Here I am again..

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Zapper
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Here I am again..

Postby Zapper » Sun Oct 08, 2017 12:40 am

Here I am again.. on the venting page.
No bad food decisions. Still on my bland diet 4 months post FMT. Tonight I have been violently ill for about 2 hours now. Unable to leave the restroom at all. I am also having waves of abd/back pain that leaves me holding my breath to get thru it. There is no way I can figure out what triggered this as I have barely eaten today/no stress/ slept in etc etc.
I have already taken my max levsin for the day. Didn’t seem to help much at all. I am praying to God this is a stomach bug (hopefully not norovirus again).

All I know right now is that I am very tired. I feel weak. I am scared to leave the bathroom. Feeling a little hopeless tonight I guess. How do you guys get through this??? Everyone seems so positive and upbeat for the most part. How do you conquer the pain/fear/weakness combo on a daily basis?

I guess I just need someone to talk to.

NanciT
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Re: Here I am again..

Postby NanciT » Sun Oct 08, 2017 1:52 am

I am sorry you are having a rough time...we have ALL had those days and they are very hard to get through. You may have a flu bug.

I found that things that never bothered me before, do now. Sometimes it makes no sense and I end up with no answer. As you know, if symptoms continue call the doctor. But I am hoping it's an "off" few days and things will improve.

The difficult days are......difficult! That is why we are here to help each other through. I had many dark days with this and can't relate it to anything else I have been though in my life. CDIFF and sometimes the recovery of CDIFF can wreak havoc with your emotions.

When you are feeling sick as you have been the last two days, its hard now to worry. But more than likely this will pass.

The diet is different for everyone. It has taken me a very long time but little by little I am getting there.

Hoping things improve soon!

NanciT

Machaon
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Re: Here I am again..

Postby Machaon » Sun Oct 08, 2017 9:37 am

Hi Zapper.

I am so sorry that you are suffering as badly as you are! Hopefully, one day soon, you will be able to look back at these awful times and breathe a sigh of relief!

I relapsed three times prior to my taking 10 days of dificid, 200mg, twice per day. During that time I also took five Jarrow Formulas Saccharomyces Boulardii + MOS, 5 Billion Cells Per Capsule. That is 25 billion cells of Saccharomyces Boulardii, or 1.25 grams. It cost me 17 cents per pill. I am still taking two of them each day, 26 days after taking the dificid and if my condition starts to worsen instead of improve, I will take more of them.

Have you tried Saccharomyces Boulardii? And, if so, how much are you taking?

According to the National Institutes of Health (NIH) Saccharomyces Boulardii is effective against acute and chronic gastrointestinal diseases. In fact, it has been shown to be effective against C-diff.

Here is the link to the NIH article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3296087/

I hope that your day has gotten better and you have experienced a little relief!

Regards, Bob
Male 74. S Florida. Retired systems analyst and programmer

1987 had CHF, perm afib, sensitive asthma, autoimmune

Ex C-diff (since 9/12/17) after 10 days dificid

Diet:6 low cal meals <1500 cals, 2 eggs a day, 4 large salads, cereal, yogurt, cheese

Lid49
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Re: Here I am again..

Postby Lid49 » Sun Oct 08, 2017 3:17 pm

Zapper
I know how you feel believe me, the worry and pain and how will be tomorrow, But please do a cup of ginger tee or tumernic, please do not panic. You are young you made it and you done the FMT. I bilive is still IBS. The rule of 3 days remember? Please lett me know how you fell.
Lidia.

Zapper
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Joined: Thu Feb 11, 2016 10:28 am

Re: Here I am again..

Postby Zapper » Sun Oct 08, 2017 4:39 pm

Yes I am ok. The D stopped around 2am (thank God). I got to sleep for 3 hours before my son got up at 5am... I think he is teething or something. He’s waking at abnormally early hours and inconsolable until he takes a nap about 1-2 hours later.
Anyway I am exhausted to say the least. I only ate 1 piece of toast today and it has been ok. No pains/bms/etc.
dumbfounded on why I had such a HUGE reaction last night. I don’t think I will ever figure out what happened this time.
I do take probiotics. I have only been able to tolerate Nexabiotic all others (vsl3, florastor, etc have all caused massive d).
My GI isn’t available until November for another follow up. Looks like I’ll be waiting for a while for more answers.

beth22
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Re: Here I am again..

Postby beth22 » Mon Oct 09, 2017 1:54 am

Bob - You are lucky you can tolerate high doses of the Sacc. boulardii. I can't even take a normal dose without horrible gas, loose bms and even a rash. I wish I could take it. So do my doctors.

Lidia, take what agrees with you. I had to try different probiotics before I found one that agreed with me (VSL#3). I tried Align, Culturelle, Florastor, and others. Stick to what works for you. The same for you, Bob. If those high doses work, then take them as long as your doctors say it is ok and it doesn't worsen any of your other conditions.

MKW
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Re: Here I am again..

Postby MKW » Mon Oct 09, 2017 9:18 am

Zapper, I'm sorry to hear you had such a bad episode but it sounds like it has passed. I have been unable to determine what causes my "ibs attacks". At first I attributed them to food intolerances but later concluded I am uncertain of the causes. I will have normal BM's and feel fine for days and then have symptoms occurs suddenly. Just sudden onset of cramping spasming etc. sometimes it will last a half day, sometimes up to three days. ... it is starting to wear on me psychologically. My doctor put me on klonopin a few weeks ago. I guess it helps me cope or really just be spaced out and not care. I think it has decreased my ibs symptoms some; it is a central nervous system depressant. I just want to be normal again. I feel like my spiritual stamina is just shot. Every time I think I'm improving, I find out I'm not. having a messed up GI system is the most psychologically difficult ordeal I have ever been through. You have been amazingly strong through what you have been through.

Machaon
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Posts: 208
Joined: Sat May 20, 2017 11:50 am

Re: Here I am again..

Postby Machaon » Mon Oct 09, 2017 9:29 am

beth22/Zapper: I first started with one Saccharomyces boulardii per day. When I did not experience any side effects I moved to two, then I moved to FIVE.

Saccharomyces boulardii, (1 g/day = 20 billion) had been shown to greatly reduce recurrence of C-diff, when combined with 500g of vancomycin, four times per day. So... I figured, if Saccharomyces boulardii (20 billion) combined with Vancomycin could stop C-diff; then Saccharomyces boulardii (20 billion) combined with DIFICID would have much better chances at ending my C-diff! I miscalculated and took five (25 billion) Saccharomyces boulardii, when I should have taken only four (20 billion).

I am now 27 days after taking 10 days of dificid combined with 25 billion Saccharomyces boulardii and doing great! I am a believer!

For those who can take Saccharomyces boulardii, here is a quote from an October 2000 Oxford University Press article entitled: ===> "The Search for a Better Treatment for Recurrent Clostridium difficile Disease: Use of High-Dose Vancomycin Combined with Saccharomyces boulardii" <===

"A significant decrease in recurrences was observed only in patients treated with high-dose vancomycin (2 g/day) and S. boulardii (1 g/day) (16.7%), compared with those who received high-dose vancomycin and placebo (50%; P = .05)."

Link: https://academic.oup.com/cid/article/31 ... -Recurrent
Male 74. S Florida. Retired systems analyst and programmer

1987 had CHF, perm afib, sensitive asthma, autoimmune

Ex C-diff (since 9/12/17) after 10 days dificid

Diet:6 low cal meals <1500 cals, 2 eggs a day, 4 large salads, cereal, yogurt, cheese

beth22
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Posts: 9423
Joined: Tue Apr 07, 2009 2:23 pm

Re: Here I am again..

Postby beth22 » Mon Oct 09, 2017 12:05 pm

Yes, most GIs recommend the Sacc. Boulardii when treating c diff too. It has helped many.

georgina
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Re: Here I am again..

Postby georgina » Tue Oct 10, 2017 3:34 am

Zapper
Hope you are feeling better. Try not to panic, it may very well be a flare up of IBS . Yesterday evening I had bit of creamed spinach for dinner and today I woke up with more frequency and lots of gas and gurgling , had to take Imodium to be able to stay at work without running to the bathroom.

Machaon
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Joined: Sat May 20, 2017 11:50 am

Re: Here I am again..

Postby Machaon » Tue Oct 10, 2017 11:02 am

beth22: My interest in Saccharomyces boulardii came from the suggestions from this support group. So, I bought some and took one per day. I had relapsed three times. I was prescribed dificid. I did not want dificid to fail. When I read that one gram (20 billion) Saccharomyces boulardii was effective against C-diff in "human" trials, I got excited. If I bumped my dose up to 1 gram, my 10 days of dificid has a better chance of working! So... it wasn't that I took Saccharomyces boulardii, it was that I took one gram of Saccharomyces boulardii! It was the amount that might be crucial towards success.

I am now 28 days past dificid, but who is counting?!

Regards, Bob
Male 74. S Florida. Retired systems analyst and programmer

1987 had CHF, perm afib, sensitive asthma, autoimmune

Ex C-diff (since 9/12/17) after 10 days dificid

Diet:6 low cal meals <1500 cals, 2 eggs a day, 4 large salads, cereal, yogurt, cheese

Zapper
Regular Contributor
Posts: 221
Joined: Thu Feb 11, 2016 10:28 am

Re: Here I am again..

Postby Zapper » Tue Oct 10, 2017 11:20 am

The probiotic I take has Saccharomyces boulardii in it. I don't know the amounts however.

Georgina, I pray I can get to where you are with being able to eat spinach... or any vegetable. At this point even toast and chicken make me have IBS and sometimes as bad as having fecal incontinence.

This is a hard recovery. My GI and ID both made it seem like the FMT would be my cure.. no instruction on post infectious issues whatsoever. I have an appt with my GI on 10/25... the soonest they could see me without an emergency. I wouldn't call this an emergency since it is an ongoing/chronic condition now. I know my GI wants to take me off levsin, but it really has improved my qualify of life enough for me to notice. Still can't expand my diet.. but at least I am not in pain all day. I did end up losing 5lbs these past 2 weeks. Not sure if its from the levsin or not.

I will keep everyone updated as this goes along...
Currently I am dealing with A LOT of pain/stress induced IBS. I'm sure everyone has heard about the Orange County fires in CA.. I was evacuated with my family and still do not know if our home is still there. Prayers all around welcome!

Machaon
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Posts: 208
Joined: Sat May 20, 2017 11:50 am

Re: Here I am again..

Postby Machaon » Tue Oct 10, 2017 11:55 am

Zapper, I hope that you and your family and your home survives the fires! Were you able to take anything with you? Pets?

Bob
Male 74. S Florida. Retired systems analyst and programmer

1987 had CHF, perm afib, sensitive asthma, autoimmune

Ex C-diff (since 9/12/17) after 10 days dificid

Diet:6 low cal meals <1500 cals, 2 eggs a day, 4 large salads, cereal, yogurt, cheese

beth22
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Posts: 9423
Joined: Tue Apr 07, 2009 2:23 pm

Re: Here I am again..

Postby beth22 » Tue Oct 10, 2017 1:06 pm

Zapper - Ask your Gi to test you for SIBO if you have not already been tested. I had what you are describing after my first FMT colonoscopy and I tested extremely high on SIBO breath test. I had to take Xifaxan for it and was much better afterwards with the food intolerances and symptoms. In any case, it wouldn't be a bad idea to rule it out.

A friend of mine also was evacuated. Hopefully, your house is okay, but at least you are out and don't have to breath the heavy smoke and be in harm's way.

Zapper
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Posts: 221
Joined: Thu Feb 11, 2016 10:28 am

Re: Here I am again..

Postby Zapper » Tue Oct 10, 2017 4:09 pm

Good news was that our home was spared. Some others a few blocks away not so lucky. We aren't allowed to return, but yes we have all animals/my son out. Everything can be replaced.. we only took all the baby's things and the animal necessities. I am at work (hospital) and my hubby is taking care of everything else.
Thank you for the concern. I hope everyone's friends and families are OK and able to return home soon!


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