5 Month in

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Pizza13
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Joined: Wed Nov 21, 2018 7:18 pm

5 Month in

Postby Pizza13 » Wed Nov 21, 2018 7:29 pm

Hey all,

(Sorry for the edit but I’m not sure I followed all the rules)
I’m new to this site but I was just curious, what happens when c-diff just won’t go away? I’m a 24 year old female.

In June 2018 I was hospitalized with sepsis from a stomach infection, treating it gave me c-diff. I’ve done 14 days of vanco, 14 more days of vanco, a round of dificid, a 4 day hospital visit, 42 days of vanco, more vanco ( I know crazy ) and now I’ve been taking Enteregam. Most days I’m ok. Some days are worse than others, but Mainly just asymtomatic, but if I miss a does I feel like I’m going to die. Is this what life is going to be like forever?
Does it ever go away? I’m always bloated which I can deal with but I don’t know... I guess I was just hoping to hear this won’t last forever...

NanciT
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Joined: Thu Sep 18, 2014 12:01 pm

Re: 5 Month in

Postby NanciT » Wed Nov 21, 2018 7:59 pm

Hello and welcome to the site Please read the first thread for all new posters

sorry you had to find us . It sounds like you have had several rounds of treatment and you mention you are "asymptomatic" most the time. This is a good sign, if D is gone you are probably in recovery which can take awhile. When I had relapses, it was the exact symptoms I had when first diagnosed. After the 5th relapse, I went on a long taper of DIficid, even after that I did not feel like I was well, but the D was gone. I had Post IBS which is what you may be talking about.
Have you gone over your symptoms with your GI? They need to be the ones to diagnose this and there are medications that can help. There are several on the site who have taken Enteregam and feel it has helped.
Things will improve, you need to know where you are at and if the recovery process is taking longer which can happen after several relapses.

Go easy on the diet, on bad days I would go right back to bland which always helped me.

Hope things improve soon!
NanciT

Pizza13
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Joined: Wed Nov 21, 2018 7:18 pm

Re: 5 Month in

Postby Pizza13 » Wed Nov 21, 2018 8:14 pm

Hey NanciT,

Thank you so much for responding! My GI won’t prescribe me dificid which is beyond infuriating, it worked better than Vanco but he just refuses to prescribe it again. As long as i’m taking my Enteregam i’m fine but once I stop I’m back to having horrible D again. While on it it’s either mushy formed fluffy movents or almost normal. I’ve called my GI probably once every other week & have had so many appointments...
I haven’t relapsed... it just never went away according to my GI DR. He wants me to do a decal transplant but I’ve heard things about it that kind of scare me. He’s concerned that I’m 24 years old and for some reason can’t beat this. I’ve been told to Take EnteraGam, Florastor twice a day, & eat whatever I can that’s fermented. I follow all the instructions but it just feels like it’ll never go away.
I’ll go search for the EnteraGam posts! Thank you so much!

Do you mind me asking what kind of bland diets you’re talking about? Is there anything specifically you avoid? That’s something the GI left out of our conversations & honestly my diet ranges from typical Italian & Puerto Rican diet to junk food.

georgina
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Re: 5 Month in

Postby georgina » Thu Nov 22, 2018 1:14 am

If Enteragam keeps you nice and firm try taking it on a daily basis , it's a medical food it won't harm you in any way.
About your diet , that definitely has to change , you cannot be eating spicy food or junk food or drinking alcohol or eating sugary treats without paying for it later. A easy to digest diet is what you need to heal the gut : grilled or baked white meat , eggs , steamed or grilled fish , well cooked vegetables like zuchinni , bell pepper , carrot , potatoes , parnsnip , rice ,chicken soup. You can look under CDI -Nutrition for more details about diet and some recipes.

sammyp
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Re: 5 Month in

Postby sammyp » Thu Nov 22, 2018 4:08 am

If you aren't having D, there's no reason to go back on Dificid. If you still had CDiff, the Entergram wouldn't firm your BMs. There's not really any stopping CDiff D once it starts without conventional treatment. It's hard for people to hear this but healing from the effects of CDiff takes a long time for most people. Post infectious IBS is common and can be severe. It can continue for a long time while your gut heals. I'm 13 weeks post treatment with a Vanco taper pulse and still have bad days. Honestly, if you're "fine most of the time" that's better than most of us in recovery can say. Mild symptoms on off days is not CDiff. CDiff symptoms are continuous and unmanageable without treatment. It's important to remember that overtreating is bad too. True healing begins after you come off CDiff treatment and your gut flora begins to replenish. Talk to your doc but in my opinion from what I've seen on these groups, people are looking to take a med and be back to normal. It just doesn't happen with CDiff. The meds work to clear the infection but the healing process is long and requires patience post meds.

Pizza13
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Joined: Wed Nov 21, 2018 7:18 pm

Re: 5 Month in

Postby Pizza13 » Thu Nov 22, 2018 10:12 am

Thank you I will check out some recipes! It’s so frustrating because my GI MD is supposed to be the “bet in my area” & I feel like these things would’ve been helpful to know because 90% of what I eat is filled with spice and then I snack all day on sugary treats..
& I thought I didn’t have c-diff because on Enteregam my BMs weren’t D. But he said from a colonoscopy I do have it even though my tests were negative because it’s a toxin binder? So when I missed a day or two it was right back to the hellish cycle of D. 9-16 times a day.
I’m so happy this group is here because I feel like I’m actually learning about it. The way the GI explained it was I wouldn’t have to change my diet and I’d be “better in no time” and worst case I’d need a fecal transplant (which I still don’t want to do). I guess I’m just confused because I don’t know if I actually have it still because he says I do, but my tests say I dont & Enteregam is so so expensive to stay on..

Ril
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Re: 5 Month in

Postby Ril » Thu Nov 22, 2018 12:31 pm

How long ago was the colonoscopy that your GI is basing his diagnosis on?

MKW
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Re: 5 Month in

Postby MKW » Thu Nov 22, 2018 3:45 pm

I have SIBO and took Enteragam for a while. It’s a great product. I know it’s a “toxin binder”, but I have never heard it is such a toxin binder that it can totally control an active c diff infection.
I mean that would be a miracle and I would think that The manufacturer would be promoting that and absolutely doing clinical studies to prove it.
I find that a little hard to believe. I have read in theory in could help prevent relapse after treatment.
Did I read you correctly? Your doctor is one of the best in your area and he said Enteragam is making you asymptomatic with an active toxin producing C. difficile infection?
I had an FMT to cure my c Diff. It has an 80-90% success rate. The question is do you really need that or not.
I hope some of the moderators on here can continue to give you more insight!

Pizza13
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Re: 5 Month in

Postby Pizza13 » Thu Nov 22, 2018 7:18 pm

It was within the last 30 days I have to check my bill for the exact date. But I just thought it was weird, how can my doctor say I still have it but my test be negative?

I 100% believe you about the Enteregam because I googled it after I found out how much I’d be paying for it and literally no where online does it say it’s for c-diff, so I’m just going off what he was saying (which is again infuriating). My doctors also didn’t tell me how long i’d be on it for... i’m Really starting to wonder if my DRs “the best in the area” or if only the best because the others aren’t that good to begin with. I wasn’t even told about watching what I eat until I found this site!

I don’t personally think I need a transplant but I also don’t really want one, I’ve heard it’s worked for a bunch of people but I’ve also heard some horror stories & I can’t really afford more hospital visits.
I know I’m probably just complaining too much and blowing it way out of proportion but I guess I’m just physically and mentally exhausted from all off this.

Ril
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Joined: Sat Oct 27, 2012 2:45 pm

Re: 5 Month in

Postby Ril » Thu Nov 22, 2018 11:57 pm

I would go for a second opinion with another GI. If you are negative for toxins I don’t understand how you can have active disease however if he actually visualized c diff colitis ...but I also am not sure why he did the scope in the midst of active c diff.

Perhaps I am misunderstanding something here. If I am not, I would get a second opinion for sure and maybe a re-evaluation is needed. Who said yours is the best and by what standard?

roy
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Re: 5 Month in

Postby roy » Fri Nov 23, 2018 2:42 am

If he  visualized c diff colitis you would certainly test positive.
A toxin binder does what it says it "binds" the toxin to the medication and you poop it out so it causes less harm.
It's still in your poop though!
It DOES NOT neutralise the toxins so they would still be detectable.
Ask what he saw because simple observable inflammation is far from c.diff and if a colonoscopy showed typical c.diff plaque (advanced symptom of severe disease) you would be very very sick.

Pizza13
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Joined: Wed Nov 21, 2018 7:18 pm

Re: 5 Month in

Postby Pizza13 » Fri Nov 23, 2018 7:08 am

Nope, this is exactly what I’ve been told & i’ve Asked multiple times to make sure I wasn’t misunderstanding either. When I was hospitalized nurses and other doctors said he was the best and I guess being sick and just wanting to be better I believed them...
I’ll be searching for another doctor & changing my diet now to be safe. Thank you guys so much for all the help!

Messydre
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Re: 5 Month in

Postby Messydre » Fri Nov 30, 2018 11:52 pm

I'm sorry you're going through all this. I'm almost 2 months out from my 2nd relapse and the only advice I have for you is to stay away from dairy, anything fried, beans for sure, some people can't have gluten, I do ok most days except I had something with a little spice in it and 3 days later I'm still paying for it. No more spice. I can handle some dairy, butter, or things with diary in the ingredients but I can't have cheese, I don't dare try milk. I tried green beans and it wasn't good, or lots of fruits, so far apples and bananas are ok. You basically have to go on a really bland diet and then try things slowly. On days I give in I will hurt. I miss food so much but I don't want to be miserable so I deal.


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