POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: AtomicA on November 30, 2006, 01:52:25 am
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Alright, normally I would reserve this question for my doc but he books 3 months in advance and I don't want to wait that long.
Since I came down with seroconversion sickness my bowel function has never really gone back to normal. namely diarreah at least once a day. Since I started HAART, sustiva and kivexa, however the problem has gotten significantly worse and appears to be getting worse every day. Now it's at least 4-5 times a day and has been this way for a couple of months. I usually only have one normal bowel movement in the morning after I wake up every day. I plan my diet very VERY carefully, I make sure to get at least 120% of my daily recomended intake of fibre every day as I take a mild protein supplement (25g per serving) after the gym every day. My diet is almost completely based on whole, unprocessed, unrefined foods with tons of raw or lightly cooked veggies and I'm not allergic to anything. I have been drinking tons of water to try and stay hydrated and I also take the k-pax mega-vitamin supplements to support my immune system. I don't know if this whole diarreah thing is just a side effect that I'm going to have to learn to live with, if it will get better or if it is an indication of something more serious. What's scaring me is that I'm noticing things coming out of me that I can distinctly recognize only 4 or 5 hours after I've eaten it which probably means I'm missing out on all it's nutritiony goodness. Is there anything else I can do? I've also noticed that I have to pee WAY more often than I use to but I think that's cuz I've started drinking more water. The weird thing is that I don't feel physically ill at all!
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oh, and while I'm asking about side effects... the only other thing I have never asked anyone about is my vision. I know that it's been getting steadily worse since I started school (thank you glaring white pages with tiny little text) but recently, and more specifically since i started the drugs it's been getting markedly worse. It's inconsistently unreliable as well, some days I can barely read the board without squinting something fierce and some days I don't notice anything. The right eye seems to be worse than the left as well, it's so blurry some days that I feel like I have something in it that I need to rub out, others it's fine. It's gotten to the point where I will come home and have to actively relax my face because it's all tight from the squinting. I don't get any floaters or 'holes' in my vision like I was warned to watch out for but before HIV I definitely had 20/20 vision. Can screwy eyesight be a side effect?
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woops! I was just asked to update this... I started taking my meds at the beginning of september and nope, the "dreaded D" (Alex, that's hot... I'm gonna use that phrase again) come with no cramping whatsoever. Though I do get the random, short duration stomache/abdomen pain now and again. Nothing that I wouldn't blame on gas though.
yes, now you all know more about me than you ever wanted to. HAH! don't you wish you could un-read something?
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You need to get this checked out, it may not be the drugs, plus HIV affects the gut, and if you acquired this recently, your gut may still be upset.
But also it may....
Try this: eat less insoluble fibre (veg etc) and more soluble fibre (oats, bran tablets etc). This page has more tips: Diarrhoea - i-Base (http://www.i-base.info/guides/side/diarrhoea.html).
A number of medicines can help, for a start you can bung loperamide down you til the cows come home, maybe a short intervention like this, or sommat stronger, is needed cos your gut can go into a kinda anxiety where it just gets stuck trying to expel some kind of poison (er, like new meds) and don't go back to normal.
Vision: hmmm, if this kicked in time wise with starting meds it is probably meds related. This needs checking out pronto. It can be a side effect of Sustiva, and also the abacavir in Kivexa.
The K-Pax, when did you start on this? A friend of mine tried it n after 5 weeks he got the squits bad like.
- matt
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the k-pax was within two days of starting the meds. Did your friend quit K-pax or did it get better?
and yah, I'll definitely be talking to my doctor the next time I can get in to see him... which will be after 2006 is just a distant memory I think.
Thanks matt, I agree with blonde beauty... you do know everything.
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Friend quit K-Pax, squits got better. This is just an observation based on a sample of 1, son not very representative. ;D - matt
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I have had the exact issue with my eyesight. It started months before I started meds (1 week ago). It is so inconsistent that I can't imagine corrective lenses helping. I am pushing 40 and passed it off as an age thing. Is there a discussion about this somewhere?
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Ugh... I've been taking loperamide for about a decade now. It works somewhat though I still get the runs from time to time. Definitely always have some on hand. I'd call your doctor and get a prescription now instead of waiting the 3 months for an appointment. It's a basic drug that you can get over the counter so they won't balk at doing a prescription for it with no appointment. In fact, I think they should hand the stuff out with all protease inhibitors.
Oh, I also started taking this in the last couple of years and it's paid for with ADAP for what it's worth:
http://www.digestivecare.com/pancrecarb3.htm
and
http://www.aidsmeds.com/lessons/NutritionFat.htm
For those in whom fat malabsorption causes or contributes to diarrhea, the use of pancreatic enzyme tablets which contain lipase, the fat-digesting enzyme, taken with all fat-containing meals or snacks may help. Recent research has shown a significant increase in stool consistency in those given Digestive Care Inc.'s Pancrecarb®, a pancreatic enzyme formula that is enteric-coated (to ensure that it reaches the small intestine where the enzymes are needed) and contains bicarbonate (to ensure an optimal pH level in order to improve the usefulness of the enzymes). This product, available by prescription, has an FDA indication for fat malabsorption. There are also many anecdotal reports that indicate that this product may greatly reduce the gas and bloating that fat malabsorption can cause.
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I'm with philly267, loperimide (Immodium) is King! I generally would have to take 2 tabs at once every two days. When it came time for the next 2 pills, you'll know. Believe me....you'll know. The problem is much less frequent now.
Something I don't think was addressed above: You said you could "recognize" some of the stuff in the bowl as from 4-5 hours before. I have had this same dealy. I checked with an HIV nutritionist, and she told me that the majority of nutrient absorption happens within the first hour after the food is consumed, and that I did not necessarily have to be heavily concerned about it unless it was passing through in 2-3 hours or less. She said she had encountered some patients who were passing food through in under 30 minutes...yikes. That's what she told me. If anyone knows of evidence to the contrary, please post.
And I am with you on the pee thing. I can't hardly get a good night's rest lately. Have to get up over and over again...no matter how much liquid I do or don't consume.
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Hi Atomic,
I've also had this problem since seroconversion. It wasn't too bad at first, but gradually got worse over the years.
One thing you need to do is rule out bacterial or parasitic causes. It ain't pretty, but for this you need to provide what they call a stool sample, and they don't mean bar stool. It is possible to carry one of these infections while hiv negative and have your body keep it under control, but once you end up with hiv, well, you know the rest. That's what the doc told me when I balked at providing a sample.
In my case, no obvious cause was found. I've tried dietary changes - all sorts - no luck. I've tried loperamide, but it makes me feel car-sick; nauseous and a bit dizzy. The only thing I have found that works for me with no adverse side-effects is low dose codeine. I recently had to do without it (doctor error) and, well, let's just say I had to wash an awful lot of knickers. I have to be careful with this remedy and I take regular mini-breaks (when it doesn't matter if I need to be within a short sprint of a toilet) to make sure my tolerance level doesn't rise. I've been on the same low-level dose for a few years now. It also helps take the edge off the joint pain I experience, so I'm killing two birds as it were. (Non-steroidal style drugs, the usual remedy for joint pain, rip my stomach up something chronic. Codeine give some people nausea, but I have no problem with it at the low dose I use.)
If you like Alex's nick name for diarrhea (Dreaded-D) you might like mine too - "dire-rear". :D
Good luck sorting this out Atomic, I know what a horrible thing it is to have to deal with. Oh, and just so you know, I'm not on any hiv meds yet.
Ann
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Sorry I have to put my two cents in , but this problem plagued me so bad that none of the Imodium type products OTC or prescription helped in any significant way....It started just after I started taking Crixivan... went on for months..finally Dr said to try old fashion remedy..Tincture of Opium... This stuff really works... .5ml in the glass of water with your meds does the trick...depending on when / how often you do meds ( I did 3x/day)
so after a few drops of this stuff you will think why didn't anyone tell me about this before????....because as with so many things it can be abused.....and very few drug stores carry it.....they will order it but don't stock it.... have used this stuff for nearly three years.. gradually worked down to a few drops once a day and many weeks don"t need it at all if I stay away from fatty foods.....
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Yes, I have a friend who swears by Tincture of Opium. He already had digestive problems that were hereditary so one can imagine what HIV medications have done to him. I've not gone down that road yet to move past loperamide as I think I'm allergic to morphine based stuff. Codeine makes me vomit for days.
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I've never heard of tincture of opium, is that a fancy name or is it actually made from the opium poppy? I have several growing in my backyard... if harvesting them didn't ruin the gorgeous flowers I'd probably have figured out exactly how to do it by now.
Does the tincture make you loopy?
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The tincture of opium will make you loopy if you take enough of it! So will codeine - any opiate will. When using any opiate for dire-rear control, you have to get the dose just right so you a) don't get loopy and b) don't get constipated. Opiates slow down the peristalsis in your intestines and gives your body a chance to absorb what you've eaten, slow it down too much and it all comes to a grinding halt. It doesn't take much to do the trick.
Ann