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Sick and tired of being sick and tired - contemplating Nissen

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Posted 3/3/2011 1:28 PM (GMT 0)
Hi everybody,

I am so glad I found this forum. It is by far the most useful of all the websites I've visited during my struggle with GERD.

As I am typing this, desperation overwhelms me. I would just close the blinds, turn off the phone and never see anybody again, just drown in my misery.

I am an otherwise healthy 30 year old male, ex professional athlete and GERD has broken me into pieces in the last year and a half. It all started with a simple cold that just never went away. It was about a year and a half ago, I just got sick and although my other symptoms went away, the tennis ball in my throat seems to be here to stay. The doctor I went to immediately suspected GERD.

From there it was just downhill. I have developed difficulties breathing, constant sore throat, wheezing and overwhelming fatigue that kills any desire to do anything or go anywhere. I have been on medication for a couple of months but it only offers minimal relief. It helped a bit with the breathing, I am not struggling for every breath, but the throat inflammation is still there and I basically feel like s... all day long.

I am following the diet (even though I read about a study conducted at Stanford in 2006 that concluded that evidence supporting the thesis that diet works for GERD are weak at best).

I have my upper bed elevated although it is causing me the world of trouble with my lower back and there is zero chance that I will be able to sleep like this my whole life without ending up in a wheelchair. Also, I can't sleep in the same bed as my girlfriend since the elevated bed gives her terrible headaches, I am guessing it's circulation issues.

So, basically I am a 24/7 professional GERD patient. Each move I make is pre-determined by my condition. I lost all capability for pleasure of any kind. I am a shell.

The worst part is how dismissive my doctors are about my pain and suffering. It is unbelievable to me that they all have the story about things being in my head. So, imagine this, just had a gastroscopy and the diagnosis was GERD and a hiatus hernia. So, that's the diagnosis. But when I complain that I have these common symptoms of GERD I get the talk about finding my inner strength and always that darn sentence "Don't think about it!"

They found no esophagitis and little inflammation in the stomach. No Helicobacter and the hernia is small - about 2 cm.

The bottom line is, I am planning to loose some more weight that I gained in this period and if that doesn't work, I just refuse to give life up like this. I will probably have the Nissen and accept all the risk that go with it. If I get the constant diarrhea, I will just stay home forever. That's what I am doing now, anyway...

Sorry for the long post, my mind is a mess right now... smhair
Posted 3/3/2011 2:04 PM (GMT 0)
Good Morning kefalo,

I understand your feelings from 2 ways - my husband has had Crohn's disease for 34 years and I have have anxiety/ depression for 29 years and now GERD for the past  10 years.

I am sick and tired of battling all of this but have realized that life keeps moving forward  so I celebrate the good times and deal with the not so good times in my own way with the help of the members here in the forum.

Chronic illness is a life-changing experience for everyone, and each person’s journey is very different; but there are experiences we all recognize as well. How many of us have lost jobs, friends, spouses, homes, and family members to our disease? No matter what illness we have, we share so much that we can connect on a level that many will never understand unless the journey comes to them. We share symptoms, and losses, and lessons; and we share the understanding that our lives will never be the same because the illness, the journey, has changed us in ways that can never be undone.

Even if we were to wake up tomorrow and be healthy again, even if by some miracle we were cured; the experience has changed us in fundamental ways, and the lessons it has taught us can never be unlearned.

Have you ever thought of seeing a therapist to talk about your feelings?

Self-care is a very important part of managing a chronic illness, and you deserve to take good care of yourself.

Again a warm welcome to HealingWell.

Kindly,

Kitt

Posted 3/3/2011 2:32 PM (GMT 0)
Hi Kitt,

Such wise and kind words. I thank you for each and every word.

I have been on antidepressants for a while now, but I am guilty of missing the control session. I should have seen my therapist about 2 months ago and I didn't. I am not sure why, I think I might be afraid of she getting me off the antidepressants.

Here is the thing, before my illness I had an extremely stressful couple of years. I lost my mother who was everything for me. I was depressed and as a result of that I lost my fiancee, which I believed at the time was the love of my life. My world crashed. I left the job that was making me miserable and opened a restaurant. Invested everything I had and took a loan. Was working 17-18 hours days and it was great for a while, but as the crisis kicked in it went under leaving me with bank loans and debts to suppliers.

Since I couldn't find a job, I made one. I started my own internet business and again worked 20 hours days.

Now, it is all going pretty smoothly and I am happy with that part of my life, but instead of being able to just relax for a while I was struck by this thing. No peace for me again.

I was very relieved to read the posts about Nissen surgery here. People seem much more realistic and it's great that people that are OK return to share their experience.

It's easy to get discouraged about the surgery, because those who are satisfied with their procedure never want to look back again, let alone post on forums. Those who are miserable are looking for help and share their misery after the surgery. As a result, the impression is that this is a terrible thing that leaves most people crippled.

Only when I've seen this website where people post about realistic experiences is that I was a bit relieved that things are not so bad.

You are so right about the lessons learned and I think that if I beat this thing I will be a much better and happier person than I would be if it didn't happen. It changed me and I think it would give me the zest for life I never really had. If I just could get some relief...

Thanks for the gentle, thoughtful words wink
Posted 3/3/2011 3:55 PM (GMT 0)
Hi, Your post sounded so much like me when I was first stricken with this illness.  For lack of a better work itreally does SUCK.

Anyway, the point of my post to you is to give you hope.  When I first got this 3.5 years ago I honestly thought I was going to die.  I didn't know what was going on and I felt so sick and desparate.  I had to go off on long term disability as I became so anxious and depressed I really couldn't get out of bed.  My blankets became my best friend.

Fast forward 2 years later....yes I still have symptoms despite being on PPIs (40 mg of Nexium) but as SKITT has said you enjoy the good times ....the times when you feell good (and they do come).  And you cope with the down times...you find ways to manage this illness.  For me it was a process of acceptance that my life has changed and to thank GOD for having a clean gatroscopy and barium swallow (the barium swallow confirmed the GERD diagnosis) but no strictures, etc.

I have had many people around me have cancer, MS, ALS and when I think about there struggles I feel blessed.  I know GERD is no fun (but what illness is?) but if you take care of yourself including your mental state.....I believe you can live a long life.  I know people who have had GERD for 30 years (and have had it severe) they seem to be still bouncing around (thankfully).  I believe when you have an illness such as ours because it can play on your emotional state it is hard.  That is why a positive attitude is everything.  Really work hard on the mental state...I know for me that goes a long way.

I wish you good health in the future -- both mentally & physically. 

Eugenia

Posted 3/3/2011 5:18 PM (GMT 0)
kefalo

Thank you for the nice comment.  I try to keep in mind that chronic illness and depression/anxiety go hand in hand. Depression is a natural part of dealing with a chronic illness. When your body is challenged physically, it often times challenges the affects of your brain chemicals which can lead to depression. Not to mention that with a chronic illness a person is dealing with an avalanche of new experiences both physical and emotional and that can affect their emotional health. 

Sometimes it is hard to tell which came first the chicken or the egg. 

What does it matter ? We have got a tasty egg and some tender chicken to eat. 

Take care of the whole you and life will look better my friend.

Kindly,

Kitt


Posted 3/3/2011 6:28 PM (GMT 0)
The thing is, this is not a situation that can be maintained for me. The main reason is that after just a week or so of sleeping on a reclined bed my old friends lower back problems are going crazy. It is impossible for me to sleep like this forever. Just impossible. Aside the fact that the sleep I am getting is not really restorative and I am not sure whether it's the Omeprezole or the lack of deep sleep that makes me a wreck during the days.

Can't really say I am depressed, since I know very well what depression feels like so I cannot dismiss my fatigue being a part of depression. I am just very mad.

And I would struggle with all that and I would persevere if my GERD went away , but when you dedicate your whole day to just thinking about what to eat and what not to eat and how to sleep and when to sleep and how to sit and a million of other things and at the end of the day, you feel NO better, we'll that's where it gets too much.

I appreciate everyone's experiences and you might be stronger than I am, but I will never accept thing as they are now. I'll try everything, I'll loose weight, I'll try some alternative therapy ( I am actually seeing somebody for this end of march), I will try water fasting (although t might seem counterproductive I've seen people with amazing success stories), I will try this new drug I learned about called Baclofen that is said to reduce mistakes in the way LES works by 40%, I will try maintaining nutrition that maximizes secretion of gastrin that is proven to increase the LES pressure, and if this thing doesn't go away I will have the surgery, no doubt abut it.

I only have one life

Post Edited (kefalo) : 3/3/2011 11:31:27 AM (GMT-7)

Posted 3/3/2011 8:10 PM (GMT 0)
Hi kefalo,

Sounds like you are going through the usual "hitting bottom" that many GERD sufferers go through. The doctors are dismissive because people rarely die from GERD, even though we often feel like we might.

It doesn't sound like you've really explored the medication options fully. Omeprezole isn't very good at controlling acid in my experience. Have you tried something stronger like Nexium or Prevacid? If you are constantly feeling a tennis ball in your throat, then it sounds like you are not reducing the acid in your esophagus sufficiently. I take 60mg of Prevacid 24hr per day, and any less than that just doesn't get the job done.

Not sure what to tell you about the elevated bed causing back problems since I don't have that problem. Elevating the bed is critical because lying down at night is probably when most of the damage is being done to your throat. Maybe some back strengthening exercises would help, or using a neck traction device at night to reduce stress on the back. Sometimes when I go to bed I prop myself up with several pillows and sleep lightly for the first few hours. After that my stomach is more empty and it's safe to toss the pillows aside and lie down more fully for a deeper sleep.

GERD is a long term problem, so finding out how to control your acid exposure is best approached with a lot of patience and experimentation.
Posted 3/3/2011 8:28 PM (GMT 0)
Believe me, I've been having the back problems for over a decade and there isn't a single thing in the book that I haven't tried.

I would like to know this - is there any chance that I would be able to sleep horizontally again if things go well? Anybody returned from "the other side to normal sleeping"?

I hate the fact that where I live, there is nobody doing the Endocinch procedure since it seems like a good idea.

The doctor that was doing my gastroscopy has been the head of GI section of the most prominent medical institution around here for 20 years. He told me to forget surgery since my esophagus is not inflammed, I don't have any damage or ulcers in there and I don't have Helicobacter.

He said and nobody would operate me because they have this "Do not harm" rule in medicine. The worst part is conveying what you feel. When I say that I cannot breathe he says that I am focusing on that too much. I am focusing on not being able to breathe !!????? What is that??? Are we speaking the same language?

All I could think of is what it would be like to pull a plastic bag over his head and when he struggles for air tell him that he focuses too much on the fact that he has a plastic bag over his head.
Posted 3/4/2011 1:45 AM (GMT 0)
Kefalo,
Speaking as a fellow back sufferer and "can't breath" person I understand your frustrations about trying to get a doctor to listen to you and trying to find a solution.
First question...have you considered seeing a different doctor?
My first GI kept saying the surgery is terrible and it won't help your lungs. I found a different doctor who told me that some GI do not recognize that there is Asthma induced GERD out there and they believe the surgery will not help.

Second question...Have you tried stronger medicine?
I was on 80mg of Nexium and 300mg of Zantac before it stopped working for me.

The Nissen fundoplication is not really that bad. I had the laproscopic fundo (270 degree wrap) 14 months ago and my asthma is so much better.
Posted 3/4/2011 2:42 AM (GMT 0)
The first thing I did is check my heart and my lungs and I showed no signs of asthma. I am afraid I might develop it in time.

The doctor I am currently seeing is actually a third opinion and they all passionately stand against surgery, against Nissen at least.

I will talk to my doctor about increasing the dosage, but it seems that the meds are getting me very sleepy.

I have just sent a couple of emails to doctors I found who performed Endocinch in my area.

Will keep everybody posted...
Posted 3/4/2011 2:58 PM (GMT 0)
I used to have a problem with PPI medication making me sleepy. What turned out to be causing it was I needed to take a timed release version, otherwise I was getting too big a spike of the medication shortly after I took it.

I also shifted the time of day I took the medication and that helped a lot. I take half my dose before dinner and the other half at bedtime, so if it makes me sleepy I just sleep through it. :) I never take the PPI medication during the day, and since I'm upright all day I don't need it at that time.
Posted 3/4/2011 4:49 PM (GMT 0)
That's great if that works for you Speden, but that cannot be applied generally, because the pressure in the stomach is immense and gravity is not a necessary factor for reflux, it can just gush out whenever a mistake happens in the way LES closes the stomach, or in other words when it opens spontaneously, fails to close right after food is swallowed or just has low pressure.

I will look into the time release version of drugs, I did notice that I get drowsy in the morning and I feel better in the afternoons and evenings.

Thanks for the thought
Posted 3/6/2011 9:23 PM (GMT 0)
Just wanted to update everyone about what I am doing about my GERD, since these information might help other "Gerders" :)

I contacted a surgeon in my area who I found to be performing Endocinch. I also contacted the manufacturer of the devices needed for Endocinch.

The person from the customer support of the manufacturer told me that "the procedure is not available at the moment" and that they are working on a new device that will be much better and easier to work with.

At the same time I received a response from the surgeon saying that he is performing the surgery and that it costs 10.000 euros. In response to my questions he said that they have a 70% success rate, that he is not in favor of second interventions in those who have issues after the Endocinch procedure and that he think that such patients should move on to fundoplication right away.

When I asked the manufacturer what do they mean when they say that "the procedure is not available" and informed them that I have just received an offer and gave the name of the hospital and the surgeon, they told me that my surgeon is trained for the procedure but there are very few doctors who are still performing the procedure. They also told me that the main reason is in the fact that Endocinch is not a permanent solution and there is no way to tell how long it will last. And yes, the surgeon told me that they have performed around 30 Endocinch procedures and the longest the stitches have lasted is 3 and a half years (and counting).

When I asked him about Nissen he told me that they only did 120 degrees Nissen, that they have 95% success with it. He also told me that diarrhea happened in those with a bad diet after the surgery and never lasted beyond the couple of months of recovery. Diarrhea and dumping syndrome are my biggest fears regarding Nissen.

Weighing my options...
Posted 3/6/2011 10:24 PM (GMT 0)
Hi kefalo,

It is so good to read you have been advocating for yourself.  I am a low back pain person, too, from a heniated disc but all I have been offered is PT and some Flexiril.  I will be seeing my PCP tomorrow to deal with a few things that have been going on.

"When the world says, “Give up,” Hope whispers, “Try it one more time.”

Kindly,

Kitt


 
Posted 3/6/2011 10:41 PM (GMT 0)
My diarrhea after my surgery lasted one week during the liquid diet. I've hadn't had any dumping since.
Posted 3/7/2011 12:22 AM (GMT 0)
Hey Kitt, thanks for the kind words. That's just the way I am, I just won't accept that just because a muscle in my body decided to loosen up I somehow lost the right to a pain-free life , which is what I often feel my doctors are telling me. Joy, thanks for sharing. It means so much to hear from someone who's actually done it. I was worried about a study I read that reported that 14% of patients developed diarrhea that lasted beyond 2 years after the surgery. That was a terrifying number.

I don't know about you guys, I am guessing that your doctors are much better and more understanding, but I live in an underdeveloped country and it seems that these doctors here have to offer the same things they had 20 years ago. My own research brought me a lot more than they ever did.

It seem that they lack the will to keep up with the news in the field. None of them told me about the ability of Gastrin to increase LES pressure, none of them told me about that Baclofen drug that is lowering the number of mistakes in the working of LES, and I have so many other examples. I have very little confidence in my doctors at the moment and I have the feeling that after a couple of months of research I know more about this thing than all of them combined. I really do. And it's a terrible feeling, too.

I've made this decision - by this time next year I will be my old self.

I will follow the conservative instructions to the letter. The boring terrible diet that makes me miserable, the bed that is killing my back, the drugs that are turning me into a walking zombie who is sleeping 12 hours per day...all of the terrible rules...

I'll give that a chance till October and if I still have any pain, if my throat is still inflamed, if I still have problems breathing, if I still have the lump in my neck, if I still have constant phlegm and always fatigued I am having the surgery. That's it. Even if an army of doctors suggests otherwise.

That way I'll go through the recovery during the winter and not loose a day of my precious summer.

I'll use this thread as a diary of my road to my old self.

Down with GERD mad scool
Posted 3/8/2011 12:22 AM (GMT 0)
That's the stand to take! Persaverence!
Keep up the fight! :)
Posted 3/8/2011 4:16 PM (GMT 0)
Kefalo, I'm at about the same place you are. I'm 32, healthy (or, at least, I was healthy), and discouraged about the prospect of living with a debilitating chronic illness for the rest of my time here. I never realized how much satisfaction I got from rest, food, and exercise. My wife tells me that she reaches for me at night only to bump up against this awkward wedge. I go out to dinner and watch my friends enjoying glasses of wine, while I sit there taking a few sips of water. And I'm already tiring of oatmeal and bland fish after little more than a month. At 6'2", my typical healthy weight is 185. I'm now at 175 and am consistently losing about a pound a week. I don't see how it's biologically possible for me keep eating these tiny, fat-free meals for the rest of my life. I've always counted my high metabolism as a blessing -- until now. And because I can't keep on weight, I'm afraid to exercise, because exercise will only accelerate my caloric burn. Of course, failing to exercise will harm me in other ways over the long term.

Fortunately, my caring, informed doctors have the cure: partially mask my symptoms with semi-effective, semi-safe drugs for the rest of my life, and make sure never to eat or drink anything enjoyable.

The silver lining in all of this is that my symptoms have never been severe or painful. I know that a lot of people have it a lot worse than I do, and I'm thankful that I can keep the worst symptoms at bay.
Posted 3/8/2011 4:48 PM (GMT 0)
Hi miketx,

my doctor tells me to stop "avoiding responsibility" and get back to normal living and exercise. That's why I 'm saying that I would like him to spend a day in my body.

I am trying to exercise, but first of all, i feel so sluggish that it's hard to make myself go to the gym in the first place. I think the main reason I feel like this is the throat inflammation and the fatigue that comes as a side effects of Omeprasole.

That is why I am saying that this situation is not an option for me. I'll either get better or get under that knife.

And about the food, I completely understand. Think about it - what is the single strongest urge and passion of a human being. Is it sex? No, it's not. We develop the sex urge in our teen years and we have that compelling urge for food since the moment we left the womb. Nobody should live like this.

Having said that, let me say that I think that I could live like this if I completely healed. it would kind of be a blessing in disguise for me since I have been looking to loose that extra weight. I work out and am very muscular, but I wasn't lean since high school.

But to deny oneself of everything and still feel like a wreck, A-A! Not gonna happen. Not me.

The scary thing is that I don't have the feeling that some of the deprivation has strong scientific evidence behind it. A study conducted at the Stanford school of medicine concluded that "there’s insufficient evidence to support the notion that eating these foods will make heartburn worse—or that cutting them out will make it go away."

Here is the link to Stanford website where the study is published: med.stanford.edu/news_releases/2006/june/heartburn.html

I apologize if anybody finds that I am stirring the water here, but it just makes me mad that this disease is so under-treated and misunderstood and above all scorned.

Post Edited (kefalo) : 3/8/2011 10:05:48 AM (GMT-7)

Posted 3/8/2011 6:18 PM (GMT 0)
I jumped on the surgery bandwagon for a couple of weeks. Since then, I've climbed down after reading a lot of negative anecdotes and learning that, for reasons that are largely understood, surgery benefits some suffers more than others.

That doesn't mean that I'm anti-surgery. My GI tells me that, at 5 years, 85% of nissen patients are pleased with their results, and 60% are PPI-free. Obviously, the Internet horror stories come from a vocal minority of patients. I want to take things very slowly and determine whether surgery is likely to benefit me -- i.e., verify, to the extent possible, that I won't become part of the vocal minority -- before making a decision about whether or not to go under the knife. I'd hate to go through the expense, pain, and downtime of surgery only to learn that my underlying problem is motility-related and cannot be addressed through LES surgery!

about the Stanford study: I'm pretty sure that was a "meta" study in which the researchers found that prior studies had not sufficiently controlled for other factors to support a strong conclusion that other factors cause reflux episodes. That's a little different than doing a study to test for those factors and affirmatively finding that the factors don't contribute to heartburn. There may be no rigorous study to support a conclusion that spicy food will cause a sufferer to have a reflux episode, but I know what happens when I eat that way, and I reckon others do, too.

Edit: here's a Q&A with Gersen from 2009: www.ncbi.nlm.nih.gov/pmc/articles/PMC2886414/. The takeaway is that she tells patients to eat what they want and record what causes them problems. If spicy food, wine, coffee, or chocolate causes a problem, cut it out. I suspect that most people will ultimately eliminate most of those foods through her course of treatment, but I could be wrong.

Post Edited (miketx) : 3/8/2011 11:32:22 AM (GMT-7)

Posted 3/8/2011 6:52 PM (GMT 0)
Of course, that is all I am saying, that at the end you have to keep track of what aggravates your condition. I am just saying that I feel like the doctors tend to generalize and if it was up to them we would all be eating cooked meat and toast.

An illustration of what I am saying - my doctor told me to stop eating apples when I know that ever since I was a child my mother told me to have an apple when I have heartburn and it always worked for me. I have also found apples to be one of the most frequently mentioned alternative remedies for Gerd.
Posted 3/8/2011 6:57 PM (GMT 0)
Yes! I agree 100%. I don't feel like my doctors care about me at all. They see their job as symptom control. If they tell all patients to eliminate most foods and take PPIs for the rest of their lives, most symptoms will go away. Problem solved! Never mind that the typical course of treatment may be unnecessary, may have serious negative physical side effects, and is certain significantly to diminish quality of life.
Posted 3/8/2011 7:11 PM (GMT 0)
I am still looking for that normal doctor that will see me as a person that needs to actually live with what they are telling me.

It seems that my visits to them are about them. If they have a shred of a doubt that exercise will worsen my symptoms, never minding for my words that I cannot live without exercise and that exercise is also my business.

I don't want to be extreme and I want to give recognition to those doctors that care and that actually think about their patient as a person. I am just saying that I am still looking for that doctor where I live.

And what should one do now? I feel guilty when I have a bite of spicy food or sweets. I don't have heartburn so that I can keep track of what makes it worse, I only have a silent reflux and atypical symptoms that don't change rapidly.

At the moment I only know that over-eating destroys me completely.

Being confused, I decided to take the conservative path and avoid any food that they are mentioning.

I am not sure, however, how long I can take it.
Posted 3/8/2011 8:15 PM (GMT 0)
I am having a Nissen 270 at the end of this month, I will keep you posted as to the outcome. I just finished Halo Abalation treatments for Barrets. And hopefully the nissen will get rid of the misery that you have been describing. I have a couple of friends that have had the Nissen and they all are quite happy, saying it was the best thing they ever did. The reason for the 270' wrap is because I have poor motility, which when I talked to the surgeon he told me that my motility may improve after surgery. I don't know if I want to do another motility test just to see.....but I hope he is correct!
Posted 3/8/2011 8:18 PM (GMT 0)
I suspect that I may have a motility issue as well. How does the 270 improve motility?
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