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At my wit's end...help??

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Irritable Bowel Syndrome
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Posted 7/17/2008 5:50 PM (GMT 0)
Quick intro:

I'm 27, female, living in the North-eastern portion of the US.  I first started getting IBS-type symptoms when I was 21, but I've had tummy problems since I was a baby.  Both my Mom and brother, whom I live with (by choice, thankyouverymuch), also have IBS-type symptoms, but mine are by far the worst of the group.

Ok... so I have IBS - or at least, that was the doctors' best guess.  I first started suffering from intense bouts of nausea, dizziness, weakness, and messed up bowel movements (sometimes diarhea, sometimes constipation) August of 2002.  That first stomach ache lasted for ten months solid, causing me to drop about 40lbs, and essentially lose all faith in the medical world.  I had CAT scans, MRIs, xrays, ultrasounds, drank my weight in barium milkshakes, had some kind of gallbladder-contracting-test that involved radioactive fluid being injected into my veins, an empty scan, and an upper GI.  The ONLY test that came back as remotely helpful was the empty scan, which concluded that I take too long to digest.  Great...I knew that already!!  But none of the doctors (and I saw TONS) could figure out what the cause was, or how to make it go away.  I even went vegan and gluten-free for almost two solid years, and it STILL didn't go away completely.  I tried various medications, but nothing helped.

They also checked me for Chrone's and Celiac's but both came back negative.

Pretty much at the end of the 10 months they were saying they wanted to start cutting out my extra organs, starting with my gallbladder.  I asked if my gallbladder was the cause and they said "no, you don't seem to have gallstones or anything, but it MIGHT be..."  I told them that until they KNEW what the cause was, they weren't cutting ANYTHING on me, or out of me.  That was pretty much the last time I sought medical help for my tummy woes.

As of a year ago, I had stopped getting the debilitating, double-you-over-and-make-you-wish-you-were-dead stomach aches, but I still had bouts of constipation and diarhea.  But for the MOST part, I was living a relatively normal life.  I was happy, I felt GOOD for the first time in years, and I was able to go out and DO things.

Then my parents divorced and the house we were living in had to be sold and my life was turned head over heels.  But I got through all that ok.  I had a mild attack here and there, but for the most part, I was ok.

Until I went to the hospital with a mystery wish-you-would-die stomach ache.  It wasn't IBS, it was something different, and a month later (yay for advanced American medical know-how...) I was finally diagnosed with a severe bladder infection that was starting to travel to my kidneys.  Since then it's been just as bad as that first, ten-month-long stomach ache...maybe even worse at times.  That was in February.

I try to restrict my diet (I'm vegetarian and almost completely dairy-free), but it doesn't seem to matter all that much.  I don't drink coffee or alcohol, and I don't smoke cigarettes.  I still get the pain - whether I eat or not.  It just comes and goes in these intense waves.  My stomach will bloat out so much that my pants don't fit and I have to change my clothes (oodles of fun when I'm stuck at work, lemme tell you).  When the pain is REALLY bad, my teeth start chattering from the intensity and my skin goes all cold and clammy.  I really, genuinely feel like I'm going to die when it gets like this!!

I know stress is a major trigger point for me (and IBS in general) and I'm trying SO hard to reduce it in my life as much as I can...but there's only so much you can do.  Especially with a new job, having just moved, and with a Mom who's an emotional wreck from a nasty, NASTY divorce.  I just don't know what to do... I walk around all day with at LEAST low-grade nausea.  I wake up every day feeling like I'm going to puke, and more often than not these days I go to bed that way too.  I am coming to the end of my rope and I DO NOT KNOW WHAT TO DO ANYMORE!!!  I can't restrict my diet any more than I have...I'm exhausted from living in constant pain, and I have a CONSTANT lump in the back of my throat from trying not to cry.  This is RUINING my life!!  My fiancee has been patient as a saint with me, but I can tell my constant "my tummy hurts" is getting on his nerves.  It's killed my sex drive, to say the least, and I don't want to cuddle or be close either because I'm bloated and my tummy gets so painful that touching me ANYWHERE is too much for me sometimes.

I don't know if anyone has any helpful advice or not...mostly I'm just looking for a place where I can talk to people and not be told it's all in my head and that I'm just looking for attention.  I'm so SICK of being told that I'm not REALLY in pain and that if I really wanted to, I could just "get over it".  It so does not work that way...

Somebody....anybody....please just tell me that I'm not losing my mind and that this isn't all in my head and I'm not alone???

Post Edited By Moderator (7Lil) : 7/19/2008 2:11:08 AM (GMT-6)

Posted 7/17/2008 6:25 PM (GMT 0)

You are definitely not losing your mind, and I can appreciate your moments of insanity. I am sorry you are feeling so miserable. As I was reading your story, I was trying to see a pattern with your manifestation of symptoms. It appears you had a relapse after your bladder infection diagnosis. I'm assuming you were on antibiotics then? You indicate your condition got worse after that. I'm thinking you may have a yeast/fungal problem that may be contributing to your symptoms. Antibiotics will destroy the good bacteria in your body (gut) which allows yeast to proliferate, if left unchecked. Fungus can certainly be a cause of gut problems, among other health issues. I'm not talking about a typical yeast infection here. My suggestion, (and I'm not a doctor!) is to try an antifungal diet approach/experiment to see if you get relief. You should know within a short while if you are onto something. Incidentally for me, I get belly problems if I eat any foods with yeast (there are many!), or eat foods with sugar listed as the first 2-3 ingredients on the label.

If you have taken antibiotics in the past (even as a child), and not any probiotics to replace the good bacteria, I'm thinking fungus could be one of your problems. Maybe try taking some natural antifungals like caprylic acid, olive leaf extract or apple cider vinegar, as well as getting on some good probiotics. You would have to go on a specific lo-carb diet to begin, as well, to starve the fungus. I'm not saying at all that this will cure you, but I'm thinking you would see some improvement within a few weeks, "IF" you have a fungal condition. I guess you have to decide if it is worth a try. Good luck!

Kim

Posted 7/17/2008 6:33 PM (GMT 0)
Kim,

I WAS on antibiotics - really, really horrible and nasty ones at that!  I had thought that might have contributed to it as well, but I didn't know what to do about it.  I can somewhat stomach yogurt (the only exception to my no-dairy rule) so I was trying to eat that while I was on the drugs, but I stopped once they were over.

Most of my protein comes from vegetarian meat alternatives that are made with mushroom protein...do you think that could be contributing as well?  I don't really know much about fungal stuff, beyond the normal girly-issues that arrise from taking antibiotics.  Does Monostate make a For Your Belly version?  LOL 

I'm going to look into this some more.  I think you might be onto something, though.  Thanks so much!!  And thanks for the sanity check, too.

Oh yeah, and my name is Mae.  I just realized I forgot to sign my name...hehe...oops.

 

Posted 7/17/2008 8:31 PM (GMT 0)
Mae,

Here are some links you may wish to check out for more info on fungus. (Mushrooms are a type of fungi, not sure if that makes a difference for you, or not)

http://web.tampabay.rr.com/lymecfs/leakygut.htm

http://www.cfs-recovery.org/docdarren2.html#intro

*** www.knowthecause.com (look under FAQ section) This is the site that I recommend if you wish to follow a specific experimental diet/program. This is the one that gave me my life back. I never knew my symptoms had a fungal etiology until I experimented with the anti-fungal approach, and got well again, even when my doctors told me changing my diet wouldn't help!)

Cheers!
Kim
Posted 8/30/2008 4:52 AM (GMT 0)
You are not alone, I have been told by many people- even my closest friends and family that i need to stop faking it. IM NOT! I have resorted to self diagnosing, and lifestyle changes. People can be really mean, even people that love you. we (ibs sufferers) all have symptoms and ailments that others can not even begin to understand. and just because you can not see our disease doesn't mean that we are making it up. my teachers got so sick of me saying "my stomach hurts" that they litterally told me to stop coming to school. I missed close to 40% of my junior and senior years because of digestive problems not being diagnosed correctly. Stress for me plays a role with how long a flare up lasts, but does not initiate a flare up. I am also hypoglycemic, so the not eating option does not work at all for me- although i did try it for a while. I hope i am not coming off as negative, im not trying to say there is no hope for us, im merely trying to say that the over paid doctors we rely on sometimes have no clue. and what i have found it trusting my first instinct and looking for hope within myself.

Post Edited By Moderator (7Lil) : 8/30/2008 11:48:23 AM (GMT-6)

Posted 9/2/2008 4:54 PM (GMT 0)
I second the anti-fungal diet – I had colitis and went on a major anti-fungal, food sensitivity diet and basically cured myself of colitis.   I’m still dealing with some side-effects of that whole long ordeal, and have to watch how I handle my stress, but mostly feel pretty good, as far as gut pain goes.   Get a good anti-fungal, teeter totter that with a good probiotic (doesn’t take at the same time), and I suspect you’ll see some good results.     Basics: no white flour, no white sugar (or any sugar for a while), no pop, no artificial sweeteners either, no potatoes for a while, no dairy – there’s a long list – I suspect the links given above will discuss it at length, if not, let me know – I got loads of them.   If I had a sweet attack – I ate a sweet potato.   Beans (pinto, kidney, etc) are your friend!   I seriously ate navy or pinto beans with some onion/garlic/carrot and broth 5 times a day for a while.   The soluble fiber helps extract the bile from our system that gets recycled (but shouldn’t) through our system.   I know of a book if you want to read it, email me and I’ll tell you about this practitioner here.   I used to have a lower right pain almost constant, upper right pain intermittent, and a bad lower left in bad painful blows.   Beans have helped.   You don’t get the proverbial gas from the beans once you clean yourself out.   If you have gas, its most likely fungal (yeast), if yeast is your issue.     My advice is to find a good homeopath practitioner who can deal with diet.   Someone who can set it up for you personally.     Good luck -K
Posted 9/2/2008 5:04 PM (GMT 0)
Thanks Raea.  Unfortunately, I don't seem to be able to handle beans at the moment.  Not in any sort of quantity anyway.  My problem seems to be linked directly to gastroparesis and incomplete emptying.  I eat and the food doesn't leave.  Maybe I have issues with letting go? lol ;)

But seriously...

I'm reluctant to EVER work with a wholistic/homeopathic doctor again.  The last one I saw was a complete a total QUACK!!  Everything he had me do made me feel worse in the end, and he kept telling me to stick to it and I'd feel better.  Well I never felt better taking or doing any of the junk he made me waste my money on, and moreover he's made me completely warry of the approach.  He also put my Mom through the same sort of crap as me and filled her head with a lot total nonsense.  I think he made up a lot of the stuff he tried to pass off as "tried and true" alternative medicine...  And that's my biggest problem with alternative doctors and approaches: there's really no way to verify that they're NOT a quack or whack-job.

I am doing probiotics now though, and I've been working on reducing the amount of junk in my diet (for a while there I was eating anything and everything I wanted because I wanted so little).  Hopefully between that and the new doctor, things will work out ok.

Posted 9/2/2008 5:43 PM (GMT 0)
Yeah - never fun when you run into those quacks - seen a few myself. Little meals if you're having trouble emptying - and don't drink water while eating - some people have trouble with stomach acid. drink a lot of water between, but not for a 1/2 hour prior to a meal and 1/2 after.

I believe diet is half the battle - and then hopefully we find someone competent to help with the rest.

xoxo - K
Posted 9/2/2008 6:32 PM (GMT 0)
I agree, diet is half the battle. The phrase "you are what you eat" is so true. I have read about not drinking beverages while eating. If you need to drink anything, make sure it's water and only a few sips. Consume your beverages in between meals. The small and frequent meal idea is probably the best idea I've tried. If I have 3 very large meals a day, I am in the bathroom after each one, for 1 to 2 hours. I will have repeated bm's, every 10 or 15 minutes apart. I joke they're like labor pains. But if I have a very small meal or really I should say snack, my gut isn't overwhelmed with a large amount of food coming down and moving thru. If I have oh 4 grapes, 2 or 3 small pieces of cheese with 3 club crackers, I do great. But if I were to have a full sandwich, soup and fruit and/or chips for lunch, that would be too much at one time.

Another trick I try if dining out, I intentionally cut half of my entree, before beginning to eat it. If it's a sandwich or burger, I cut it in half. If grilled chicken, I eat one breast, but not two (they almost always serve two, which technically is considered one full chicken breast). This way when I'm done with my half, the other half is untouched and goes neatly into a to-go box. I call this the half diet. LOL!
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