POZ Community Forums
Main Forums => Living With HIV => Topic started by: LoboDog on February 01, 2013, 08:58:24 pm
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Sorry for yet another one... but I don't know who else to share this with...
When I was diagnosed in 2009, I had a month long stint of diarrhea. I had AIDS at the time. The first year was hell... My numbers came back up, but my first doc (may he rot in hell) put me on Kaletra. My diarrhea just got worse and worse. After I switched docs and started Atripla, and avoided lactose, things got a lot better. But it was no where near normal.
After 4 years of diarrhea, I finally had a normal bm... I never in my life thought I would be happy about having a solid poo, but oh my god... what an experience. I finally have hope that I will be able to do things without plotting out where the nearest bathroom is. There are soooo many things that you just can't do when you don't trust your digestive system.
Well, sorry for boring you with my gross post... but I just needed to share this tiny little victory.
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I feel for you, I took Kaletra for a month and it was hell. I need to look for toilet before I took Kaletra, because I will need to poo within an hour. Cheers for good health to you. Right now I have sinusitis for about 3 weeks now, horrible for me.
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One of the nurses at my ID doc's office made a joke once about using Kaletra as a laxative.
I was lucky, I was only on it for a couple of months.
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Just curious -- didn't you guys use imodium/loperamide when on Kaletra? I think I took 8-10/day but at least it prevented daily diarrhea.
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I'm on Novier <sp> Truvada <sp > , Presiseta <sp >
I CRAP LIKE A NORMAL PERSON !!!!!!!
YUP ! AFTER 7 YEARS ON THE TOILET I CAN NOW GO TO
WALL-MART AND NOT WORRY ABOUT TRAVELING 38 MILES AND HAVING
TO STOP AND CRAP INN A BUCKET :o
If your MEDS make you have diarrhea GET TO THE I.D. DOCTOR AND TELL THEM TO CHANGE YOUR MEDS !
I WAITED 7 YEARS , I WAS AFRAID !!!!! HOW STUPID WAS THAT ?
I FEEL SUPER DUPER NOW :)
NOT ALL ISSUES ARE GOOD , BUT I CAN GO OUT WITH OUT A POOP STOP :o
Weasel .
P.S. Just got back from a 300 mile round trip to my I.D, Doctor ???
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Weasel .
P.S. Just got back from a 300 mile round trip to my I.D, Doctor ???
Wow. 300 miles. Sometimes I get annoyed when I have to take the metro downtown to go to the doctor cuz "it's such a hassle." Doesn't compare to a 300 mile trip.
Lobo.....good to hear your crapping like a normal person.
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After 4 years of diarrhea, I finally had a normal bm... I just needed to share this tiny little victory.
I hear you loud and clear. I also celebrate the days when I have a normal bm. I do a little happy dance outside the bathroom door when I'm finished. ;D
Sounds like you were already suffering from hiv-related dire-rear, which I also have through the years. It sucks that your first doctor put you on Kaletra (yes, may he rot in hell indeed!).
I finally went on meds (after many years of stable numbers) but I knew it was unlikely that it would do anything to alleviate the diarrhea and I was right. My only fear was that the low-dose Norvir (Prezista, Norvir, Truvada) would make it worse and it did for the first week or two, but things have settle back down to how they were before.
I can't take imodium (it makes me super nauseous) but I do take a varying amount of dihydrocodeine (30-150mgs) to keep it under control. I was afraid at first that I'd have to up my codeine dose, but if anything, I've been able to reduce it a bit.
Wow. 300 miles. Sometimes I get annoyed when I have to take the metro downtown to go to the doctor cuz "it's such a hassle." Doesn't compare to a 300 mile trip.
I wonder what you'd think of having to get up at 4am* in order to fly across the Irish Sea to get to your hiv appointments. And not getting home again until around 9pm.
I'm happy enough to do it, because the quality-of-care where the alternative is concerned is absolute crap, even though it would only mean two 20 minute bus rides as opposed to three-plus hours each way of taxis and flights, including time spent hanging around in airports. My health is worth the inconvenience.
*Part of the reason I get up nearly two hours before my taxi arrives (@5:45am) is so I can get the morning's diarrhea out of the way before I'm stuck in a taxi or airplane.
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If your MEDS make you have diarrhea GET TO THE I.D. DOCTOR AND TELL THEM TO CHANGE YOUR MEDS !
With my first doc, I begged, pleaded, etc to change me. He said that it was working and he wouldn't do it. To this day I don't understand his reluctance. I am open to take any of the meds... I just think he was a quack.
Like Weasel says though... tell your doctor to make the switch... if you don't get help that way, switch your doc.
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Just curious -- didn't you guys use imodium/loperamide when on Kaletra? I think I took 8-10/day but at least it prevented daily diarrhea.
I tried everything... imodium makes me gassy and doesn't solve it. The last thing I wanted was to be gassy with explosive diarrhea. Very very very bad combination. You don't know whether to toot, poop, laugh or cry...
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If the choice is annoying flatulence or crapping in my pants in a public space then the decision isn't really difficult for me.
As far as changing to another HIV regimen to solve the problem unfortunately at the time I had no other alternative until something new was FDA approved. That ultimately meant taking Kaletra for something like five years.
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@ LoboDog , you might also want to get a referral to a G.I. Doc, that is what I did, about 2 1/2 yrs ago after being on the john for 15 yrs+ of my life :-\
turned out that NONE of it was a AIDS/MED related at all, I'm on antibiotics that I have to stop every 3 months and the restart, also, I had to change my diet to the low-fodmap diet and a sebo-diet which meant eliminating food that has excess fructose, lactose, fructans, galactans and polyols......
what I have to do now is incorporate them back in to my diet VERY SLOWLY over time, and then stop them all-over-again, it's a challenge, and I do FAIL @ times, but I keep trying tho :D
Not saying you have G.I. problems, and I'm not a Doctor of any kind here.........just wanted to throw that option out to you............good luck to you and I hope you can get to the bottom of all of this ;)
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If the choice is annoying flatulence or crapping in my pants in a public space then the decision isn't really difficult for me.
Honestly, do you read before you bark sometimes?
I tried everything... imodium makes me gassy and doesn't solve it. The last thing I wanted was to be gassy with explosive diarrhea. Very very very bad combination. You don't know whether to toot, poop, laugh or cry...
Immodium doesn't solve his diarrhea; it gives him the sharts.
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Immodium doesn't solve his diarrhea; it gives him the sharts.
It did that to me to until I learned to increase the dose. And at any rate, there are other options to try if imodium doesn't work. Some prefer lomotil and/or tincture of opium. I've just seen too many people on here who pop one imodium per day and aren't satisfied and don't try other solutions.
Honestly, do you read before you bark sometimes?
I don't appreciate your bullying. At all.
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dang... didn't mean for my poo to cause a crappy quarrel... Miss Phelicia may have a point... Downing a bottle of Imodium every day may have helped... I got up to 6 pills a day and then backed off...
Bottom line though, the doc put me on Kaletra when I already had diarrhea in 2009 (plenty of other options). I still think he was an ass.
Advice for anyone else reading this though... Do your own research. Your doc isn't perfect. You are the one that has to live inside your own body.
Most of us in this forum are dealing with the side effects of the meds. I don't think there is one out there that doesn't mess you up in one way or another.
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@ LoboDog , you might also want to get a referral to a G.I. Doc, that is what I did, about 2 1/2 yrs ago after being on the john for 15 yrs+ of my life :-\
turned out that NONE of it was a AIDS/MED related at all, I'm on antibiotics that I have to stop every 3 months and the restart, also, I had to change my diet to the low-fodmap diet and a sebo-diet which meant eliminating food that has excess fructose, lactose, fructans, galactans and polyols......
You are absolutely right... I can't deal with lactose any more. Once I stopped milk, I cut my trips to the bathroom in half... Certain foods still trigger me. Getting old sucks.
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It's definitely dumb to be on Kaletra if you have other options, that I totally agree on.
ps: Ann and I quarrel all of the time so don't feel guilty :) If she didn't live overseas and didn't insist on still using a rotary phone I would send her nasty text messages hourly.
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Kaletra is horrible. Started on the dreadful mess years ago, and so thankful to have gotten off of it. Shitted Kaletra Orange liquid and it turned my blood to butter as well.
Oh...but you haven't lived til you've had to pull over on the side of Interstate 85 just north of Spagetti Junction - during rush hour - and hoist yourself up to shit into a paper bag in desperation.
You want a lesson in humility? That's one.
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Kaletra is horrible. Started on the dreadful mess years ago, and so thankful to have gotten off of it. Shitted Kaletra Orange liquid and it turned my blood to butter as well.
Oh...but you haven't lived til you've had to pull over on the side of Interstate 85 just north of Spagetti Junction - during rush hour - and hoist yourself up to shit into a paper bag in desperation.
You want a lesson in humility? That's one.
Shhh. we mustn't speak of the Dark Times.
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Oh...but you haven't lived til you've had to pull over on the side of Interstate 85 just north of Spagetti Junction - during rush hour - and hoist yourself up to shit into a paper bag in desperation.
I once had to publicly defecate on a NYC subway platform during evening rush hour. Notably Michael Jackson filmed the video for "Bad" in the same station. Actually this was from saquinavir which I found twice as horrible as Kaletra.
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Shhh. we mustn't speak of the Dark Times.
Oh, I could have gotten much more graphic with that story. I spared you all. I didn't even get into the aftermath.
It helps, though, to have someone local on here who can appreciate exactly where that location is and what it would be like.
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Oh, I could have gotten much more graphic with that story. I spared you all. I didn't even get into the aftermath.
It helps, though, to have someone local on here who can appreciate exactly where that location is and what it would be like.
Oh yes. I know the road, the time of day, and the traffic.
I wish Joe (Killfolie) would come in and tell the broccoli rubber bands-in the grocery store- story. That tale ought to be a sticky on these forums; required reading.
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Oh...but you haven't lived til you've had to pull over on the side of Interstate 85 just north of Spagetti Junction - during rush hour - and hoist yourself up to shit into a paper bag in desperation.
You want a lesson in humility? That's one.
Crapped my pants in a restaurant while I had a broken hip and was trying to get to the bathroom using a walker. My right wing republican brother was meeting my partner of 11 years for the first time at that meal. I think that qualifies as the low point in my life.
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I wish Joe (Killfolie) would come in and tell the broccoli rubber bands-in the grocery store- story. That tale ought to be a sticky on these forums; required reading.
JK
With the utmost pleasure, I grant your wish:
If it was not for laughter, I do not know if I would have survived the last 23 years with HIV. But sometimes, things happen and you can not do anything but laugh at the folly of it all. In that vein I wish to share my second most embarrassing moment ever. I just know that far too many of you will relate to this adventure.
The year was 1995 and I had stopped at the grocery store, on my way home from work, to pick up a few things. I had just started two PIs (Protease Inhibitors) and I was far from adjusted to the new meds and the havoc they caused with my body. So I am shopping and suddenly I get THAT urge. You know the one. The one that says that you have exactly two minutes to get to a bathroom, because that is when you are going to have projectile diarrhea.
Now this was a store I had never been in before, so I had no idea where the bathroom might be, or if they even had one for the public. I start searching frantically, but each step I take only intensified the urge to explode. I realize that detonation is imminent. I am in the produce aisle by now and I look around frantically for something that may help... and that is when I saw my salvation: Asparagus. Well not the asparagus itself but those huge rubber bands that they bunch them with. I quickly grabbed two and closed each pant leg, right above the shoe.
No sooner had I done this and the torrent was unleashed. It was disgusting and I just made a mad dash for the exit and safety of my car. I like to think that I handled it well, until I realized that I was wearing ivory colored pants. I can only imagine what I must have looked like leaving that store, but in a situation like that, what can you do? And that is how I learned to carry a towel, diaper wipes and a full set of clothes in my car at all times.
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ps: Ann and I quarrel all of the time so don't feel guilty :) If she didn't live overseas and didn't insist on still using a rotary phone I would send her nasty text messages hourly.
Heh. I'm glad to hear you fell for my lie about only having a rotary phone - that way I don't have to delete text messages from you on an hourly basis.
I can't remember the last time I had - or even used - a rotary phone. Probably sometime in the 80s. I don't own a ShartPhone though and probably won't until they come waaay down in price. Rich I ain't. For now my basic Samsung does just fine.
And yes, Lobo, we were only monstering teasing each other.
JK
With the utmost pleasure, I grant your wish:
Joe, I've always admired your inventiveness in that story. They do say, after all, that necessity is the mother of invention and your story certainly proves that point.
I'm lucky in that before I got my hiv-related dire-rear under control, my situation was such that I rarely had to leave the house. My daughter was still living with me and she was old enough to go grocery shopping and take care of other things outside the house. I'd literally be up shit creek without a paddle these days, so thank goodness for codeine.
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If there ever was a Winning With Poo Horatio Alger Award (adult category) for inventiveness and overcoming crappy adversity, y'all should have the sparkling awards encased in your homes.
Thanks for the medical information and personal stories.
;)
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I wish my friend Ron was here , he always loved a good poo story . He liked them a little too much for my comfort come to think of it .
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Totally agree that Joe's story is worthy of "all time classic" status.
Even better, I finally understand that there is a reason for that large rubber band around grocery store asparagus.
Thanks!
Gary