POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: denb45 on January 28, 2011, 09:34:42 am
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1st of all, I was sent to the Center for Digestive Disease (GI Dept.) in DEC 2010, so that I could get a solution to having Chronic Diarrhea...... for the last 15 yrs of my life, when I spoke to the GI-doc in DEC, he thinks, that my problem ISN'T caused by HIV-MEDS, and said it's unfortunate that you have been told this for so many yrs.....
The procedure went well except they found a single diminutive polyp located in the ascending colon, there was normal mucosa, and they did multiple biopsies of the TI and colon, the polyp was removed w/ cold biopsy, and Epineprine injection was performed in the rectum for hemostasis at the biopsy site ( to prevent bleeding in that area)
There were no other unplanned events, and I had a normal rectal exam, after I woke-up I spoke with the GI-doctor, and he told me, that a follow-up on the results of the biopsies specimens will be done in about 2 weeks, I sure hope they come back ok ???
The funny thing is ,I haven't had ANY more Chronic diarrhea since the procedure, I know that's only wishful-thinking at this point, considering all of the shitting I did for the last 2 days for the prep-procedure, and being on a liquid diet, YUCK, that was awful, I was so hungry and had this very bad caffeine headache :)
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Congratulations on having a normal rectum ;D
Seriously, glad it came out...all is well.
Caffeine headache? Did you use coffee for your liquid diet?
:-[I should have been there and spoon fed you strained chicken noodle broth.
What so you mean by cold biopsy?
Speedy recovery
Ronnie
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Congratulations on having a normal rectum ;D
Seriously, glad it came out...all is well.
Caffeine headache? Did you use coffee for your liquid diet?
:-[I should have been there and spoon fed you strained chicken noodle broth.
What so you mean by cold biopsy?
Speedy recovery
Ronnie
LOL..........that's too funny Ronnie you made me laugh ;D I'm not sure, must be some kinda removal method.....dunno, this stuff is way above my pay-grade :)
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So if it's not meds is it just HIV itself causing your diarrhea issues? And if so how does he hope to alleviate the issue long term?
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So if it's not meds is it just HIV itself causing your diarrhea issues? And if so how does he hope to alleviate the issue long term?
That is a very good question? and thanks for that Miss P, I'll be sure to ask him that in 2 weeks when my results come back on the follow-up, he's sure it's NOT the meds tho, however my HIV/AIDS history may very well be a contributing factor......you just never know ;)
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mebbe you need a fecal transplant
http://www.slate.com/id/2282768?wpisrc=xs_wp_0001
:)
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mebbe you need a fecal transplant
http://www.slate.com/id/2282768?wpisrc=xs_wp_0001
:)
C. diff bacteria hasn't yet been ruled-out however , the GI-doc did mention it to me, and thinks that might be the problem, after 15 yrs. but, it seems like i would have been DEAD by now, so maybe that's not the case ???, at least i sure hope it isn't, none of my hair has fallen out, and I've NEVER lost that much weight over the yrs. :-\
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mebbe you need a fecal transplant
http://www.slate.com/id/2282768?wpisrc=xs_wp_0001
:)
That's interesting. One of my clients just got out of the hospital this last week, after being diagnosed with C. Dif. I went to see him while he was in, and had to wear a mask. And when the CNA came into his room to take his vitals, she had like a helmet on, and full protective clothing. I had no idea it was so contagious. But yeah, he was very very ill, and the recovery from it is going very slow. Hopefully, Dennis, this is not what's going on with you. My client was prescribed 5 different things when he was discharged, though I don't know the names of the meds. One of them was Dapsone, that I do remember. Oh, his CD4 count at the present time is 6, and viral load 570,000 (he's been on a crack run the last two years).
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Thanks Betty ;) I'll find out what I have in a few weeks (or whats causing the Chronic Diarrhea for a number of yrs.) I don't think it's medications, I have good numbers, no fever, T-cells are way above 300 to 400 range, and I've been undetectable for yrs. so my guess would be IBS or Colitis, one thing is for sure tho, I also have GERD and I'm currently take Ranitidine for it PRN, also , I have a history of Digestive Disease in my family, what REALLY scares me about all of this is, I remember my Father had GI-problems so bad he had surgery that didn't go well, so he ended up with a Colostomy-Bag, and he was in his late 50s like me ???
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I guess you could enjoy a 'peanutbutter and.. ... s'cat sunday' from a posting from last year...of two girls...enjoying fecal transplanting...in a manner of speaking.
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I loved my colonoscopy so much, I wish I could get one every week.
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I loved my colonoscopy so much, I wish I could get one every week.
YES, the Drugs is what I liked the best, but NOT the 2 day prep, and the painful GAS afterward
but, knock-on-wood, I don't know what that Dr. did, but my diarrhea is GONE, at least for now
but I know it will be short-lived, it always comes back with a vengeance , hopfuly , when I do see
him in about 2 weeks he'll be able to tell me what is the cause of it, and maybe treat it, after all these yrs. ???
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I saw my ID doctor yesterday and have to schedule one today. He aleady made the referral. Haven't had one in 5 years and they removed several of those polyps at the time. My doc had an intern with him and I felt uncomfortable with him watching my doc fingering me. He he been ugly, would have been ok, but he was so totally hot. Tall and think and so damn cute. Wonder if it'd been ok to ask for him to do the "check"?
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Well keep-in-mind, that intern will someday become a doctor, and they have to learn the ropes too, I go the University of New Mexico Hospital here in Albuquerque, NM, and they always have intern-students w/ most doctors (it's a teaching Hospital) as they say in my neck of the woods :)
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I saw my ID doctor yesterday and have to schedule one today. He aleady made the referral. Haven't had one in 5 years and they removed several of those polyps at the time. My doc had an intern with him and I felt uncomfortable with him watching my doc fingering me. He he been ugly, would have been ok, but he was so totally hot. Tall and think and so damn cute. Wonder if it'd been ok to ask for him to do the "check"?
I think I would have gone ahead and asked if he could give a second opinion on the matter...and depending on how much you can stretch maybe a thjrd finger third opinion...just to be sure. ;)
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Here's what they said: The single poly removed was an adenoma. This as concerned pre-cancerous and requires a repeat exam @ 5 years to confirm no further polyps.
In regards to your diarrhea, biopsies were taken both in the small bowel and the colon: however, do not show an etiology. on your follow-up in the GI clinic, this will be discussed further, and a treatment plan will then be given....on FEB 25th @ 3:30 PM....I'll let you all know what that might be, as many of you here suffer form chronic diarrhea and have done so for as many years as I have, is this the result of 20 yrs. of HIV/AIDS? or is this a form of digestive disease? that's the burning question here, and I'll be sure and ask the GI Doctor what he says this really is :)
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I'm no doctor but I can comment on diet. Kurt, my partner of 16 years used to have bad diarreah. Certainly some of it was due to THE MEDS he was taking at the time. Now he is taking Isentress + something else. Lovely med compared to those old ones.
BUT HE IS ON A LOW FAT, LOW COLESTEROL DIET which is designed to curb his trigliceride level. ( I should add that this diet is supplemented with colesterol lowering drugs.) His BM's now are so hard they literally stop up the toilet.
NO fried foods
No french fries
No pasta
No Pizza
No bread
No cheese
and the list goes on.
If he eats something with lots of fat in it....(like pizza) he says it just travels right thru him.
I forget what your diet consists of , Dennis
Remember...... your liver may not be processing fat properly anymore.
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I'm no doctor but I can comment on diet. Kurt, my partner of 16 years used to have bad diarreah. Certainly some of it was due to THE MEDS he was taking at the time. Now he is taking Isentress + something else. Lovely med compared to those old ones.
BUT HE IS ON A LOW FAT, LOW COLESTEROL DIET which is designed to curb his trigliceride level. ( I should add that this diet is supplemented with colesterol lowering drugs.) His BM's now are so hard they literally stop up the toilet.
NO fried foods
No french fries
No pasta
No Pizza
No bread
No cheese
and the list goes on.
If he eats something with lots of fat in it....(like pizza) he says it just travels right thru him.
I forget what your diet consists of , Dennis
Remember...... your liver may not be processing fat properly anymore.
Is this HIV/AIDS.....NO
Is this due to poor diet.......NO
Is this due to poor liver function.....NO
Is this GI-disease......YES!
Drum-roll-Please! and the Diagnosis: Irritable Bowel Syndrome (Diarrhea related IBS) w/ possible Bacteria in the Small Intestines Releasing Hydrogen causing bloating & gas.......is it treatable? YES w/ Medication
Now I have to do a breath-test this will take 3 hours, and requires a prep diet the day before, this will determine, if I have high-levels of Hydrogen in the small-intestines, GI-Doctor says, I've had IBS for many years. and he can treat this w/ Medication, after my next visit, I'll find out what the Meds are and the treatment plain will be ;)
Also, my Norvir (ritonavir, RTV) and Aptivus (tipranavir, TPV) can cause Diarrhea, and both PI's may have to be changed to something else, I see my ID-Doctor next month, so I'll ask her and see what she thinks, if my PI's should be changed to something else ......problem is, there really isn't any other PIs, on that list
that I haven't already taken before, so i don't have ANY options left as far as PIs go ???
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....... ( I should add that this diet is supplemented with colesterol lowering drugs.) His BM's now are so hard they literally stop up the toilet.......
.. ;D flasshhh backk. :D
Poor Dennis,
They are testing you up one side and down the other.
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IT'S BACK ??? well after almost a whole month reprieve of no diarrhea, my old nemesis has come back to torture me yet AGAIN :-[ ( GI-Doctor said yesterday, that it will come back) so he was correct about that, oh well it's back to my 1/2 bottle of Pepto Bismol twice a week (that seems to be the only thing that works) at least until I see the GI-Doctor again next month :-[ after 16 yrs. of THIS, I guess I should just accept this
as this is part of my SSDI-Disability, (that's not gonna get any better) and has been for the last 12 yrs. of my life, I know the GI-Doc said he can treat this, but, that doesn't mean it's going away for good ???
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How is your GI-DR going to treat it? I'm sorry you are feeling miserable.
*I sorta like the taste of Pepto Bismol.. ::)...probably because it is part of a childhood memory*
During the summer we would get to go stay with various relatives and my paternal Gparents had a cotton gin in Longview, Tx. There were barracks for the Hispanic workers and I was forever worrying Gmom by disappearing....
She would always find me in the barracks full of burritos and tamales..and I would get a tummy ache and she would give me pepto bismol and wrap me up in a blanket and rock me until i felt better....or passed out.
Would you like me to come to New Mexico and wrap you in a blanket? :-*
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How is your GI-DR going to treat it? I'm sorry you are feeling miserable.
*I sorta like the taste of Pepto Bismol.. ::)...probably because it is part of a childhood memory*
During the summer we would get to go stay with various relatives and my paternal Gparents had a cotton gin in Longview, Tx. There were barracks for the Hispanic workers and I was forever worrying Gmom by disappearing....
She would always find me in the barracks full of burritos and tamales..and I would get a tummy ache and she would give me pepto bismol and wrap me up in a blanket and rock me until i felt better....or passed out.
Would you like me to come to New Mexico and wrap you in a blanket? :-*
Sure, you'd be more than welcomed :D I'm not sure how the GI-doctor is gonna treat this, but did say he could w/ medications, but did also add that THIS isn't going away, but can be controlled to a livable level
I guess he knows a lot more than what all of my previous ID-Doctors knew about this, they always wrote it off as AIDS, he says it's NOT AIDS, and too bad you were told this for last 16 yrs. ???
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Hey Dennis,
I can't remember if I have asked you this, so . . .
Has your doctor checked you for Celiac disease or gluten intolerance?
Both of those an cause the things you mention.
Just a thought.
HUGS,
Mark
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Hey Dennis,
I can't remember if I have asked you this, so . . .
Has your doctor checked you for Celiac disease or gluten intolerance?
Both of those an cause the things you mention.
Just a thought.
HUGS,
Mark
Hey Mark, YES he did that, and said that those aren't the cause, and I don't have Celiac disease or gluten intolerance, he ruled out as a Diagnosis: Irritable Bowel Syndrome (Diarrhea related IBS) how and what he'll use, I'll find out next month, if I don't pass that Hydrogen breath-test ,then he'll treat, if I do pass it, then he suspects THESE: Norvir (ritonavir, RTV) and Aptivus (tipranavir, TPV), but not as the cause, the IBS is a sure thing according to him , he also informed me that over 50 million people suffer from some from of this, and this can be debilitating, if unchecked and not treated, like it has been for me for the last 16yrs. ??? it will be nice to get a handle on this, as I cannot even leave the house for too long, without wearing some type of depends (adult diapers) so I'm kinda a shut-in, and have been for a lot of yrs. ???
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*I sorta like the taste of Pepto Bismol.. ::)
The Pepto Bismol only provides temporary relief , it still gives me black colored diarrhea instead of brown, and that stuff is like all of the other antidiarrheals I've taken thur the yrs. even the prescriptions ones offered almost no or little relief, hopefully that GI-Doctor over @ UNM Digestive Disease Center can offer me a more permanent solution to this on-going problem, and I did try to communicate THIS to all of my other ID-Doctors in the past yrs., I guess I just didn't do this very well, so they were unable to help or treat? so, @ this point I can only hope for the best, what have I got to loose after 16 yrs. of this,
sleeping w/ adult diapers on, on a mattress-pad, and not being able to leave my own home just isn't
a very fun thing to do, for so many yrs. ???
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I can relate to the feeling of being trapped, Dennis. I sometimes have gone a whole week without leaving the house. It really feels nice to get out.
added: I got out of the house this past Thursday and met David...Miss P...for a beverage. It was great seeing him and catching up.
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I can relate to the feeling of being trapped, Dennis. I sometimes have gone a whole week without leaving the house. It really feels nice to get out.
I go at least 2 to 3 weeks stuck in the house most of the time....Yes, it does Joel, I'd like to visit my family in Nor-Cal, but cannot, it's been over 8 yrs., I d like to meet Carl, Ronnie and even Mark someday ( they don't live that far away) Capt. Carl being the closest to me (he lives in the Hills right behind me up I-40) Mark lives a little further away form me, and Ronnie lives about 400 miles maybe more, Seattle AMG is simply outta the question for me :-[
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Was this a new doctor for you? I am finding that none of my doctors agree on with the other on just what is best for ronnie..... :D
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Was this a new doctor for you? I am finding that none of my doctors agree on with the other on just what is best for ronnie..... :D
The GI-Doctor was a referral form my ID-Doctor, and you know how doctors can be, sometimes they don't always agree on treatment methods..........Ronnie, how is kattie your sister doing? is she still in the nursing home? are is she back home now, I hope she's ok , you don't mention her much anymore :)
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Katie is still in the nursing home...there's not much to tell...she's bedridden, does physical therapy and eats and plays pogo on her laptop.
Though she does make her presence known through the internet. I spent two days last week in cyber hell trying to straighten a mess she had made with the bank and finances.
I am paying all her bills now as the Nursing Home is taking her SSI check. She keeps forgetting passwords and will freak, and reset with a new password without telling me and without following my insistence that she write these changes down.
So she forgets what the new password is and one time she had one that was a sentence long... ::)
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Katie is still in the nursing home...there's not much to tell...she's bedridden, does physical therapy and eats and plays pogo on her laptop.
Though she does make her presence known through the internet. I spent two days last week in cyber hell trying to straighten a mess she had made with the bank and finances.
I am paying all her bills now as the Nursing Home is taking her SSI check. She keeps forgetting passwords and will freak, and reset with a new password without telling me and without following my insistence that she write these changes down.
So she forgets what the new password is and one time she had one that was a sentence long... ::)
??? will she ever get outta there, I'm sure it's a lot worse for her being in that awful place, I feel so sad for her , I just wanna cry now :'(..............WHERE MY LORAZEPAM ???
EDITED to add: ok I feel better now ;D so ronnie, I don't want to pry, but, if katties in a place that's helping her, then, it's really outta your hands, I mean, it was hard enough on you when she was there, and you have your own health problems, so the way I see it, it's a WASH :)
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I fear that my diarrhea issues may never be addressed? (since the GI-doctor really didn't find a cause for it, as I just got off the phone with him) he just told me, he cannot treat me for diarrhea, if there is no known cause, he tested me up the yen-yang, and didn't find ANYTHING ??? WTF and I just found out about that Hydrogen breath test isn't even for that, it's for something completely different in GI-treatment ???
my guess, it has to be long-term-AIDS, I mean what would a GI doctor really know about this? my ID-doctor thinks it's AIDS, so currently they are @ odds about THIS, what do anyone of you think about this, as diet, Celiac disease or gluten intolerance isn't the issues here, and IBS, well I'm not buying that one anymore ::)