Dont know how long i can put up with this !

You can do it here... but no profanity, naming specific names, etc. Try to be constructive. Suggestions to improve the board or discussion forums are always appreciated.
mach1320
Contributor
Posts: 90
Joined: Tue Sep 30, 2014 6:27 am

Dont know how long i can put up with this !

Postby mach1320 » Mon Feb 01, 2016 9:13 pm

Welp, found myself in another low spot. I'd say it started around Jan 9th 2016. First it felt like an ibs flare up which is what i assumed except i never recovered as i would normally.. Just kept feeling terrible. Finally had enough and got into my GI doctor last Wednesday and he ordered a C diff test and parasite test. This kind of a rant as well lol as I couldn't believe the testing requirements... Apparently in the last 3 or 4 months they adopted a will not test if not "watery" policy for c diff which i had seen others here mention with many labs. The doctor and lab tech told me this and i explained my first test, which was c diff positive was formed, much more than my current D. I took it to one of their smaller labs in hopes they just test what i dropped off. Is it possible for a relapse a year after testing negative with no antibiotic use? It just doesn't make sense. He's now talking a nutritionist will probably be next as we've discussed this last year but i know this isn't just ibs, i've been dealing with ibs for a couple years now and i know when it flares. This is just different, its not right something is off. He tells me no Imodium until the results come back but then in the same sentence tells me they wont test if not water.....seriously ? you're going to possibly miss such a bad infection ? I'm pretty sure the c diff will come back neg, rather they throw it away or not i'm not totally sold its a relapse yet. I almost want to ask him to treat for it just to try to wipe whatever is going on inside out.... this has absolute ruined my life. I'm a 24 y/o male and it took my social life out first which i tolerated, i recently bought my first home that im fixing up, symptoms have been manageable within reason the last 6-8 months and now bam. Now it wants to get into my work life too, this roller coaster is getting to be too much this isnt any way to live life.


I like my GI, and i think hes a good doctor but i feel like the medical "system" just runs you around like nobody understands the urgency of issues like these, so many missed opportunity's pass me by at work because i cant travel, i never know how I'll feel and now i cant even eat because of constant D.....ugh

NikaNik
Long Time Contributor
Posts: 699
Joined: Wed Mar 11, 2015 11:52 am

Re: Dont know how long i can put up with this !

Postby NikaNik » Tue Feb 02, 2016 11:58 am

Hi, mach! So sorry you're not feeling well. As you know it's rare for c diff to come back out of the blue after, say, 6 months to a year without antibiotic use, a new ingestion/exposure, PPIs (acid reflux meds) or oral steroid use (prednisone has been implicated). I went back to your old posts and it seems you had similar flares last February 14 and also in March and both were negative for c diff, and you also had a colonoscopy so I would think if you had more than IBS, they would've seen something? It is dangerous to treat for c diff without a positive test, as it can mess up your flora more and possibly cause it to resurface if any spores are in there.

Which test are they doing? The GDH and PCR are considered the most accurate (the EIA is the older testing that's not as accurate). Did you have any IBS before c diff? Has your doctor tried Enteragam? It's a medical food for IBS-D (takes about 4-6 weeks to kick in). It's supposed to firm up stools/help with IBS-D, heal the gut and boost the immune system. Might be something to ask about.

Will pray you are negative and feel better soon. Keep us posted.

mach1320
Contributor
Posts: 90
Joined: Tue Sep 30, 2014 6:27 am

Re: Dont know how long i can put up with this !

Postby mach1320 » Tue Feb 02, 2016 2:04 pm

Well bad news, they rejected my sample for c diff testing stating its not watery enough.... I sent them a message explaining my disappointment in that requirement given my history. They mentioned a sample I did not give that I never knew was required and asked to be tested for sibo

Bobbie
Administrator
Posts: 12688
Joined: Sat Aug 06, 2005 8:00 pm

Re: Dont know how long i can put up with this !

Postby Bobbie » Tue Feb 02, 2016 2:59 pm

See CDI - C, diff tests. See info about mixing small amount of saline in sample. OR call other labs and ask if they test solid samples.

mach1320
Contributor
Posts: 90
Joined: Tue Sep 30, 2014 6:27 am

Re: Dont know how long i can put up with this !

Postby mach1320 » Tue Feb 02, 2016 3:11 pm

Well the plot thickens , I don't know what to do


viewtopic.php?f=6&t=16114

mach1320
Contributor
Posts: 90
Joined: Tue Sep 30, 2014 6:27 am

Re: Dont know how long i can put up with this !

Postby mach1320 » Tue Feb 02, 2016 3:20 pm

Is there any good info on the saline ? I tried and couldn't find much solid info. I had seen some suggesting water may generate false negative

Bobbie
Administrator
Posts: 12688
Joined: Sat Aug 06, 2005 8:00 pm

Re: Dont know how long i can put up with this !

Postby Bobbie » Tue Feb 02, 2016 4:27 pm

Try a saline solution of l/2 tsp pickling or canning salt to 1 cup sterile - boiled - water.

Some labs will do culture on solid sample.Call around.

mach1320
Contributor
Posts: 90
Joined: Tue Sep 30, 2014 6:27 am

Re: Dont know how long i can put up with this !

Postby mach1320 » Tue Feb 02, 2016 5:43 pm

Well after being stern I was able to get the nurses to be a little more flexible and they must of got with my doctor and I'm looking at a hydrogen breath test in two weeks which I think is best prior to taking the antibiotic I had been offered . They said if I change my mind they will just send the script

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: Dont know how long i can put up with this !

Postby beth22 » Tue Feb 02, 2016 10:40 pm

I would do the breath test. Quest labs tests stool that is not D. If you have one in your area, maybe you can test for c diff there.

mach1320
Contributor
Posts: 90
Joined: Tue Sep 30, 2014 6:27 am

Re: Dont know how long i can put up with this !

Postby mach1320 » Wed Feb 03, 2016 11:42 am

Sounds like they don't like the idea of an outside lab....

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: Dont know how long i can put up with this !

Postby NanciT » Wed Feb 03, 2016 10:58 pm

Mach
Many Md's will use several different labs, depending on insurance. The HMO"s will stick with their own lab. If your symptoms continue and you want to test, you could check with Quest labs and ask what a PCR would cost. I am unsure of the cost but your MD can order at any lab, you may consider paying for the test if its possible and not too much. I would also make sure the lab will run the test.
Good Luck!
NanciT

mach1320
Contributor
Posts: 90
Joined: Tue Sep 30, 2014 6:27 am

Re: Dont know how long i can put up with this !

Postby mach1320 » Sat Feb 06, 2016 11:24 am

It sounds like they aren't fans of an outside lab but if they won't test what choice do I have. I'm currently going through s university health care system so they basically have somebody to do everything they're huge

mach1320
Contributor
Posts: 90
Joined: Tue Sep 30, 2014 6:27 am

Re: Dont know how long i can put up with this !

Postby mach1320 » Tue Feb 09, 2016 4:04 pm

So I saw my primary today to see about a test. Tech said it must be d but not nessecarily water which is good. They use quest labs so I'll take it there myself. They also took whole bunch of blood

justme
Long Time Contributor
Posts: 764
Joined: Mon Aug 19, 2013 3:31 pm

Re: Dont know how long i can put up with this !

Postby justme » Tue Feb 09, 2016 7:32 pm

Mach: I am so sorry you are having so many problems just trying to get a test to see if you have a recurrence or not. If you haven't taken an antibiotic in the last year, it's unlikely that you have a relapse or recurrence, but it would be good to know for sure. When I went to the hospital for a TIA one year after C. Diff with no antibiotics, they took a test with formed stool just so they could take off the gloves and plastic suits. It was negative. I understand you're frustration with the health care industry. It's beyond irritating. All that being said, I think you are probably having a particularly bad case of IBS or you could have picked up something else, but it would be good to know for sure. I'm glad you finally found a lab that would test you. Let us know what happens.
Aloha,
Anne

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: Dont know how long i can put up with this !

Postby beth22 » Wed Feb 10, 2016 2:40 am

You could also do a culture for other bacteria and a test for ova and parasites. Those can be any consistency.


Return to “Got a suggestion or complaint? Want to vent?”



Who is online

Users browsing this forum: No registered users and 18 guests