Endoscopy Concerns

mrmusicman79 · 05-09-2004, 08:09 PM

Well, it's been a while since I've posted to this forum, so maybe I'd better recap my situation so far. I've been plagued with upper digestive problems for about 10 years. It started with nausea several hours after a meal, as well as overactive saliva glands. Over the years it grew into ever-worsening heartburn, and my eating being cut back more and more as time went by. In 2002 my doctor diagnosed me with H. Pylori, and after several months of stalling I reluctantly took the first treatment (Prevpac, 1 week). Within a week, the symptoms returned. I kept putting off treatment for many more months, and in August '03 the doctor did another blood test which still showed H. Pylori. So last fall I was given a stronger treatment (Losec 123-M) for double the recommended duration (two weeks instead of one). It still didn't work.
I've been on acid blockers (Prevacid) ever since to keep my heartburn from returning, and for the most part it works. But I really have very little quality of life. Severe problems with gas (stomach, not so much intestinal) make it difficult for me to do the most mundane things. I can't sit in the car for long periods of time. I can't sit still period, for very long. I have to constantly be moving around to be bringing up gas. If I don't, I soon feel downright nauseated and even sometimes get cramps.
As for eating, my diet is almost down to nothing. Breakfast consists of toast and crackers, dinner consists of rice, a muffin, and more crackers, and supper consists of a small beef burger (with bun only, I never liked any dressings to start with) and more crackers / light cookies. I also have some milk with each "meal".I haven't eaten peanut butter, ice cream, or any chocolate in years. I can't eat any spice, and I have to be careful how much salt, grease, and/or sugar I get in the few things I do eat. As a result of my poor diet, I've badly undernourished. I weigh less than 120 lbs despite my height of 5'11". Lack of vitamins and other minerals have left my immune system weak, my eyes sensitive to light, and other bothersome symptoms. Not to mention the agony of having to see others enjoying the foods I can no longer eat. I also have a fair bit of trouble with constipation, but this I could live with if it weren't for my other problems.
Now I'll get to the subject of my post........
My GP finally referred me to a GI specialist. My initial appointment consisted of a brief physical exam (feeling my chest for any obvious abnormalities) and a series of questions. Most were related to my history of symptoms, family history of GI problems, etc.
Anyway, this was his initial diagnosis. He believe many of my symptoms were caused by acid reflux, which he explained was an abnormal relaxation of a muscle at the base of the esophagus. He also thought it was possible that I may have some esophageol damage from the many years of reflux. He didn't think my history of H. Pylori was much of a contributing factor, and said it was unlikely that it was even still present after such strong antibiotic treatment. He also thought my overactive saliva glands were another side-effect of the reflux, but I have to wonder considering how severe this problem (salivary activity) has been. I mean, I can't even carry on a conversation without having to spit every few minutes. If you think that sounds disgusting, you're right. And this is what I have to live with everyday.
The specialist scheduled me for an endoscopy in June (the earliest possible opening), though I was very reluctant. But he made it clear that this was the only available option (except perhaps for a barium test, but IMO this would be much more unpleasant). To be honest, I'm absolutely dreading that day, and for several good reasons:
1. I'm afraid of side effects from the Versad.
I've never heard of anyone having side effects from it, but that doesn't stop me from worrying. It may sound stupid, but I'm even afraid of what effect my own worrying will have on me.
2. The procedure will upset my very specialized eating habits.
Over the past few years, I've had to change my eating habits to accomodate my special needs. I always have a small breakfast of toast and crackers, anywhere between 9:30 - 11:00 a.m. Dinner (lunch) always follows AT LEAST 3 - 3&1/2 hours later, and supper is always at least 4 - 5 hours later. So on a typical day, I would eat at 10:00 a.m., 1:30 p.m., and 7:00 p.m. This is my usual schedule at present. I can't allow much deviation from this routine, without risking digestive upset. The scheduled timing of the endoscopy presents a major problem for me. The earliest appointment I could get was 12:30 p.m. As you probably know, the patient must not have eaten for at least 12 hours before the procedure. Which means that my 10:00 a.m. breakfast will be pushed all the way to 1:00 p.m. or later. This is a major disruption to my schedule and it will almost certainly create problems for me.
3. I'm afraid of what the test might find.
The doctor made no bones about the fact that I may have damage to my esophagus, possibly requiring surgery. Having a tube put down my throat is bad enough, but surgery?? I don't have either the physical or mental capability to withstand something like that.
4. I'm afraid of what the test might NOT find.
If nothing shows up on this test, it means I'll face one of these two possibilities (or both): further tests, or drugs/treatment to somehow attempt to control my symptoms. Which means I'd have to live with my symptoms, to at least some degree, for the rest of my life.

At one point, the doctor implied that I may never again be able to eat normally. And if this is how I have to go through life, I don't want to live. I can't travel and go places like a normal person. I can't eat normal foods, and seeing other people eat normally is constant torment. My physical health is deteriorating from years of improper diet. My teeth are badly corroded with tartar, because I can't sit in a dentists chair long enough to have them cleaned. I can't sit and watch movies, talk on the phone, or even chat on the computer, without frequently getting up to burp myself or spit. I've had to watch all my friends, most of them younger than I, grow up, marry, have children, and realize their dreams, while I remain single and live with my parents, and barely make enough money to get by on. I fear, in fact I know, that I'm becoming a burden to my family because of my special needs. It's a struggle to get through each and every day, a struggle which I'm rapidly growing weary of.
I often ponder the hopelessness of my situation, and I consider how much better off my family would be without me. Every day I think about taking my life, not only to end my own suffering, but to relieve my family of this burden. I don't know why I was ever put on this earth, if my only purpose was to suffer like this. It's agonizing to look at the talents I've been given, and to be unable to make use of them because of my health problems. To be brutally honest, I wish I had never been born.
Well once again I've rambled on long enough to fill several chapters of a book. Not surprisingly, I had to type up this post in several stages, over the course of a few days. I (reluctantly) look forward to any advice you might have, though I realize that some will just accuse me of feeling sorry for myself. Doesn't matter, because I feel I have every right to feel sorry for myself. All I know is that this charade has gone on for far too long.
Thanks for taking the time to read all this......

suzyshop1 · 05-10-2004, 02:23 AM

Hi mrmusicman id wondered where you'd gotten too.Thought maybe things had gotten better for you,sorry to hear that they havent.Dont know if you remember me or not, but i replied to your posts a couple time way back when.Could you refresh my memory about your symptoms?What kinds of tests have you had done.?Have you been tested for ibs?How bout food allergies I have both ibs and acid reflux ,so i understand how you feel bout not having a normal life.Ppl around ya carrying on there everyday life and your stuck in limbo land not knowing what the heck is wrong with ya.Have you had a colonoscopy done?Ive had 2 endos done and a 3rd one on the way with no problems.Im am in the not knowing stage like you too.Ive also at one time or another thought and felt the same feelings you have mentioned.I live in fear of the unknown.I had tests galore with no answers .So i know how you feel about the tests not showing something that can be fixed.I feel like you too sometimes about how can i cope with this pain and fear of not knowing whats wrong with me, for the rest of my life.You cant travel and go to many places because of your symptoms ,i likewise find it difficult to sit still for any period of time.I am fearful that the doctors might not ever give me a diagnosis ,and i will just have to learn to live with the pain like you.I have ibs so that kinda puts a damper on me traveling or even eating out.When i go out i have to stop eating the night before just to be able to go out the next day.Ive been living like this since i was 17.My teeth are not in the best of shape because i cant sit still long enough in the dentist chair for him to work on them.My problem has disrupted my family life my husband doesnt seem to care what not knowing, whats wrong with me is doing to my mental state.I sometimes dont want to get out of bed,i figure whats the point.I know my husband is getting tired of my not feeling well and the endless tests im going thru.Sometimes i look at myself and say whats the use.Ive been thru numerous tests ,blood tests and still no answer.At one time or another alot of us feel overwhelmed and think we cant go on .Im sure you have parents who love you,or at least care about you.Do they know what your really feeling ,have you talked to them?How many doctors have you seen how many second opinions?You have every right to feel sorry for yourself Your sick and you have a right to know what is wrong with you.Please dont think your a burden to the ppl who care about you.Im sending you hugs.Please hang in there and dont give up on life.You sound like you could be suffering from some form of depression.Dont give up, life is worth living even if you have to take meds for pain.Have any of the doctors spoken to you about fundo surgery.I know surgery sounds frightening but its better than no options.If you need support and encouragment please come to the boards,where here to listen and give opinions.Im sending more hugs your way.Please hang in there.Take care my friend.

Lia813 · 05-10-2004, 12:57 PM

Hi, mrmusicman. I am so sorry you are going thru all this. I am new to GI disturbances , having had this for only 5 mos. and I can easily see why after all these years you are at the end of your rope. Of course you are depressed, who wouldn't be with the life style this problem has forced on you. I think my first course of action would be to get the Dr to give me an antidepressant . Then perhaps you can deal with all these tests better. I need to get on them myself as I am sick to death of all this esophagus trouble and nothing working and more and more tests looming. I am somewhat phobic about needles and medical procedures anyway and have many other medical problems. I just feel like it is all piling up and am really angry at getting this esophagus trouble on top of everything else. I have had the Barrium Swallow and it being non invasive I could deal with it better . Mine showed a big ulceration or mass on my esophagus. So I had to have an endoscopy , I was terrified , blood pressure absolutely thru the roof and then it showed NOTHING. Nothing wrong, so why do I have all this pain ?? Double up on the PPI's , add H2 Blockers and magnesium. Still sick, still bad chest pain , burping, gas , my esophagus hurts into my jaw and ear and especially in the chest and back. I have this pain upon each and every swallow , including water , so I eat. I may as well eat real food when the swallow is gonna hurt no matter what I eat. I am gonna have to throw in the towel and schedule the manometry , which I dread more than anything I have ever dreaded in my life. But I can't fix it and I can't deal with forever , just can't. I don't know how I'm gonna get thru it , I'll just have to somehow. You do the same, just go and let them do whatever they have to . Doesn't look like their treatments or procedures can get worse than what you are already dealing with. I'm scared to death to and sick of all this , so you are not alone. There are a bunch of us in this sinking boat. You'll make it, we'll help you . Lia

mrmusicman79 · 05-10-2004, 03:13 PM

Suzyshop: yes I remember you from before, I have an excellent memory as many people can attest. In reponse to your question, no I have not had a colonoscopy, but why would I need one? Just another unpleasantness to have to go through. The doctor did mention something about IBS with constipation, but to be honest he gave me so much stuff to think about that it was hard to digest (pardon the pun!) it all at once. As for antidepressants, well I've been on Prozac for six years! I've had a history of depression since my teens, but as Lia813 agreed, is it any wonder? My GP mentioned something about putting me on stronger antidepressants awhile ago, I got kind of mad at him and explained he'd feel the same way if he was in my shoes. It's been my long-standing opinion that antipressants (Prozac, Paxil, etc) only serve as a means of escape - they DO NOT solve a persons problems! Same as with weed or any other street drug. I personally would rather not be on antipressants, but I don't dare stop them for fear of what might happen. If by some miracle I should ever get my health straightened out, I will almost certainly stop taking this stuff.
A real mess indeed. Anyway, this is about as much as I can type in one sitting so I will close off for now. Thanks for your support.

suzyshop1 · 05-10-2004, 08:32 PM

Mrmusicman,have you had a hida scan with cck done?Is your gall bladder functioning ok?You can have nausea from a gall bladder problem.You said you have used prevac twice for an h.pylori problem.After the second course of antibiotics were you tested to see if it was gone?If so what test did they do to determine it was gone? In my opinion you sound like you have gerd and ibs.Since your having an endoscopy done why not have the colonoscopy done at the same time to rule out any bowel problems.My first gastro doc told me that the burning and aching pain i was feeling ,could be because of the h.pylori problem i was having.After my course of antibiotics they only tested me with a blood test to see if it was gone.The blood test is not the most reliable test to have done after the antibiotics.How many endoscopies have you had done?Could you be allergic to something your eating,or you could have ibs ,both will cause bowel problems with gas and constipation.When you get your endoscopy done are they going to do a biopsy too?That should show wether you are still h.pylori infected or not.I know its really hard to watch other ppl eat and you cant.I go to the beach sometimes and i have to sit there and watch my family eat all kinds of goodies and i cant because it might affect me in a negative way.Everytime i go anywhere i cant eat to i come home that night.And when i have an empty stomach then my acid reflux really gets going.Ive had ibs since i was 17 it wrecked my first marriage.I first started having acid problems in my early 20s.Im 47 now,so if anybody has a reason to commit sucide it should be me.To top that off im still in pain everyday, and now something is showing up in my blood tests.Like im not panicked enough that i have unexplained pain everyday.Now there doing countless blood tests to try and narrow it down.At least to know what i dont have.Do you hold down a job?Ive had 2 hida scans with cck ,a ct scan with barium,upper gi with barium and small bowel series,2 endoscopies,and now im on my way to having an endoscopy and colonoscpy done on the same day.I feel like a freakin pin cushion from blood tests.I am not going to stop till i get some answers good or bad.You think your frustrated,im scared to death that what i might have is some kind of progressive disease,that if not caught in time will kill me.So i know all of those feeling that your having.But even tho im in pain everyday life is preferrable to death.I have a family who cares about me and it would devastate them if i was to just give up and throw in the towel.Even if my husband is a real stinker the rest of my family is not.What kind of antidepressents have you been on?Theres big difference between not coping and trying to escape reality, and having a chemical inbalance.My brother is a manic depressive so i know what im talking about when it comes to meds.My brother is not trying to escape reality because he cant cope with life.Its in his brain that the problem is.Theres no shame in it .Maybe its time for you to be switched to another antidepressant.My brother has used paxil for yrs with no improvement,but because he is a vet the veterans adminstration with not pay for a more expensive drug.Just try to keep in perspective there is always some one worse off then you.I will keep you in my prayers and hope you find out soon what the problem is .Take care.