Damned if I do, damned if I don't?

Since c-diff is a disease of the "lower half", so to speak, we find that many of our members cannot refrain from discussing what comes out the bottom end. If you must do it, please do it here.
christos
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Damned if I do, damned if I don't?

Postby christos » Wed Feb 01, 2017 3:28 am

Hey Folks.

Wishing everyone the best in health, hope we all had a good New Years, Christmas & Lunar New Year! :)

Previously in December I posted about testing positive for CDIFF at 2 weeks post vanco treatment. The plan was to wait it out, and resubmit a test at the end of January, which is now! The reason for my posting, is that now that it's crunch time, I'm getting the heebie-jeebies again.

I been trying to wait out the test results before posting, but something the doctor said has been driving me nuts. When I visited him, he asked me if my stool returned to normal, and I said no. He immediately said that we're going to test, if I'm positive retreat and if I'm negative assume it's PI-IBS.

I feel like I've read as much as my head can absorb, and I still feel like there's absolutely no way for me to know whether or not retreating is the right course of action. (and I know no one on here can tell me). Something that scared/confused me is that I developed abdominal cramping and pains AFTER treatment.

Do I have any other testing options open to me, or any studies I can use to discuss getting a more accurate diagnosis?

Something that has been bugging me is that I don't have Bristol 7 at the moment, and my doctors seem to think that even though that's the case that my other symptoms are still indicators to retreat. One doctors also said "we need to get rid of all of it if it's still there".

Is there anyone that can help me find diagnosis information (specifically Canadian) that indicate the correct course of action for recurrent CDI Diagnosis & treatment? I've checked the info section and what I don't understand when I read the studies is that it almost reads like most people have a singular "recurrence" episode which prompts them to retreat, which I can't relate to at all, I almost feel like I never fully resolved my condition after my first treatment but my body has been able to keep me stable (hence the doctor wanting to 'get rid of it all'.)

Some of my symptoms are, abdominal pains, mild and usually associated with fibre consumption. Bristol 3/4 - 1-2 a day. The reason the doctor wants to retreat is that my stool is 8/10 times covered in light mucus coating, and despite Bristol 4 there is sometimes looseness and definate under digestion - the doctor didn't seem satisfied that I'm "not back to normal" and as i mentioned before this is causing my confusion.

If you asked me if I'm getting better, I'm still not sure, sometimes i feel like I've just leveled out, sometimes I feel like I'm all good, sometimes I feel in the gutter.Which I thought was normal. Sometimes I eat whatever I want because I'm just so over it and I don't really care about what's in the toilet, my only concern is causing long term serious damage which can happen with or without treatment at the moment in my eyes. I'm better than my worst days which makes me feel OK, but at this moment I'm getting irrationally worried.

Fingers crossed for a negative test and short lived PI-IBS stint. Will update my post as soon as I get results and treatment plan.

Musings
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Re: Damned if I do, damned if I don't?

Postby Musings » Wed Feb 01, 2017 9:59 am

This is not a Canadian guideline but one of the better, and more expansive, scholarly articles I've found regarding the treatment of c. diff - http://gi.org/guideline/diagnosis-and-m ... d-colitis/

In my opinion, generally well formed stools 1-2 times a day does not warrant treatment. The treatment you already went through disrupted the bacterial/yeast balance in your GI so it is not surprising that you may have some level of digestion issues until a proper balance can be achieved again which can take weeks, months, or even more. Mucus is also not uncommon and is often associated with IBS. Have been taken fiber supplements myself and they can cause feelings of bloating, gassiness, etc. so if your only pain is associated with fiber, I again would not be concerned.

Is the doctor you are working with a GI or ID doctor? If not, would consider scheduling an appointment with a GI who may have more experience with c. diff and its after effects than a primary care doctor.

~Lauren

KLor
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Re: Damned if I do, damned if I don't?

Postby KLor » Wed Feb 01, 2017 3:41 pm

Remember that you are your best health advocate, and the final say in what you will or will not do--if your doctor is pushing treatment but you don't trust that plan, you do not have to follow it. The same goes if a doc refuses to treat--find someone who's opinion you respect more! If your body is holding steady right now (as it would appear from your symptoms), it might be wise to seek out a second opinion.

In terms of long-term intestinal damage from not treating whatever bugs could be leftover, don't worry too much. If your body was undergoing serious damage, it would not be subtle about it. Certainly look out for WD, blood, intense (think 9 mos pregnant) bloating, as these can be serious signs. But the pains, mucus, under-digestion that you're having now sound like what my doctor calls PI-IBS. Even if it is upset caused by some lingering bacteria, it doesn't sound like enough to cause significant harm, and it may well be something your body can kick out on its own.

Be patient with your healing--it is a long and rocky road, but that does not mean you're teetering on relapse (a hard lesson I still have to fake until I make sometimes). Wishing you continued recovery and some clarity in the coming days. Take care!

Lisa33
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Re: Damned if I do, damned if I don't?

Postby Lisa33 » Wed Feb 01, 2017 3:49 pm

This is definitely a decision that you have to make with your doctor. But honestly in my opinion, it doesn't sound like you need to treat. It does sound like IBS to me. Since you are only going 1-2 times per day and it's not watery D, it doesn't sound like a relapse. Mucus can happen with IBS as well.

roy
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Re: Damned if I do, damned if I don't?

Postby roy » Wed Feb 01, 2017 4:13 pm

http://www.phac-aspc.gc.ca/nois-sinp/gu ... eng.php#a5

Pay particular attention to section 5



This is another good document

http://m.cmaj.ca/content/171/1/51.full

christos
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Re: Damned if I do, damned if I don't?

Postby christos » Thu Feb 02, 2017 3:52 am

Thank you all, you're words are giving me strength to speak my mind to my doctor and tell him my valid genuine concerns about re-treating. I think I need to speak my mind and tell my doctor that I want some form of second opinion or further explanation at a minimum. All I can think about it what that day was like that sent me to the docs in the first place and it hasn't been like that ever again. I'd be even willing to give it a few more months then retreat later if I don't get better. I feel like the 2 months hasn't been long enough to really know.

Thanks for the Canadian specific content Roy, I will bring it up when I see the doctor. I can probably back this up with some other content I've found in the other parts of the website.

I have a feeling the doctors are reluctant to refer to specialists here in Vancouver city. I've noticed that even calling GI/IDs without a referral, even if they accept, may take up to 3 months.... I will talk with my GP directly asking why I haven't even been considered as a referral to either type of specialist.

Will post soon I guess.

Ril
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Re: Damned if I do, damned if I don't?

Postby Ril » Thu Feb 02, 2017 9:22 am

Just a quick word- it is common to develop food intolerances after c diff and at 4+ years out I still cannot tolerate all but the smallest amounts of fiber, especially raw vegetables. Having salad, especially for a meal which I love, will send me to the bathroom for days. According to my GI, studies at the time I had c diff, were finding PI IBS and food intolerances could last up to 8 yrs ( if I remember correctly) or possibly beyond, and no, I was no one who had an especially long battle before being cured.
So definitely watch your diet in addition to fighting for your care and using the articles as ammunition. Not feeling well nor having " normal" stools during recovery is par for the course. I hope you can win this one. It's important.

Bobbie
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Re: Damned if I do, damned if I don't?

Postby Bobbie » Fri Feb 03, 2017 1:59 am

Do what you "feel" is right.You live with your body.

christos
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Re: Damned if I do, damned if I don't?

Postby christos » Mon Feb 06, 2017 2:44 pm

Well, all that fretting and mental preparation, and just like last time the GP pulls a sidewinder on me and proves to be competent despite first impressions.

He opened the conversation with "I was reading as much about cdiff last night as possible to prepare for today and my suspicions where correct" - his personal body language changed, as if he was preparing to have a tough discussion with me, and he told me he didn't want to treat for reason x,y,z. I shut him down and just said "Yep I know" - he breathed a sigh of relief and was taken aback by my demeanor. He thanked me for being so understanding as I went on my way out. Maybe a lot of his patients don't do any research and try to get involved in their treatment, that and these people are really overworked sometimes.

I tested positive again. Just like last 2 month period he wants to wait and see. He's asked me to come back late March early April. In the mean time, to be mindful of all red flags - distension, blood, excessive mucus etc. Stop alcohol 100% even for special events like Christmas and be mindful about the diet. He even said that he was thinking about Rifaximin (something I was about to ask him about) - but "didn't want to pump my body full of chemicals while it's trying to heal". This seems to be in line with everything I've read up on.

It's a shame I'm not testing negative for the full piece of mind, but I will just have to consider it a "long slog" and I think I'm ok with that now that I have a doctor that agrees.

Thanks again to everyone and your advice - I know I should trust my doctors more, but they withhold so much information to start that it makes it so hard to know what they're thinking or planning on doing. It also helps that I got assigned the Director of the GP's office recently, so my worrying may have been warranted if that didn't happen.

beth22
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Re: Damned if I do, damned if I don't?

Postby beth22 » Mon Feb 06, 2017 7:48 pm

I have been testing positive on PCR since last June, but do not have D and have not treated. The lab followed up with an EIA test that was negative. The PCR is very sensitive and will pick up c diff that does not need treating as well. Go by your symptoms as the doctor told you and watch for the red flags. Glad to hear you are doing ok though.

RyanW
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Re: Damned if I do, damned if I don't?

Postby RyanW » Fri Feb 10, 2017 12:54 am

I am somewhat in the same boat as far as what to do now. I went through a 10 day Flagyl dosage and everything seemed to be ok. I was going 1-2 times a day with no more Blood or Mucus. Now i'm at 7 days after my last pill and i have had bloating/cramps for the last 2 days with a little blood/mucus both. Still on going a couple of times a day with no watery diarrhea. My doctor did prescribe me another round of Flagyl without a positive test, but i'm just unsure on whether to take it or not. Have any of you guys experienced B&M (with no D) after a round of meds and it NOT be a relapse? Could it be my stomach not back to normal?

Bobbie
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Re: Damned if I do, damned if I don't?

Postby Bobbie » Fri Feb 10, 2017 1:24 am

We call c diff the WWW disease - watch, wait, and worry. Youneill have to "feel" your way through it.

See CDI - threee day rule and CDI - IBS. Many, including me, develop IBS after a bout of c diff,. The symptoms are similar and, usually, resolve themselves.

Keep us posted.

beth22
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Re: Damned if I do, damned if I don't?

Postby beth22 » Fri Feb 10, 2017 2:09 am

Unless you have hemorrhoids, I would be wary of the B. M can be just inflammation, but B is more concerning. If it does not stop, I would ask for a test for sure. Personally, I would not want to take Flagyl again unless I tested positive, but I know others do take meds for a suspected relapse. Talk to your doctor and voice your concerns.

roy
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Re: Damned if I do, damned if I don't?

Postby roy » Fri Feb 10, 2017 6:49 am

In your other post you mention that your Dr prescribed Flagyl 500mg twice a day.
Normaly a c.diff course is 3 times a day.
Possibly the course of flagyl was too low.
Is the new prescription for 3 times a day?

Your Drs correct that you don't test and that you treat on symptoms.
The problem is your current symptoms are not classic c.diff.
Blood is concerning so might need attention but without D it might just be hems.
If it's minor I think my reaction would be to hold off on treating for a while.
Even flagyl can cause c.diff.

RyanW
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Re: Damned if I do, damned if I don't?

Postby RyanW » Fri Feb 10, 2017 9:01 am

Thats kinda what my close friend (which is a nurse prac) said. She said I sounded like an odd case. By the way, the new scrip is for 3x daily. It is weird that i havent had any D and i haven't went more than 3X in a day since these few symptoms have started. Mostly smaller stool and the B&M in there every once in a while. I will prob hold off on starting the new round unless it gets worse. i will continue to stay away from alcohol and keep my diet bland. I have been bloated quite a bit and very gassy at the same time. The probiotic I am taking is a probiotic/fiber pill in one. That could be the reason for that?


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