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Trying to recover from a c. diff infection (Clostridium difficile)
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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Re: C-diff.
(New to this posting.)
Have had 5 recurrent C-diff infections in past 1 yr. 4 mos.
Had Vancomycin, DIFICID, Vancomycin again and again, and now a recomendation to combine VAN w/Xifaxan (Rifaximin).
Next suggestion is IV infusion of Bezlotoxumab (a human monoclonal antibody) along w/antibiotic. Has anyone had these last two procedures? Successful? Negative side effects?
2) Has anyone considered FMT (Fecal Microbiota Transplant)?Or used the FMT Pill? Successful? Negative side effects?
Thank you,
Getting Desperate
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2 Reactions@epm I, too, had reoccurring cdiff in 2018. After the 4th one, I got the fmt. Best thing I ever did! Although, I still have not gained the weight back, I am doing ok. I know my body will never be the way it was before cdiff, I make sure to take probiotics every day! If you have any questions, please feel free to ask me! Good luck!
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4 ReactionsMy husband (89) just had a bout of C.Diff and had to be in the hospital for two days (they wanted to keep him a third day but he insisted on coming home). Several more days of diarrhea. Then normal stools - BUT - along with his urine incontinences he also has no control over BM.
He has a lot of side issues, CKD, CVI, some mild calcification of the aorta valve, cyst on the pancreas, nodules on lung, etc.
Last few days his feet are showing slight signs of swelling - especially right that suffers from CVI. Since his feet are almost always elevated he hasn't had the CVI swelling for about a couple of years (he lives in his recliner).
Bill has upcoming follow up doctors appointment on Friday. He has a lot of different "mild" conditions.
Currently on the Vancomycin.
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2 ReactionsThanks for your input.
Where did you have the FMT procedure done? At Mayo in MN?
Do you know if the fecal matter came from OpenBiome in MA? (They have had issues since 2020. Prior to that seems to have been great.)
OR did you have a relative or friend donor?
Thank you for allowing me to openly ask questions.
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1 ReactionHas anyone had the Bezlotoxumab Infusion?
@epm I had the fmt performed in March of 2019 via colonoscopy at a local hospital. I live in New Jersey. The fmt came from a company but I don't remember the name. The result was almost immediate! What I don't know is why the doctors wait until a patient has had 3 or 4 relapses before they will perform the fmt! Personally, I think it's the pharmaceutical industry that has the control because if they did the fmt after the first or second relapse, they wouldn't have the patients taking all the drugs such as vancomycin! The pharmaceutical industry would miss out on all the money. When I first got sick, I didn't have prescription coverage and I paid $1000 for 40 pills! That's just my opinion. Anything else you want to ask, feel free.
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1 Reaction...too late for me to get FMT at 79 and other illnesses and narrow angle glaucoma stops me from certain meds re eye presssure... had c.diff 2018 and never recovered and since then fecal incontinence; also where I live in northern Ontario Canada they dont do FMT... but have laundry list of other problems and wish I just would not wake up .... not the on and off depression/anxiety, just facing facts... beginning to strain relationship with daughters and husband of 40 yrs for what, another couple of years suffering every day and yes dear friends i do realize that many are coping with much worse than i am, but for me enough is enough and no cures and would like to be remembered as i was not as i am and becoming, i am becoming bitter and that is not my nature.... sorry but am just being completely frank...and i wholeheartedly support help for every single person who is coping or trying to cope and even encourage them not to give up, but for me am finding it too hard - maybe if i lived in Toronto or such with teaching hospitals but that will remain an unknown... J. Tinnitus hyperacusis musical ear all driving me rond the bend and with narrow angle glaucoma cannot take many meds that increase eye pressure and so on..... 💜
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2 ReactionsGreat little posts about CDIFF. Appreciate it. Though it is from 2017, still gives insight. I have been mayo arizona the past few weeks for Cdiff, and maybe SIBO, though they really do not test for SIBO. I was on Dificid for 10 days. Been off it it for about 4 days now and starting again to not feel well. Not sure if should go back again or not or wait it out. Appreciate everyone's posts above. Hope everyone is doing well from Cdiff.
same. surprisingly newly diagnosed with c. diff a/b toxins without any diarrhea. been on 125 mg van. 4xday having bloating & constipation. History of ulcerative colitis and diverticulosis (never diverticulitis). same morning stool specimen resulted, I was scheduled for a colonoscopy (already done the prep) yet they canceled colonoscopy and told me to take vanc. for 14 days
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1 Reactionwhy cancel a colonoscopy because of atypical c diff ?