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  • My Story So Far

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    Old 05-13-2020, 05:29 PM   #1
    packrat79's Avatar
    Join Date: May 2020
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    My Story So Far

    My problems first began in 1994, when I was 15, shortly after a particularly nasty case of chickenpox. I started noticing a mild feeling of nausea a couple of hours after meals, which went away the next time I ate. Although it concerned me, I never had it checked into and was able to manage in spite of it.
    It was around this same time that I also noticed, and how could I not, that I was salivating much more than before - to the point where it became necessary to spit regularly. It's a problem that has plagued me to this day, a long story within itself, but that's as far as I'm going to elaborate on it for now.
    I also noticed that when I had a sore throat with a cold, I now had a lot of heartburn and reflux, worsening the salivating, particularly at bedtime (I was still eating bedtime snacks at this point).
    I should also mention that my diet, at this time, wasn't exactly the healthiest. No fruits or veggies (except potatoes and the odd banana), but lots of meats and diary. I was also pretty fond of sugary foods. It was also around the time these problems began, that I had been given some *extremely* sour candy (I think they were called Tearjerkers) by a friend, that I could hardly stand to eat. I long blamed this for starting my salivating problem, but now doubt it was a factor.
    I was also fond of having bedtime snacks, but by the end of 1995 these were causing enough trouble (and sleepless nights) that I was forced to give them up entirely.
    In 1999 I was put on Prozac to treat things like anxiety and depression. Initially I was on 40mg/day, which I later cut back to 20. Within a few months, I noticed a bit of a problem was gas, particularly with sugary foods like ice cream and soda pop - but for the most part it wasn't bothersome enough to worry about. I am still on Prozac today, now at 40mg/day again.
    In spite of the aforementioned problems, I was still able to live a reasonably normal life - except for having to spit so often - at least until 2002. By then, I started having ever-worsening trouble with heartburn, something which had only been occasional up until this point. It was extremely bad in the morning but would lessen throughout the day. I also found that foods like ice cream and soda pop caused an excessive amount of gas. I finally went to the doctor, and was tested for H. Pylori, found positive, and given a round of nasty antibiotics for it. The heartburn soon returned so I was prescribed Prevacid (a PPI), which alleviated the heartburn but had a hefty trade-off. I had less appetite now and many foods, particularly meat, were now much harder to digest. Favorites like chocolate and peanut butter caused so much upset that I had to give them up entirely. I compromised by taking the acid blocker every other day, allowing me to eat a bit more on the days between - but the richest and sweetest foods still caused too much upset for me to eat them. Gas also started becoming much more bothersome at this point, requiring me to bring it up frequently throughout the day and eventually limiting how long I could sit or stand still.
    I eventually started seeking advice from internet newsgroups, and someone finally enlightened me to the idea of candida overgrowth. But treating it seemed so extreme - a meat and vegetables only diet for example, when starches and dairy were my staples - that I was always afraid to fully confront it. I also mentioned the idea to my doctor, but he only scoffed saying that "true systemiatic candida infections are rare". I never brought up the subject to my doctor again, certain that my problems were indeed candida-related and that the medical system was not going to be able to help me.
    So I continued to tolerate my symptoms and try to live as normally as I could, even though I was severely limited by my gas, salivation, and ever-decreasing energy levels. As my digestive symtoms slowly worsened, I began eating less and walking more to alleviate the symptoms. By 2018, I was spending as much as 8 hours a day walking - not always vigorously, but at least just enough to keep things moving.
    In January of 2019 things suddenly became far worse. I started having severe heartburn, a feeling of nausea, and pains in my stomach. I was forced to eat even less, and by February I had dropped to just 90 pounds. I finally went back to the doctor and at this point he thought there may be ulceration, and ordered an endoscopy - that was in March and I'm still waiting for it. But considering the stress such a procedure would cause me at this point, it may be just as well. I'm certain of ulceration and again I don't think the doctors will address the root of the problem, especially if it really is candida-related.
    My doctor did however switch my Prevacid to Pantoprazole, which reduced the symptoms just enough that I was able to start regaining a bit of weight - but only with an extremely limited diet. By now I could no longer eat any rice or meat at all - literally just toast, crackers, potato chips, milk, and a bit of popcorn. Sugars were now limited to about 2 grams per day, and only in dilute form such as bread or mildly-sweetened crackers like Ritz.
    At this point, as mentioned, I can't digest anything heartier than toast, crackers, potato chips, and small amounts of popcorn. Here is what a typical days food might consist of:

    Breakfast - 65g toast, 40-50g crackers, 2 tbsp butter, 1 cup milk, 1 tbsp coconut oil
    Dinner - 65g toast, 20-35g crackers, 1.5 tbsp butter, 1.5 cup milk, Probiotic pill
    Supper - 55g total chips / pretzels / popcorn, 1/2 cup milk

    Total caloric intake is about 1900 on a good day, 1700 on bad days. It provides me just enough energy to walk to digest my food (about 5-6000 steps a day, according to my Fitbit), but little more.

    Everything I eat has to be measured both for weight and for calories - too little, and I starve, too much, and it causes upset. And the extreme sensitivity of my stomach cannot be overstated. In addition to any deviation from the above limits, it is also extremely sensitive to physical stress - things like coughing, sneezing, or even pressing on my stomach can be enough to cause flare-ups. It is also extremely sensitive to emotional stress - anything that causes my heart to race - even being startled by a sudden, loud noise for example - is enough to do it. The symptoms are usually immediate, and in addition to digestive upset they include pains in my stomach, a gnawing feeling coming up my esophagus (sometimes causing me to taste or even, in rare cases, spit up blood), and a nauseated feeling which can be quite bad. When a flare-up does occur, there's nothing I can take to treat it (more on that later), I can only tough it out by eating even less and walking even more. Many times, I've had to eat knowing full well what upset this simple meal is going to cause, having to force myself to eat so I don't starve...........
    I can sit for about 25-30 minutes after breakfast, and about 15-20 minutes after dinner or supper, before becoming uncomfortable enough that I have to start walking. I have to remain walking, at least intermittently, until my food is digested - I can tell not so much by feeling hungry, but when I stop bringing up gas (the sense of hunger is often false). Digestion time is usually quite predictable - about 3 1/2 hours for breakfast, 4 1/2 hours for dinner, and 3 1/2 hours for supper. On days my stomach is worse, I have to start walking almost immediately after eating, and extra walking may be required to alleviate the symptoms - often to the point where I'm very weak and hungry. I can only lay down on an empty stomach, so needless to say I've gone to bed hungry on many, many, many, many nights. In worst cases, such as when I've had to eat even less due to stomach upset, the hunger makes it difficult to sleep.

    Needless to say, such a poor diet has led to a host of other health problems, too many to mention here. The one that concerns me most, however, is an ever-decreasing ability to feel pleasure for what I can still enjoy or desire for the many things I've missed out on. For example, a few months ago the sight of foods I could no longer eat produced a tremendous sense of longing - now I feel little desire for them at all. It's one thing to be in such a dire state of health and miss out on so many things in life - to not care it about, however, is something that truly frightens me.
    One particularly bothersome health issue began in 2010, when I started having symptoms of prostatitis. I soon went to the doctor for this and was given antibiotics, but they only seemed to make it worse. After stopping the antibiotics, the symptoms eventually improved but have come and gone ever since. At best they are only mildly bothersome, but still I've had to limit many contributing factors such as physical stress - for example, I haven't been able to ride a bicycle for ten years now. I also noticed that these symptoms seem to flare up when I have a head cold, or if I've breathed enough of certain chemical fumes such as auto body fill. The symptoms got really bad late last summer, and I finally went to the doctor again. He prescribed a sulfa drug but I don't dare take it considering the shape my stomach is in. Since then, the symptoms have again come and gone but are still often very bothersome..........yogurt..........
    In the fall of 2018 I began having major issues with my sinuses, hacking up gobs of green or brown mucus all day - and night long. I finally went to the doctor for this, and was prescribed a mild antibiotic for what was believed to be a sinus infection. Eventually the symptoms did ease up, but traces of it remain to this day. I hack up the odd bit of mucus (usually yellow) now and then, but not usually enough to become bothersome or cause me to lose sleep. However, my sinuses have remained EXTREMELY sensitive ever since. Even a slight whiff of anything irritating - smoke, dust, mold, etc. - and mucus starts draining down my throat. If I've breathed more than a little of such things, I often bring up bloody mucus the next morning. There have also been several major flare-ups, always connected to breathing a significant amount of something that irritates - causing my sinuses to bleed profusely, hacking up mouthfuls of blood. These scary episodes last about half an hour, but thankfully I haven't had one of these for a while - perhaps because I'm now extremely careful of what I breathe. It's worth nothing that the blood / drainage ALWAYS comes from the back of my sinuses, NEVER out my nose. I've often wondered if this issue might in some way be connected to my stomach problems, or vise versa.
    One other health issue has been tension headaches, something I've had a real problem with now for the last ten years or so. For years, I took Tylenol to help with these, but it eventually became less effective - and now my stomach can't tolerate it at all. Even when it could, it still caused upset including much more gas than usual. If I made the mistake of taking it with my probiotic, this made the gas really bad. But the Tylenol did have one positive, and curious side effect - an increased ability to feel pleasure from things like music, scenery, etc - particularly the day after.
    I've also had a lot of trouble with my eyes, something I first noticed around the time I first had to reduce my eating due to the acid blockers. My vision is alright, but my eyes have become increasingly prone to strain from things like reading, bright light, etc. At first this wasn't a major issue, but over the years it has gotten progressively worse. I'm now at the point where I can hardly do any reading at all, can only watch TV or look at acomputer screen for a few minutes at a time (and with the brightness way down), and I have to constantly avoid brightly-lit areas - I now cannot go outside on a sunny day, or when snow is on the ground, unless wearing sunglasses - and even then I find it strenuous.
    Obsessive behavior is also a major problem for me, although it may not necessarily be connected to me digestive issues. I was diagnosed with OCD in 1998, mostly for things like hand washing. Now that I think of it, I can remember signs of obsessive behaviors as far back as age seven - but it didn't really become a problem until my teens. Today, hand washing is one of the few things I don't obsess about, but obsession thoughts and behaviors plague me pretty much from the time I wake up in the morning to the time I go to sleep at night. And sleep is another problem - I also have a major problem relaxing and falling asleep. I CANNOT sleep without white noise (an FM radio off the station) or some similar form of sound.
    My doctor did prescribe Sulcrafate last March, and I had high hopes for this is many people claimed it worked wonders for ulcers. However, it only caused severe nausea and irritation for me, so I had to stop taking it almost immediately. Another treatment I tried was Pepto-Bismol; this provided some momentary relief but quickly turned to irritation - I suspect the sucralose sweetener was the culprit. More recently, I tried a non-flavored bismuth tablet, but this too only caused the ulcer to flare - even if I crushed it into a powder before taking.
    At this point the only other remedy I've yet to try is Lily of The Desert's Stomach Formula. Other people have had good success with it, but at this point I don't want to try anything else without first seeking some advice. I should mention that I do take a probiotic every day (Natural Essentials Ultimate Multi Probiotic), as well as about 1 tbsp of coconut oil on crackers, and about a spoonful of unsweetened yogurt.

    Ultimately, I believe all of these problems originated with candida overgrowth, probably after that nasty case of Chickenpox. I think the antidepressants made things worse by slowing my motility, and the acid blockers, though they cured the worst of my heartburn, were only treating the symptoms and not the cause - and reducing the acid slowed my motility even further.

    At this point you're probably wondering why any sane person would have tolerated these symptoms for so many years without seeking help. For me, the reasons are perhaps more spiritual than psychological - I believe I was running from God, choosing instead to distract myself with entertainment, work, and hobbies rather than submit to Him and allow Him to guide me through the tremendous challenge of confronting my health issues. But I have now reached the point where I can no longer run, my health so poor that these material things are no longer able to distract me. Now that I have finally surrendered to the Lord's calling, I'm ready to confront my health issues and I'm confident that He will guide me to a solution, no matter how impossible it may seem. I don't expect Him to fully restore everything that I've lost and missed out on, as I realize that I will have to live with at least some consequences of my rebellion, but I'm am certain that He will give me whatever is needed to live out His plan for whatever remains of my life. And if by His grace that should include such priveleges as a wife and children, or even the ability to eat and enjoy food like a normal person, I know that I will appreciate and thank Him for those things perhaps more than anyone else on this earth.


    It is now early May. The above was written this February, in little bits at a time as I was able, with little proofreading. I am only posting it now for a variety of reasons, but I think the most prominent of all is that I've simply been afraid to face my problems. But things have gotten so much worse now that it can wait no longer, so I am finally committing this to God's care and trusting that He will guide me to whatever help I need. I've put this off for far, far too long and have nearly paid with my life I am sure. I cannot fully articulate exactly how bad things have been but suffice to say I'm sure it's only by His grace that I still have anything left of my sanity - or my life itself.
    The biggest physical problem now, as I see it, is the inability for my food to digest, and the need for so much walking to do it. Having to talk an average of 7500 steps a day to digest a maximum of 1900 calories is hard enough to begin with, but is now almost impossible. It is becoming ever harder for me to walk - by the time I'm hungry, I can barely stand up. It is critical that I somehow reduce the need for so much walking to digest my food, so that my body can begin regaining some of it's lost weight. I presently weigh about 98 pounds and have hovered around there for about the last eight months.
    Also critical right now is some way to at least temporarily relieve my symptoms, such as heartburn and gas.... so far the only thing that helps is walking until I'm hungry, and as I said this is becoming less and less feasible. The only remedy I can yet think of to try is Lily of The Desert Stomach Forumla, although I realize that I can't put my total faith in one single product and that this might not help anyway. But something, somehow, at some point has to help - and I have faith that I will be directed to it when the time is right.
    The severe sensitivity of my stomach cannot be understaded - the slightest discernable taste of peanut butter, egg, cheese, or even a drop of corn syrup on a cracker is enough to worsen my digestive symptoms.
    The mental issues, such as severe anxiety particularly around mealtimes, are perhaps the most distressing. Someday I hope to elaborate on that further, and hopefully from the perspective of looking back to see how much progress I've made.
    It's certainly a complicated situation - an extreme example of what can happen when one ignores their physical - and spiritual - needs for long enough. But with God, all things are possible, and it's my belief that he can make of me another extreme example - of from what depths he can rescue a person from the pit of self-destruction.
    A couple of other things worth noting:
    -If food from a previous meal is not fully digested before eating again, the next meal has much less appeal and tends to cause upset such as heartburn. This is why I haven't eaten between meals or near bedtime in so many years.
    -My prostate symptoms, which still give me a lot of trouble, seem to be worse when I'm hungry for some reason.
    -I should note that the bleeding sinus issue has been solved - a long story, but it turned out to be a throat irritation caused by clearing it too much. It's a glimmer of hope amidst an otherwise very dark situation, and hopefully a sign of things to come.

    And that's my story so far.... with God's grace, and perhaps your help, may I yet be able to yet write a happy ending to it.

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    Old 05-17-2020, 11:33 AM   #2
    packrat79's Avatar
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    Re: My Story So Far

    No replies yet, but there is some new information that I should add. For some time now I've been having symptoms of hypoglycemia (low blood sugar), like weak legs, tingling in my hands and arms, dizziness, and confusion - worst when I'm most hungry, but sometimes eating seems to make it worse also. In the last week however, these symptoms have been severe and quite scary at times. Last week I had tried eating more and
    snacking a bit between meals (totalling up to 2000 calories a day) - it seemed to only make these symptoms far worse. In desperation I tried eating less one day (about 1,750 cals in all) and to my surprise felt considerably better, though still far from what would be considered healthy. By bedtime, however, things were starting to flare up again and I thought maybe I should eat something, but tried not to. By midnight I was extremely disoriented, dizzy, and my hands were tingling so severely I could hardly touch anything.

    I was barely able to make it to the kitchen and eat a few crackers, which revived me enough to make it through the night. Since then, I've been very careful to not allow myself to get too hungry, which has prevented another such episode but of course makes food less appetizing. My old standby of going hungry to alleviate digestive upset is now no longer an option, making things far more complicated.

    I should note that I have checked both my blood pressure and blood sugar, before breakfast and supper, and both are within normal range.

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