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

I have had Cdiff for over 5 weeks. I’ve been treated with Flagyl. I think it gone then after about 4 days it’s back. Now I’m on vancomycin. I’m 71 & tiny. I have lost 20 pounds. I weigh 85. I seem a little better with diarrhea only about 3 a day. I’m really weak & generally feel awful. I’m worried that it won’t be gone this time either. I also have heart rhythm problems ( Afib). I’m getting desperate. Any advice

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Hello @sandyabbey,

You may notice that I moved your discussion and combined it with this existing discussion on C. diff. so that you can be be introduced to the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

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@sandyabbey

To all of you, I am still battling CDiff. I’m now on vancomycin. I had 3 rounds with Flagyl which seemed to help at the time, until I was off about 3 days. Then HORRIBLE diarrhea set in again. If I even sipped a drink of water I had better be sitting on the toilet. I had not eaten lots during the last couple of weeks because of being sick. Mostly soups & potatoes. I’m very tiny anyway so I’m not a big eater anyway. I’m 71 & have lost 20 pounds. I only weighted 105 at the beginning so I’m at 85. I have a heart issue called Afib & hypertension also. I’m doing well with those due to a wonderful cardiologist. After the 3rd relapse with this awful Cdiff I was getting in a panic. I never knew it was possible to have that much diarrhea & mucus come out of one tiny person. One night my husband said around 40 times. I had IV fluids & was sent home on Flagyl. Now I still have a week left on the vancomycin. As the time grows closer to being off I feel in a panic. My body can’t take another set back as bad as the others. I feel that my Dr is just going to wait & see if I do. I guess that’s all he can do. There are lots of foods that still hurt me, so I’m eating carefully. The diarrhea is gone except for one loose BM in the morning. Last time I got off the Flagyl I went 5 days without a Bm. Them boom. I don’t won’t to die like this after all I have been through with my heart & have mostly conquered that. I have made lots of notes from all these discussions from here. I’m going to ask my GI about all this. He doesn’t like to be questioned, but if he can’t listen I’m walking out & going somewhere else. I’m just not up to all these tests all over again I can’t even walk trough the grocery store alone. I’ll have a good day & think “YAY” then get up cramping of feel like my legs are rubber. With all the medical technology it seems like they should be able to help peopl like us. Oh, I think I forgot to say that I got it from clindamycin also for a severe sinus infection. I also have a compromised gut anyway due to diverticulosis & I had an episode with ischemic colitis about 10 months ago I know this is long, but I’m getting desperate. Any other ideas other than what I’ve read in these discussions? I’m open to listening to anything.

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@sandyabbey Our situations are very much the same, even our age, as I am 70. Except I need to take off 40 or 50 pounds. I lost 10 pounds with my 4th bout of Cdiff but put it back on when I started feeling better. Are you doing the pulse and taper method with the vancomycin? I did one round of Flagyl, 10 days of Vanco. And after the 3rd bout of Cdiff, I did the pulse and taper method of Vanco and in October, after my 4th bout, I took Dificid (fidaxamycin). My insurance asked if I had used Vanco before they would approve the Dificid. I went for 3 weeks and 2 days after the last round of Vanco. I'm out over a month since ending the Dificid. I continue to pray that this last med works. I will do the fecal transplant if I relapse again. I've even checked with the Open Biome capsule form of doing it. Less invasive and the cost is $635. Not sure my gastroenterologist will approve. My cardiologist also suggested I try Inulin as it feeds the good bacteria. You want to start out with a very small amount as too much will give you Cdiff symptoms with cramping. I will never take Clindamycin again. I can sure relate to everything you're going through.

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my daughter has C Diff and we are looking for a doctor in the NYC, Philly area, who administers Fecal pills. Can anyone help with names?

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@bonniedeely

my daughter has C Diff and we are looking for a doctor in the NYC, Philly area, who administers Fecal pills. Can anyone help with names?

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@bonniedeely If you google Open Biome you will find the site where your doctor can order the capsules. The cost is $635 for 30 capsules. I've had 4 bouts of Cdiff and I've decided I'm doing the fecal transplant if I have another relapse. I finished Dificid on 10/26. I started with Flagyl, then two rounds of Vancomycin. I'm hoping the Dificid (fidaxamycin) will work. If not, I'm going to ask my gastroenterologist for the capsules. Less invasive. Have you tried the other drugs first?

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Can anyone help me?
I got C.diff back in October (early to mid). I had taken clindamycin for BV and it didn't react well for me. I went into the ER for intense pain, bloating, and diarrhea. They found out I had a severe case of colitis, my entire bowel system was extremely inflamed. But they didn't know what type of colitis it was until my 3rd day there. Then they did the colonoscopy, endoscopy, and biopsy. So they treated me with antibiotics. Sent me home with more antibiotics. And after finishing them, and giving it a few days I felt better.
I was still more aware of my bowels, which is saying something since I have IBS already. But other than awareness, and maybe some tenderness in a way, it was normal. Then Thanksgiving came, and I ate what my family made. I had immediate diarrhea and pain. I thought it was the dairy, bc I forgot to start taking my IBS meds again. They had me stop taking them for awhile after being diagnosed with c.diff. Then I tried the food the next day, after taking my IBS meds. Same issues.
So I decided no more thanksgiving food. But the pain, bloating, twisting feeling, and pooping didn't stop. And I would get the urge, but when I went to go, it'd be a lot of gas, that was hard put to come up. When I would poop, the stool itself was very hard, and not a lot would come out.
My mother bought me stool softener. It made the stool less dry and sandpaper-like. But I still wasn't getting any relief.
So last Friday she gave me some of her Super Colon Cleanse (about 3/4-5/8 of a scoop/serving) mixed with Metamucil in a water bottle. And I drunk half the mixture. I still haven't stopped pooping. I'm pooping for hours again, just like with c.diff. No blood this time though. And the stool is pellet like.
I keep waking up to poop, or try to poop. I can't eat anything. Especially not carbs or dairy. I feel like I'm dying, but in a very different way than when I had c.diff.
I don't know what's happening. If I should go to the hospital or not. Or if c.diff has different symptoms the 2nd time around. Or if, because it was such a severe case, that my bowels were damaged somehow. I'm really just not all right, and idk what to do.

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@dn22

Can anyone help me?
I got C.diff back in October (early to mid). I had taken clindamycin for BV and it didn't react well for me. I went into the ER for intense pain, bloating, and diarrhea. They found out I had a severe case of colitis, my entire bowel system was extremely inflamed. But they didn't know what type of colitis it was until my 3rd day there. Then they did the colonoscopy, endoscopy, and biopsy. So they treated me with antibiotics. Sent me home with more antibiotics. And after finishing them, and giving it a few days I felt better.
I was still more aware of my bowels, which is saying something since I have IBS already. But other than awareness, and maybe some tenderness in a way, it was normal. Then Thanksgiving came, and I ate what my family made. I had immediate diarrhea and pain. I thought it was the dairy, bc I forgot to start taking my IBS meds again. They had me stop taking them for awhile after being diagnosed with c.diff. Then I tried the food the next day, after taking my IBS meds. Same issues.
So I decided no more thanksgiving food. But the pain, bloating, twisting feeling, and pooping didn't stop. And I would get the urge, but when I went to go, it'd be a lot of gas, that was hard put to come up. When I would poop, the stool itself was very hard, and not a lot would come out.
My mother bought me stool softener. It made the stool less dry and sandpaper-like. But I still wasn't getting any relief.
So last Friday she gave me some of her Super Colon Cleanse (about 3/4-5/8 of a scoop/serving) mixed with Metamucil in a water bottle. And I drunk half the mixture. I still haven't stopped pooping. I'm pooping for hours again, just like with c.diff. No blood this time though. And the stool is pellet like.
I keep waking up to poop, or try to poop. I can't eat anything. Especially not carbs or dairy. I feel like I'm dying, but in a very different way than when I had c.diff.
I don't know what's happening. If I should go to the hospital or not. Or if c.diff has different symptoms the 2nd time around. Or if, because it was such a severe case, that my bowels were damaged somehow. I'm really just not all right, and idk what to do.

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Sorry you are going through this and this is what I have learned from my own experience with GI infections. When you suffer from CDiff or any other gut infection, the lining of your intestines is irritated, damaged and compromised. It may take weeks and months for your GI to get back to normal. Nobody told me food is an irritant. I went to the GI doctor who put me on several rounds of antibiotics. I would improve and he would then encourage me to eat normal because I had lost 20 pounds. I would eat “normal” and start suffering from diarrhea in a few days. This vicious cycle continued for me until I started to do my own research and ran into information about SCD and Low FODMAP diets. My efforts to implement these diets on my own were a similar disaster but I could see some improvement in symptoms if I avoided certain foods. I finally begged for a referral to a nutritionist whom I have now seen three times only but she has totally changed the quality of my life. I have gained seven pounds and not suffered diarrhea or colic for nearly three weeks. This is going to be a slow healing process for me. I will not be eating a “normal” diet for months. Eating the proper foods after infections and antibiotic use is essential to long term recovery. I was in despair two months ago. Now I feel hopeful. There are many complexities to each of our cases but I would suggest to start keeping a food diary and get a referral to a nutritionist. Idea is to avoid foods that are high in fructose, lactose and complex carbs. Hope this helps.

Liked by dn22

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@sandyabbey

Thank you so much for replying, guthealth. I’m going to my GI dr next week. I have several things to talk to him about. It seems to me that they aren’t taking this as seriously as it is. I have a few decent days & then a week of the nightmare. I’m going to check out getting thus drink. I’m desperate. I feel I won’t live long if I don’t get help. I can’t tolerate this horrible CDiff coming back a few days after I get off the antibiotics. I’m weak too. There has to be something to help me recover. I’m definitely going to try this drink. Again THANK YOU.

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It is not just the CDiff. It is the gut dysbiosis and imbalance that is left in your gut by the infection and antibiotic use. Your intestines may be damaged and can’t absorb nutrients. That is what happened to me. Changes in diet are allowing my gut to heal and the supplemental drinks providing much needed nourishment. Elemental drinks are broken down to enzymes the body can absorb. Very different than taking Boost or Ensure. Those gave me diarrhea. Big difference between those and elemental drinks. Best wishes.

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WOW Reading this is like me telling my story.. I am exhausted by the length of time that I have been sick.. I was diagnosed 18 months ago and was told I didn't have C DIFF anymore.. But I am still so sick..I cant eat without having a change of clothes. No going out to eat..No staying over night at someones house..I am constantly having diarrhea and there is no warning. Its is a horrible way to live. Id rather not eat then to have an attack. I finally gave up on the Doctor and have an appointment with a gastrologist and I pray this is the answer. Ive tried everything and I am so done:(

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@ngarriso

WOW Reading this is like me telling my story.. I am exhausted by the length of time that I have been sick.. I was diagnosed 18 months ago and was told I didn't have C DIFF anymore.. But I am still so sick..I cant eat without having a change of clothes. No going out to eat..No staying over night at someones house..I am constantly having diarrhea and there is no warning. Its is a horrible way to live. Id rather not eat then to have an attack. I finally gave up on the Doctor and have an appointment with a gastrologist and I pray this is the answer. Ive tried everything and I am so done:(

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@ngarriso I really think you should be tested again for C.diff. With my 4th relapse of C.diff in October, my first stool sample came back negative. But after three prior bouts, I knew what it was. I had a second sample tested five days after the negative one and it came back POSITIVE. I was then prescribed Dificid (fidaxamicin) and finished that med on 10/26. It's a pricey RX and my insurance would not approve it until I had tried other meds. But it's one that kills the C.diff spores and does not attack your other good bacteria. Are you also taking Florastor or some type of probiotic with Saccharomyces Boulardii? I really think that has also helped me. I hope you get answers from your gastroenterologist and I wish you well in 2019.

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@pines

@ngarriso I really think you should be tested again for C.diff. With my 4th relapse of C.diff in October, my first stool sample came back negative. But after three prior bouts, I knew what it was. I had a second sample tested five days after the negative one and it came back POSITIVE. I was then prescribed Dificid (fidaxamicin) and finished that med on 10/26. It's a pricey RX and my insurance would not approve it until I had tried other meds. But it's one that kills the C.diff spores and does not attack your other good bacteria. Are you also taking Florastor or some type of probiotic with Saccharomyces Boulardii? I really think that has also helped me. I hope you get answers from your gastroenterologist and I wish you well in 2019.

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.I agree with you …I think its back, I am anxious for the specialist appointment. Ill look into the medicine mention you Thank you for your kind words.. Happy Holiday

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@ngarriso

.I agree with you …I think its back, I am anxious for the specialist appointment. Ill look into the medicine mention you Thank you for your kind words.. Happy Holiday

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@ngarriso You are so welcome. And please give us an update after your appointment. Take care.

Liked by WhisperSong

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@pines

@ngarriso You are so welcome. And please give us an update after your appointment. Take care.

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I just joined and am not sure this is how I post something or not. Anyway, Monday early morning I started having very watery diarrhea. I have an ileostomy (for 36 years). It continued all day and I called my gastro Dr and was told to go to the ER. I was dehydrated and started IV fluids. After one bag they decided to admit me. When I got to my room the dr there wanted a stool sample to test for many things (27 actually). My C.diff test came back positive. I had been on amoxicillin for a week (ear infections, bronchitis, sinus infection all at the same time), didn’t get better and was put on another antibiotic which didn’t get rid of everything and then was on augmentin for two weeks. When I got the diarrhea I’d been off antibiotics for one week. I didn’t have any pain or fever with C.diff, just diarrhea. I was started in vancomycin liquid orally and given a regular dinner. The diarrhea had started to decrease during the day and was gone by the middle of the night, I had breakfast this morning and was dismissed from the hospital with a prescription for vancomycin capsules. I feel fine, just very tired from lack of sleep in the hospital. From what I’ve been to,d by nurses I’m at an advantage by having the ileostomy because I didn’t have to keep running to the bathroom. Just had to empty the bag more frequently. It also contains the spores to some extent. I’m so hoping the vancomycin continues to work for me. My biggest concern now is passing C.diff on to someone, but my husband cleaned with bleach wipes before bringing me home and we’re very diligent about washing hands with soap and water. I see my gastro Dr when I finish round of vancomycin and they will do a repeat test.

Liked by WhisperSong

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@sandyrb

I just joined and am not sure this is how I post something or not. Anyway, Monday early morning I started having very watery diarrhea. I have an ileostomy (for 36 years). It continued all day and I called my gastro Dr and was told to go to the ER. I was dehydrated and started IV fluids. After one bag they decided to admit me. When I got to my room the dr there wanted a stool sample to test for many things (27 actually). My C.diff test came back positive. I had been on amoxicillin for a week (ear infections, bronchitis, sinus infection all at the same time), didn’t get better and was put on another antibiotic which didn’t get rid of everything and then was on augmentin for two weeks. When I got the diarrhea I’d been off antibiotics for one week. I didn’t have any pain or fever with C.diff, just diarrhea. I was started in vancomycin liquid orally and given a regular dinner. The diarrhea had started to decrease during the day and was gone by the middle of the night, I had breakfast this morning and was dismissed from the hospital with a prescription for vancomycin capsules. I feel fine, just very tired from lack of sleep in the hospital. From what I’ve been to,d by nurses I’m at an advantage by having the ileostomy because I didn’t have to keep running to the bathroom. Just had to empty the bag more frequently. It also contains the spores to some extent. I’m so hoping the vancomycin continues to work for me. My biggest concern now is passing C.diff on to someone, but my husband cleaned with bleach wipes before bringing me home and we’re very diligent about washing hands with soap and water. I see my gastro Dr when I finish round of vancomycin and they will do a repeat test.

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@sandyrb Sounds like you will have control of things at home. Hand washing and using bleach or Clorox wipes is the key. In 2018, I went through 4 bouts of Cdiff. The first med they gave me, Flagyl, did nothing to kill the Cdiff spores. The second relapse, I was given Vancomycin for 10 days. The third relapse, I did the Vanco taper and I was great for 3 weeks before my 4th relapse. I was then given Dificid for 10 days. Deficid only kills the Cdiff spores and does not affect the good bacteria. I think part of my problem was Cdiff really took over my body with the first episode. I had never even heard of Cdiff and I thought I had the flu. Then I thought I had Ecoli because the romaine lettuce outbreak was at the same time. So I went for almost two weeks before seeking medical attention. It wasn't until I got on line and read some of the side affects from the Clindaymicin I had taken for a sinus infection, did I put two and two together. My husband and family members were around me during all four episodes and they never got sick. The key is hand washing and keeping things clean. I even wiped down the light switches, spray cans, toilets… you name it. And remember hand sanitizer does not kill Cdiff spores. It's a difficult infection and they told me the percentage of relapses went higher with each episode. I finished Dificid on Oct. 26th and I wish I would have taken it earlier. i realize the cost is so high that they want to try other meds first. I pray the Vanco works for you. My GI also has me taking Florastor daily. Take care.

Liked by WhisperSong

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@pines I hope I have things under control at home. We’re doing everything the nurses said to do. I think I was diagnosed early, hopefully. I have no diarrhea and feel fine and am wondering about going out in public. I’ve been looking online and did find that kids can go to daycare 24 hours after diarrhea has stopped. And it also said that the daycare doesn’t have to be informed the child has it. That part surprised me. I’m assuming if a child can go out, an adult should be able to. I’m glad to hear your family members didn’t get sick! Thanks for replying to my post.

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