Irritable Bowel Syndrome Message Boards

I've had IBS for most of my life. I'm 54 now, and was diagnosed relatively early. I learned a lot of what Heather did myself, like soluble fibre, the hard way. Oat bran was my best pal for a long long time. Several years ago I learned I had extensive food allergies; corn, wheat, barley, oats, and many other common foods, went on a diet that eliminated them all, and had two years totally free of IBS. I ate plenty of oat bran every morning [ which is ok, it has none of the allergen portion of the oat grain in it], and that, along with the allergy diet changes, seemed to be the answer, I even thought I was cured !. 'Normal' for me, usually meant going three times a day, but wihout cramps, constipation or looseness.But, that changed, for no apparent reason.

Now, I find antibiotics are often the trigger, and this latest attack began with antibiotics. It has lasted many months growing worse and worse over the time. The 'd' has been the most severe I've ever had. Over four months of constant 'd', and I've lost nearly 30 pounds in the last two months. Not that I didn't need to lose it, but this is not the way. I am down to eating only tiny amounts of white rice, cooked oat bran,the odd banana, sometimes a bit of white chicken meat & some unsweetened fruit juice with the acacia fibre. I'm taking close to four tablespoons of Acacia before each meal. Before the acacia, I was using another form of soluble fibre, called PGX, which helped but is extremely expensive. I switched to the acacia a couple of months ago. It seemed to work well at first, but not so much now. I have very little appetite, and often manage to eat only once or twice a day, being half asleep the rest of the time.

I sleep poorly at best, since I have chronic pain from a back injury and subsequent surgeries, fibromyalgia, and sleep apnea. I've needed morphine to control the pain for years, and with what I take, the doctor has trouble understanding how I can possibly have diarrhea ! For the first time in my life since infancy, I found I was actually sleeping through the call of nature, and waking up in a nasty puddle.. which is so demoralizing and depressing I can't begin to describe it; hence the daytime sleepiness. I'm afraid to sleep at night and afraid to eat. What goes in must come out, after all.

I have a therapist.. I follow the IBS diet... I rarely cheat and not for months and months now... and I'm not getting anywhere. I take a drug called Dicetel, [pinaverium bromide] which has pretty much stopped the cramping pain that goes with the 'd', but it no longer controls it, which it did when I first started taking it. I used to be able to stop taking it for long periods between attacks, but have now been on it several months. I use Imodium too, but that isn't working either.

The best I've been lately, is having to go only six or eight times a day, with next to no warning and no way to 'hold it' back, so no way to leave the apartment. At worst, it's been hours at a time sitting on the john, usually from about 2 am to 10 am or so, mostly just coloured water coming out, and often having a mess to clean up in bed to start with. And then maybe the afternoon without having to go, until it starts again around 8 pm. Lately, even that has changed, so now I never know when it'll happen. At night, I just read between sessions on the toilet, while I wait for it all to be over for a given night. Using a sheet with plastic now to deal with 'accidents'.

I have hemorrhoids, and with all the irritation, they often bleed, and they make it that much harder to 'hold' it long enough to get to the toilet,and they get so sore. I use tons of zinc oxide and prescription ointment, and baby powder too, which helps keep things from getting too raw, but still, I'm never really comfortable. I have an appointment for a colonoscopy, and possibly to get the hemorrhoids dealt with in early September, but if there is anything anyone knows of that might help slow or stop the 'd' meantime, I'd sure like to know about it.

I haven't seen my mom this year, unable to drive long enough to get to where she lives, and she's 87.... who knows how much longer I'll have her to visit ? I'm forever missing various important appointments, at no notice, because I'm too tired to drive or can't be far from the toilet, I'm missing my life !!! I've tried everything I've ever heard of to stop the 'd' and nothing works.

I take vitamins and some other supplements, including calcium and magnesium, which do seem to keep me from growing too weak to move. I know some of them may cause problems but I don't think I can afford not to take them. Even so, I've tried cutting out various ones for weeks, but no good result so far. I take them on top of the acacia fibre to be as safe as possible. I even had to start eating salt, which I have not used in over twentyfive years, as I was getting nasty muscle cramps.. salt made them go away. Maybe a half teaspoon of sea salt a day.. because there is none in the little food I eat.

Yes, I have a lot of stress. Pain and disability, debt, plus other things, nothing that can be mended any time soon, if at all, though the therapist helps as best she can. I'm soon going to hit the end of my rope. I'd give anything just to be able to take the sleeping pills again so I'd get at least a few hours sleep in a row, but if I take them, I risk another accident.

Any advice greatly appreciated.

KJG

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IBS-D,lactose intolerant,food allergies - all grains except rye,rice,quinoa,amaranth, sometimes kamut/spelt ok. Also entire potato/tomato family, sunflower family. Mushrooms/molds.

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