Trying to recover from a c. diff infection (Clostridium difficile)

Posted by acres @acres, Apr 12, 2016

I am trying to recover from a c.diff infection. This started with taking clindamycin in mid January and 3 days later I became ill with diarrhea and felt sick, loss of appetite etc...Went to the er twice, tested negative for c.diff on my 2nd visit. The Dr. told me to take imodium to rest my colon since I tested negative. That evening I had diarrhea and took the Imodium. Became constipated with pain lower right side. I went to a GI dr. pleading for help, I did another stool test and it came back positive for c.diff. I tried flagyl but could not tolerate the side effects. Tried vancomycin for 10 days. Did not work. Tested positive again, Went to a new gi doctor who prescribed dificid for ten days. I am 31 days post dificid and I have almost constant gut rumbling and urge to go. My 1st bm in the morning is usually semi normal, but after that they are always either pencil thin and or small pieces (2 to 5 times a day). This has been my routine since the vancomycin. I do not get dull blown diarrhea..... My dr. wants me to have a colonoscopy but I an scared that the cleansing will wipe out all my good flora. I currently take 2 florastor pills and 1/2 vsl3 per day. I eat fermented pickles for the probiotics as well..... I have many food intolerances since this whole mess began (fiber, many vegatables, dairy). I also have a strange taste in my mouth most of the time, have very little energy and fight with depression. My primary gave me Xanax .25 but I only take them at night when I cannot sleep...... Went to a nutritionist who put me on a no wheat, soy, dairy, gluten diet. Does not seem to be helping or hurting. I lost 20 pounds and cannot gain any weight (I weigh 120 at 5'7")... I am thinking it might be sibo, or candida but cannot find a dr. to test for these....I am in the right place for help or advice ? The urge to go is awful and limits my once active lifestyle.....
Thank you, Scott

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@virgo1952

Hi dilly. Been following these chats about chronic c-diff. Again, always learn from all of you. As you know (don’t want be redundant) I also had a positive test for c-diff after my colon resection. Two rounds of antibiotic after over two months of complaints to my surgeon. (I emailed my pcp, she sent back to the surgeon). I wouldn’t have the second round if I hadn’t become a total pain in the a... about it. So, I guess what I am saying is the test is expensive and some doctors sometimes ignore the symptoms if not bad enough. I know this because it happened to me. I was told by my surgeon’s nurse (never talked with my surgeon after my 20 minute post-op) that the office didnot retest and I was to stop calling the office with my complaints. Now, I’m not saying that your doctor (office) is like that. I am saying that you are your best advocate and-it seems like if you are experiencing this rollercoaster of infection/antibiotic treatment, maybe it’s time for a different approach. Not a doctor, so don’t know what it is. I’m sure there r qualified medical staff that can address your issues. All you have do is read the history of chats to see that other members have had the same ups and downs of c-diff. Covid has brought good hygiene education to many, which is a good thing. Don’t stop asking your doctor(s) for answers. They r not living your life. My “new” normal after 11/2 years is not my “old” normal”. I’m not-settling for anything but the “best” of my situation. If that means sending emails or going over the dr’s head to administration, I will and have done it. Your body, your life. Virgo

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I’ve been making a pest of myself to the gastro office staff since the end of October when I got diagnosed with diverticulitis. I had divert back in 2008 and things just seemed different this time, although maybe being older made a difference. But since there are three drs in the practice there are quite a few office staff. I think they all know my voice by now. But I was scared. Then another bout of divert at the end of Feb and then the antibiotic for that led to c-dif. My gastro was pretty responsive, but I think running out of ideas so he sent me to a Dr at Georgetown Univ. But as Virgo said, you know your own body and when things don’t seem quite right you need to try to find out why.

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@judy75

I’ve been making a pest of myself to the gastro office staff since the end of October when I got diagnosed with diverticulitis. I had divert back in 2008 and things just seemed different this time, although maybe being older made a difference. But since there are three drs in the practice there are quite a few office staff. I think they all know my voice by now. But I was scared. Then another bout of divert at the end of Feb and then the antibiotic for that led to c-dif. My gastro was pretty responsive, but I think running out of ideas so he sent me to a Dr at Georgetown Univ. But as Virgo said, you know your own body and when things don’t seem quite right you need to try to find out why.

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@acres and @judy75 I wonder if it would help you to eat plain yogurt (you could flavour it with fruit perhaps) for a while after you finish your course of antibiotics. It would replace the good bacteria that the antibiotics kill along with the bad bacteria and may ease stomach discomfort ...?

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Am beginning to think C.Diff has a mind of its own! Am wondering if there are different strains of it as some people seem to recover reasonably quickly while others, like me, didn't or don't. Also, what type of damage was done to the bowel. Judy...so true, we know our bodies! In my "next life" I would like one of my daughters to marry a Doctor! Or, live near a teaching hospital or clinic. Or, be a bit healthier! Take care everyone, June

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I’ve probably asked this before, but can’t recall, but I’m curious as to what foods you eat for your meals during the day when dealing with c-dif. I try to eat yogurt during the day, but just wondering what particular foods you have for breakfast, lunch, and dinner.
Thanks, Judy

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@judy75 .. when i had c.diff and on the lengthy vancomycin treatment i already had ibs-d ... when on vancomycin could not take anti-diarrhea meds so it was doubly horrible .... i lost either 15 or 25 lbs over the summer... dont remember now... but didn't take a probiotic, nor yogurt, just what husband and I were eating but maybe 1/4 portions.... definitely no tomatoes or spicy sauces; scrambled eggs ok, bread, bland foods...I bought a book on cdiff which i now see advertized on internet which was overkill and so scientific, scared me and made situation worse... but I can look in there and see what she suggests as optimum foods - let me know and i can copy.... i dont take vitamin pills but looking back I dont think was getting enough nutrition esp. cos of the constant diarrhea... am sure you will get lots of idea from comments here, good luck judy

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@lacy2

@judy75 .. when i had c.diff and on the lengthy vancomycin treatment i already had ibs-d ... when on vancomycin could not take anti-diarrhea meds so it was doubly horrible .... i lost either 15 or 25 lbs over the summer... dont remember now... but didn't take a probiotic, nor yogurt, just what husband and I were eating but maybe 1/4 portions.... definitely no tomatoes or spicy sauces; scrambled eggs ok, bread, bland foods...I bought a book on cdiff which i now see advertized on internet which was overkill and so scientific, scared me and made situation worse... but I can look in there and see what she suggests as optimum foods - let me know and i can copy.... i dont take vitamin pills but looking back I dont think was getting enough nutrition esp. cos of the constant diarrhea... am sure you will get lots of idea from comments here, good luck judy

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Thanks so much for responding. Half the time I have no real appetite or my anxiety keeps me from wanting to eat. Anxiety also keeps me in the bathroom. But I’m just having a hard time figuring out what to eat for meals. If anything it’s usually cream of wheat and tea for breakfast, soup or a tuna fish sandwich for lunch and maybe a little chicken breast and mashed or baked potato for dinner. Not really anything in between. When I can’t stomach anything I’ll drink an Wnsure protein drink. I’ve lost 30 lbs since the diverticulitis in Oct and still losing with c-dif.

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Hi Judy like you, i cared for myself at home age 75 and husband including keeping home sterilized etc., no help from family dr or any suggestions... however had i been a patient in hospital would have had my clothing and bedding washed for me, room cleaned etc., and "probably" a dietician finding ut what i could eat..... no fun having it in hospital either and for older people who are ill can be life threatening but for those who have it at home i wish they would provide more support if requested; my doctor just said wash your hands. i said, shall i tell pregnant neighbour next door or my 92 year old neighbour i visit across the street, he said; you dont have to tell anyone! i was terrified the whole time i would pass to my spouse or my adult children when visiting so isolated myself. anxiety didnt keep me in bathroom but diarrhea did as while on over 120 vancomycin pills i could not take imodium ,,,, as also had ibs-D.. it was HORRIBLE ... i dont think people understand unless go through it, as i probably dont understand other's illnesses.... i am going to look for that book i bought just to see what she suggested, might give you some ideas... but even now i dont eat properly cos of ibsd and fecal incontinence and severe fatigue to even cook... take out is out all right, out of the question.. and really i should be eating better .... hang in there, how old are yu judy , june x

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@lacy2

Hi Judy like you, i cared for myself at home age 75 and husband including keeping home sterilized etc., no help from family dr or any suggestions... however had i been a patient in hospital would have had my clothing and bedding washed for me, room cleaned etc., and "probably" a dietician finding ut what i could eat..... no fun having it in hospital either and for older people who are ill can be life threatening but for those who have it at home i wish they would provide more support if requested; my doctor just said wash your hands. i said, shall i tell pregnant neighbour next door or my 92 year old neighbour i visit across the street, he said; you dont have to tell anyone! i was terrified the whole time i would pass to my spouse or my adult children when visiting so isolated myself. anxiety didnt keep me in bathroom but diarrhea did as while on over 120 vancomycin pills i could not take imodium ,,,, as also had ibs-D.. it was HORRIBLE ... i dont think people understand unless go through it, as i probably dont understand other's illnesses.... i am going to look for that book i bought just to see what she suggested, might give you some ideas... but even now i dont eat properly cos of ibsd and fecal incontinence and severe fatigue to even cook... take out is out all right, out of the question.. and really i should be eating better .... hang in there, how old are yu judy , june x

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...husband just searching for that book on c.diff. in meantime, an old ibs cookbook I have, which i didnt follow , does suggest keeping a food diary which i think is a good idea for anyone with tummy troubles; just a simple lined paper with date and what you ate and drank, and if made things worse or not; i am thinking that IF you are referred to a dietician or can speak with one, you will have it handy i.e. what you have been eating etc.. just an idea for now.... i am having scrambled eggs for lunch and a cup of tea!! J.

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Hi June, I’ll be 64 next month, but I think my 88 year old mom is in better shape than I am! She had a resection when she was about 84. I think it was because of diverticulitis. That must run in our family- I’ve had three bouts and I think the antibiotics from the bout in late Feb caused the c-dif. I’m reluctant to go anywhere because I never know when I’ll need to use the restroom. My 26 and 28 year old daughters live nearby and they will go grocery shopping for me when I don’t trust my gut.I don’t share my bathroom with anyone and I make sure my daughters use the other bathroom. I like to wear slippers so I keep a separate pair to wear in my bathroom. I’m always doing laundry. I used to wear my nightgowns or pj’s a couple of nights in a row, but now I wash after each wearing. I also use sanitary pads to keep my underwear from getting stained. It’s a messy infection. I’ve also cancelled various other Dr appointments as I don’t trust my gut while I’m there. I only talk to my gastro dr, although that’s still telemedicine. Hopefully they will open their office soon to see patients in person. But I agree with you that the Dr doesn’t really tell you what to eat except to stay on a bland diet which I have been doing for months because of the diverticulitis. And the Dr said that Clorox wipes are fine and no need to spend money ordering the germicidal wipes that hospitals use. I figure if my hands are really clean I shouldn’t pass c-dif on to anyone. I apologize that this is a rambling reply.
Judy

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@lacy2

...husband just searching for that book on c.diff. in meantime, an old ibs cookbook I have, which i didnt follow , does suggest keeping a food diary which i think is a good idea for anyone with tummy troubles; just a simple lined paper with date and what you ate and drank, and if made things worse or not; i am thinking that IF you are referred to a dietician or can speak with one, you will have it handy i.e. what you have been eating etc.. just an idea for now.... i am having scrambled eggs for lunch and a cup of tea!! J.

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I do keep a food diary showing what time and what I ate along with every other thing like blood pressure, weight, at what time I have bowel movements. If a dr asks me what’s been happening I’ll be able to let them know.

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