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.
Lisa33
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Re: Getting closer to end of course, confusion, scared etc..

Postby Lisa33 » Sun Nov 20, 2016 10:59 am

Just to add, mucus is not uncommon in early recovery or with IBS. However, blood is not common. Watery D with blood is a good indication that you are still dealing with c-diff. As Amy and the others said, vanco is a better course of treatment. Hope you feel better soon.

Lisa

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

Postby georgina » Mon Nov 21, 2016 1:23 am

Christos
Sorry you are still dealing with Cdiff . Metronidazole is a harsh drug and often fails to cure Cdiff , Vanco has a higher success rate and if you don't think that vanco is your way out you have Dificid.

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

Postby Bobbie » Mon Nov 21, 2016 2:42 pm

Know you are not now living there but are from AU. A world famous GI - Dr. Thomas Borody - heads the CDD in Sydney.

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

Postby christos » Wed Nov 23, 2016 10:37 pm

Thank you bobbie, georgina & Lisa.

Things have improved, currently it's day ~5 of vanco. The B left on day 2, which was a sigh of relief. The M has stuck around, but it seems to be my only symptom at the moment so fingers crossed it's nothing.

Hopefully I'll keep quiet until a few months from now. I'm pretty optimistic about this working as I feel 90% good. I even manged to get out and play squash this week, so it's definitely 100 times better than Metro for me.

As for your Dr. Thomas Borody comment Bobbie. I don't have anything to back this up, but I have a feeling he is REALLY expensive, and unfortunately I don't have Australian Private Insurance at the moment. I believe there is a post on a forum that a 100% private overseas person can pay up to 10,000 (total heresay for anyone reading this). The Australian government healthcare can cover some of the procedure I believe, but there are other aspects that I would have to pay out of pocket, I believe I may have read this is closer to the vicinity of 2,000, again, total heresay and I don't think I will be contacting him to perform any procedures.

If I relapse and end up seeing a GI, I'm not sure what options he will pose to me, but part of the reason I decided to come back and post today is that it seems that I may have previously misinterpreted some media reports about the state of FMT in Canada. I found the direct decision on the actual Health Canada website and it states that "FMT can be used in the treatment of patients with CDI not responsive to conventional therapies outside the auspices of an authorized clinical trial if the following conditions are met", then goes on to list a few sound, understandable conditions. To me, and after reading some other news stories, it appears this means FMT is back on the cards for Canadians, despite the ban in 2013.

Part of my anxiety up to this point has been that I was scared my only option will be homeFE, but now that I have this information my anxiety has dropped significantly. Hopefully this means that I won't have to fly to get an FMT treatment, and I won't have to rely on a homeFE. Obviously I haven't met with a GI yet, and I feel like I'm overly stressing as some people on here have it a lot worse and my heart bleeds for them. I will keep these thoughts parked for the moment.

Health Canada Ruling
http://www.hc-sc.gc.ca/dhp-mps/brgthera ... eng.php#s2

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

Postby christos » Thu Dec 08, 2016 2:54 am

Been trying to avoid posting and read other posts, but feeling a bit Ill, also a chance to check-in for anyone else that reads this thread I guess. TMI warning ahead.

For anyone wondering in future, the vanco cleared my major symptoms, but the M stayed. My BMs now are very similar to During Vanco but I have "good days".

Today is day 8 since my last Vanco. I've been hovering around 3BMs a day, but the M has stayed. 2 days ago I had a bad day. I made my way to the GP yesterday to have a chat about it, and he seemed to think I was OK. I asked him if Metamucil could help, and he said to try it along with some Imodium and to drop dairy. I took the Metamucil but not the Imodium. I only had 2 BMs and thought I was feeling much better. I've dropped my daily portion of spring onion, tofu and Kefir.

Tonight, I had a Bristol 3/4 followed by a Bristol 5 30 minutes later. There was some definite discomfort and almost pain in the abdomen which has stopped now. I am under the impression the fact the pain left means it's closet to PI-IBS than relapse.

I guess my issue and why I'm posting is because I'm confused, I don't 100% feel like it's a relapse, but I don't know what I'm eating that's setting me off. If I try to focus on the 3 day rule over the past days I feel like I'm just all over the place so I'm OK and not having Bristol 7 or B, no fever, no loss of appetite...

My daily diet is:
Saurkraut
Eggs
Toast
Bananas
Always boiled Potatoes
Store bought bouillon
Rice
Miso (usually with Tofu and spring onion)
Kefir (but dropped it just now..)
1-2 BioK Probiotic
2 Florastor
Sometimes:
Small amounts of avacado
Random times boiled carrot

I'm scared to drop saurkraut as it's the only meal of the day I really enjoy, and my last natural probiotic. I wanted to try introduce steel cut oats but I don't know if that's OK?

My friends and partner seem to think I'm over reacting, and I'm trying to agree with them, but I'm just so tired of thinking I'm OK one moment then not the next day like a yo-yo. I guess I want confirmation of my rationale and to hear that I'm not going crazy.... it just sucks that PI-IBS and CDIFF are so similar...

This raises a question, if my M stays around and my frequency is all over the place, I don't know whether I should test with my current GPs, and risk a positive test and possible unnessicary ABx,
Or request a referral to a GI, or even if I bother going to the GP at all.

Thanks for listening everyone, this forum is priceless for me at the moment...

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

Postby georgina » Thu Dec 08, 2016 8:57 am

You are taking alot of probiotics : florastor , biok,kefir , sauerkraut. Probiotics can also give upset gut , so my guess is that they are causing your symptoms. Try to reduce your probiotic for a few days and stick to one or two and see if you feel better. By the way , i love my sauerkraut too (i make my own sauerkraut at home for years) but if i eat just a small amount it will put me on the toilet in less then 15 minutes.

Lisa33
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Re: Getting closer to end of course, confusion, scared etc..

Postby Lisa33 » Thu Dec 08, 2016 9:46 am

I agree with Georgina and see if lowering the probiotic intake, helps at all. What you describe though is really typical of early recovery. BM's will be all over the place. There is no consistency. One day you will feel like you may be relapsing, and the next day will be ok. If the stools are loose, that is also not uncommon. It's the frequent watery D that is reason for alarm. For me, mornings were the worse. For me, diet really wasn't a trigger for my bad days. I literally could eat the same bland foods, but one day be fine and the next would be bad. As time passed by, the good days started to outnumber the bad days. It actually took me 8 months to have only 1 BM per day. I'm two years out, and still have weird BMs at times. I really never went back to how things were pre-c diff. So, hang in there. I know it's very confusing and you never know what each day is going to bring. But as long as there is some sort of see-sawing, with good days, you are most likely in recovery. But if you start to experience worse D, then that would be a concern.

Lisa

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

Postby amyc » Thu Dec 08, 2016 11:56 am

Sauerkraut would put me on the toilet, and I can't tolerate florastor at all. Dairy caused me problems after C diff, so hopefully dropping the kefir will help. Pepto bismol is great for IBS and doesn't carry the risks of Imodium of masking or worsening an infection or relapse.

beth22
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Re: Getting closer to end of course, confusion, scared etc..

Postby beth22 » Fri Dec 09, 2016 2:57 am

I don't tolerate sauerkraut either nor Florastor. I agree to decrease the probiotics and maybe that will help. You could also try holding the sauerkraut for a day or two.

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

Postby christos » Sat Dec 10, 2016 2:14 am

Ok, so now I feel kind of silly, but it might have been the saurkraut.....

Daily pain is reduced, and frequency average has dropped for the moment. I still have bouts of some mild discomfort and weird pains, but I'm ignoring them for the most part as it's not like when I was having attacks.

Saurkraut also has looooots of salt, something I completely blanked on. I've eliminated all salt already so the salt content in the saurkraut was probably a step backwards in that regard ><

Hoping that it did me more good than bad, who knows, hopefully I carpet bombed the cdiff to hell!

I know there's still going to be bad days, and times might get tough, but I'm staying strong, still exercising and still trying to do social things within' reason. Good to know I'm not the only one that enjoys saurkraut, thanks for the sanity check Lisa, I will try keep my head up. Thanks amy, I was worried about the immodium for exactly that reason. I'll go grab some pepto bismol as an emergency backup. Thanks beth, you're right on the money as well.

Good news for me is that I seem to tolerate oats and more avocado, so I have some more variety for the moment and now I have a bit more confidence to introduce other boiled vegetables and things.

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

Postby amyc » Sat Dec 10, 2016 3:29 am

Don't feel silly :). Diet is such a variable thing, so you will have to experiment with foods to see what works for you. Avocados and oats are tasty and very nutritious, so it's great that they work for you. I was able to eat goat and sheep milk cheese before I could handle cow cheese, so if you get a dairy craving try some Manchego or goat cheese. I'm still mildly intolerant to large quantities of ice cream :( but do fine if I enjoy it in moderation.

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

Postby christos » Mon Dec 12, 2016 1:05 am

There's always sorbet.... except my self restraint when it comes to sorbet is pretty low hahaha.

Not having such a great day today, fearing a relapse so I'm going to pop into the doctors tomorrow morning. It's approximately day 14 since my treatment.

My average has been 2-3 BMs, but today I had 7, 2 of which was Bristol 6. It's just so confusing, I can't even tell if there's much M when I get B6 - but ever since Metamucil it's pretty much reduced to it's lowest levels. I took some pepto, had a BM 45 minutes later, then took some more just now. My main problem is that it's worse than my last "bad day", that was almost 5-6 days ago though, man time flies.

I'm hoping it's just what I ate yesterday that has given me an upset stomach, I introduced capsicum, cumin spice and ground coriander. Capsicum didn't give me any issues previously, maybe I'm over doing it with re-introduction.

Am I still falling in the 3 day rule? This is pretty much the only symptoms though, I don't believe I have a fever, the B isn't back, and the M is fluctuating. Really hoping the lack of B7 means I'm ok, really hoping for a PI-IBS diagnosis so I can move on mentally from C-DIFF. Since my last day of treatment I haven't had a single bout of B7 or B. This is all just so confusing and I feel like I have no other doctor involved it's just me and this message board. (thank you all for your contributions...).

Ended up having plain rice for dinner. Going to drop the miso/tofu tommorow (soy?). Might do oats with banana for breakfast but reduce portion size, and drop the avocado for lunch, maybe just stick to toast and eggs.

How the hell is the GP even going to diagnose this tomorrow I don't even know. I'm going to assume he will ask me to wait a few days to see if it clears and maybe re-test me. Will keep you posted. I hope I'm over-reacting.
Last edited by christos on Mon Dec 12, 2016 2:13 am, edited 2 times in total.

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

Postby georgina » Mon Dec 12, 2016 2:01 am

I'm still thinking that you take too much probiotics and too many supplements and that is causing your symptoms.Try to cut back on some of them for awhile.

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

Postby christos » Mon Dec 12, 2016 2:06 am

I'm taking one Biok+ in the mornings and 2 florastor and that's it. Should I cut those out as well? Maybe I drop down to 1 florastor a day, but I'll just cut it out all together tomorrow and see what happens. Are the oats a probiotic?

I'm obviously just a bit scared that if a bad day swings by and I'm not on probiotics that I will increase risk of relapse.

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

Postby georgina » Mon Dec 12, 2016 3:53 am

If i were you i would stick to just one brand of probiotics , cut back on the miso and soy , kefir (for a day or two) and the fiber supplement witch can also give you lots of gas and frequency. You also added new supplements so be carefull and maybe introduce the supplements one at the time to see how your system handle them.


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