C. difficile -are your guts ever normal again ?

Posted by sue6408 @sue6408, Sun, Jan 27 12:57pm

Does anyone know any body that has recovered from c.diff (guts back to pre-c.diff status ) . I have been negative for a year and still have bloating every time I eat anything and sporadic diarrhea. I need maternity clothing to eat and be comfortable. I have 0 appetite since I was initially infected.I am on creon 36,000 . this helps some what with bloating,I take papya&pineapple enzymes not helping, and floraster 2xday not sure about that.I have tried the FODMAP diet, I avoid many foods on that diet. I am seeing an RD, just finished an elimination diet with her. If I eat I bloat there for I am. Bottom line…are my guts ruined forever ?

Been there and done that. It has been 4 years since my last bout with C-diff. It has gotten some what better. I am using three things that seems to help. "Beano"…over the counter. I buy the Walmart brand of the Beano, it helps a lot with gas. Then I also take, Probiotic 10–I take 3 of these with every meal. I recommend taking more if you can afford them. The last thing that seems to help the most is: It is a Soluble Fiber, called: Calcium Polycarbophil. It says it is a laxative on the bottle but it doesn't make you go…it is nothing like Bran cereal. I can't eat ANYTHING Bran. This polycarbophil has REALLY helped a lot. I take 4 tablets every meal. I have been so ill with the after effects of the over use of antibiotics and C-diff I didn't want to live anymore. It has taken over 3 years and things have gotten better. I still have horrible gut pain and running to the bathroom, it is worse in the mornings. Some mornings it is so bad I just eat saltines and water. I can't leave my house before noon it is so bad and some days not at all. IF you take try these pills, take them just as you start to eat your meals. Don't take them on an empty stomach then decide to eat an hour later. I believe what has happened is that the over use of antibiotics especially if they left you on them for months or years like the VA Hospital did me, is that is causes damage to the intestines and even the bladder. That is what I believe.

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@pines

@ngorman25 I had never EVER heard of Cdiff before I got it. And I went almost two weeks thinking I first had the flu and then the Ecoli scare was going around with romaine lettuce and I thought I picked up Ecoli. So after waiting 12 days, I went to the doctor. By then, it had taken over by body. And I had googled enough things and saw a photo of Cdiff stool that looked just like what I had started passing. I never, in my life, thought I would be talking to people about BM's. 🙂

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I am using three things that seems to help. "Beano"…over the counter. I buy the Walmart brand of the Beano, it helps a lot with gas. Then I also take, Probiotic 10–I take 3 of these with every meal. I recommend taking more if you can afford them. The last thing that seems to help the most is: It is a Soluble Fiber, called: Calcium Polycarbophil. It says it is a laxative on the bottle but it doesn't make you go, it says it is a bulk forming laxative…but it slows things down a bit in the gut.…it is nothing like Bran cereal. I can't eat ANYTHING Bran. This polycarbophil has REALLY helped a lot. I take 4 tablets every meal. I have been so ill with the after effects of the over use of antibiotics and C-diff I didn't want to live anymore.

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@ngorman25

@nettecook If you don't mind my asking, what kind of anesthesia did you have? I had propofol but my throat is pretty sore. Don't know why other than being so dried out.. Have been drinking water all day but doesn't seem to make a difference. Was wondering if it was from the propofol.

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@ngorman25 Just checking to see how you're feeling today? I've read that some people feel better within a day of having FMT. I hope you're one of those.

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@ngorman25

@nettecook If you don't mind my asking, what kind of anesthesia did you have? I had propofol but my throat is pretty sore. Don't know why other than being so dried out.. Have been drinking water all day but doesn't seem to make a difference. Was wondering if it was from the propofol.

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@ngorman25 I’m not sure what they used. I would assume Propofol but as I was coming out of anesthesia, I heard them say they gave me Haldol too because I was waking a little or something? I don’t remember anything but I do know I slept for like 20 hours afterwards. 🤔The accident I had was in my sleep. I didn’t have a sore throat. Maybe call the doc Monday if you aren’t better. Make sure you aren’t getting a throat infection. 😱

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@pines

@ngorman25 Just checking to see how you're feeling today? I've read that some people feel better within a day of having FMT. I hope you're one of those.

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@pines Actually, I had a very good night last night and so far today I feel ok. However, I haven't had much to eat since yesterday and I was certainly cleaned out so I am waiting to see how my first bm goes! I will certainly keep you posted.

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@nettecook

@ngorman25 I’m not sure what they used. I would assume Propofol but as I was coming out of anesthesia, I heard them say they gave me Haldol too because I was waking a little or something? I don’t remember anything but I do know I slept for like 20 hours afterwards. 🤔The accident I had was in my sleep. I didn’t have a sore throat. Maybe call the doc Monday if you aren’t better. Make sure you aren’t getting a throat infection. 😱

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@nettecook I also had propofol and I looked it up last night and read that a sore throat is not a side effect but can be a sign of an allergic reaction. I was tired yesterday but didn't fall asleep until my usual time. Today the sore throat is almost gone. The "accident" I had was right after the procedure.

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@ngorman25

@nettecook I also had propofol and I looked it up last night and read that a sore throat is not a side effect but can be a sign of an allergic reaction. I was tired yesterday but didn't fall asleep until my usual time. Today the sore throat is almost gone. The "accident" I had was right after the procedure.

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ngorman25 I’m glad your sore throat is gone!!! I think the Haldol is what made me so sleepy. I’ve never been given that before.

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@pines

@nettecook I'm happy to hear that you're doing better today. I sure hope the FMT works for you. I was worried after your comments yesterday. It's nice to have people on here who have been through the procedure. Wishing you well.

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@pines Thank you! I was concerned for sure. Now I just need to figure out this constipation, which I really don’t think is a result of the FMT. Yes, it is helpful to know each other’s experiences for sure!

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@nettecook

ngorman25 I’m glad your sore throat is gone!!! I think the Haldol is what made me so sleepy. I’ve never been given that before.

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@nettecook I have never even heard of haldol. All I know is I am so grateful I found this website and some wonderful people because I don't know about any of you, but everyone I know cannot begin to understand this life threatening disease. This group has saved my sanity (or what's left of it!) I know I can ask any questions and text about any parts of this. I have learned a great deal from all of you by your experiences. Thank you! Will definitely keep in touch with all of you and let you know how I am doing.

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I have had one bout of C.Diff and now have a urinary tract infection and today had to take an antibiotic. I am really scared I am going to get C. Diff back. What experiences have you all had with using antibiotics after C.Diff?
I also wanted to tell you about a really good set of videos i found on an online journal called Contagion Live. It is a panel discussion among 6 experts on C.Diff, guys who teach at medical schools like Columbia, and Tufts but who also have patients. I learned so much listening to these videos. They are short and each has a topic. You will find them helpful.
Here is the link: https://www.youtube.com/watch?v=p99kQPwpHWM. Write me back if it doesn't work and I'll try again.

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@annapocono

I have had one bout of C.Diff and now have a urinary tract infection and today had to take an antibiotic. I am really scared I am going to get C. Diff back. What experiences have you all had with using antibiotics after C.Diff?
I also wanted to tell you about a really good set of videos i found on an online journal called Contagion Live. It is a panel discussion among 6 experts on C.Diff, guys who teach at medical schools like Columbia, and Tufts but who also have patients. I learned so much listening to these videos. They are short and each has a topic. You will find them helpful.
Here is the link: https://www.youtube.com/watch?v=p99kQPwpHWM. Write me back if it doesn't work and I'll try again.

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oops, i gave you a link to a healing meditation (which is helpful) but not what I meant. For the videos google "Factors that impact C.Diff recurrence" -CONTAGIONLIVE. they are short and easy to listen to and divided up by topic.

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@annapocono

oops, i gave you a link to a healing meditation (which is helpful) but not what I meant. For the videos google "Factors that impact C.Diff recurrence" -CONTAGIONLIVE. they are short and easy to listen to and divided up by topic.

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@annapocono I found those videos too and found them helpful. I’m glad you posted them for others. I know, I’m scared of getting any sort of infection as well that requires antibiotics😱 I know we are supposed to tell all docs that we have had it so they will choose the least offending one. I think the broad spectrum ones are the riskier ones. I think….

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@ngorman25

@nettecook I have never even heard of haldol. All I know is I am so grateful I found this website and some wonderful people because I don't know about any of you, but everyone I know cannot begin to understand this life threatening disease. This group has saved my sanity (or what's left of it!) I know I can ask any questions and text about any parts of this. I have learned a great deal from all of you by your experiences. Thank you! Will definitely keep in touch with all of you and let you know how I am doing.

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@ngorman25 I knew of the drug Haldol only because i heard someone taking about it. It is a strong psychiatric drug. When I was coming out of anesthesia, and I heard the doc say Haldol, I was concerned. However, I have a friend in the medical field and she said it’s not uncommon for sedation. They do give it to patients who need strong psychiatric drugs, but for the purpose of sedating them. That was my understanding.

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@nettecook

I didn’t do Dificid at all because the copay at the pharmacy was going to be between $1000-1500 for 14 days. I did Flagyl (useless) then Vanco 3x, then FMT.

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I found a coupon online for Dificid so I only had to pay $50 instead of the $1400 my ins co pay would have been. I just googled and found it.

Liked by pines

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@lindac61

I found a coupon online for Dificid so I only had to pay $50 instead of the $1400 my ins co pay would have been. I just googled and found it.

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@lindac61 I hope Dificid works for you. I was given it after my 4th bout last October and it worked for me while Flagyl and Vancomycin did not. What pharmacy did you use? I'm not sure all pharmacies will accept the coupon.

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