Hi everyone. I'm suffering from a terrible endless bout of what seems to be IBS and would like your thoughts on what my problem is and what I should do about it. I know this is inexcusably long, but this is really a pretty terrifying time in my life now and I have visions of needing to be hospitalized for malnutrition since I can eat hardly anything, and weeks and weeks are going by with no improvement. So please be kind and consider the details, and give me your expert opinions
I am a white caucasian American male about to have a (probably very unhappy) 25th birthday, as far as vital stats go. No known health conditions besides this, no history of illness worth mentioning, etc. I do have a slightly anxious temperament and a recurring issue with squeamishness-driven vasovagal syncope (triggers mostly related to medical procedures, so I haven't had the benefit of a blood test to help determine whether my GI problems are IBS).So, on to business. I think it's significant that I have a phobia of gastrointestinal discomfort, which formed when I was a very young child due to a traumatic experience during an (apparently) run-of-the-mill stomach virus. This phobia really is pretty strong and extends deep into my psyche. I've worked with it using various kinds of affirmations, hypnosis, meditation, etc. and have managed to take the bite out of it somewhat over the years, but it's still there and probably always will be.I started getting sporadic occasional GI attacks a few years later in childhood. For the first few years they virtually always came on at night right after getting into bed, but by the teenage years this predictability was gone. Symptoms: initially an extremely vague but very troubling feeling of general malaise and oversensitivity throughout the entire upper and lower abdomen, progressing within minutes to a considerable bloating of the gut area with copious amounts of gas and noisiness (and often a little nausea). After some time, "soft", gradual-onset/gradual-release cramping of the intestine often starts, and leads to urgency and a bowel movement after a varying amount of time. The character of the bowel movement varies wildly but it usually isn't too healthy looking (too soft, too rough in texture, too smooth in texture, too light, too dark, and thin/strictured being the most common trouble signs, with constipation and diarrhea both being occasional but rare). Generally little if any mucus and never any visible blood in stool. Gradual relief from all symptoms typically begins shortly after a bowel movement, but not necessarily the first one; total attack duration one to four hours or so. It's also worth mentioning that on occasion, instead of being relieved by a bowel movement(s), an attack will be *triggered by* a bowel movement, though this is the much less common variant.These sound like pretty classic IBS attacks, right? So for years I would get these things occasionally in several different permutations and levels of severity, ranging from the annoying but brief cramping-urgency-evacuation-relief phenomenon while out and about to the debilitating multi-hour prolonged episode spent contemplating the texture of my bedroom ceiling and bathroom floor. It was always a serious, serious drag, but something I could live with. Not long after I started college, however (about 7 years ago), the nastier attacks started coming on more frequently, as much as a few times a month, with all symptoms amped up from what they had ever been before. I started getting gradual-onset episodes that would wake me up from a sound sleep, which I know is atypical of IBS, but the thing is, it wasn't pain or cramping that was waking me up, it was gas and queasiness. As I said earlier, I don't get pain and cramping early on in these attacks, if I get them at all. This change motivated me to see a GI specialist, who examined me, told me he thought it was IBS, and prescribed Librax. I was reluctant to take the Librax because of its side effects so I waited it out a while and found that the attacks started happening less and less all on their own. Soon things were back to the way they had been and I moved on.Years passed before the real GI problems amped up again, but some other mildly alarming, possibly related issues that started in late adolescence persisted in the meantime:- Occasional phenomenon of a sudden, excruciating but brief sharp cramp in the lower abdomen and rectum preceding a large bowel movement. Typical cramp duration only about thirty seconds, with recurrences every ten minutes or so until evacuation. No signs of major trouble in stool and no further symptoms whatsoever after bowel movement.- Bouts of moderate pain/soreness at one specific small localized spot on the abdomen, just millimeters to the right of the navel, in the absence of any other symptoms, coming and going for a few minutes at a time over the course of an hour or two and then disappearing for weeks or months.- Bouts of strange sharp pains in the front upper torso (chest and sides), shooting up and down and seemingly never in the same place twice, always aggravated by inhalation and nearly always while lying in the fetal position. This probably sounds very alarming, but in practice it was just annoying. Flipping over onto my back and breathing carefully and shallow would generally stop the problem instantly. I think these were reflections of minor gas pains, as there was always some present in the gut if I cared to look for it. This would happen during periods where I wasn't even getting GI attacks and there were no further symptoms associated.In recent years, all three of these phenomena have disappeared almost completely. However, a new and very troubling phase has started with the GI attacks. In the Spring of 2008, I had an attack with the same exact symptoms as outlined earlier, except with the severity and duration both dialed up to the point where I was convinced for a long time that it had to be an actual illness, or a bout of food poisoning, or something. The cramping was strong enough to double me over on the toilet gritting my teeth for hours on end. The initial wave took most of a day to die down. Subsequent waves were milder and milder as I gradually began eating again. It all faded gradually and by day ten or so I no longer had detectable symptoms. Chalked it up as a one-time freak occurrence and moved on. Things went back to "normal" (i.e. occasional regular-strength attacks).Four months ago, almost the exact same thing happened again. This time, however, I had actually eaten something slightly suspect which seemed to trigger it (a slice of onion that had been in the refrigerator for quite a while), so again I couldn't help but think it was likely to be food poisoning (I'm actually still not 100% sure). There were also two very alarming one-time-only things that happened when this attack came on, never before or since: 1) Instead of starting with the feelings of malaise/sensitivity/queasiness in the gut, the attack started with a several-hour bout of bizarre dizziness. I felt normal as long as my head was completely upright, but if I tilted it significantly in any direction, the room would immediately begin spinning wildly and nauseatingly. This went away completely on its own after a few hours, and soon after, all the GI problems hit; and, 2) During the initial wave of GI symptoms I became much more nauseated than usual and vomited once. This is the only time I've ever vomited during an attack. The vomit was intensely acidic and burned excruciatingly; it also contained large pieces of completely undigested food despite this being a good 10-11 hours after eating. The rest of the attack went exactly as the previous one I described, with gradual decrease of symptoms until none were detectable by day 10 or so. Chalked it up as a two-time occurrence and moved on, hoping I'd at the very least get another year and a half of peace. Things went back to "normal" again.Five weeks ago, I started getting the mildest variety of my usual attacks once a day, every day. This was alarming; I had never had "regular" attacks on consecutive days before. This lasted a few days and then vanished. However, after a few days of peace (just about four weeks ago), another severe attack hit, and this time, for the first time in my life, it's not going away. I have no reason to believe that this will change any time in the forseeable future, so I'm in the highly distressing position of being able to eat virtually nothing, and I'm therefore losing weight, which is a big problem because I weigh hardly anything to begin with (not due to health problems, just my natural body type). Even more maddening is that I have absolutely no loss of appetite whatsoever, so I'm RAVENOUSLY hungry at all times, often even during waves of symptoms (a good sign, but torturous!)Here's the strange thing, and I think this is the key to understanding what's going on. In my current state, I do in fact have the ability to eat a select few foods with zero problems whatsoever. One of these is simple pasta (i.e. no egg). So I can eat heaping bowl after heaping bowl of egg-free noodles and experience zero symptoms, day after day. However, if I then eat a small handful of an "unsafe" food (i.e. virtually anything, even bread or crackers), the full attack symptoms start right back up several hours later, and I then have to fast until my symptoms are gone (typically a little over 24 hours after last food intake). It is UTTERLY MYSTIFYING to me how it's possible for an endless number of big bowls of pasta to be fine, yet a single piece of white bread featuring nearly the same ingredients and nutritional content causes major problems. Explaining this bizarre fact would seem to hold the key to figuring out what the heck is wrong with me. Here are the foods I've tried since this started, and the results
asta with no egg in ingredients (multiple brands and shapes tried): no problems whatsoever.Pasta with identical ingredients list as above plus egg yolk/small amt saturated fat and cholesterol: major problems.White rice: no problems.White bread/toast: moderate problems.Very salty chicken broth: no problems.Saltine crackers (have small amt saturated fat, no cholesterol): major problems.Breakfast cereal (several varieties tried): varying problems, may not be as predictable. Need to try more.Arrowroot cookies: varying problems, may not be as predictable. Need to try more.Lemon-lime Gatorade (has plenty of high fructose corn syrup): No problems.I've tried these things multiple times, so you can rest assured that when I say something gives me problems or doesn't, it's repeatable and systemic. As you can see, I still haven't given any fruit or vegetables a shot. I know I should, but I'm sort of at the point where I'm scared to do any more experimenting. The attacks aren't really getting progressively worse (everything seems to be in total stasis) but I just can't keep dealing with the rollercoaster. On the other hand, I obviously can't expect to consume nothing but egg-free pasta, white rice, chicken broth and gatorade and avoid serious malnutrition, so I have to do something. Any and all attempts to explain my very bizarre new collection of food tolerances would be quite welcome!I have, of course, seen multiple doctors over these past few weeks as well, including a GI specialist whose sub-specialty is motility. Opinions are so far unanimous that my GI attacks are far more likely to be IBS than anything else, but I'd also like this community's opinion. (IBD seems like a bad match for my complex of symptoms to me, and the doctors all seem to think a bacterial or parasitic infection is exceedingly unlikely. Celiac seems like a near impossibility, especially since the pasta that's working out so well for me is high in gluten. The doctors seem to be in agreement with me on all this.) I was also prescribed Librax again, and this time I gave it a try. Bad idea; I apparently do not react well to benzodiazepines. After my first pill I initially got the sedative effect you're supposed to get, but a few hours later there was a nasty rebound effect and I spent the entire night gripped by tremors, sleeplessness, racing heart and low-grade panic. Meanwhile, the antispasmodic component didn't really seem to help.There is one final thing I should mention, as it seems quite likely to be heavily related. For nearly a decade I've been into meditation. At first I did it to achieve a calmer disposition and enhanced inner peace. Before long these goals were more or less realized and I started getting more and more into the "freaky trancy altered state of consciousness" aspect of meditation. Recently, I've experienced massive breakthroughs on that front, and a quite suspicious amount of correlation seems to exist between those and GI flare-ups. The November '09 flare-up shortly followed a breakthrough, and this current horrible flare-up shortly followed a much bigger breakthrough. These breakthroughs seem to involve what amounts to conscious manipulation of some aspect of the nervous system; the latest one gave me the ability to instantly invoke a state of consciousness in which pleasurable tingling and chills go up and down the spine and through the limbs. As wild as that sounds, it's actually common enough among meditators and I've never heard of it bringing on health problems, but then again, I'm doing this without guidance and I'm using my own made-up, unusual mental techniques to do it, so who knows. Obviously, my immediate reaction to a flare-up is always to instantly cease all altered state and meditation activities, but that hasn't helped at all this time, and I'm not getting even slightly better, so I tried starting up the altered state stuff again, cautiously, to see what would happen. No effect whatsoever on my condition, for the better or the worse.Whew! That took long enough! I know it's utterly audacious of me to expect anyone to kill half their day reading all that, but I hold out hope that some of you experienced folks in as bad shape as I am will take pity. I really need ideas on how to handle this, and I need to know if there are any clues that jump out at anyone, any good theories on what might be going on, suggestions tailored to my specific problems, etc. Thanks so very, very much in advance!
P.S.: I plan on buying Jini's book at www.listen2yourgut.com which I know some people on this forum have had positive experiences with. Before I do, can anyone who has read it tell me whether it would be a wise purchase for someone with my speific problem? Are there other books that would be better suited to me, or that I should buy in addition?
