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Old 08-16-2003, 04:45 PM   #1
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Post H. Pylori Treatment failed, what now?

My situation is about as complicated as they come. I will try to describe it as best I can, but be warned it is quite lengthy. Get yourself a coffee, cigarrette, or whatever else you use to pass time when sitting for long periods.....
I posted a message last October, regarding my situation at the time and wondering what my options were. At the time, I had not had any treatment.
Ten years ago, I was a happy, carefree teenager. My life was full of promise and potential, and I dreamed of the many things I could someday do. Today I'm 24 and miserable. My hopes and dreams, even my abilities to do and enjoy the most mundane things, have been vanquished by the merciless disease known as H. Pylori. I have tried to sum up the progress of this disease in the following "chart":

August 1994
First began experiencing symptoms (excessive saliva production, nausea several hours after eating (cured by eating again)
December 1995
Dropped all between-meal and bedtime snacks. Bedtime snacks would leave me feeling nauseated (and awake) for most of the nights, once these snacks were dropped, I slept much better.
1996
First began having the odd bit of trouble with heartburn, usually the next morning after having eaten something very sweet/greasy/etc the night before. Annoying, but not a major problem.
1997 through 1999 - symptoms gradually worsened
1999 - Dropped all soft-drink beverages (causing too much heartburn & gas). Also dropped all acidic beverages (apple juice, orange juice, etc).
1999
First began having problems with nausea & loose bowels early in morning, especially under unusual circumstances (such as away on a trip).
1999
First began noticing problems with gas (both stomach and intestinal). Mildly annoying but not enough to really slow me down.
2000 through 2001 - symptoms continue to worsen, by 2001 heartburn had become much more frequent and severe.
2002
Gas, especially stomach gas, now a major problem
June 2002 - Dropped Pop Tarts & Peanut Butter from diet
August 2002 - Diagnosed with H. Pylori (via blood sample)
December 2002 - First H. Pylori treatment (Prevpac, 7 days)
December 2002 - Dropped Ice Cream from diet
August 2003 - Dropped chicken, all chocolate, all granola bars, all highly-sugared foods from diet

Typical days diet, as of 1995 or '96
Breakfast : 2-3 pieces of toast (usually with Jelly or peanut butter)
Bowl of oatmeal or cereal, or bran muffin(s)
Granola bar or "Nutri-grain" bar
Dish of yogurt
Dinner : Chicken Burger with no dressings (the way I've always eaten them)
Dinner Roll w/ peanut butter
Cookies and / or other pastries for dessert, including any
kind of sweet pastry (nanaimo bars, chocolate cake, etc)
Supper : 2 Hot Dogs with rolls only, dinner roll, usual assortment of pastries
Bedtime Snack (before Dec. '95):
Potato Chips
Cookies

Typical days diet, as of today
Breakfast : 2 pieces of lightly-buttered toast
2-3 Arrowroot crackers
Dinner : Lightly buttered/salted rice, or potatoes
2-3 Digestive crackers
2-3 Arrowroot crackers
2-3 small shortbread cookies
Supper : Small plain beef burger
2-3 Digestive crackers
2-3 Arrowroot or Oatmeal crackers
2-3 small shortbread cookies
No bedtime or between-meal snacks
No bedtime or between-meal drinks of water (I purposely avoid strenous physical work, for this reason)

I never kept a journal of any of these things, I just have a good memory. You tend to remember more mundane things, when you have very little else going on in your life.
By this stage in life, I expected to have a decent job, a wife and perhaps children, and basically be a happy, productive member of society. But I'm just the opposite. I'm so plagued by digestive troubles today, that I cannot even carry on a conversation for more than a few minutes, cannot sit still for more than a few minutes (unless several hours or more after a meal), and basically can't do anything. Let me try to paint a clearer picture. I get up late (10-11 am) in the morning, and have what could hardly be considered a breakfast. 2 pieces of toast and some arrowroot crackers. It's hard to believe that such a small amount of bland food can actually give me heartburn, but it still does once in a while. I'm still taking Prevacid, which has greatly helped my heartburn, but I can only take it every two days because it causes too many problems (cramps, loose stools, and nausea) when I take it every day. Throughout the entire day, nomatter what I'm doing, I have to constantly move around to keep bringing up large amounts of gas. Also, my mouth runs way too much (something which has plagued me for many years) and forces me to have to spit frequently. If for example, somebody calls me on the phone, I have to move around while talking and be somewhere near a sink or window, where I can spit. Car rides? Only several hours after a meal. If less than 2-3 hours after a meal, I have to move around in the car to bring up gas, and often the ride will cause the gas to build up, leaving me to walk around for up to half an hour afterward to get rid of it. Not to mention having to make pit stops every few miles, as the large amount of water I drink to avoid heartburn gives me an overactive bladder (also a side-effect of Prozac). Carrying on a face-to-face conversation with someone? You can probably get the picture.
Needless to say, my quality of life is almost nil. I can only dream about things that most people take for granted. Things like being independant, being able to eat normal food, having a girlfriend or wife, etc. I scowl or flip the bird at the TV, every time I see a fast-food commercial (or anything depicting a romantic relationship between a young man and woman). I've become distant and estranged from my younger brother, who has overall turned out to be a normal and productive person (independant, has a job, and practically has to beat the girls off with a stick).
My doctor recently re-diagnosed me with H. Pylori, via a blood sample (he claims 8 months is not too soon for a 2nd blood test). He prescribed another treatment which involves Flagyl (metrodizone). The listed side effects of this drug are scary. Twitching, seizures, vomiting, and so on. He also suggested an endoscopy but after reading some info on those, I dont want to go through it. Among all these other things, I'm also terrified of medical procedures, and going in for anything like that would only enworsen the symptoms I already have.
I really don't know what to do at this point. I'm so tired of suffering, that I've pretty much given up and am now considering taking my own life. If this is what my life was meant to be, than I don't want to live. What good are my dreams and talents (including an IQ of 165) if this cursed disease has rendered them all useless?
Even if I don't kill myself, it's obvious that I can't live for very many years like this. Without exercise or anything even resembling a proper diet, my health will no doubt continue to decline.
At this point I've basically lost my will to live, and thats a lot coming from someone who takes Prozac daily.
Life can be so cruel. I can only hope that nobody ever falls me down this path of despair.
I should also mention that the treatment I took (amoxycillin/prevacid/biaxin) was a 7-day treatment. I took the doses at 10a.m. and 7 p.m. (to coincide with my strange mealtimes) and I've wondered if this was part of the reason it didn't work.
I also wonder if a street drug, such as marijuana, would make me more able to deal with treatments and side effects, and not worry so much. The only reason I haven't used it before, is because I don't want to destroy my brain (I've known many kids who friend their brains with drugs......).
I'd appreciate any advice, but at this point I've pretty much given up. Sorry to ruin anyones day with this saga of despair.

 
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Old 08-16-2003, 07:18 PM   #2
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Hi there. Well I didn't need coffee or a ciagarette or any other snack before reading your post, it wasn't that long! I don't have the same problems you have, I think I've got a gallbladder thing going on, but thats a whole other subject. I really think you should go for the scope. Your Dr. may be able to find out alot about whats causing you so many problems. I know many people who have had it done. I've never heard anything all that bad about it. Maybe a sore throat or a little bit tired or nauseated. Don't think about taking your own life. Who knows all the things you have to accomplish or the people you have to meet after you get this thing beat. Keep trying, Keep seeing your Dr. If your getting nowhere with him then change Drs. If your family wants to be there for you then let them help you. I'll be thinking of you, Hang in there.

 
Old 08-16-2003, 08:42 PM   #3
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Hi....I want to tell you exactly what is like having an EGD done....I have had many of them so I know the routine well....I not only have mine done for barretts esophagus surveillance and biopsies but also for dilation of my stricture about once every month....Believe me when I tell you this is a pain free test....when you get there the nursing staff will usually start an IV in your arm...The dr. will most likely come in and talk with you for a few minutes before the test...You will be laying a little on your left side while the test is performed...The Dr. will spray your throat with a numbing medication that you swallow. then he will inject meds into your IV and at that point you wont know anything else until it is over...The meds they use is called conscience sedation and most Drs. use a combination of versed and either demerol or morphine..I dont remember a thing from the time they are injecting my meds until they are waking me up...I have never even had a sore throat, not once!! You are a bit tired for the rest of the day but usually there is no ill side efefcts...He can tell alot from that test and you will receive a proper diagnosis....I know that illness can create alot of anxiety and depressed feelings but wouldnt it be better to know exactly what is going on and maybe receive more appropriate treatment that might help your symptoms and improve your quality of life?....This is an illness that can be treated and can get better.....You have your whole life ahead of you and with proper treatments and medical care Im sure you will be able to live it to the fullest...Also, tell your dr. or his nurse how anxious you are over having the EGD done and they will know how to help with that.....Life throws us curves all the time to test our strength and every time we make the curve we become stronger than before.... Dont give up because of this, GET PROACTIVE. Do whatever it takes to get better, then you will be out there giving your brother a run for his money....Please let us know how things go and when ever you want answers or need to vent, there is always someone near on here.....Good luck and hang in there....Cathy

 
Old 08-17-2003, 05:45 AM   #4
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I agree with Cathy.....get the endoscopy done. I haven't remembered a thing about my scopes either!!!

I've taken Flagyl several times with no problem. If you look at the information of any medicine that you get......you probably would not take any medicine. These medicines have to cover their axxes on everything.

Another thing......some people are wheat intolerant. They get heartburn from eathing anything with gluten.

Hang in there.....do whatever tests the doctor wants you to do and there should be a light at the end of the tunnel. Janetto

 
Old 08-17-2003, 06:39 AM   #5
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Hi,
I feel for you because i am right there with you, I spent eight months out of this year in the hospital, 26 weeks without coming home at all and then I would come home and spend one day and then go back in, it all started in the fourth grade and came to a head in December and was hospitalized, my biggest problem is gastroperesis(my stomache was not digesting anything it would all come back up) I went down to 75lbs (normal weight 110) my hair started to fall out and my teeth started to bleed. my teeth are now discolored from all the vomiting and 18 of them have pits in them all the way down to the soft tissue over $3,100 damage and they can't whiten them because of the damage and sensitivity. I have been through 14 EGD's and 2 ERCP(pancrease had to have stints in it 2 times and the ducts cut open as well as the bile ducts). They also had to take out my gall bladder it was diseased.
I am on Domperidone and have been since March,(for the gastroperesis) but I also have to take the Max dose because my stomache is in such bad shape. It has helped, I can eat on some days, but I have a G and J tube and generally have to be connected to a feeding tube for 12 hours a day. My G tube is used when the acid is really bad or I try to eat and it won't digest,(i hook it up to a catheter bag and let the bile,acid or food drain, sometimes I have to use it for a whole day) this was the only way we could stop my vomiting. I vomited for six months w/o stopping. I also have severe pain (chronic Abd pain) but I also have pancreatitis, acid reflux, Gerd, Alkaline reflux, spastic colon, and IBS, and have had ulcers in my stomach and throat and have had H-pylori. If the Domperidone stops working for me they want to send me to Kansas to a motility clinic for a pacemaker. My pain is also so bad that I have been on Diladud since April, it makes my stomache worse even though all my meds go through my J tube (to my intestines) so they are talking about putting a pain pump in my spine. For my H-pylori I was treated with IV erythromyacin(for several days), reglan.
I have been fighting these problems for 15 years, and have been misdiagnosed and told it was all in my head several times before going to a big University hospital where they found my problems.
I almost died in January, and am in constant pain so I now about qualuity of life, but you can't let your health get you down. I went through a very deep deppresion in the winter while dealing with this I even lost everyone I thought where my friends and even my boyfriend because he said it was too much to deal with, but I found my way back. As far as finding a spouse be concerned about your health right now and there are wonderful women out there who will not care that you have an illness, just like someday I find the right guy who it won't be an issue with. On my really bad days where I am in so much pain I don't want to get out of bed I force myself because we can't stop living what normalcy of life we can find.

Okay I'm off my soap box now and I don't by any means, mean to sound mean but I know exactly where you are and I had to find my way back, to be somewhat of the normal person I use to be. By the way when I got sick I lost my 99 firebird which only had 8 months left to pay on it, I lost my job, had no insurance and lost my friends at the same time, and I blamed God, I never had felt so alone in my life, I am filing bankruptcy, but I look at it as a new start, you'll find your way, I hope this helps you.
Andy
By the way I am a female and just turned 24

 
Old 08-17-2003, 07:26 AM   #6
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As you know you diet is not one that builds health. It lacks protein, veggies and complex carbohydrates.

Without the building blocks for all the functions that take place in the human body. Your life will not be good --- Mentally, emotionally or physically.

I read that lack of knowledge is a poor excuse for bad health. I suggest you start learning how to improve your health. I found many years ago that no one is going to do it for you.

The choices we all make in life have consequences that you have to live with----.

We are all so different --- we hope you make the educated choices !!


 
Old 08-17-2003, 07:49 AM   #7
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Cathy, you said that the treatment is not that big a deal. I have heard otherwise from other people, including other posters on this board. Most notably, of reactions to the IV (severe nausea, vomiting, etc). I had many severe reactions to injections (booster shots etc) as a child, and probably I would have reactions to this too. Can't they do this procedure with you awake?
Someone else suggested that Flagyl isn't all that bad. What about when combined with (ugh) Biaxin? Biaxin has a bad enough taste by itself, I can only imagine the two of these medications together. Aren't there any other treatments available?

andylw: I feel sorry for anyone who has had to go through what you have. My problem has been just the opposite; instead of not digesting, my stomach produces too much acid and gas. As for the saliva problem, I really don't know what causes this.
As for the point of finding a mate / spouse who will tolerate someone with an illness, this isn't really the point. The point is, how could I ever carry on a relationship, if I can't even talk for more than a few minutes without spitting & burping, can't eat normal food, can't go for long drives, can't go to restaurants (how many restaurants serve Arrowroot cookies? In order to support a relationship, a person has to be comfortable and at ease with themselves, something which I most certainly am not. Like I said before, normal people take so much for granted.....
My dreams are tormented by visions of the things I'd like to do, and the places I'd like to go, and the realization that I may never see any of these things. I'm also haunted by dreams of my (relatively) happy childhood, wishing that I could go back to it and never return.
Thanks for your comments.

 
Old 08-17-2003, 10:31 AM   #8
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No offense but get off your soap box, I can't eat at resturaunts I have to take a feeding pump in a backpack. None of us in this bullettin are handed the ideal life but we have to do what we can to make the best of the life we are given, My best friend died of cancer at twenty one with a small child left behind, and when she was sick she was too busy to let it get her down, she new she had limitted time left and put her pain, nausea, vomitting, and kemo to the side to live what life was left to the best. This is what I reminded my self of when I went through my deppresion, my situation could always be worse, don't feel sorry for me because I feel very blessed that I didn't die and even though I have to deal with these 2 tubes hanging out of my abdomen, an uncomfortable hickman in my neck, and all the pain, I wouldn't take the alternative. And I understand that; that, is the difference between us but there are alot of people out there with disabilities, people who can't speak at all, can't see, or hear but they find a way to adjust thier lives and many of them didn't spend there childhood disabled either, we can't choose our future, my life is suppose to be cut very short (so the doctors say my pancreas is all ready burned up)but I refuse to believe that, I have also been told I will never be able to have children naturally, but it doesn't mean that is God's will. I understand you are very depresses and have a very hard time dealing with what you will have to face medically and invasivouly, but you have to believe you will make it through, maybe you should ask the Dr.'s about giving your system a rest and going on TPN's or Tube Feeding for a while or see a dietician that can make you a healthier diet that is designed specifically for you body and it's needs.
By the way my stomache also produces to much acid which is why I have the acid reflux and I take 4 30mg prevacids the day, the reason my stomache doesn't digest is because the muscles are parylized and can not contract to push the food to the intestines.

[This message has been edited by andylw_00 (edited 08-17-2003).]

[This message has been edited by andylw_00 (edited 08-17-2003).]

 
Old 08-17-2003, 12:20 PM   #9
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All I can tell you is that my personal experience with EGDs are not painful....I do think for you to ask to see a nutritionist is a very good idea, you are not geting enough nourshishment of the right food groups to be healthy..Listen to what Andy says he has given you very good advise.....Life is alot not fair, a lesson we all learn...Do I think its fair that I had to fight an invasive cancer 8 yrs ago and now very possibly might be facing another cancer diagnosis....HELL NO!...Am I giving up because of it? Nope!!!.....If your Dr. is aware of your reactions to injections Im sure he has alternate ways of dealing with the procedure but you would have to ask him about those ways...Im certain there is help for you and a way you can improve your quality of life but you have to be willing to allow those things to occur.....If you dwell on the negative and not the positive then you are punishing yourself....I imagine there are a few people in the "minority" that do have a bad experience with EGDs or other tests, but you can dwell on that or just take a chance, so what if you dont have such a positive test like most of us do. Its not the end of the world and you will certainly survive it..Personally and I know you are male so you wont relate but having a pap test is alot worse than any EGD Ive ever had.....Sitting around, not having testing for proper diagnosis, not getting the right nutrition is all things you have the capability to change.....Get well so you can live your life....good luck

 
Old 08-18-2003, 07:21 AM   #10
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Hi Mrmusicman,

I'd just like to agree that the endoscopy, at least for me, was very simple and easy. I didn't feel a thing and I am afraid of medical procedures as well. The kind of reactions you were talking about with the Flagyl, I had them with Reglan. Face twitching and severe neck cramping. I went to the ER but it wasn't permanently serious, just took some drugs to counteract it and I was fine. Maybe it's worth the risk if the Flagyl may help you. But I also want to say that I know where you're coming from and man I feel for you. I have chronic prostatitis in addition to my GERD, and it ain't no picnic, that's for sure. People sometimes don't seem to understand that when you are in constant pain or discomfort, pretty much everything is rendered unenjoyable/pointless. Yes, there are people who have worse things, but that doesn't cancel out what you have or make it better. I read a book recently that made a good point. It talked about how a man who is paralyzed from the waist down cannot walk, but if he is well-adjusted and otherwise healthy he can live a much better life than, say, a person with chronic severe back pain. Now I am not saying at all that I would like to be paralyzed, or would prefer it to what I have, or anything else like that. But I think the example illustrates a larger principle that in the face of chronic distress -that is, constant physical pain or discomfort, bombarding the brain all day long - it is very difficult to live a full life because the person simply cannot escape the discomfort, they are preocuppied with it and forced to deal with it all day long, often it is impossible to ignore it. Anyway, those are just my thoughts. I hope everyone here finds relief.

 
Old 08-18-2003, 02:01 PM   #11
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mrmusicanman 79,did the doctor say why he only put you on the prevpac for 7 days?Also if it didnt work for you they can switch you to other antibotics.In very small cases some ppl can be resistent to certain antibiotics.Ive had and endoscopy done twice ,both times i had no problem.How well the procedure goes has alot to do with the doctors expertise.When i had my endoscopy done they ran and iv in my arm.Felt little drowsy,they wheeled me in the room stuck a plastic thing in my mouth and i was out.This is coming from a person who has ibs ,gerd and panic attacks.I ddnt have a problem wth the endoscopy at all.

------------------

 
Old 08-18-2003, 04:12 PM   #12
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When my doctor originally prescribed that treatment, his approach was "Try this first, if it doesn't work we'll try something stronger". He was aware of my fear of medical procedures, and was probably trying to make it easier for me. Also, he claimed his patients had a very good success rate, with this exact treatment.
It would have been quite difficult to take that stuff for more than a week, believe me (especially with the horrible taste). What are the chances that a 2-week treatment of this, or any other group of antibiotics, will actually cure me? My biggest fear is that the second treatment won't work either, and then where will I be?
Also, can't a endoscopy be done without putting you under anesthetic?
Thanks for the advice.

 
Old 08-25-2003, 07:23 PM   #13
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Mrmusicman79 when your in alot of pain your willing to grasp at any straws to get better.I was diagnosed with h.pylori couple months ago.I did the prevpac thing for 2 weeks.After it was over the same exact symptoms were back.I tried to get the doctor to understand that i thought that the antibiotics did'nt work for me.He did'nt want to hear it ,just dismissed it like it could'nt possibly happen.If the prevpac is supposed to eradicate this bug why do i still have the same exact symptoms?Either it was not h.pylori to begin with ,or else the antibiotics did'nt work .Duh you think the doctor could figure that one out.So ive decided to take this into my own hands.Harry on this board here mentioned something natural called mastica gum.Did my own research on it sounds like it might work.Its natural so it cant hurt .So what have i got to lose so i sent for some.It should be here in a couple days.I have really bad pain so if it works i'll know it.I'll post back and let you know.My heart goes out to anyone suffering with this problem.Take care.

 
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