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Author Topic: The Dreaded D  (Read 4688 times)

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Offline wjaxon

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The Dreaded D
« on: October 12, 2011, 06:51:01 AM »
Hey all,

I am looking for your take on this.  I have had loose stool for 5 weeks now...I am not sure why.  I know it started when I was sero-converting and was not on treatment.  I have been on treatment now for 3 weeks and it has not gotten better.  Do you think this continuation of loose stool is possibly a side effect of my treatment?  I am on Prezista, Norvir and Truvada. 

Also I read that this can cause drug resistance because enough of the meds are not getting into the blood stream when you have this.  Anyone care to comment on that one too?

Regards
Infected Aug 2011; Dx Sept 2011; Started meds Sept 2011 VL >10 million  CD4 258.  10/2011 VL 2890 33.6% CD4 706.  11/2011  VL 1300  CD4 778

Offline Snowangel

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Re: The Dreaded D
« Reply #1 on: October 12, 2011, 10:22:25 AM »
Wj-
I started the same combo in the last year or so and have had a problem off and on with "the dreaded D" since starting meds back in 97.  Have you tried the OTC Immodium?  That stuff is a life saver for me and gingerale, it calms my stomach. 
When do you take your meds?  Do you watch what you eat? Do you have to go all day or just after you eat?

Snow
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

One thing you can't recycle is wasted time.

Offline buginme2

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Re: The Dreaded D
« Reply #2 on: October 12, 2011, 06:19:53 PM »
HIV sets up shop in your intestines and gut immediately upon infection.  Both meds and HIV itself can cause the symptoms you describe.  They may never resolve even with treatment.  You may be able to get some resolution by taking a daily probiotic and overt the counter anti-d medication when necessary.

Online mecch

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Re: The Dreaded D
« Reply #3 on: October 12, 2011, 06:26:10 PM »
wjaxon

How long were you seropositive and not treated.
If you just got infected recently, and went pretty quickly onto HAART, I would not worry too too much that your gut was destroyed by an HIV infection. But acute HIV is certainly no picnic down there.  Plus starting meds.  And norvir comes with D risks.  I would be discussing a treatment for the D with your doctor now so you can get his under control, and worry about possible permanent problems when and if they stay permanent.
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline wjaxon

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Re: The Dreaded D
« Reply #4 on: November 09, 2011, 07:52:39 AM »
I started meds within a month of seroconverting.  I am on Norvir so maybe that is the problem.  I am going to try the Probiotic thing just have to remember to take them regularly.  More pills lol.  I pretty much stay on a no carb diet during the week so yogurt is out for now.  I get the D intermittently now, not every day like the first two months.  I feel better now and am not dehydrated all the time now that it is normalizing.
Infected Aug 2011; Dx Sept 2011; Started meds Sept 2011 VL >10 million  CD4 258.  10/2011 VL 2890 33.6% CD4 706.  11/2011  VL 1300  CD4 778

Offline Ann

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Re: The Dreaded D
« Reply #5 on: November 09, 2011, 08:39:09 AM »
Miss P used to take something that helped with PI-related diarrhea - I think it was called pancreacarb or similar. Miss P?

By the way, do you use the letter D instead of diarrhea because you can't spell it or because it makes you squeamish? Just wondering. If it's the former, you can always do what I used to do before I finally got the spelling straight in my head - I called it dire-rear. Because that's just what it is - dire. ;D
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline aztecan

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Re: The Dreaded D
« Reply #6 on: November 10, 2011, 02:59:42 AM »
Along with the advice already given, I would add increasing the amount of fiber in your diet.

Fiber is really helpful with diarrhea and helps regulate your bowel movements.

If you are on a high protein, low carb diet during the week, that could be contributing to the problem because diets high in animal fat are notorious for gut issues.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline olliederp

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Re: The Dreaded D
« Reply #7 on: November 10, 2011, 11:24:10 AM »
I just posted about this very issue so I feel your pain. It seems to have stabilized for the moment but my main problem now is all the swelling and damage continuous diarrhea has resulted in. Sucks  >:(

Offline denb45

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Re: The Dreaded D
« Reply #8 on: November 10, 2011, 11:45:18 AM »
I still have diarrhea on & off for the last 16 yrs. when PI's came out, only if I don't get them dam gut-bugs, when I don't have them nasty gut-bugs I'm so prone to getting, I still have to watch what I eat very carefully
but I digress, and I'm not prefect, I'm only human, if it get's too bad, then usually some gut antibiotics for about 10 to 14 days will do the trick for me  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline wjaxon

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Re: The Dreaded D
« Reply #9 on: November 13, 2011, 08:02:20 PM »
Yes Ann...I just use the D because it makes me feel cleaner.  Unlike the real D.  I know the first two months I was seriously dehydrated because even my skin started to flake and my lips were very chapped.  It is not a good thing and I feel crazy sitting on the throne and water coming out like a fountain.  I know it is not good. 

I dont think it is the carb diet because I was doing this for the past year and did not have the D problem then only since my seroconversion.  I guess it could be my intestines needing some attention. I dont know :-(
Infected Aug 2011; Dx Sept 2011; Started meds Sept 2011 VL >10 million  CD4 258.  10/2011 VL 2890 33.6% CD4 706.  11/2011  VL 1300  CD4 778

Offline mikeyb39

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Re: The Dreaded D
« Reply #10 on: November 13, 2011, 08:42:49 PM »
my roommate had the D problem , he is negative, but has always had Gastro issues.  he went to a G.I doctor and they put him on probiotics call Theralac in combination with Bioactive's Tru Fibre and it has been doing wonders for him.

The probiotics and the Tru Fibre powder are not cheap though, he has to order the Tru Fibre online and they ship it, its not in any of the stores anywhere.  The probiotic he gets at the local vitamin shoppe in the refrigerator area.

mike
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline spacebarsux

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Re: The Dreaded D
« Reply #11 on: November 14, 2011, 01:32:35 AM »
I have irritable bowels and occasionally loose stools too.  (poz  5 years, treatment naive so far)

Things that seem to have helped:-

-Probiotic Yogurt or even plain yogurt
-Fibrous laxative
- Cutting down on excessive intake of dairy products (except yogurt)
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline Miss Philicia

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Re: The Dreaded D
« Reply #12 on: November 14, 2011, 04:31:28 AM »
Miss P used to take something that helped with PI-related diarrhea - I think it was called pancreacarb or similar. Miss P?

Yes, I take this -- though they've switched me to a cheaper version called Creon, which is simply a brand name for Pancrelipase (Pancrecarb was just another brand name)

http://www.creon.com/about-creon.htm

this second link shows you all the brand names for Pancrelipase

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000279/

Now, if you read that it sounds like it's for cystic fibrosis issues, but HIV specialists use this off-label for absorption/digestion issues. Things like immodium only treat the symptom, and while useful over the long term one should address the cause. Yes, fiber intake is great and all, but at least in my case when I had wasting issues my GI tract evidently got so off kilter it effected the natural production of enzymes like lipase, amylase and trypsin (pancreatic enzymes for digestion)

Basically I take more pills to control my digestive tract (8 to 12) than I do for HIV (7). If anyone elects to go the Pancrelipase I recommend playing around with the dosing until you get your situation controlled. I still also take immodium along with Pancrelipase, but I was able to decrease that. At one time previous to taking Pancrelipase I was taking 12 2mg capsules of immodium daily -- six twice a day.

edit: Oh, and at least where I live this is on the ADAP formulary
« Last Edit: November 14, 2011, 04:34:10 AM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline Ann

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Re: The Dreaded D
« Reply #13 on: November 14, 2011, 08:59:19 AM »
Thanks for chiming in, Miss P. I meant to send you a PM last week to alert you to this thread but obviously I forgot. Some days I'd forget my head if it wasn't firmly bolted on. ::)

Wjaxon, you might be one of the unlucky people who have to deal with hiv related dire-rear. I do - and I just posted about it here. My doctor and I have discussed my going on hiv meds to fix it, but he told me that in his experience, for those of us who have diarrhea that is definitely caused by hiv, the meds don't usually make a difference.

It sucks.


I feel crazy sitting on the throne and water coming out like a fountain.


I hear you on that score. Before I started using codeine to firm things up, I used to call it the "river-water shits" because it was like a river after a heavy storm - brown, foamy, with bits floating in it. Graphic, yes. Sorry. Just telling it like it is.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Miss Philicia

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Re: The Dreaded D
« Reply #14 on: November 14, 2011, 12:10:26 PM »
The best thing for diarrhea is any opiate analgesic -- after my recent foot surgery I was on oxycodone for two weeks and I didn't have to take any of my normal GI meds, or very little of them. There were periods where I didn't have a bowel movement for several days, which never happens with me.

I have a good friend (pozzie, LTS) who has such bad GI issues that he takes tincture of opium on top of several other immodium-ish type meds. Takes him 2 hours to prep himself to leave the house.
"Iíve slept with enough men to know that Iím not gay"

Offline Jeff G

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Re: The Dreaded D
« Reply #15 on: November 14, 2011, 12:48:50 PM »
The best thing for diarrhea is any opiate analgesic --

This is the only thing that has EVER helped me to overcome chronic dire rear since I became poz . I now take opiates for pain management and it also takes care of the runs . Thankfully I'm able to manage taking opiates without becoming dependent on them so that I can get some pain relief and normal stools .  

In the early days when HIV meds were new and more toxic I stayed dehydrated and sick from my constant trips to the toilet .  
« Last Edit: November 14, 2011, 12:53:00 PM by jg1962 »

Offline wjaxon

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Re: The Dreaded D
« Reply #16 on: November 28, 2011, 06:51:00 AM »
My Doc suggested that I have a lower GI scope done prior to my next visit in February.  I will be scheduling that in the next few weeks and hopefully they will find a root cause.  i am going to look into all the suggestions here and try to incorporate them.  I am three months into my dx and three months with this "dire-rear".  It is not fun at all  >:(
Infected Aug 2011; Dx Sept 2011; Started meds Sept 2011 VL >10 million  CD4 258.  10/2011 VL 2890 33.6% CD4 706.  11/2011  VL 1300  CD4 778

Offline Ann

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Re: The Dreaded D
« Reply #17 on: November 28, 2011, 08:38:23 AM »
Please keep us updated on this and let us know if they find anything of relevance. If they do, I might ask for the procedure myself. It's the one investigative test I haven't had and I am thoroughly sick and tired of having to take codeine or suffer the messy (and painful) consequences.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline wjaxon

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Re: The Dreaded D
« Reply #18 on: November 28, 2011, 10:26:04 PM »
ok Ann will do!
Infected Aug 2011; Dx Sept 2011; Started meds Sept 2011 VL >10 million  CD4 258.  10/2011 VL 2890 33.6% CD4 706.  11/2011  VL 1300  CD4 778

Offline Ann

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Re: The Dreaded D
« Reply #19 on: November 29, 2011, 10:18:53 AM »
ok Ann will do!

Thank you, please do!

This past week I've been having a terrible time with intestinal cramping, to the point where it has woken me up several times, with me shouting in pain and the cats scattering off the bed. (all three of them sleep either on top of me [they think I'm a kitty-couch] or right next to me.)

I'm reluctant to increase my codeine dosage, but I had to take extra the other night when the pain was so bad I was getting waves of nausea immediately after each episode of cramping. After a while, I was even getting the waves of nausea when a cramp was just coming on, probably because I knew how excruciating it was going to be. I was fine in-between the cramps, so it had to be the pain causing the nausea. Yep, the pain was that bad, bad enough to cause nausea.

If it hadn't been in the middle of the night, I might have been tempted to go to the ER. I did seriously consider it around 4am (after two hours of pain), but I would've had to have an ambulance take me and I knew the situation wasn't serious enough to call one out. The next morning I was glad I didn't - it was obviously just the same problem I've been dealing with for at least eleven/twelve years now, but haven't had it this bad since I started the codeine. Things tend to be scarier in the middle of the night when you're home alone. :-\

Seriously, the only thing I've experienced that was worse was labour/childbirth, and this was a close - a very close - second. It was even similar to labour in that the cramps were coming every five to fifteen minutes apart and lasted for 60-90 seconds. (yes, I eventually started timing the damn things!) The cramping is happening high up in my GI tract, so thankfully there have been no "accidents" - yet. ~knocks on wood~ Thank goodness for small mercies, eh? ::)

I'm really, really sick of this. It's starting to affect my quality of life (again!) and I can't tell you how much that pisses me off.  >:(

I don't often vent here about how I'm feeling, so thanks for listening/reading. :-*
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline buginme2

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Re: The Dreaded D
« Reply #20 on: November 29, 2011, 10:58:24 AM »
Ann, have you and your doctor considered starting HAART to see if that releives some of your intenstinal issues?  I take a probiotic I get at the pharmacy, I'm sure you have already tried probiotics but if not they work wonders (make sure they are the refrigerated kind).  I hope you feel better.

Offline Ann

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Re: The Dreaded D
« Reply #21 on: November 29, 2011, 12:20:36 PM »
Ann, have you and your doctor considered starting HAART to see if that releives some of your intenstinal issues?  I take a probiotic I get at the pharmacy, I'm sure you have already tried probiotics but if not they work wonders (make sure they are the refrigerated kind).

Yes, we've discussed it many times over the years. He says that in his experience (and he has a LOT of experience), for patients who have diarrhea that is definitely related to hiv (in other words, not due to a parasite or other infection, or food or med intolerance) the meds rarely make a difference and sometimes make it worse - even the newer meds.

I'm not sure what's causing this to rear its head again, despite my usual dose of codeine (although I fear it may be my tolerance is going up, despite taking measures against that happening). It's not so much diarrhea (not the kind that causes accidents, anyway, thank goodness), it's the gawdawful cramping in my upper GI. I could really do without that.

The other night when it was really bad, I wracked my brains trying to figure out if I'd eaten anything unusual or perhaps something that could have given me food poisoning, but came up blank. It didn't really feel like food poisoning anyway. I'm really careful in the kitchen making sure my food is fresh and everything is clean (Daddy Tim would be proud of my kitchen habits) because of how sensitive I am. I haven't eaten out recently either.

I do use probiotics, but they don't really seem to make a difference. I keep using them because I know they won't do any harm and may actually help some.

Believe me, I've tried everything you could think of (aside from the GI tract investigation mentioned earlier in this thread) before I resorted to codeine. I spent over two years increasingly chained to my toilet before I finally cried "uncle" and started the codeine.

I hope you feel better.

Thanks. Me too! :o
« Last Edit: November 29, 2011, 12:22:27 PM by Ann »
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Ann

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Re: The Dreaded D
« Reply #22 on: November 29, 2011, 12:36:09 PM »
Two things, on reflection...

One, it may be time to have another round of stool sample testing as it's been a few years since that was done, and things can change, particularly when you have the odd kebab at 1am. Yick. (Yick on both counts, the stool testing and the 1am kebabs LOL) I need to see my GP in the next week or two anyway and if things don't improve in the meantime, I'll have to ask for a screening. Yickety yick yick yick.  :-X

Two, I should probably be calling it my "middle" GI tract, rather than my "upper" GI tract. The cramps aren't happening in the colon, they're happening somewhere in my small intestines. (Yes, I can tell the difference. Deal with intestinal cramping for as long as I have and you'll be able to tell the difference too.) Upper GI usually refers more to the esophagus and stomach.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Jeff G

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Re: The Dreaded D
« Reply #23 on: November 29, 2011, 12:38:33 PM »

I'm really, really sick of this. It's starting to affect my quality of life (again!) and I can't tell you how much that pisses me off.  >:(

I don't often vent here about how I'm feeling, so thanks for listening/reading. :-*

I seem to suffer a milder version than you deal with but it all is familiar just the same . Opiates in moderation has been the only thing to keep me semi normal . A few years back I had a horrible bout with nausea and dire rear as you call it that lasted months , I was worried things had taken a turn from bad to worse  . I was scoped from both ends and they never found a thing wrong despite losing 17 lbs in a short period of time .

My ID doc confided in me that he had something similar happen to him once and that his knowledge or his colleagues never did get to the bottom of it . He told me that some time pathogens can be hard to detect and can hang out in the gut causing havoc until they pass . Long story short it did pass eventually and I returned back to my ability to deal with the runs again . It was hell but it passed eventually . I hope you feel better soon .    

Offline Ann

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Re: The Dreaded D
« Reply #24 on: November 29, 2011, 12:49:01 PM »
Thanks Jeff. I really hope it's just some random pathogen that will pass (literally and figuratively) and I'll be back to normal soon. Like I said, if it doesn't abate soon, it may be time for another yicky sample. ew. I've got a gut feeling (no pun lol) that what you mentioned may be the culprit because of the way it started happening out of the blue. I'm thinking (hoping) if it were a resistance issue, it would have occurred more slowly.

The last thing I want to do is to have to up my codeine intake. I'm already taking 150mgs (dihydrocodeine) a day and that's enough. Most people would be stoned out of their boxes on that dosage! I don't feel a thing from it, other than not having the dire-rear (until just recently, that is!).
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Jeff G

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Re: The Dreaded D
« Reply #25 on: November 29, 2011, 12:59:36 PM »
Its been my experience that a fixed dose of an opiate for diarrhea works well independently from tolerance issues you may run into if you were using it for pain , if that makes sense .

Hopefully you wont need to adjust your dose using it for this purpose after other things have been ruled out as the root cause of your problem of late . 


 


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