Need Advice! GERD/LES problems

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NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 10/10/2012 1:07 PM (GMT -6)   
I'm new here and I know this is very long but I wanted to give a full history and description to maybe make things better for advice - sorry it's a novel!! Any advice is greatly appreciated!!

In October 2005 I got into a car accident and that is when my health started failing. Someone "tboned" my SUV and totaled it. I was wearing a seat belt, which later was part of the theory about how my symptoms developed (That the seat belt held me back but not my organs). I'm not sure if it is the case or was pure coincidence. I hadn't had any issues with heartburn, nausea or indigestion before this, just once and a great while - which is apparently normal if you eat something extremely spicy.

In November of 2005 I started getting heartburn. I didn't think too much of it, just took Tums and drank Pepto-Bismol. Towards Thanksgiving it was an every day occurrence and starting to effect my everyday life. One day I cut up a pineapple and ate about half of it. I was in excruciating pain, I thought I was having a heart attack. I honestly had never felt that much pain before! I took a lot of Tums and Pepto and went to my family doctor asap. He basically just blew it off and acted as though there was no issues. In the next couple weeks I lost about 15-20 pounds because all I ate were mashed potatoes, I was terrified of food. I went to my doctor again and he acted as though there still wasn't an issue. My brother is a chiropractor and told me to demand an endoscopy. The doctor finally agreed and I got one scheduled. The results came back that I had a slight hiatal hernia, severe acid reflux and my esophagus was eroded. They put me on 2 Nexium AND 2 Prevacid a day, so a total of 4 pills. I can't remember the mg but it seemed a bit excessive. They said it would heal my esophagus, which it did do - so for that I am thankful. They had suggested a surgery for the hernia, but I was scared. I had a barium swallow, which confirmed the severe acid reflux and hernia. After about 6 months on the medicine I wasn't having nearly as much heartburn but always felt exhausted. I stopped taking the medicines and just tried to eat healthy. A few times I'd have something very spicy and would pay for it with the extreme pain and feeling of a heart attack. I went to the E.R. a few times to get a GI Cocktail, which has lanacane in it and would soothe my issues. I'd take over the counter types of Prevacid for a few weeks and eat healthy. This cycle has been happening since 2006. I just tried to ignore it since I didn't want surgery or the medicines. Obviously, you can't really ignore this issue...

On June 23, 2012 I woke up feeling really weird and very nauseous, I assumed I was getting sick. I'm used to feeling nauseous and having indigestion and slight heartburn everyday, especially in the mornings. The next Saturday I started felling really bad again. Then on July 4th I had really awful bad heartburn. I assumed it was because I ate spicy salsa the day before. It was so bad I went to Urgent Care, got the GI Cocktail and a prescription for Prevacid. By the time I got home I was feeling awful. The GI Cocktail didn't work too well and I was getting sicker. Turns out I had a heartburn attack AND the flu. I took the Prevacid and started eating really healthy and "safe". I figured my esophagus was eroded again and the medicine would help. It'd be this whole cycle again and all would be well. Within 2 months I ended up losing 25 pounds, which now puts me very under weight. I feel awful every day. My husband finally told me to go get an endoscopy and checked out. I also hit 30 this year and have been wanting to start trying to have children. My family doctor (I changed from the previous one from 2005, since he wasn't helpful) told me I am not in good enough health to get pregnant right now.

On September 14th I had my endoscopy. Right before going under my doctor asked about my gallbladder and I told him I don't think anything is wrong with it. He seemed to think that was the only issue and acted as though this "heartburn" I feel isn't really that bad. I explained to him exactly where it hurts, up under my rib cage, in the center and it feels like it is on fire. I told him when the pain is so bad all I want to do is stick a knife into my stomach, it's unbearable. He still blew off my description. I'm in no way suicidal, but when the attack is that bad I begin to understand how people have committed suicide instead of dealing with sickness/cancers, etc. He then told how they will take biopsies to check for cancer because when your esophagus erodes as much as mine, I could get esophageal cancer. That was a great last thought before being put under! My results came back that it's obvious I have acid reflux and my lower esophageal sphincter muscle is loose and does not function at all. They didn't say anything about the hernia or erosion. I do have a picture they took of inside, there are some white wrinkly things and you can tell the LES doesn't close at all. He ordered me to get a sonogram of my gallbladder. That came back normal and his nurse said if I have issues in a few weeks to call back. I told her I've never stopped having issues and I need to figure out what to do. She was extremely annoyed but scheduled me.

I decided to get a second opinion because my doctor was extremely rude and always seemed annoyed by me. His online reviews say the same from many different patients. I went to another doctor in the same practice. I told him everything and said I wanted to treat the problem not the symptoms. I told him I want to have children soon and the 4 pills a day (I'm back on 4 Prevacid a day) isn't an option. He agreed and said he wanted to rule out my gallbladder 100% since I said when I get the attacks, sometimes it hurts through to my back, but I told him it rarely went to my back. I had a HIDA scan done (which wasn't my idea of pleasant at all!) and that came back at 29%, which is almost normal and nothing to worry about. I had a Gastric Emptying Study done and that came back normal. He called today to tell me this and said for me to eat a low fat diet for 4 weeks and keep a diary of what I eat, then we will go over it and see what the triggers are. I told him I have been on a low/no fat diet for 3 months and can tell him exactly what causes the issues. He told me he didn't feel comfortable taking out my gallbladder, I agreed and told him I refuse to have my gallbladder out, since that isn't the issue. I asked about the LES and what we can do to treat that. He told me it is normally treated with medicines and no surgery. He told me again to do this 4 week food diary. I hung up and just started crying. I feel as though they don't care and are blowing me off. Why would I need to do another 4 weeks when I can tell him for the last 12 weeks what exactly I eat each day. It doesn't vary that much AT ALL. I don't eat greasy or fatty foods, I eat extremely healthy.

So now I'm at a point that I have no idea what to do anymore. All I know is that I'm sick of eating the same boring "safe" foods daily. I'm sick of having heartburn, indigestion, nausea, trouble swallowing, fatigue, exhaustion and hopelessness. I'm not a depressed person, but this is making me become one. I have to adjust my life to how I feel that day. I wake up throughout the night with indigestion and heartburn. I've elevated my headboard, I sleep on my left side, I take Ambien, Melatonin and Benadryl just to try to sleep through it. Does anyone have any advice? I have read where people have great results with Nissen and LINX. I'm willing to have surgery if that means no more daily pain and inconveniences (I am worried about not being able to vomit and being bloated though). I want to feel healthy and I want to get pregnant soon!

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 10/11/2012 10:09 AM (GMT -6)   
Good Morning,
 
I am sorry to read of your pain and your frustration and I am gong to make a suggestion -  Seek out the opinion of another physician that is not in the same group as the 2 you have seen.  Tell this new GI physician what is going on and ask if you are a candidate for surgery ?
 
Like any surgery, a Nissen Fundoplication does not come with a gaurantee but many people have great success with the surgery.  Candidates that meet these criteria should be evaluated for the surgery.
  1. You have discomfort from Heartburn on a daily basis, despite treatment with acid reducing medications
  2. You are not obese (your BMI is less than 35 ) - you already stated you are underweight.
  3. You obtain some relief from your acid blocking medication

Evaluation before surgery requires an Upper GI Barium Swallow and an upper endoscopy procedure. In my opinion and that of many of the board members, a pH study of the esophagus and  a pressure (manometry) test should also be done as part of the evaluation.

Keep on being your own best advocate and may I also suggest that seeing a therapist to help you with the feelings of hopelessness and anxiety would be a good idea as talking to a professional will help you learn ways to deal with the emotional side of your illness.

Kindly,

Kitt

 


~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"Learn to get in touch with the silence within yourself, and know that everything in this life has purpose. There are no mistakes, no coincidences. All events are blessings given to us to learn from."~ Elisabeth K├╝bler-Ross

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 10/11/2012 11:53 AM (GMT -6)   
Thank you for your answer. It seems as though I meet the 3 criteria. I have had the Barium swallow and 2 endoscopies. I was wondering about the pH study and manometry test, they don't sound fun, then again dealing with this every day isn't either!

I will call another GI place. When I tried before the appointments were 2 months out - I thought that was extreme, so that's why I just went back to the same practice but different doctor.

It's nice to have found a place like here, where others can relate to this. My friends and family seem to think "oh yeah, heartburn, I get that too sometimes". I'm thinking, "It's not the same at all!!" They act like I'm crazy to be in so much pain. At least my husband understands and is caring :)

dany1982
Regular Member


Date Joined Jan 2012
Total Posts : 158
   Posted 10/11/2012 4:13 PM (GMT -6)   
I would stop the Ambien and Melatonin. Both gave me heartburn and burned my stomach. Every time when I would take I would wake up in the morning feeling worse and I didn't know why, until I made the connection. Xanax and amphitripline (spelling) did the same. I guess my stomach was too sensitive. If you don't get side effects from the ppis, I would stick to them for another couple of months. Also try to switch to other ppi, it might work better. Also, a bravo test while on ppi would be good, since it will give you an idea if you are still refluxing on them. My GI wants to do it, but I'm too scared since my esophagus burns bad. Let me how you are doing. I'm feel the same as you since March, but I'm also getting bad side effects from medicine, so you are lucky that you can take as much as necessary. Ask you doctor for carafate liquid, that helps a lot, but gives me headaches, lol. I'm also 30 and want to get pregnant. I'm terrified that I might not be able to survive the 9 months :), if my reflux gets worse while pregnant. I wanted to get the linx, but they said that its not recommended if you want to get pregnant.
You are not alone, wish you'll get better.

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 10/11/2012 6:44 PM (GMT -6)   
I ran out of Melatonin for a few nights and kept waking up with heartburn. I'm kinda scared to not take anything - since I can't sleep at all. But if it's part of the heartburn cycle then I need to. I feel like I'm so stuck!!

I didn't realize about the LINX and getting pregnant. I've read that people have had Nissen before they got pregnant to deal with everything better. I'm also terrified about what this would be like being pregnant! It's already so awful and messes up my everyday life.

The PPI's definitely give me side effects :( I hate taking them, but know right now it's better than not. I continue to have heartburn and indigestion. I get more headaches and feel exhausted and worn down.

Thanks for the good ideas!

christina29
New Member


Date Joined Nov 2012
Total Posts : 1
   Posted 11/1/2012 2:34 AM (GMT -6)   
Well I can honestly say I know how you feel. I gave birth to my son in 2007, my pregnancy was fairly good only slight reflux 5 or so days and gestational diabetes. However afterwards I wasn't feeling quite well and was subsequently diagnosed with Graves Disease. After 2 years of countless appointments they finally got my dosage right and I was later able to come off the medication altogether. However during this time I was strictly forbidden to fall pregnant again. A few weeks after being given the all clear and almost ready to start trying for baby number 2, I got food poisoning quite bad, during which I almost choked. Days after the food poisoning I was still ill so seeked a g.p's opinion. He told me the side effects I felt (Nausea, feeling of throat closing) were most likely acid reflux caused by the food poisoning and prescribed me zoton for a month or so.
 
At first I was reluctant to take them as I did not have heartburn and didn't believe it was reflux at all however after a few more restless nights sleep I gave in and took the tablets.... They worked. After the month was over I stopped taking the tablets as directed however within 8 hours I was feeling the telltale signs of reflux again. I also had to do the barium swallow (Yuk) and they discovered I indeed had GORD. After 9 months of Zoton which had to be increased to twice daily, I had to have an endoscopy during which they discovered a hiatal hernia, Gord and not much else (Caused by the violence of my food poisoning). I was pretty much given my marching orders with a note to continue the zoton.
 
I cut out my beloved coffee, cola and tea (my triggers) and found if I ate any pre-prepared food (subway, hungry jacks, salads, deli foods) I would be nauseous and spend the better half of the next day on the toilet. After almost 3 years of this, I know my triggers and hate not being able to dine out with my family, friends or other half.
 
I still have not continued to expand my family for fear of the reflux and hernia. I never wanted a big age gap between my children however it has just turned out this way,  I have been told chances are I will never come off my medication (I can't change that) given my time again I would have started trying for baby number 2 earlier regardless of the reflux. Sometimes I already feel like a 70 year old in a 26 year olds body and I am not going to put my life on hold any longer. My advice to you would be follow your heart.
 
P.S. my family don't understand it either quite frusrtating having to explain it over and over, and explain it is NOT just heartburn.
 
Goodluck to you xx

WJF
Regular Member


Date Joined Sep 2011
Total Posts : 273
   Posted 11/1/2012 7:45 AM (GMT -6)   
hi Christina,

I think you had experienced what is known as "acid rebound" when you stopped your Zoton without tapering off it. Do a search on this forum on "stopping nexium", you will find a mountain of threads discussing this annoying phenomenon.

I also believed your doctor doubled your Zoton dosage because he didn't believe in rebound and he thought your reflux had worsened.

Under twice daily of Zoton and a proper diet, do you still have daily symptoms?

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 11/1/2012 8:09 AM (GMT -6)   
Christina - a light bulb went off in my head while reading through your post. I had food poisoning about a month or 2 before my esophagus eroded. I didn't ever connect the dots. It was violent food poisoning too, I lost 11 pounds in 1 1/2 days, was throwing up NONSTOP. Wonder if that's what triggered this round of awfulness? I say round because it seems to come in cycles :(

I hope things go better for you. Sometimes I feel like "Screw it, I will have 2 kids now and just deal with it". But I know sometimes the pain is so unbearable I don't think I could deal with it even more often from being pregnant on top of it :(

Good luck!!!

WJF
Regular Member


Date Joined Sep 2011
Total Posts : 273
   Posted 11/3/2012 8:30 AM (GMT -6)   
Hi NoDoubtLove,

Like you, I am an underweight GERD sufferer. I find it hard to put on weight when following a GERD diet. Because it's basically low-fat and low-carb. I lost plenty of weight when I was on PPI which I am sure has caused my weight loss. I have stopped using PPI, obviously you can't do this, there are a few things you can do.

First of all, avoid all sleeping pills, they lengthen the LES relaxations at night and can cause severe damage to your esophagus. Melatonin on the other hand will help you. Also I read you had trouble after eating pineapple or spicy food. Both are big no for GERD patients.

Here are some diet modification that I have tried and it helped maintain my weight:

1. meal splitting - split 3 big meals into 3 medium + 2 small
2. chew
3. do not drink water during meals or within 1.5 hours after meals
4. change grain-based carbs (rice, oat) to flour-based carbs (noodles, bread) for easier digestion
5. drink Ensure Life, or any medical nutritional product (do not use it to replace your main meals, rather drink it in addition to your main meals)
6. have a little exercise after meals, and massage your stomach

I hope these will help. If your hernia is a serious one (> 3cm), you may want to consider Nissen or LINX, like others have suggested. Good luck.

NoDoubtLove
Regular Member


Date Joined Oct 2012
Total Posts : 359
   Posted 11/4/2012 5:51 PM (GMT -6)   
Thanks for the tips :) I don't ever eat spicy foods or pineapple (or a lot of other foods) anymore. Those are the ones that triggered it back when this first began :/ It's so exhausting trying to figure out food... I do break meals up - that seems to help a lot. I typically drink water nonstop because when I don't I get the sore throat and really raspy/hoarse sounding. Plus it feels like it comforts my stomach, if that makes any sense?

My hernia is "small" they said, so that's at least good. I am really hoping to be able to get LINX and get this drama behind me. I know it's not the 100% answer but it's GOT TO be better than the b.s. I'm going through now :/
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