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Not fitting in and feeling alone with LPR. Help!

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GERD & Acid Reflux
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Posted 8/2/2009 3:01 AM (GMT 0)
I've had LPR for a little over a year now. I take 40mg of nexium twice a day. My biggest problem is I feel so very alone because this is not a common disease that people around me might have and that I can talk to that would understand what I am going through. I talk to family and friends, who have never heard of the disease until I was diagnosed with it, but I think it would help me cope with this better if I had someone feeling the same way about this disease to talk to. To go out to a restaurant, I find very difficult because you can't eat anything high in fat or spicy.  You basically have to stick to the bland diet that includes no sweets like cookies, cake, or ice cream in order to keep this disease under control. For breakfast, I eat cereal with soy milk, lunch turkey with soy cheese or tuna with little mayo, and dinner it's chicken or fish with a vegetable.  I don't feel like I fit in when everyone around me can eat anything they desire. If anyone has any food suggestions, I would greatly appreciate it. I can't believe after a year I'm still having a hard time accepting this disease. I guess it's knowing I have to eat this way for the rest of my life because if I don't I will get an ulcer on my vocal cord again. I have had the ulcer twice so far but by sticking strictly to the diet and I mean strictly the ulcer healed. I'm so glad I have found this website because I've been looking for awhile. If there is anyone out there feeling the same way please leave me a post and maybe we can get in contact with each other and talk.
Posted 8/2/2009 2:46 PM (GMT 0)
Ive had this disease for 4 years now....so yes i understand your pain.  And no one could possibly understand unless they've had it.   Its a nightmare/hell 0n earth
Posted 8/4/2009 5:48 AM (GMT 0)
Hi Kathyinthekitchen and Gabby123,

How are you both?

I am Maria.

I think I have gerd and lpr. I constanly get burn throat and tight neck. It is painful.

Yup, I also eat very strict diet. Strict diet doesn't seem to work for me at this point.

I took protonix 40/40 morning and evening - doesn't seem to help much.

I am also doing mediatation - help some.

Gabby123,

I saw some of your previous post, are you feelin better recently?

Are you taking any med to help you with gerd?

Hope you both feeling better soon.

Take care.

Maria

 

Posted 8/4/2009 2:01 PM (GMT 0)
Hi Kathy,
So sorry you're having so much trouble finding a diet that works for you. I'm sure it must be frustrating. As a GERD sufferer, I can understand looking around a restaurant and seeing people eating onion blossoms and drinking margaritas and knowing they don't have to worry about what they put into their stomach (well, really they should, but they don't HAVE to).

From what I'm reading here on the forum (mainly from GerberDaisy, who suffers from LPR) there isn't a clearcut answer, and that the Nissen Fundoplication surgery doesn't necessarily work for it. I don't understand how it couldn't help, though. I had the surgery although it wasn't positive that it could help me. My problem was uncontrolled asthma, and my GERD numbers weren't all that high. My doctors (family and asthma) kept nudging me towards the surgery, and although I wasn't a classic case, my GI doc referred me to a surgeon, and from there I made the decision to give it a try. It has made a tremendous difference. I had the surgery 5 months ago, and my lungs are clear for the first time in four years.

Post surgery, you still need to watch what you eat at the beginning. My stomach is reactive, so I still have to watch all the time. I pretty much eat whatever I want until I have a stomach upset, then go to more careful choices. (No onion blossoms or margaritas, though! LOL) However, it's HUGE improvement over what I was going through, and I've been able to reduce my use of steroids, which were causing some severe symptoms (I have some residual permanent damage, but at least it won't damage my body further), which is really important for my health. It's great to be GERD free!

I would suggest one thing, though. The less you fight your situation, and consider it "hell on earth", the more difficult it will be to be a happy person. Acceptance of your situation will make everything seem less horrible. If you can look for ways to introduce some more interesting choices into your diet (you can try things, and if they don't bother you, add them in). Look for the things you have to be grateful for in your life situation. Try not to focus on the negative. That only makes it harder to find happiness! You CAN have LPR, and stay positive! That's not to say that you won't continue to seek out answers. Hopefully GerberDaisy will respond to your post. You might want to do a Google Custom Search (located in the top right corner of this page) and look for her posts. She's been exploring surgical options, because of the same issues you're experiencing.

Welcome to the GERD forum! There are lots of supportive and informed members here, who will provide you with lots of information and encouragement!
Take care and stay positive!
Denise
Posted 8/4/2009 3:11 PM (GMT 0)
Hi Kathy, I too have LPR, and you're right... no one understands unless they are in your shoes. Even for those of us with LPR, there are variations of it and it's just hard.

I am still looking and fighting for an answer... getting all angles from this that I can. ENT dr's and GI dr's do not always see eye to eye on treatment. And both need to be on the same page for treatment.

I like you have a very hard time accepting whats happening, because for me, it came out of deep left field, and been here with me ever since. No one has a clear answer as to treatment, only... well, lets try this or that.

Not sure what tests you have done, but I have had a battery of them, like everyone else. 2 endoscopys, 24 hour pH, Bravo, upper GI, ummm...manometry. I think the most frustrating thing for me is that clearly from my test results something other than LPR is happening. Just because you LES functions well, SOMETHING is happening. Asking people to change their diets and taking a handful of pills may be a temporary fix, but not a final solution...IMO (Sorry, I think there was some venting going on there too)

My dad cooks at home, and I feel bad sometimes because he will make Indian food or Chinese.... and I have a special plate, the non spicy one. He cooks special for me, because he knows I will die if I eat things that are too spicy or Greasy... We went to the Garlic Festival a few weekends ago... I had a little food there, and it was filled with SOOO much garlic and oil I was miserable the rest of the day.

As for not being common... you are right there too... one GI dr told me she can count on one hand how many cases she has seen, with everyone varying on symptoms.

Hope this helps, and that you feel less alone now... As I continue my fight I will let you know what I find.

Let me know if you have any questions, and I can share with you what I have learned so fay :)

Jodee
Posted 8/4/2009 7:05 PM (GMT 0)
To all,

Yes, the Nissen surgery works but only if you have a very qualified surgeon who knows what he is doing and can preform the surgery with a loose wrap. Most problems are caused by the wrap being too tight.

I finally told my gatroenterologist that I could no longer live the way I was feeling. I didn't have the usual symptoms of heartburn, mine was a chronic cough and then sometimes reflux enough to spit up. My cough was a very hard cough. I didn't sleep and this caused me to have blood pressure spike.

Finally The GI did all the tests that are necessary to show I had reflux. Tthe 24hr pi test, swallow test, stomach emptying test etc.

Then I found the best bariatric surgeon I could find. He offered me a loose wrap and said he could help me. He did the surgery by lapro and I had a hiatal hernia which the surgeon suspected that I had and he repaired that. Life is great now. So when it becomes too much you just have to stand up to the GI dr (they tend to think we don't need surgery) and ask for the tests. If the 24hr test shows that you have your symptoms when you reflux the you can consider the surgery. No surgery should be taken lightly but I will tell you that should mine come unwrapped, I would do it again.

Follow all the rules after surgery and only eat about a cup (full liquid diet first 2 weeks or at least until you see the surgeon again) at a time or you will have gas pains that really really hurt. Just eat often - a hint -- oatmeal is considered full liquid and it really kept me from being hungry. I also used a blender for potato soup etc.

Once again research, research, research to find the best bariatric surgeon around, they know what they are doing and do lots of this surgery. I have chrons and had surgery for bowel resection and the surgeon that the GI dr was sending me to didn't do lapro, when I asked about it he recommended this surgeon. The GI's nurse had used him and I then used him for my Nissen.

Best of luck
Posted 8/4/2009 11:01 PM (GMT 0)
Hi Good Days,

Congratulation - that is great new.

Good Days, may I ask what is your score for 24PH study?

Mine was pretty bad - my dr recommand the surgery.

I had a 40 on 24HR with 90 episode.

Good Days - Is Thoracic Surgery the same thing as Bariatric surgery?

What is the different between a tight wrap and a loose wrap -

Thank you.

Marie

 

Posted 8/4/2009 11:09 PM (GMT 0)
Are you aware of the EsophyX procedure? Less healing time :-)

Joy

Posted 8/4/2009 11:50 PM (GMT 0)
 

Hi Joy,

Most dr that I have seen told me that Esophyx is too new to the market, and they don't have much input.

Joy, do you know  --> Esophyx is as durable and last as long as Nissen?

Some dr. told me that Nissen - on the average is 10year time. I heard sometime it can go over 10+ years., which is a very good thing.  Joy, do you run into anyone online that have this done?

Thank much.

Marie

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