sternum, I think that's when it started, but I was really young and after the bruise went away, I didn't think anything of it, but this has been going on since my 20's so maybe the stress of being an adult kicked it in, not sure.  Whatever started it, it just won't leave me, I hope it does soon.  This weekend was so so, but I'm hopeful this week will bring relief...we'll see.  I'm giving it 1 more week then I'm demanding tests because this can't go on much longer...well it can, but I can't...so we'll see what the week brings... I'll let you know... do look into the plicator method, I hear its effective, I wish it was around before I had my Nissen done...  Have a good week...TTYL  ;)  Sean

 

9
Sean, your story truly touches and upsets me.  Have you explored alternative medical treatment at all?  Osteopath, naturopath, acupuncture, etc.?  You seem to have fully gone down the iatrogenic (mainstream medicine) road without much relief.  In my opinion, M.D.'s have two modalities: Cut into you or fill you full of meds.  Have you looked into theories like the water cure?  I won't provide the website, as I know Healingwell edits, but a doctor by the name of Batamanghelidj believed that many GI problems could be linked to chronic dehydration and thus treated with water.  You may want to do a web search to find out more.  I'm not selling here; it's simply one of many ideas I've been researching in my personal efforts to regain my health.
 
Thanks for mentioning the plicator, which I'm looking into per your suggestion -- although I've heard there may be some issues with abdominal and chest pain afterwards.  I've also researched other endoluminal approaches like stretta and endocinch, but they just don't seem to have impressive results.  You advise to fully research a surgeon before letting her/him perform the nissen.  Did you research yours and STILL wind up with the less-than-favorable results you mention?
 
Best to you,
Laura
10
     Yes, I did research him, and found that he was ranked 9th in the country in doing this.  I must say, that beyond the no burp/vomit side effects (which are common)  it DID work for me for a year with no meds.  It started back up this past May which was one year to the day from the surgery.  I went back on meds and it went away QUICKLY, so I was very encouraged that I was settling into a routine and finally the END of the nightmare.  But unfortunately it has returned since the 2nd week of November and hasn't let go since...in fact this particular bout is setting a record for me for length of severity, but I remain hopeful that I can get it back under control.  I was just thinking that the day before this recent bout started, I raked leaves in our yard for a few hours...I haven't done that in a long time, so perhaps the repetetive motion of the raking irritated my abdomen, not sure. I'm probably grasping at straws right now, but maybe that's the cause of this recent one. 
    In regards to getting away from the mainstream in trying to treat this, I have started using the Reliv products (again, I'm not advocating or advertising just relaying my experience) and so far I feel better and have more energy outside of the GERD but no effects on the GERD yet.  I have heard that it is effective at reducing symptoms but it takes a while if the case is a severe one.  In regards to the water issue, I find that (believe it or not) water gives me heartburn...I know that may sound strange, but actually its not... I've read several blogs on this site about people getting heartburn from drinking water...odd but true.  However,  I do see the benefits of water over other drinks for obvious reasons.  Milk is the only liquid that I can drink during these episodes that won't come back on me, perhaps due to its weight...gravity helps :)
     As far as doctors in a rush to cut or medicate, I agree, however the longer I suffer with this, I can sort of see their point...unfortunately there are only so many options to explore (from their point of view) and every person is SO unique that what works for one is a horror story for another and vice versa.  I've heard people on this site say that the Nissen was a Godsend, a miracle!  Others have said it was aweful...others so so (like me) For some, meds work well, for others not at all...the exasperation comes when ALL possibilities are explored to no avail...that is my only fear.  I'll just keep exploring every avenue until I find the relief, (if that's possible.) 
     Well, I've got to head to class (this was my break in the day) but I will keep you posted as to the results of this.  I want to thank you for your support and encouragement of me.  It really helps to know that there are others out there that can relate to me.  I, as well, wish you the best of luck in your quest for relief from this, and again if there's anything I can do, please let me know.  Be well.
                                                   Sean