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

@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.

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:(

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.

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.

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.

@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?

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?

@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.

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.

So sorry to hear about your problems. Have you tried elemental drinks? I drink something called EleCare Jr. which is an elemental formula designed for children and it is very mild. Comes in different flavors. I dropped twenty pounds in three months and these elemental drinks are helping me to put weight back. I could drink them even during my worst flares with diarrhea. Nutrients are broken down to enzymes so your body absorbs them very quickly. It is manufactured by Abbott and you can purchase the cans through their website. Comes in a powder you mix with water. Highly recommend them. I could not each much of anything for weeks and these elemental shakes stopped my weight loss. Hope you feel better soon and perhaps others can also give you advice regarding how they dealt with the weight loss. By the way, I am in my sixties. Reason my nutritionist recommended this particular brand is because even very young and sick children can tolerate it.