Author Topic: Advice (Read 10805 times)

NycJoe · « **on:** July 12, 2009, 01:43:50 pm »

I have been having diarrhea for a few days and now nothing. Lower left abdominal pain sensitive to the touch and have had a low grade fever between 99.5-101 for 2 days. I am thinking about trying a laxative to "get things moving" since I know I have to go but nothing is coming out. I left a message with my Dr 6 hrs ago and again 2 hrs ago but nothing. Do you think a laxative would be okay? I know no one here is a Dr but any advice would be appreciated. I have no clue what is going on but it is painful! Thanks guys....Joe

PeteNYNJ · « **Reply #1 on:** July 12, 2009, 01:51:07 pm »

Hey Joe

Sounds like Colitis or Diverticulitis. I have a similar condition that flares up every once in a while. If the pain gets really bad or your temperature goes higher go to the ER - they can also examine you and determine what is causing the problem.

Good thing is it usually clears up on it's own in a few days.

Feel better

Pete

NycJoe · « **Reply #2 on:** July 12, 2009, 08:17:42 pm »

Well all right Dr Pete. My Dr called and said it is probably Colitis or Diverticulitis. LOL You make a great diagnosis. I am going in tomorrow but if it gets worse she told me to go to the ER tonight. My pain has not increased but my temp is now up to 102 so I am debating. I DREAD ERs. Thanks...

Joe

PeteNYNJ · « **Reply #3 on:** July 12, 2009, 08:40:36 pm »

LOL

I have dealt with it long enough to know the pattern.

What are your numbers? 102 is getting up there and a lot of time if fever is involved, there is an infection in place. You will need antibiotics, IV is the best course. It will reduce the swelling in the problem area and allow you to have a BM. Right now, you are probably swollen down there blocking passing any feces. Good thing about ER is they will give you painkillers (morphine yeah!!!). They will most likely admit you though so if you don't want to go that route then wait until tomorrow at the doctor.

Even when you feel better - follow up with a Gastro Doc! You want to find out exactly what it is. Colitis tends to be similar to irritable bowel. Diverticulitis you can help by change dies (no more nuts, seeds, etc).

NycJoe · « **Reply #4 on:** July 12, 2009, 08:50:24 pm »

Had labs in June. Was undetectable with T's at 783 and percentage at 34. Never had morphine..but now that you did mention that it does sweeten the pot a little to go to ER. LOL I have NEVER been constipated in my life. In fact I have IBS so this is a switch for me. If the fever does not go down or goes up I am going to go in. Thanks for the info. I never talk about my shit to anyone either so this is something new and liberating for me. I feel...free. Actually I don't LOL. I feel backed up!

PeteNYNJ · « **Reply #5 on:** July 12, 2009, 08:58:34 pm »

Ha Ha Joe

Same here - only time I was ever constipated. I was like ummmm what is this about?

Feel better

NycJoe · « **Reply #6 on:** July 15, 2009, 10:52:16 am »

UPDATE: Been in hospital since Mon morning. It is diverticulitis so it is slowly getting better. On top of that a CT scan found a 3 cm mass on top of my left kidney..irregular shaped, so waiting to see specialist about that. Might want a biopsy or an MRI for that not sure. Also a 1 cm polyp on gallbladder so that eventually has to come out. I heard them in hallway (Dr speaking to students) to always say HI Five for hiv..but I already had heard that one. Anyway that's it just waiting to hear about kidney since they seem more concerned about that than anything. Hope everyones day is going better than mine! Morphine rocks.

Joe

bear60 · « **Reply #7 on:** July 15, 2009, 11:17:48 am »

Best of luck to you Joe.

Hugs
Joel

NycJoe · « **Reply #8 on:** July 16, 2009, 08:10:37 am »

SO ..now they think I may have c diff. WTF. Nothing like watery diarrhea on top of everything else. Not to mention in order to get things done here..as in any hospital you really have to be on top of your health and in control because it takes forever to get things as simple as a stool sample done. I have been telling different nurses and Drs what tests I need and they are like oh okay. Why must I know more than they do? DAMN. I know I am frustrated since I have had no food in 4 days. Okay I feel better now. LOL...Joe

PeteNYNJ · « **Reply #9 on:** July 16, 2009, 02:52:38 pm »

What is c diff?

What hospital are you in? I find that makes all the difference.

You should tell that doctor that using the term HI 5 is a violation of your rights as a patient. Talk about stigma...jeesh.

Pete

Luke · « **Reply #10 on:** July 16, 2009, 03:42:08 pm »

Quote from: PeteNYNJ on July 16, 2009, 02:52:38 pm

What is c diff?

Clostridium difficile: a bacterial infection which can cause all manner of digestive tract problems - usually when your normal 'good' gut bacteria have been knocked out of action by antibiotic treatments. At its worst it is fatal.

PeteNYNJ · « **Reply #11 on:** July 16, 2009, 03:51:40 pm »

Thanks Luke....not fun.

Joe - if you need anything let me know. I am in NYC a lot and can swing by with magazines and such.

Pete

NycJoe · « **Reply #12 on:** July 16, 2009, 05:14:09 pm »

Pete thanks much for the offer but luckily I have had many friends stop by with magazines and best of all my laptop. Yeah the HI 5 thing probably would have bothered me much more at the time but it was 6am and I was on morphine but could actually hear..pretty loudly this Dr discussing it with her students in hallway and was a little taken aback. It wasn't even whispering. I'll get her before I leave don't worry because the more I thought about it the more it pissed me off.

Sorry I should have described the C Diff but thankfully someone else did. It is not for sure but they are thinking that is what it is and they finally took my sample away. Just water basically. LOL Thanks for sharing right? I am in Northshore LIJ only because it was convenient (live in Queens) and I wanted something relatively close to most of my friends etc. Overall they are pretty good here. Hopefully be out by Sat...Thanks again....Joe

PeteNYNJ · « **Reply #13 on:** July 17, 2009, 02:29:45 pm »

How you feeling today, Joe? Any better?

Inchlingblue · « **Reply #14 on:** July 17, 2009, 03:20:45 pm »

Quote from: Luke on July 16, 2009, 03:42:08 pm

Clostridium difficile: a bacterial infection which can cause all manner of digestive tract problems - usually when your normal 'good' gut bacteria have been knocked out of action by antibiotic treatments. At its worst it is fatal.

It's so important to take probiotics........

Luke · « **Reply #15 on:** July 17, 2009, 03:36:07 pm »

Quote from: Inchlingblue on July 17, 2009, 03:20:45 pm

It's so important to take probiotics........

In general, yes - a good idea after taking broad-spectrum antibiotics - but alas pretty pointless if you have an acute symptomatic c diff infection; because the antibiotics used to treat such an infection will kill any probiotic quicker than you can say clostridium difficile.

NycJoe · « **Reply #16 on:** July 17, 2009, 05:05:20 pm »

(Apologizes for the language)

I'm starting to get fucking pissed. Still no solid food since Sunday. The diverticulitis is pretty much gone. I am in no pain. I am walking and full of energy. However the bloody diarrhea is out of control so I am not getting out today as planned but I am in the dark because no one is telling me anything. I fear when my Dr comes in he will need a needle and thread to sew his head back on after I bite it off. I feel fine which is bizarre. They are testing my stool for all kinds of things and now it looks like I'm stuck here for the wknd. I hate not having good communication and the 3 Dr's I am seeing better fucking come in or God help them. Okay...I feel better now. LOL

Joe

Inchlingblue · « **Reply #17 on:** July 17, 2009, 05:25:31 pm »

Quote from: Luke on July 17, 2009, 03:36:07 pm

In general, yes - a good idea after taking broad-spectrum antibiotics - but alas pretty pointless if you have an acute symptomatic c diff infection; because the antibiotics used to treat such an infection will kill any probiotic quicker than you can say clostridium difficile.

I mean for preventive care and maintaining optimal good gut health (not in order to treat c diff of course). It is, in my opinion, based on a lot of reading, important to take probiotics as a regular supplement not only after taking broad-spectrum antibiotics but in general, whether or not one has HIV, and especially if one does have HIV:

Probiotic bacteria may stop HIV infection

LINK:

http://www.nutraingredients.com/Research/Probiotic-bacteria-may-stop-HIV-infection

Probiotic dairy could help HIV drug delivery

LINK:

http://www.in-pharmatechnologist.com/Materials-Formulation/Probiotic-dairy-could-help-HIV-drug-delivery

Probiotics may ease gut problems in people with HIV/AIDS

LINK:

http://www.foodnavigator.com/Science-Nutrition/Probiotics-may-ease-gut-problems-in-people-with-HIV-AIDS

A "Cultured" Response to HIV: Probiotics in Yogurt Could Hold Keys to Optimal Gut Health in HIVers

Yogurt may be a delicious snack for many people, and can be a healthy alternative to most pastries or potato chips. But can it also raise CD4 counts and protect against some HIV-related infections? Maybe so, say some researchers. A recent article in the journal Nature Medicine explores the connection between yogurt consumption and gastrointestinal health, or "gut health," for people with HIV.

LINK:

http://www.thebody.com/content/art52570.html

Inchlingblue · « **Reply #18 on:** July 17, 2009, 05:27:40 pm »

Quote from: NycJoe on July 17, 2009, 05:05:20 pm

(Apologizes for the language)

I'm starting to get fucking pissed. Still no solid food since Sunday. The diverticulitis is pretty much gone. I am in no pain. I am walking and full of energy. However the bloody diarrhea is out of control so I am not getting out today as planned but I am in the dark because no one is telling me anything. I fear when my Dr comes in he will need a needle and thread to sew his head back on after I bite it off. I feel fine which is bizarre. They are testing my stool for all kinds of things and now it looks like I'm stuck here for the wknd. I hate not having good communication and the 3 Dr's I am seeing better fucking come in or God help them. Okay...I feel better now. LOL

Joe

Joe:

It's good to let it out here, so feel free, but it won't do you any good to be biting the doctor's head off, etc........take a deep breath..........

PS: sometimes diverticulitis can come about when there is not enough fiber in one's diet.......you should make sure you are getting enough fiber (and probiotics!) to help maintain optimal gut health

Luke · « **Reply #19 on:** July 17, 2009, 05:37:48 pm »

Quote from: NycJoe on July 17, 2009, 05:05:20 pm

(Apologizes for the language)

I'm starting to get fucking pissed. Still no solid food since Sunday. The diverticulitis is pretty much gone. I am in no pain. I am walking and full of energy. However the bloody diarrhea is out of control so I am not getting out today as planned but I am in the dark because no one is telling me anything. I fear when my Dr comes in he will need a needle and thread to sew his head back on after I bite it off. I feel fine which is bizarre. They are testing my stool for all kinds of things and now it looks like I'm stuck here for the wknd. I hate not having good communication and the 3 Dr's I am seeing better fucking come in or God help them. Okay...I feel better now. LOL

Joe

Joe,

If you do have c diff - or if they even just suspect it is a possibility - they can't give you any of the usual antidiarrhetics (i.e. loperamide etc.) because there is a strong chance that it will only make the infection much worse .. plus there is the possibility you will need heavy-duty antibiotics. Frustrating as it is, you are probably better off where you are for now.

Chin up

positivmat · « **Reply #20 on:** July 17, 2009, 06:35:51 pm »

Hey Joe, I was reading your thread and just wanted to say that I hope everything comes out alright

. Seriously, get better.

My ARS was one week of constipation and it sucked. Take a hit of morphine for me.
Matt

Ann · « **Reply #21 on:** July 17, 2009, 10:59:35 pm »

Hi Joe, sorry to hear you've still got the dire-rear. I sure can relate.

I've had chronic problems with diarrhea since after around 4-5 years of being poz (just over 12 years poz now). I've been tested and re-tested and tested some more for intestinal bugs - nothing. I've tried every dietary modification you could think of, and gave each and every one of them plenty of time to take effect. No change. I've taken meds for IBS. No luck. I've tried meditation, exercise, and just about everything else you can thing of - short of exorcism. I still shit my brains out. (no wonder I get brain-fog!)

We finally threw in the towel and labeled it "hiv related diarrhea". I can't take Imodium - it makes me constantly nauseous. The only thing that works for me is daily dihydrocodeine. I don't like taking it - I have to take regular breaks from it (during which I can't go too far from toilet facilities) to stop my tolerance from going through the roof, and I've gotten grief from doctors (who don't know me) who think I take it for the ha-ha's. As if. It interferes with my sexual response and that's no fun.

Dealing with the dire-rear with no codeine is even less fun though, so I put up with what works and allows me to leave my house without rubber-bands around my jeans at ankle level. Not only is it mainly water, as you described yours (I call it the "river-water-shits", because it reminds me of a river after a heavy rain - sorry if that's TMI) but I also get gut-wrenching cramps, even when I don't actually have to "go". And when I do have to "go", I've got less than a minute to "get". My guts make so much noise that my dog used to growl back.

Anyway, the point of me telling you all these grisly details is - it's possible that your tests will draw a blank. It's also possible that even though you're on hiv meds (I'm not), it may just be the virus giving you shit. Literally.

Hang in there. I hope you feel better and I hope they find a fixable cause.

Ann

Inchlingblue · « **Reply #22 on:** July 18, 2009, 12:28:55 pm »

Ann: Have you tried L-Glutamine, a lot of people swear by it for IBS?

LINKS:

http://www.healingwell.com/Library/ibs/article.asp?author=thompson&id=2

http://www.revolutionhealth.com/drugs-treatments/rating/l-glutamine-glutamine-for-irritable-bowel-syndrome-diarrhea-ibs-d

http://www.mombu.com/medicine/medicine/t-l-glutamine-has-helped-diet-bacteria-bladder-colonoscopy-diarrhea-2213879.html

Ann · « **Reply #23 on:** July 18, 2009, 02:09:06 pm »

Inch,

Yes, thanks, that's one of the things I've tried. We eventually ruled IBS out - it' usually a catch-all diagnosis for bowel problems, but it also will usually respond to either treatment, dietary changes, life-style or some combination of the three. Mine didn't. Like I said above, my specialist finally decreed it was hiv-related.

And yes, we also discussed going on hiv meds, but decided it might be asking for more bowel problems and my numbers didn't warrant my going on meds. The codeine works, so that's what I'm sticking with for now. If and when Isentress gets approved for once-daily dosing, then I'll go on meds before my numbers say I should. Until then...

Ann

Inchlingblue · « **Reply #24 on:** July 18, 2009, 02:22:37 pm »

The glutamine is for "dire-rear" in general, regardless of its origin, not just IBS. But if you tried it and it didn't work, bummer. I mean, that stuff BINDS, lol.

I've heard through the grapevine that Isentress has a good chance to be approved for once-daily by February of 2010 (barring any unforeseen complications in the current study, which seems to be going well).

I just started TODAY (Isentress/Truvada)! Woo-hoo.

Ann · « **Reply #25 on:** July 18, 2009, 02:33:47 pm »

Yes, codeine usually "binds" most people too - all it does for me is to make river water into something slightly more like sediment. Years ago even small amounts used to make me instantly constipated, now it just makes things somewhat solid. It also takes care of the cramps and generally makes life easier with less laundry to do.

And yes, I'm really looking forward to Isentress being approved for once-daily - and I can only hope that NICE agrees.

Ann

NycJoe · « **Reply #26 on:** July 18, 2009, 02:54:02 pm »

Thank you to everyone for the support and making me laugh. The GOOD news is the blood is no longer in diarrhea even though I still have it. Also I get to go home tonight. The BAD news is the mass they found on my kidney is a tumor and its cancer. Golf ball sized. As the Dr told me, diverticulitis could be the best thing that ever happened to me because kidney cancer has no symptoms until its very well advanced. So I will just take it in stride and be happy they found it now. It does have to come out and possibly the kidney too. Again, kidney a good place since of course we all have two. So sometimes something good can come out of something bad. Even though it is still bad. LOL I'm so happy to be going home I am taking the kidney thing in stride right now. So diverticulitis is so yesterday..cancer is what's in now. Fun times ahead.

Joe

bocker3 · « **Reply #27 on:** July 18, 2009, 02:59:10 pm »

HI Joe,

Glad to hear that you are heading home -- a hospital is never a fun place to be.

sorry to hear about the cancer -- it is amazing how something like diverticulitis can turn out to be a miracle. You seem to be taking this all pretty well -- a positive attitude is very good medicine. However, please don't hesitate to get on here and dump things if this changes.
Let us know how things progress.

Will keep you in my thoughts,

Hugs,
Mike

Luke · « **Reply #28 on:** July 18, 2009, 03:06:38 pm »

Joe,

Sorry to hear that - but obviously glad the spotted it sooner rather than later. Keep smiling through.

Ann · « **Reply #29 on:** July 18, 2009, 03:55:33 pm »

Hi Joe,

Wow, that's really a surprising bummer. At least it's been caught early. The earlier something like this is caught, the better.

I'm glad they're letting you go home. Hang in there and keep us posted.

Hugs,
Ann

positivmat · « **Reply #30 on:** July 18, 2009, 04:09:21 pm »

Hey,
Sorry to hear about that diagnosis. Good thing it is early. Thinking of you and will say a prayer too. Be well and keep thinking well.
Matt

PeteNYNJ · « **Reply #31 on:** July 18, 2009, 04:21:03 pm »

Echoing everyones sympathies about the cancer but like the doctor said - this could be a blessing because when would you ever get your kidney checked out? Probably when it was progressed.

Have they told you what the next steps are regarding the cancer? Take it easy when you get home.

Keep us informed with what is going on and good luck

Pete

bear60 · « **Reply #32 on:** July 18, 2009, 04:29:02 pm »

Sorry to hear this Joe...hang in there. Like Pete said: dont overdo it, take it easy.

Joel

Inchlingblue · « **Reply #33 on:** July 18, 2009, 07:24:16 pm »

It's never easy to hear the "c" word but it does sound like the digestive issue allowed for this to be caught early when it might have gone unnoticed otherwise. Hang in there. I found this online, which sounds good:

Often, kidney cancers are found incidentally during tests for some other illness such as gallbladder disease. These cancers usually are causing no pain or discomfort when they are discovered. The survival rate for kidney cancer found this way is very high because these cancers are usually found at a very early stage.

LINK:

http://www.cancer.org/docroot/CRI/content/CRI_2_4_3X_Can_kidney_cancer_be_found_early_22.asp

Ann · « **Reply #34 on:** July 18, 2009, 08:39:06 pm »

BTW Joe, when you said "bloody diarrhea" in a previous post, I thought you were swearing Brit-style. I didn't realise you actually meant blood in your poo. That would scare the bejesus out of me! I'm glad it stopped for you - and it probably indicates a simple irritation from crapping through the eye of a needle for the past few days.

And again, I'm glad you caught the C in good time. I've got a good feeling you're going to be just fine.

Hugs,
Ann

NycJoe · « **Reply #35 on:** July 18, 2009, 10:54:24 pm »

Thanks to each and every one of you for your support. I am home and not sure if it was laying around for 6 days but finding myself just exhausted. I took a LONG shower which was just awesome. Feels good to finally be out of a gown (hospital gown). Didn't want anyone to think it was an evening gown. ;-) Yes I am now facing the big C but too tired to care if that makes sense. Tomorrow I am sure it might hit me harder. Yes it is a curable cancer but I dread the thought of going back into a hospital especially for surgery.

Anyway thanks again Ann and everyone! You guys rock.

Joe

Ann · « **Reply #36 on:** July 18, 2009, 11:48:19 pm »

Quote from: NycJoe on July 18, 2009, 10:54:24 pm

Feels good to finally be out of a gown (hospital gown). Didn't want anyone to think it was an evening gown. ;-)

Well c'mon mate, a hospital gown is an exhibitionist's dream! Any evening-wear is sexy in the eye of the beholder. OK, I'm gonna shut up now before I give too much away.

Quote from: NycJoe on July 18, 2009, 10:54:24 pm

You guys rock.

Of course we do. What do you think we've got between our lug-holes?

Take care of yourself. We're here for you.

Ann

NycJoe · « **Reply #37 on:** July 21, 2009, 06:51:49 pm »

Thanks to everyone for the well wishes. I put a pic u so at least I am not some faceless name but I look so damn pale I think I might take it down and put a new one up when I look healthy! I am probably going to go to Sloan Kettering in Manhattan for the cancer since it is suppose to be the best. The best thing after all this is I am down 20 pounds! Now I am only 15 pounds from my goal weight. Woo Hoo!

positivmat · « **Reply #38 on:** July 21, 2009, 09:37:37 pm »

Glad to hear that you are taking care of yourself and getting the best attention you can get. Sloan did wonders for my friends who have gone thru cancer. It will do wonders for you too. And you caught it early too. Best wishes

Matt

Ann · « **Reply #39 on:** July 22, 2009, 07:22:16 am »

Hi Joe,

I'm glad you can access the facilities at Sloan-Kettering. They're got an excellent world-wide reputation. You'll be in good hands there.

Is the dire-rear still yesterday's news?

Hang in there and keep us posted.

Ann

mjmel · « **Reply #40 on:** July 23, 2009, 07:57:07 am »

Quote from: NycJoe on July 18, 2009, 10:54:24 pm

Thanks to each and every one of you for your support. I am home and not sure if it was laying around for 6 days but finding myself just exhausted. I took a LONG shower which was just awesome. Feels good to finally be out of a gown (hospital gown). Didn't want anyone to think it was an evening gown. ;-) Yes I am now facing the big C but too tired to care if that makes sense. Tomorrow I am sure it might hit me harder. Yes it is a curable cancer but I dread the thought of going back into a hospital especially for surgery.Anyway thanks again Ann and everyone! You guys rock.

Joe

Young man, get some rest...pause a short time...then jump back in to get that surgery done and over with.
BTW, You have a great attitude. You rock!

Mike

PeteNYNJ · « **Reply #41 on:** July 23, 2009, 03:21:35 pm »

I am always exhausted after a hospital stay. You get such shitty rest at the hosptial.

You have a great attitude and you know that makes a world of difference. Ask a lot of questions of your doctors.

Keep coming here and let us know how you are doing?

PeteNYNJ · « **Reply #42 on:** October 18, 2009, 06:52:10 pm »

Joe - how are you doing? Haven't heard from you in a while. I hope your doing well with your treatment.

Pete

nicknatpatywack · « **Reply #43 on:** October 18, 2009, 09:28:10 pm »

Well after already hearing the H word hearing the C word must have been another one to add to your list... It's like life likes to take a kick at us while were down. Just remember that you will prevail and become a stronger person after this. Be positive surround yourself around positivity and good energy!! You'll be in my thoughts and you'll get through this just fine keep us posted on your recovery ;-)

Theyer · « **Reply #44 on:** October 20, 2009, 05:37:32 pm »

hi Joe,
You have really hard a rough time, just wanted to send support, I also think you have to be well to deal with hospital, and yes many hours have been spent wanting to rip hospital staffs heads off.
Anyway keep in touch with us all
Theyer

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Author Topic: Advice (Read 10805 times)