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Author Topic: Settling in with HIV  (Read 2429 times)

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Offline Life

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  • Posts: 2,388
  • Member 2005
Settling in with HIV
« on: August 03, 2006, 08:28:28 PM »
Well I stayed up for 12 midnight to come, and here I was at Anniversary time.  I let Will continue to sleep.  I played with our dog Johnny and took him for a long walk next to the river.  Moon was out, stars at our altitude are just as if you could reach out and touch them..  For just awhile, my mind was not cluttered with hiv and this past year.  It was actually in the moment.   I went to bed very soundly with William by my side.  Soooooo... I awoke about 1 hour later to having "messed" up the bed.  Well this has happened a few times.  We even have a routine, that I move Will out to the sofa and I put new sheets on and wash the old ones.   But you know what,  we are use to this happening now and again.. I guess I am getting use to my new set of circumstances..

Love

Offline Oceanbeach

  • Member
  • Posts: 3,565
Re: Settling in with HIV
« Reply #1 on: August 03, 2006, 08:48:27 PM »
Dear Eric,

When I got out of the hospital 10 years ago, I had the same problem.  I would go to sleep and wake up in feces.  I had no control.  I sort of started a control mechanism and called it the "three minute warning".  This gives me 3 minutes to get to a bathroom.  Having been humiliated in public so many times, I started never leaving the house, when I did leave the house, I was always in walking distance and I took an alley because the "unscheduled bowel movements" moved on to waking hours.

I use the term "eating disorder" for a reason to not go out to lunch or dinner with friends.  Ten years of public humiliation has been more than I can cope with.  After all this time, I never leave the house before noon and rarely travel more than 20 miles from home.  These few and rare trips are planned, my vehicle must be in good working condition and I must have at least a half tank of fuel or I do not go out.  When I do go out, the first thing I do is locate the rest rooms.  I don't know how to settle in with HIV.  Have the best day
Michael

www.Commission-on-AIDS.org

Offline Sdgirl

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  • Posts: 247
Re: Settling in with HIV
« Reply #2 on: August 04, 2006, 12:07:14 AM »
Please, please, please forgive my ignorance.  As a newly diagnosed person who has yet to go on meds, is this a side affect of the medications?  This is the first time I have heard of this happening and I am trying to prepare myself as best I can when the time comes for me to start meds.

I am so sorry that you have to live your life based on where the nearest bathroom is, that has to be an awful experience.  I wish that I could give you some sage wisdom, but I have none.  I do however feel your pain and will be here to listen.

Lisa
"Our deepest fear is not that we are inadequate.  Our deepest fear is that we are powerful beyond measure.  It is our light, not our darkness that most frightens us.  We ask ourselves.."Who am I to be brilliant, gorgeous, talented, fabulous?  Actually, who are you not to be?"

Offline Life

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  • Member 2005
Re: Settling in with HIV
« Reply #3 on: August 04, 2006, 12:14:22 AM »
Lisa, for me, its the meds....  I sometimes dont eat the best or eat to late at night.  Its managable for me, but for others maybe not so much...  I wouldnt worry to much about it this earily in the game Lisa,  it just depends on what meds you go on and how your body reacts to them.  For me, I just have to stay out of the employee dinning room...  As anyone with common sense HIV +ve -ve should...   ;)

Love

Offline Oceanbeach

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  • Posts: 3,565
Re: Settling in with HIV
« Reply #4 on: August 04, 2006, 04:40:59 AM »
It is the meds for me too.  Some combos have fewer side effects and they all affect us differently.  I have been on so many different regimens over the years, I don't even really remember which was the worst.  Every medication has a list of possible side effects and my system reacts very strongly to what ever is listed.  Any other person may not have those side effects or they may go away in a few weeks.  In my personal case, I have had to control my life around the meds and the side effects.  The alternative is worse so I take the pills.  Have the best day
Michael

www.Commission-on-AIDS.org

Offline Jeffreyj

  • Member
  • Posts: 1,403
Re: Settling in with HIV
« Reply #5 on: August 04, 2006, 04:52:53 AM »
When I started Viracept I had problems. My Dr asked id I had tried Metamucil, of all things. I gave it a shot, and much to my surprise it helped! Just a thought....
All the Best
Jeff
Positive since 1985

Offline BB

  • Member
  • Posts: 168
Re: Settling in with HIV
« Reply #6 on: August 04, 2006, 09:40:03 PM »
I take epzicom, lexiva and norvir everyday and started 07/2004. From the day I started the meds I had the worst diarrhea/stomach cramps and continued this way for 1+ 1/2 years. I became so tired of living within striking distance of a bathroom that I finally changed my diet to low or non fat food and drank lots of water. This changed things some, but not very much. My doctor was pleased with the change and declared the drugs were not the cause of the remaining diarrhea. He said the hiv meds do not cause long term side effects and my problems were being caused by something else. We had a somewhat heated disagreement, but I went along with what he said. Several months later I entered a new study in which my dose of norvir was cut in half. Almost immediately the remaining diarrhea and stomach cramps went away. All I can hope for is that things will remain this way. I also have an appointment with who I hope will be my new hiv specialist on the 17th of this month.

The issue here is that each person is different and respond in their own unique way to hiv and their meds. Keep an open mind, but do look at each drug and their side effects and make sure you talk them over with your doctor before you begin taking the drugs. Also talk about how long you will deal with the side effects and what you think you'll be able to live with.

BB

Damn the Torpedoes! Full speed ahead! Adm. D. Farragut.

Started Atripla 8/18/06 and if I eat the right food when I take my meds, I get to go on a-trip-la.

Offline Gilles

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  • Posts: 63
Re: Settling in with HIV
« Reply #7 on: August 05, 2006, 03:50:35 PM »
Sorry for being naive but does this happen to everyone who takes medication? ???

Offline wellington

  • Member
  • Posts: 508
  • Don't sweat the little things.
Re: Settling in with HIV
« Reply #8 on: August 05, 2006, 04:13:14 PM »
I had a few close calls and can strongly identify, Sonomabeach, with that 3-minute warning from the lower bowels, though I've been lucky that meds have not caused much continued GI distress. I'm presently taking Sustiva, 3TC, Zerit, and Dapsone. My + diagnosis was in mid-February of this year so my prescription history is pretty light compared to others here. I also try to eat whenever I have capacity - not just at societally dictated intervals. I'm lucky to be one of those with a quick metabolism so I'm managing my weight well. If anything, I feel the added food distracts my GI away from bad behaviour :)

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Settling in with HIV
« Reply #9 on: August 05, 2006, 04:15:56 PM »
Well, I've had it happen though only maybe once or twice while asleep.  I *HAVE* had to defecate in public.  Once was on a subway platform in NYC -- talk about humiliating.  Traumatized me for YEARS.  This was when PI's first came out and though explosive diarrhea was a known side effect I don't think I complained enough about it (actually I think I did complain about it a lot to my doctor).  Anyway, it wasn't until last year when my current new doctor and I discussed all of this that she put me on Pancrecarb which is some sort of enzyme pill.  It's done wonders I must say.

My only advice is if you are having these problems do NOT suffer through them but be adamant about having it treated.  Some diarrhea is to be expected, and let's face it even healthy people get diarrhea from time to time.  It's the explosive characterization that makes this different.  If you're not 10 ft. from a toilet you can be in trouble.  This has caused me to become more and more of a stay at home person and even now that my situation has improved in the last year, the previous 5 years of this problem have caused me to be slow in changing my routine.
"I’ve slept with enough men to know that I’m not gay"

Offline david25luvit

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  • Posts: 1,409
  • Member since March 2005
Re: Settling in with HIV
« Reply #10 on: August 06, 2006, 10:59:08 AM »
Hey Eric...

                  I went thru this with David while he was on salvage therapy.  There were times when I'd have to change the sheets three times a night.  He'd be so upset about it but I didn't think twice about it.  Don't let it bother you sweetie....Sounds like you and your baby got it worked out anyway.  At some point I believe it happens to all of us....whether its in bed or (God forbid) running around in public.  Shit Happens ::)

{{{{ HUG }}}} :-* :P :-*
In Memory of
Raymond David McRae III
Nov. 25, 1972- Oct. 15, 2004
I miss him terribly..........

Offline Life

  • Member
  • Posts: 2,388
  • Member 2005
Re: Settling in with HIV
« Reply #11 on: August 06, 2006, 11:41:22 AM »
David, yeah,  I am just getting a glimps of thngs that should be happening when I am 80....  We are ok about it...  I usually do it to myself by eating to late at night or just not eating the right kind of stuff....  As long as side effects dont all manifest themselves at the SAME time, I can adapt (so far).  I have this Fretish for walking by the Frette store and looking at new sheets everyother day... Not that I could afford them, but I think I am going to increase the stock pile of fitted sheets... I even thought about seeing if you can by a plastic cover that goes on top of the matress...  FUCK!  Oh well, you know,  we are doing just fine and plan on meeting every new challenge with a solution...   I hope we can keep up... ;)

Love

Offline aztecan

  • Member
  • Posts: 5,394
  • 29 years positive, 57 years a pain in the butt
Re: Settling in with HIV
« Reply #12 on: August 06, 2006, 03:17:17 PM »
Hoo boy,
Can I relate to this. I, once upon a time, used to sleep in the nude. Well, things changed.

I have had the occasional accident while sleeping. What Philly267 describes was exactly what I went through when I took Saquinovir (Invirase) back in 96. Part of the problem was, at the time, I also was an undiagnosed gluten intolerant.

I still have the problem occasionally. But I find I can manage it a little better when I watch what I eat.

Greasy food is pretty much a no-no. I eat nothing that contains wheat, oats or barley or any by-product thereof. I also eat no dairy, except for hard (aged) cheese such as cheddar or swiss, or organic yogurt.

But still, it happens. I can't say its just the meds, because it isn't. Its the meds, my diet, lack of sleep, not enough fiber, not enough water, a whole combination of things.

So don't let it get you down and for heaven's sake, don't avoid taking meds because of it. Everyone is different, so it may not even be a problem for you.

Eric, congrats on completion of your first year. You've heard it said it is a tough time, and it is.

BIG HUGS

Mark

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

Offline bear60

  • Member
  • Posts: 4,104
Re: Settling in with HIV
« Reply #13 on: August 06, 2006, 03:32:36 PM »
Eric.....I know its been said before...... but a sense of humor about this sort of thing is good to have.  I know you do have one and can see that there is some humor even in a sticky (pun intended) subject.
Poz Bear Type in Philadelphia

Offline Miss Philicia

  • Member
  • Posts: 24,016
  • celebrity poster, faker & poser
Re: Settling in with HIV
« Reply #14 on: August 06, 2006, 03:43:25 PM »
Probably doesn't help that my lipo is so bad that I have no butt resulting in less muscle action to keep stuff "in" up there when I need to!  ha ha  I still recommend the Pancrecarb.  ADAP pays for it here and it's made it so that I can enjoy a cheeseburger and fries occasionally again without dreading after effects.  I'd say it's reduced the problem by 75%.  I've had no anal leakage on it and not any pure liquid poop.  The remaining 25% is just an occasional somewhat overly soft stool but I'd argue that anyone can have that from time to time.

I also think some people are already genetically predisposed to having GI issues.  If you don't nip this problem with something you will NOT be absorbing your HIV medications thoroughly.  I'm convinced that not addressing this problem for 5 years is what resulting in my having resistance to PI's.  Fortunately for me TMC-114 (Prezista) came along and has given me FABULOUS results in the last 2 months.  Best of my life by leaps and bounds.

Quote
PANCRECARB® disperses with food in the stomach and delivers bioactive pancreatic enzymes and bicarbonate buffer into the upper intestine. The bicarbonate in the microenvironment surrounding the microspheres helps to re-establish the natural digestive conditions (slightly alkaline) in the upper intestine. The active enzymes hydrolyze fats into glycerol and fatty acids, proteins into peptides and amino acids, and starches into dextrins and maltose.

PANCRECARB® provides optimized digestive enzyme supplementation therapy and a rapid, significant reduction in abdominal pain, cramps, flatulence and stool frequency associated with poor digestion of foods.

PANCRECARB® helps to maintain intestinal regularity and general health.
« Last Edit: August 06, 2006, 03:48:05 PM by philly267 »
"I’ve slept with enough men to know that I’m not gay"

 


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