Getting closer to end of course, confusion, scared etc..

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
Regular User
Posts: 43
Joined: Mon Nov 14, 2016 8:47 pm

Getting closer to end of course, confusion, scared etc..

Postby christos » Wed Nov 16, 2016 8:50 pm

Hi :D,

I'd like to start by wishing everyone good health, and say a thank you to the administrators and contributors of this forum. I wanted to talk about being confused with my symptoms.

I'm a 27yr old Aussie male, BC, Canada. 5 years ago I quit smoking, and I swear that was the cause of (self-diagnosed) minor IBS like symptoms, we're talking random bouts of mild D after spicy or random food which never happened before, not agreeing with me causing issues which I just learned to avoid. I put this down to aging. After a round of amoxicillin combined with Metronidazole for a severe tooth infection, I experienced WD+B&M on day 6/7 of that course, then abruptly stopped on doctors advice. 2-3 days later had occurrences of B&M&D in the stool. I went to a doctor, who tested for CDIFF, which came back positive 1-2 days later, and was promptly put on an immediate course of Metro, 10 days, 500mg3xday. The doctors asked if I had a fever or pain, but I never really experienced those things on BOTH of the attacks, or the days between, I felt normal for the most part.

The road to recovery so far has been tough & weird, I'm a community case with only a handful of the symptoms. On the day of I was given Metro I had a bout of mild D during the day. On that night I took one pill, and had distinct WD again through that night. I experienced the nausea, sleep deprivation, fever, lethargy, lack of appetite on the 'first day' of my treatment. It took till Day 3 for the B to go away. Day 4 mucus 'started' to reduce, and it start to look semi normal. For this entire time, from the first attack, I've noticed that my ability to digest the food has been reduced, I eat a lot of carrots and I have been finding a lot of them in my stools when not mushy.

I first introduced chicken on Day 3 in the form of chicken soup with, ginger, carrot, potato, garlic. Up until then I was on BRAT + boiled carrots/potatoes, and a daily probiotic that includes acidGG. I appeared to adapt, but I've into some issues today. Yesterday, Day 5, I ate pan fried chicken with carrots, spinach, rice noodles. I also introduced SB (but accidentally took 3 pills). Today, when I woke up, I had white sections(possibly undigested chicken it really didn't look like M) but otherwise good stool, this afternoon I had what I can only describe as a micro relapse, M definitely returned, no B, 1/3 was semi WD that was yellow, undigested spinach and carrot. I keep a diary of this.

Up until this moment I felt like I was on a road to recovery, I was having 2-3 BM a day made me feel like things where moving towards normality, and the overall reduction in M was inspiring. I suspect my bowels are compromised by to much SB, so going to keep taking it but make sure i only take it twice, then remove if D persists.

My source of confusion, is that as I'm moving into the end of my course, I have more and more questions in my head.

Should I be expecting no more attacks of any form of D but not WD?
Do people have D during their treatment or immediately after, how do they know they're cured?
How the hell will I know if I'm 'cured'?
Am I "in the clear" after the first ~10 day window, I know that there is a moderate relapse window of 4 weeks, then 4 weeks minor window totaling ~8 weeks.

I'm without my family, who are a non-stop 12 hour flight over water away.
Will I be able to make that flight?
Can flying trigger a relapse due to dehydration and compromised immune system?
Can you fly while taking vanco/difficid if you aren't experiencing any major symptoms?

A major source of confusion is everyone talking about switching to vanco.
I know I'm having ups and downs but is this really an indicator that I need to move to vanco is it?
Half the symptoms I have cross over between CDIFF and metronidazole. I feel most are covered by the metro. Not to mention I didn't have major fever, or cramps until the metro, which made it worse.

For the most part, does "not tolerate" metro, as people put it on these forums, means they can't handle the D? I'm confused as to whether I'm "pushing through" symptoms that I shouldn't be putting up with.

I'm frustrated. I a healthy guy and this all happened so quickly. One moment I was taking ABx for a mouth infection, the next minute I feel like I'm incapable of thinking about anything other than my poop.

I believe, if I have no more than 3 stools per day for 3 days immediately after treatment (indicating D), that I should consider myself healed but tender. My doctor sent me on my way with my ABx and said nothing. My doctor didn't organise any follow up appointment. Most sources would tell me to just trust my doctor, but it was rushed and impersonal. Do see another doctor?

Moving forward, my plan from right now is to move back to soup, bananas, rice, boiled potato, apples(they seem to digest)applesauce, odd round of a bit of kefir, probiotics/SB and hope I return to a normal BM schedule. Small steps. But I'm scared about day 9/10 with all these lingering questions. It's close and I don't feel cured.

Do my symptoms sound FMT worthy? am I getting Ahead of myself? I think I'm middle of the road. On one hand I feel like it's the worst thing ever, but on the other I feel like I'm actually on track, and lucky even, others describe up to 15 WDBM / DAY for multiple days without going diagnosed, so I'm probably ok?

I'm sorry for all the questions. I've made this hard on myself I think. Thanks for listening.

*EDIT* I came back after I realized this was a bit of a rant, and paired down my anxiousness and voice text wall, believe it or not it was twice this length.
Last edited by christos on Thu Nov 17, 2016 12:04 am, edited 1 time in total.

amyc
Long Time Contributor
Posts: 2084
Joined: Thu Nov 10, 2011 8:15 am

Re: Getting closer to end of course, confusion, scared etc..

Postby amyc » Thu Nov 17, 2016 12:00 am

Metro knocked my symptoms down pretty quickly, but I didn't have a bad case before I started. I did relapse after metro but went to the doctor quickly, still tested positive, and went on vanco. The vanco cured me in 10 days. A 12 hour flight on vanco would be no problem, or wouldn't have been a problem for me. Hopefully the metro will do the trick, and I would avoid anything fried for a while.

Lisa33
Long Time Contributor
Posts: 2430
Joined: Mon Sep 29, 2014 1:45 pm

Re: Getting closer to end of course, confusion, scared etc..

Postby Lisa33 » Thu Nov 17, 2016 9:38 am

As long as you aren't having watery D more than 3 times per day with the urgency to go, you are most likely in recovery. It can take quite some time for things to heal, so loose stools are not uncommon. Some people still need to keep a limited diet as well, as they can't tolerate foods that they were able to eat before c-diff. I relapsed about two weeks later after metro. I would suggest to line up an appt with a GI doctor who is versed in c-diff, as a just in case anyway. The majority of people do recover after one or two rounds of meds, so hopefully you are in the majority. However, it's good to have a next step plan in place as a just in case. I would suggest vanco or dificid as the next step plan. But, hopefully you won't need it.

Wishing you continued improvement,
Lisa

Ril
Long Time Contributor
Posts: 1837
Joined: Sat Oct 27, 2012 2:45 pm

Re: Getting closer to end of course, confusion, scared etc..

Postby Ril » Fri Nov 18, 2016 9:26 am

I wouldn't be surprised if some of your "bad" symptoms are diet related. It is difficult for most people to digest high fiber and that would definitely include raw vegetable, so things like carrots would be terrible. Sticking with the BRAT diet or extending it to include broiled lean meats and fish, baked potatoes, maybe oatmeal, soups, etc, would probably serve you well.

When people talk about not tolerating metro they mean they are unable to bear the harsh side effects if can create for some. I was fortunate that I was ok with it and you seem to be also or you would not be asking that question.

You don't know for sure when you are in the clear, only when you are not. There are different opinions. I was cautiously optimistic at 1 month but thrilled at 3 months.

Best of luck,
Rita

christos
Regular User
Posts: 43
Joined: Mon Nov 14, 2016 8:47 pm

Re: Getting closer to end of course, confusion, scared etc..

Postby christos » Fri Nov 18, 2016 4:43 pm

Rita, Lisa, Amy,

It's great to hear your accounts, they help a lot. I'm feeling optimistic about metro, and definitely going to stay away from fried. I agree with the sentiment I should set up a next step plan, this is important for dealing with my anxiety. I am currently in a state of requiring to return to BRAT. It appears my course is also for 14 days, not 10....

It appears that my symptoms where a precursor for an attack. I had an attack last night of WDBM. I was told that any Bristol 7 and I should go to the ER, so I did just that. The physician I saw told me the following after I managed to ask her some of the questions I've asked here (things my GP failed to inform me).

- That I should expect "ups & downs" during treatment, this includes any forms of WD & B & M in any combination, of which I had 3 times, I would advise this is strictly a physician conversation and that any WD &or B &or M will need to probably be assessed by a physician/expert.
- Things that definitely do not fall within the window of "ups & downs" and warrant immediate ER visit, are a fever or nausea + vomiting, and the above if all three are present.
- My bloodwork 'looked good', my white blood cell count was at 5 versus >15 compared to other sufferers, again this is something that you should probably investigate.
- There is an approximate 14 day window past the end of treatment that D is normal for a single stool. WD can be normal, but any B&M is definately not. Only a physician can confirm though both will require a visit to your physician.
- If I fail my 14 day course, that I should expect to go to a physician and be put back on a 7 day course of metro, i.e. I explicitly told her "that it was unclear if should I be pushing through these symptoms", and she said FOR MY CASE, that I'm in the "pushing through" category, and to expect more metro again on next round if required. PLEASE READ LATER POSTS FOR MORE DETAILS AS THIS MAY BE MISLEADING
- She asked me what tests I got, and I was only able to tell her that I got 3 done. She said that my story was correct protocol. attack -> 3 days wait -> attack + test -> course on positive.
- In my case, that I can continue my usage of Probiotics/Florastor.
- FMT in BC, Canada has 'not been heard of' being administered to people in my age group, and is administered mostly to those who have a compromised immune system or compromised gut flora scenario, and I am supposedly not near that state.

I think this echoes a lot of sentiments on this board, and falls in line with the '3 day rule'. The feeling I got was that B&M during the 14 days post treatment, can only be determined by a physician, and should not be self diagnosed as CDIFF. I feel that moving forward I may have to modify my diet to BRAT + Potatoes + Soup, and that eating any other foods might put me at risk of irritating the bowel to a point where a diagnosis of CDIFF relapse may occur.

From what I understand in my research in this disease, THIS IS STRICTLY MY OWN PERSONAL BELIEF, is that a compromised bowel is more likely to fall susceptible to a relapse, my understanding is that the reasoning behind the 3 day & 14 day windows are that these are a critical time where your bowels are left to their own devices, and have to fight off the CDIFF themselves. It's either the spores germinate and you win, or the spores win, and when the spores win you revisit treatment. I find it hard to think that they develop ABx resistance. We recently received a report that CDIFF diagnosis is getting more accurate, and this implies to me that self diagnoses is dangerous and seeking a knowledgeable physician (such as one at an ER who has to deal with it regularly), is critical to your recovery.
Last edited by christos on Fri Nov 18, 2016 6:23 pm, edited 4 times in total.

roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: Getting closer to end of course, confusion, scared etc..

Postby roy » Fri Nov 18, 2016 5:32 pm

If you have watery D or B after 7 days of flagyl your Dr should consider its not working and change you to Vanco.
No ifs, no buts, that's what the guidelines the Dr's are supposed to follow tell them to do!
Nausea and vomiting are not an indicator but the above IS!
If you relapse another 7 days of flagyl is NOT the correct treatment!
It's either another full course of flagyl or most Dr's would change to Vanco.
D 5x a day is not recovery, it's c.diff symptoms.
D for 14 days after finishing meds might be recovery if it's limited to once or twice a day but if it's watery that indicated a relapse
Anything more than 2 a day and it's probably a relapse.
What's your age group got to do with FMT?
We have had 14 year olds (and younger) on here that needed FMT to save their life!
With average luck the first course of flagyl will do the job but if you do need additional treatment check what others on this site had and go back to your Dr well armed with info on what they SHOULD prescribe!

christos
Regular User
Posts: 43
Joined: Mon Nov 14, 2016 8:47 pm

Re: Getting closer to end of course, confusion, scared etc..

Postby christos » Fri Nov 18, 2016 6:42 pm

Thanks for your input Roy,

I have amended some of my statements to make them a little clearer for future readers. i.e. this is what I was *told* you must visit the physician no ifs no butts.

I totally follow about arming myself with information. After reviewing the coverage guidelines for vanco in my state it appears that it says exactly this 'Have failed to respond to 4-6 days of oral Metronidazole at doses of 500 mg three times a day'. Although I technically fall into the "mild" CDIFF category.

To clarify if unclear in my edit on previous post: I agree that 5D on a single Day is symptomatic, and should visit ER. Remember, I had 4BM for the day, 2 had WDBM style symptoms.

Moving forward, for my case I am going to do the following:

See out my course of flagyl and be optimistic as I am a "mild" case, but use caution.

If I see ANY bristol 7 during my 14 day period to visit ER immediately. (I intend to visit a different hospital this time).

If I do need to visit the ER at anytime between now and the following days, to arm myself with the knowledge of vanco protocol as per official and non official sources and tell them I'm worried about metro, esp. since I was on metro as the initial trigger.

Start arming myself with more FMT protocols for my state, and hope that I don't need to use them.
Last edited by christos on Fri Nov 18, 2016 6:50 pm, edited 1 time in total.

amyc
Long Time Contributor
Posts: 2084
Joined: Thu Nov 10, 2011 8:15 am

Re: Getting closer to end of course, confusion, scared etc..

Postby amyc » Fri Nov 18, 2016 6:49 pm

It's very odd that you still had the WD with B&M this far into metro treatment and weren't switched to vanco. If you have B that isn't caused by hemorrhoids still I would want to be switched to vanco. I'd call your primary care doctor to request that change.

roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: Getting closer to end of course, confusion, scared etc..

Postby roy » Fri Nov 18, 2016 7:19 pm

Agree with Amy
By day 7 on flagyl it should be 4 or less on the Bristol chart.
5 is borderline.
Any blood by day 7 indicates a change of meds.

christos
Regular User
Posts: 43
Joined: Mon Nov 14, 2016 8:47 pm

Re: Getting closer to end of course, confusion, scared etc..

Postby christos » Fri Nov 18, 2016 8:34 pm

I went to the medical centre I first got prescribed metronidazole. I saw a different doctor, and described exactly what this group told me, and then described what happened to me last night. I also told him I was experiencing anxiety etc because I still had a B&M today. He ended up prescribing me the vanco.

I'm a bit concerned that the B&M might be described as IBS, and I hope that I don't adopt resistance to vanco. I'm aware that the next step can be vanco taper.

I'm going to try stay calm.
Last edited by christos on Fri Nov 18, 2016 11:57 pm, edited 1 time in total.

amyc
Long Time Contributor
Posts: 2084
Joined: Thu Nov 10, 2011 8:15 am

Re: Getting closer to end of course, confusion, scared etc..

Postby amyc » Fri Nov 18, 2016 10:27 pm

IBS usually doesn't cause blood. I bet the switch to vanco will help you a lot! Definitely don't worry :) it doesn't do any good anyhow.

christos
Regular User
Posts: 43
Joined: Mon Nov 14, 2016 8:47 pm

Re: Getting closer to end of course, confusion, scared etc..

Postby christos » Sat Nov 19, 2016 12:01 am

Thanks Amy, I hope it helps.

That means by the time I get the vanco it will be the end of the eighth day tomorrow followed by ten days...

This infection really does suck...

roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: Getting closer to end of course, confusion, scared etc..

Postby roy » Sat Nov 19, 2016 6:01 am

When we refer to B&M we mean blood and mucous.
Do you mean the same?
If you have blood in your stool it should never be called IBS.

christos
Regular User
Posts: 43
Joined: Mon Nov 14, 2016 8:47 pm

Re: Getting closer to end of course, confusion, scared etc..

Postby christos » Sat Nov 19, 2016 8:40 pm

B&M = Blood and Mucus.
BM = Bowel Movement

Sorry for any confusion. I had B&M during a course of flagyl which indicates relapse and I didn't feel I was healing as fast as others have commented. Thanks for the tip about the blood. As I interpret things, I *may* have some slight Mucus post course. As I interpret things, I *may* have Bristol 1-6 post course observe the rule of 3. I will discuss this with my GP during the follow up. He actually asked me to make sure I come in at the end of my course. This is my current line of thinking, I will post back probably in ten days with the outcomes....

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

Re: Getting closer to end of course, confusion, scared etc..

Postby Bobbie » Sat Nov 19, 2016 11:09 pm

Wait and see if the vanco helps. Few become resistant to vanco so don't worry about it now.


Return to “Too Much Information”



Who is online

Users browsing this forum: No registered users and 11 guests