Experiences with Dificid..need help

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roy
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Re: Experiences with Dificid..need help

Postby roy » Mon Nov 11, 2019 10:37 am

Your posting as ChrisD, lunasdad and martini.
You have multiple accounts.
We will support you but not if you keep changing names and asking the same questions.
Pick a name and stick with it.

ChrisD
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Re: Experiences with Dificid..need help

Postby ChrisD » Mon Nov 11, 2019 11:12 am

Roy-

This is the only username that I have. I am not sure about the other two names you are mentioning in your commentary. Do not want to get into a back and forth in the forum because all of the help these folks have provided has been invaluable. I will continue to ask questions using this name and hopefully can be a productive member of the site.

Chris

roy
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Re: Experiences with Dificid..need help

Postby roy » Mon Nov 11, 2019 11:24 am

I have sent you a PM explaining how we know if someone has multiple membership.

AngelaB
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Re: Experiences with Dificid..need help

Postby AngelaB » Wed Nov 27, 2019 6:44 pm

Hi Chris:

Just wondering how you are doing. I am on Day 5 of Dificid after failing a long taper of Vanco. I am not feeling that great on it (a lot of abdominal side pain). I never had any real negative side-effects with Vanco though I have had several relapses that I wanted to try the Dificid. I am hoping it works as I am at my wits end!

Angela

NanciT
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Re: Experiences with Dificid..need help

Postby NanciT » Wed Nov 27, 2019 8:46 pm

Angela

It is one of the side effects of Dificid. I did not have side effects during my first round of 10 days. I did relapse and went on a very long taper, that is when I did not feel well taking it. I had abdominal pain on and off and a tightness in my stomach that would not go away.

Dificid does work!! I had CDIFF for a year and although I did not feel week taking it, it got rid of CDIFF!

Hang in there, it takes time

NanciT

AngelaB
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Re: Experiences with Dificid..need help

Postby AngelaB » Thu Nov 28, 2019 10:41 am

Thanks for the info Nancy. How did that taper of Dificid work? I also have had this bout of c-diff for a year. When I tapered with Vanco, dr. had me start with 4 pills a day for several weeks, then 3 a day for about a month, then 2, etc. Since Dificid is only taken twice a day, how does a taper with it work? I don't know how I got the infection this time as I was not even on any antibiotics! I appreciate any responses! This site is so helpful.

AngelaB

ChrisD
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Re: Experiences with Dificid..need help

Postby ChrisD » Thu Nov 28, 2019 1:10 pm

Angela-

I finished the Dificid about 3 weeks ago. It def made an improvement while I was on it, I had several days of normal BM"S while on it but after about a week off of it I started too feel sick again although not as bad as I was before. While on it, the gas was horrible and I did have abdominal pain, but felt more like bloating and gas pain. My doctor put me on Questran to try which I have been on for almost 2 weeks. I was feeling much better until about Monday this week, since then I have had daily WBM's. I had a follow up with my doctor and he gave me a stool test to take home and scheduled me for a SIBO breath test. At this point I am feeling pretty lost on all of this as I have been on Vanco 2 times and Dificid. Been dealing with this for 6 months and as of this morning I am down 40 pounds. If my test come back positive I think I will probably need to go the FMT route if my symptoms continue. To be honest after taking the Vanco, I had several weeks where I felt great. The Dificid helped but it did not make me feel as good as when I finished the Vanco. Although the Vanco was rough on me when I took it. I was thinking this was P-IBS because I am not running to bathroom 10 times a day but rather I generally have the runs after I eat. My doctor said some people don't have the constant runs but can still be CDIFF.

Hope you feel better soon!!

AngelaB
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Re: Experiences with Dificid..need help

Postby AngelaB » Sun Dec 01, 2019 4:01 pm

Hi Chris:

I too felt much better on the Vanco. I feel like my response to the Dificid has been very inconsistent and I am leaning toward the fact that it hasn't totally cleared up the Cdiff. Tomorrow morning is my last Dificid pill. I am very scared. I don't really want to go the FMT route. I took Questran the first time I had it and I believed it helped. My dr. this time around is not a fan of it even though I asked about it. Let me know how you do? Are you doing the Questran now that you are done with the Dificid? How long are you going to try that?

Ril
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Re: Experiences with Dificid..need help

Postby Ril » Sun Dec 01, 2019 9:30 pm

Chris, if you do not have c diff you might want to ask your dr about Enteragam which is a medical food. I struggled with severe PI IBS for a long time after c diff. I was on several meds, including questran, which did help, then Enteragam. It took a long time for the Enteragam to kick in but when it did it worked well.
Of course if it is c diff that’s different, but there are a lot of meds for IBS and I have taken most of them. My GI was great at working with me for the past 7 years with c diff and it’s aftermath...but I had IBS beforehand.

Good luck,
Rita

ChrisD
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Re: Experiences with Dificid..need help

Postby ChrisD » Wed Dec 04, 2019 2:06 pm

Hey-

Sorry for not responding, been a crazy few days. AngelaB, I have been taking the Questran for almost 3 weeks and it does seem to help. I have been able to put together several good days in a row and was actually feeling like maybe I was moving in the right direction. Unfortunately, this morning and after lunch today have been bad. Yesterday I had red meat for the first time in months for lunch and dinner and it did not bother me at the time, but I woke up with horrible stomach pain and urgency this morning and right after lunch, so my hope is that is what caused my issues today.(totally fine eliminatig red meat, not a fan) I am going to continue on the Questran as long as I feel it is working. My doctor said to take it up to 5 packets a day which I am not doing. I generally take one packet 30 minutes before dinner. That seemed to help up until today. From what I have read in the Forum it can take sometime for it to work so I am just waiting it out now. I have to send a stool test in but want to wait it out a bit more and get further out from when I finished the Dificid and then see what happens.

Rita, my main struggle is not knowing if its the IBS or CDIFF. I have had bouts of IBS for years but was able to control it without medicine. My CDIFF symptoms have never really been the 20-30 time a day bowel movements, that was only when I was first diagnosed and when I first realized it wasnt my IBS flaring. My biggest issue is that I literally have to run to the bathroom during a meal because I am going to have a massive D attack. I am getting tested for SIBO in a few weeks and will see what happens. Both my GI and ID think I have it because of the response I had to the Vanco which has been used for SIBO as well. Both times on Vanco for a few weeks after stopping my stomach felt better than it has in years and slowly my symptoms returned. Dificid never really got me all the way better. ALso, aside from the WMB, the intense gas and bloating is another sign of SIBO. SO, we will see.

Hope you all feel better,

Chris

roy
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Re: Experiences with Dificid..need help

Postby roy » Wed Dec 04, 2019 7:05 pm

Why are you sending in a stool sample? testing to see if it's gone is not recomended!
Positive results are common after c.diff and testing is unreliable.
A Dr should know that there is no such thing as a test to prove its cured.

ChrisD
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Re: Experiences with Dificid..need help

Postby ChrisD » Wed Dec 04, 2019 9:56 pm

Roy-

I was struggling with daily WBM, then a few days were ok, followed by a few days of WBM, and back and forth we went. Along with that severe bloating and gas pain. He gave me the test to have if it continued while waiting for the SIBO test. For some reason things get better on the meds and then things go up and down (which I know can be IBS). After seeing my doctor I was really sick from Monday-Thursday, then from Friday to yesterday felt good, today was sick to my stomach all day running to bathroom. I am assuming it is my IBS in a bad flare but he wants me to make sure he has all bases covered. Im still taking the Questran and Elavil for IBS but we will see.

Thanks,

Chris

AngelaB
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Re: Experiences with Dificid..need help

Postby AngelaB » Thu Dec 05, 2019 6:10 pm

Hi Chris:

What does SIBO stand for? I see the Infectious Disease dr. on Monday. I finished the last Dificid pill on Monday. I am very nervous. If the c-diff comes back, I am going to talk to the dr. about doing a taper with the Dificid, though I did not feel great while on it. I had IBS symptoms (mainly bloating) for years after my first bout of c-diff. I too have trouble distinguishing the IBS from the c-diff, however with the c-diff I have mucus and blood sometimes and lower abdominal pain after going. Hope you feel better.

Angela

ChrisD
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Re: Experiences with Dificid..need help

Postby ChrisD » Thu Dec 05, 2019 10:58 pm

SIBO is a bacterial overgrowth in your small intestine. Your small intestine should be sterile and not have bacteria. For some reason a lot of us end up having bacteria in our small intestine after having dealt with CDIFF. In fact depending on what you read a lot of people with IBS have SIBO. The way it is treated is thru a course of antibiotics and dietary changes. In order to test you have to go for a breath test. For me I took Vanco 2 times and afterwards felt great but within a few weeks my symptoms came back. I took the Dificid and although felt better, Cano made me feel much better. My doctor said that because Vanco is basically killing a lot of bacteria while Dificid is more targeted at CDIFF bacteria it is possible that the Vanco works better for me BECAUSE it may be working on the SIBO and I may NOT have active CDIFF. It is tough and frustrating to tell.

NanciT
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Re: Experiences with Dificid..need help

Postby NanciT » Thu Dec 05, 2019 11:42 pm

It can take awhile to feel better, on this site we hear from those we do well right away, for me it has taken a long time. I was on Dificid for months so I feel that is why. My gut took a long time to heal.

I know how difficult it is, we all want to get back to "normal" but it takes time. If you give yourself that time, it is much easier to deal with. I think knowing this is true for many also helps. We often say in recovery things can be "all over the place". Generally the good days outweigh the bad and soon the bad days are a thing of the past. I still have foods I cannot eat, slowly I am getting there

Take Care

NanciT


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