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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@euqcaj

I had wondered about that mucous also. I had it and it has disappeared for the most part and I'm 4 months into recovery. After I took the Vanco they tested me again to make sure the C-diff was gone, which it was. I was hoping they did a follow-up test on you also. That, to me, would seem very important. Even though the C-diff is gone, it is a slow recovery. I'm exhausted from taking Bisacodyl every three days just so I can eliminate waste. I have always had a slow transit time due to a longer intestine and the gastro doctor wants me to continue using the Bisacodyl for now. If you are able to "go" on your own, that is wonderful. In my experience, that mucous you are seeing will disappear eventually. So patience, take care of yourself as best you can, rest when you need to, (this was a difficult one for me but so important because you are healing and I'm sure you're energy levels are not the same as before C-diff), and trust you will get better. I hope you get/had a follow-up test for C-diff. And after that, just remember this is a slow recovery. I wish someone had told me that.

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Thank you very much for your reply. Your words comforted me. I really wish they would explain the healing process more to patients. It’s not right. My stomach was angry last night after some chicken and rice. It was very bizarre. My pcp wanted to see me today. She ordered another cdiff test along with other tests on the stools as well. I won’t be able to do those until Monday though because of the weekend. She put in a referral for me to see a GI and a therapist. So hopefully I will find out what’s going on. I hope it’s just PI-IBS.

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@cmt25

Thank you very much for your reply. Your words comforted me. I really wish they would explain the healing process more to patients. It’s not right. My stomach was angry last night after some chicken and rice. It was very bizarre. My pcp wanted to see me today. She ordered another cdiff test along with other tests on the stools as well. I won’t be able to do those until Monday though because of the weekend. She put in a referral for me to see a GI and a therapist. So hopefully I will find out what’s going on. I hope it’s just PI-IBS.

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That’s great to hear that you will be repeating the c Diff test it is important to rule it out and make sure it’s gone. I developed a PI-IBS although I am feeling better but nowhere near normal prior to C Diff and I am 10 months into recovery. It does take a long time. I still take probiotic and too afraid to stop. Hang in there and listen to your body. It will take a long time to know what bothers your stomach. I went through a lot of scares thinking c Diff is back but thank God no. I am too afraid That I will get sick and need antibiotic I wonder if having c Diff before put us at high risk everytime we take antibiotic and I read as well that you develop antibodies for it and chances of getting it again is low once you are healed…. Who knows. It is a nightmare and I don’t wish it on anyone in this world. Please keep us posted on the results. All the best to you.

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@mhi

That’s great to hear that you will be repeating the c Diff test it is important to rule it out and make sure it’s gone. I developed a PI-IBS although I am feeling better but nowhere near normal prior to C Diff and I am 10 months into recovery. It does take a long time. I still take probiotic and too afraid to stop. Hang in there and listen to your body. It will take a long time to know what bothers your stomach. I went through a lot of scares thinking c Diff is back but thank God no. I am too afraid That I will get sick and need antibiotic I wonder if having c Diff before put us at high risk everytime we take antibiotic and I read as well that you develop antibodies for it and chances of getting it again is low once you are healed…. Who knows. It is a nightmare and I don’t wish it on anyone in this world. Please keep us posted on the results. All the best to you.

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I've had the same concerns/worries about having to take another antibiotic down the road. And I agree that the doctors don't tell us enough about recovery from C-diff. Don't they know? I find that even if I ask direct questions I do not get direct answers. Maybe part of that is because every person heals differently, I don't know. I originally thought that once I felt better from the initial awful experience of C-diff, I would get better, just like any other infection but I've found this to be different with C-diff and it's a slow recovery as we've all talked about. AND the long -term effects are still a question to me. But we'll all keep the faith and be our own best advocate.

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@cmt25

Thank you very much for your reply. Your words comforted me. I really wish they would explain the healing process more to patients. It’s not right. My stomach was angry last night after some chicken and rice. It was very bizarre. My pcp wanted to see me today. She ordered another cdiff test along with other tests on the stools as well. I won’t be able to do those until Monday though because of the weekend. She put in a referral for me to see a GI and a therapist. So hopefully I will find out what’s going on. I hope it’s just PI-IBS.

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I'm happy to hear you're going to have another C-diff test. It will bring some answers and hopefully a bit more peace of mind. I would love to know what they tell you. Ask as many questions as you can. I will be thinking of you and hoping for the best. I hope you get through the weekend more comfortably.

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@euqcaj

I've had the same concerns/worries about having to take another antibiotic down the road. And I agree that the doctors don't tell us enough about recovery from C-diff. Don't they know? I find that even if I ask direct questions I do not get direct answers. Maybe part of that is because every person heals differently, I don't know. I originally thought that once I felt better from the initial awful experience of C-diff, I would get better, just like any other infection but I've found this to be different with C-diff and it's a slow recovery as we've all talked about. AND the long -term effects are still a question to me. But we'll all keep the faith and be our own best advocate.

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You are absolutely right doctors don’t tell you much about c Diff and I had to figure everything out on my own. When did you have c Diff how long ago? Did you have to go on antibiotic again for other reasons since you had c Diff?

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Find a neurogastroenterologist at a large hospital that specifically treats SIBO and motility disorders. There is one in Baltimore, Bryan Curtin, MD

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@mhi

You are absolutely right doctors don’t tell you much about c Diff and I had to figure everything out on my own. When did you have c Diff how long ago? Did you have to go on antibiotic again for other reasons since you had c Diff?

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It was just after Valentines Day this year, 2021, that I was diagnosed with C-diff. I am about 4 months into recovery. The only antibiotic that I have taken since being diagnosed with C-diff was the Vancomycin to combat the C-diff. I am concerned about any future needs, such as a dental issue, etc. (That's what started this whole nightmare was Clyndimycin being prescribed for what was thought to be a gum infection.) Thank goodness the Vanco got rid of the C-diff but I cried when I was told I had to take it, another antibiotic. I was very frightened. But it worked! No one has answered my question of where does this leave me for the future with antibiotics. I have never taken many and generally I've always been in good health but there is the occasional need for an antibiotic that everyone runs into. And that concerns me.

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@euqcaj

It was just after Valentines Day this year, 2021, that I was diagnosed with C-diff. I am about 4 months into recovery. The only antibiotic that I have taken since being diagnosed with C-diff was the Vancomycin to combat the C-diff. I am concerned about any future needs, such as a dental issue, etc. (That's what started this whole nightmare was Clyndimycin being prescribed for what was thought to be a gum infection.) Thank goodness the Vanco got rid of the C-diff but I cried when I was told I had to take it, another antibiotic. I was very frightened. But it worked! No one has answered my question of where does this leave me for the future with antibiotics. I have never taken many and generally I've always been in good health but there is the occasional need for an antibiotic that everyone runs into. And that concerns me.

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I feel the very same way and here is what I’ve learned. I too was given clindamycin for an infected sebaceous cyst. Then the C-diff took over and I’m on my second course of Vancomycin: 10 days 125 mg every 4 hours.
I’m 73. I’ve taken many antibiotics and probably unnecessarily in my life. Some preventative measures work too.
I posed that question to my doctor and he said if and when antibiotics are necessary in the future they are carefully given into a vein and in a hospital if you are sensitive to the medicine but need it. If you aren’t concerned then there are other things besides the Clindamycin which you might take. I am sensitive to just about everything. I take special measures: wear a mask during flu season, use anti germicidal wipes, wash hands. There are oral dentist prescribed rinses that help get rid of minor gum infections and can act as a preventative.
Hope some of this helps.

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@mhi

You are absolutely right doctors don’t tell you much about c Diff and I had to figure everything out on my own. When did you have c Diff how long ago? Did you have to go on antibiotic again for other reasons since you had c Diff?

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Why is Clindamycin still on the market? It’s the antibiotic my husband took many years ago prior to his battle with C-diff, but doctors and dentists are still prescribing it with disastrous results for so many people.
After the C-diff was gone, my husband needed to be near a bathroom for months until the Questran stabilized his system and he now lives pretty normally.
He has the same concern about any antibiotic use. Only once did he require an antibiotic. His doctor prescribed azithromycin and he tolerated it well, but he also drank lots of kefir and took probiotics.

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@lengel

Why is Clindamycin still on the market? It’s the antibiotic my husband took many years ago prior to his battle with C-diff, but doctors and dentists are still prescribing it with disastrous results for so many people.
After the C-diff was gone, my husband needed to be near a bathroom for months until the Questran stabilized his system and he now lives pretty normally.
He has the same concern about any antibiotic use. Only once did he require an antibiotic. His doctor prescribed azithromycin and he tolerated it well, but he also drank lots of kefir and took probiotics.

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You are absolutely right. I don’t know what this specific antibiotic is still prescribed today. I am glad things worked out for your husband! I heard it take a long time for the system to regulate and I am still waiting for the day I feel 100%. 10 months later and I still take probiotic I am too afraid to stop! Thank you for sharing the story about your husband needing to take another antibiotic and being fine with it that gives me hope!

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