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acres
@acres

Posts: 1
Joined: Apr 12, 2016

Trying to recover from a c.diff infection

Posted by @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

Liked by Lula, kathymeyers

REPLY

Hi @acres, welcome to Connect.
You’ve definitely come to the right place to get help and advice from others patients who may have had similar experiences to you. It is clear from your message that you are at the end of your rope. This must be so exhausting and frustrating.

I’m tagging @concernedmtnmom and @momochan who may have some thoughts for you. You may also wish to read and post a message to either of these discussion threads:

SIBO https://connect.mayoclinic.org/discussion/hi-i-have-been-suffering-from-small-intestine-bacterial-overgrowth-since-last/
H Pylori https://connect.mayoclinic.org/discussion/hello-i-was-treated-for-h-pylori-by/

Hello. After my second dose of Chemo I got C-Diff and it was very hard to get rid of it.
But I was told not to take Imodium. You need to be in the hospital and let them give you IV therapy

Hi, @acres, I’m so sorry for all you are going through. C. Diff. is notoriously difficult to get rid of and can persist through many treatments. Most people get it from a round of the antibiotics that end with -mycin, and Clindamycin in the worst offender. Flagyl and Vancomycin are horrible Rxs, but they can work (they probably gave you that weird taste in your mouth, but that could also be undigested food or activity in your gut doing that). If they DON’T work, however, you can try Rifaximin. Rifaximin has no side effects and makes you feel human again, and works well. Keep taking the Florastor, but take the max dosage. It is the probiotic yeast S. Boulardii and it kills C.Diff. and you can take it while on treatment because it’s a yeast, so antibiotics don’t kill it.

And the VSL3 can help restore other Flora killed by the antibiotics, but you need at least 3-4 pills/day. I don’t know that taking them with Rifaximin will help, as they will be killed off by the mediciine, but right after you finish treatment, you need to load up your system with probiotics and VSL helps. Other natural sources include kefir (if you have dairy issues you can find a non-dairy one), Mountain High or Chobani yoghurt (not all yogurts have probiotics in them, but these two do…MHY has less sugar). A nutritionist can help you with finding other natural sources.

I had a family member with C. Diff. We went through it 4 times and Rifaximin helped the most–it was wonderful. It made a huge difference. A Mayo doc who gave us the Rx that took a while to get filled because it was tough to find and it was an off-label use, so try that but be prepared to persist.

Another approach is to taper off Vanco by skipping doses for a day or two to let the spores grow, then killing them off with the next dose. I wouldn’t try that without a doc’s supervision.

You must persist in finding relief, as gut infections are tough to conquer. There is a radical treatment called fecal transplant that is a miracle cure. Research that. there’s a doctor in Canada who makes pills for this, I’ll try to find his name in my notes later this week. If you can get treatment at Mayo, they are the best docs. You need support as losing weight and suffering is not an option. Good luck!

My 16 year old son needs help. He was diagnosed with C Diff Infection after taking Clindamycin. In about 6 weeks he has lost nearly 30 lbs. His Gastro Doctor prescribed Flagyl to treat C Diff but it had horrible side effects. After finishing his Flagyl we started him on Phillips Brand Probiotics. His diarrhea has started back. He is depressed. He has no appetite still. Please give us advice. I’m familiar with other antibiotics to treat C Diff and I’m familiar with fecal transfer. We are in Central Alabama and have been to hospitals 3 times. They just send him home. We have seen a Gastro Doctor. He is not concerned. My son is very sick. Any advice?

Hello @tammy1pike,

I’m sorry to hear about your son, and as a parent I can only imagine how worried you must be. You have come to the right place to talk with people who have similar experiences and to get support from members who understand what you are going through.
You will notice that I moved your post to the Digestive Health group, since C. diff or Clostridium difficile is an infection associated with the intestine, and I’m hoping you can connect with fellow members in this group.

Here’s some information about C.diff from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/c-difficile/symptoms-causes/syc-20351691
I’d also like to invite @kyjeanne @smartchick43 @concernedmtnmom @dodgerblu818311 @momochan, who may have some thoughts for you.

@upartist, in a previous post you mentioned, “Spores in the c-diff group causing constipation versus diarrhea ) can possibly be reduced by ingesting a simple daily dose of organic coconut oil , 1 and 1/2 tsp placed in a smoothly or other food along with a well rounded Diet of course. This is unsubstantiated, but safe. Achieving results will take a bit of time.”
Do you have any suggestions that might help @tammy1pike‘s son?

Here’s a story and a video by Mayo Clinic gastroenterologist, Dr. Mark Bartlett, which I would sincerely encourage you to view:
https://connect.mayoclinic.org/newsfeed-post/champion-spotlight-lifestyle-vlogger-franceska-garza-276ce1/
https://connect.mayoclinic.org/newsfeed-post/are-fecal-transplants-effective-in-children-with-ibd-1/
momochan to join this discussion, and share their experience with this infection.

Fecal transplants are becoming increasingly popular in treating C.diff infections; @tammy1pike, have you asked the doctors about this? Have you considered getting a second opinion?

@tammy1pike

My 16 year old son needs help. He was diagnosed with C Diff Infection after taking Clindamycin. In about 6 weeks he has lost nearly 30 lbs. His Gastro Doctor prescribed Flagyl to treat C Diff but it had horrible side effects. After finishing his Flagyl we started him on Phillips Brand Probiotics. His diarrhea has started back. He is depressed. He has no appetite still. Please give us advice. I’m familiar with other antibiotics to treat C Diff and I’m familiar with fecal transfer. We are in Central Alabama and have been to hospitals 3 times. They just send him home. We have seen a Gastro Doctor. He is not concerned. My son is very sick. Any advice?

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As I mentioned in the post above from April 13, 2016, Rifaximin might make him feel better right away. But FMT (fecal microbiota transplant) is a miracle cure for C. Diff. It is used to treat persistent reinfection and it works! We had to go to the Rochester, Minnesota clinic to get it because that’s where their pediatric GI clinic is. Not sure if other doctors do it in AL. You might try Rifaximin first if your doc will prescribe it. We saw fast relief, but we got on it 3 wks before the transfer and then we were home free. It’s a lot of expense to go to Mayo, but once you get there, you will be so relieved. My daughter has been healthy for 3 years now, and life is great. Though any tummy upset makes me worry, she’s never had a relapse. We avoid anyone on antibiotics and i use a lot of industrial bleach around the house, but so far so good!

The most important thing is to persist. Some doctors tend to think “kids are resilient” and are content to let things drag on. You need to insist on the best possible treatment until he’s better. He does not need to suffer and it’s a dangerous infection that needs attention. Hang in there and get a new doctor that specializes in C. Diff.

Last, Flagyl and Vancomycin work on C. Diff but they are awful on your body. Rifaximin was gentler and effective. But the FMT is the lasting cure. Online school is a good option if he’s too sick to attend. Many school districts have to provide it if the student has medical reasons for missing school. Advocate, persist, and take care of yourself. You got this!

@tammy1pike

My 16 year old son needs help. He was diagnosed with C Diff Infection after taking Clindamycin. In about 6 weeks he has lost nearly 30 lbs. His Gastro Doctor prescribed Flagyl to treat C Diff but it had horrible side effects. After finishing his Flagyl we started him on Phillips Brand Probiotics. His diarrhea has started back. He is depressed. He has no appetite still. Please give us advice. I’m familiar with other antibiotics to treat C Diff and I’m familiar with fecal transfer. We are in Central Alabama and have been to hospitals 3 times. They just send him home. We have seen a Gastro Doctor. He is not concerned. My son is very sick. Any advice?

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I also just found this info from an email I received from a doctor in Alberta, Canada, Thomas Louie, who creates pills from the FMT donor. I wrote him years ago to ask him to take us as a patient, but here’s more info: “There is a 60% chance of escape from recurrence with rifaximin, so let’s hope it works. It needs to given for at least 14 days, prefer a bit longer. Fidaxomicin also offers escape, but peds indications not there yet, though there is no technical reason why one cannot take it. Used as a taper by stu Johnson in Chicago.” Hope this helps–at least you have a couple Rx’s to try. There have been articles written on his work, so you might research him. Many hospitals have research libraries open to the public, so they might be a resource as well.

@tammy1pike

My 16 year old son needs help. He was diagnosed with C Diff Infection after taking Clindamycin. In about 6 weeks he has lost nearly 30 lbs. His Gastro Doctor prescribed Flagyl to treat C Diff but it had horrible side effects. After finishing his Flagyl we started him on Phillips Brand Probiotics. His diarrhea has started back. He is depressed. He has no appetite still. Please give us advice. I’m familiar with other antibiotics to treat C Diff and I’m familiar with fecal transfer. We are in Central Alabama and have been to hospitals 3 times. They just send him home. We have seen a Gastro Doctor. He is not concerned. My son is very sick. Any advice?

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Hi @tammy1pike! I am from the North Alabama area and my daughter attends college at a major university in Central Alabama. This is her 3rd round of cdiff in 1 years’ time. We literally got the results back this morning and when I expressed my concern that this is her 3rd round, the doc office nurse suggested that maybe she see an Infectious Disease Specialist. We will be setting her up with a new GI doc near her college town after the first of the year and will also look into Infectious Disease doc down there as well. While I don’t have anything useful to add to the discussion I would just like to connect via this route and gather info on everyone else’s experiences. Hope your son gets better very soon.

@tammy1pike

My 16 year old son needs help. He was diagnosed with C Diff Infection after taking Clindamycin. In about 6 weeks he has lost nearly 30 lbs. His Gastro Doctor prescribed Flagyl to treat C Diff but it had horrible side effects. After finishing his Flagyl we started him on Phillips Brand Probiotics. His diarrhea has started back. He is depressed. He has no appetite still. Please give us advice. I’m familiar with other antibiotics to treat C Diff and I’m familiar with fecal transfer. We are in Central Alabama and have been to hospitals 3 times. They just send him home. We have seen a Gastro Doctor. He is not concerned. My son is very sick. Any advice?

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@breed28 Hi! So sorry to hear about your daughter’s CDiff Infection! It is horrible on the patient and on us, as parents! Since my post on Mayo, I researched and finally found a wonderful doctor for my son. Her name is Dr. Keta Vaidya and she is at Digestive Disease Center in Huntsville, AL. My son had already taken a round of Flagyl (which made him sicker than the actual C Diff), and he took Vancomycin next which offered temporary results. On Dec. 21, my son had a Fecal Microbia Transplant at Huntsville Hospital by Dr. Vaidya. It was simple, hassle-free, pain-free for him and was an immediate answered prayer!! After recovering for about an hour (to let the new, healthy feces absorb into his colon and redistributing good flora bacteria, he was a different child! His smile came back immediately and he even ate a steak dinner on our way home! He has not had one C Diff symptom since. Now, he is working on weight gain. He lost 40 lbs in about 8 weeks so he has a road ahead but is great! Please consider Dr. Vaidya. She is remarkable! Best wishes and thank you for your inquiry. Prayers that your daughter feels better quickly! This disease is not to be taken lightly. Let me know if I can help.

@tammy1pike

My 16 year old son needs help. He was diagnosed with C Diff Infection after taking Clindamycin. In about 6 weeks he has lost nearly 30 lbs. His Gastro Doctor prescribed Flagyl to treat C Diff but it had horrible side effects. After finishing his Flagyl we started him on Phillips Brand Probiotics. His diarrhea has started back. He is depressed. He has no appetite still. Please give us advice. I’m familiar with other antibiotics to treat C Diff and I’m familiar with fecal transfer. We are in Central Alabama and have been to hospitals 3 times. They just send him home. We have seen a Gastro Doctor. He is not concerned. My son is very sick. Any advice?

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Welcome to Connect @breed28. Sharing your or your loved ones’ health journey is one of the most valuable aspects of this Connect community. It helps to know that you’re not alone – thank you for telling us about your daughter.

@tammy1pike, we are so happy to know that your son is feeling better! Fecal transplant is a rapidly emerging therapy, and I’m certain fellow Connect members would appreciate learning more about it; would you be able to share a few details? How long did the process take? Did your son have to undergo any “prep work” before the procedure?

@tammy1pike

My 16 year old son needs help. He was diagnosed with C Diff Infection after taking Clindamycin. In about 6 weeks he has lost nearly 30 lbs. His Gastro Doctor prescribed Flagyl to treat C Diff but it had horrible side effects. After finishing his Flagyl we started him on Phillips Brand Probiotics. His diarrhea has started back. He is depressed. He has no appetite still. Please give us advice. I’m familiar with other antibiotics to treat C Diff and I’m familiar with fecal transfer. We are in Central Alabama and have been to hospitals 3 times. They just send him home. We have seen a Gastro Doctor. He is not concerned. My son is very sick. Any advice?

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@kanaazpereira…. There really aren’t many more details to give. The Fecal Microbia Transplant was the same prep as a Colonoscopy. So, the day prior, the patient does a colon cleanse which was not fun because the liquid my son drank made him vomit. However, in hindsight it was worth it all. On Dec. 21, 2017 we drove 3 hours to Huntsville Hospital for my sons Fecal Transplant appointment at 7am. It was a smooth, fast procedure. It took maybe an hour because Dr. Vaidya checked his colon for ulcerative colitis as she inserted the device. Then, as she removed the device, she injected about a 12 ounce-can size amount of donated feces from a healthy patient. Of course all donated feces is tested and screened. (Watch Youtube videos to learn more. I did.) Afterwards, my son was in recovery, sedated, for about an hour so the healthy feces could absorb into his colon and allow healthy bacteria to re-colonize in his gut. After my son woke up, he was released from the hospital. It is an out-patient procedure that is fast, painless, and was immediate relief for him! He never complained of pain or discomfort. He even ate a steak dinner on our way home. He has not had one C Diff symptom ever since and today is Day 10, post-Fecal Transplant! Digestive Disease Center in Huntsville, AL; Dr. Keta Vaidya is his Doctor’s name. They are phenomenal! Please contact me if needed. Prayers to all of you dealing with C Diff Infection!! My son lost 40 lbs. in about 8 weeks due to C Diff (re-diagnosed after taking round 1 of Flagyl). He has a long way to go! He was a nearly 200- lb. baseball player. Now he weighs in low 160’s. Please keep him in your prayers as he recovers. Thank you!

@tammy1pike

My 16 year old son needs help. He was diagnosed with C Diff Infection after taking Clindamycin. In about 6 weeks he has lost nearly 30 lbs. His Gastro Doctor prescribed Flagyl to treat C Diff but it had horrible side effects. After finishing his Flagyl we started him on Phillips Brand Probiotics. His diarrhea has started back. He is depressed. He has no appetite still. Please give us advice. I’m familiar with other antibiotics to treat C Diff and I’m familiar with fecal transfer. We are in Central Alabama and have been to hospitals 3 times. They just send him home. We have seen a Gastro Doctor. He is not concerned. My son is very sick. Any advice?

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Hello everyone! I thought I would update you on my son’s progress. As I stated, he had a Fecal Microbia Transplant on Dec. 21, 2017. On our way home from this procedure he ate a steak dinner after not eating for weeks. He then would eat one meal per day, most days until about January 15, 2018 (11days ago)! Suddenly his appetite returned full force! This gave his body much needed fuel! He returned to Varsity Baseball Practice last weekend and has gone everyday since! He now feels much better! His focus is on catching up on his school work and on rebuilding muscle that he lost dyring this C-DIFF illness! He is down 40 lbs. from the first 7 weeks of showing C-DIFF symptoms. He lost muscle and was severely malnourished. However, this should give hope to anyone else out there with C-DIFF! Get control of your/your child’s treatment plan! Get involved! Pray for wisdom and for guidance! This helped me find Dr. Keta Vaidya at Digestive Disease Center in Huntsville, AL! Other doctors planned to keep prescribing multiple rounds of Flagyl and Vancomycin after my son’s C-DIFF reoccurrence. My son had no weight left to lose! He was skin & bones! My point is, you have the right to change your child’s treatment plan if you need to! Prayers and best regards to you all! Thank you to those who private messaged me about C-DIFF! It is nothing to take lightly!

I got c diff in the hospital twice. They treated it but when I went home I got it again. After my surgery for a hiatal hernia my vagus nerve was damaged so now I have gastroparesis. My digestive system does not work anymore. I still get c diff sometimes.

@citygirlannie I am so sorry to hear that you’re having so many issues with CDIFF. Have you asked your doctor about the Fecal Microbia Transplant? If your Digestive system isn’t functioning correctly it may not help, but it may help correct it? This Infection is horrible and the antibiotic Flagyl gave my son terrible side effects! They were as bad as the CDIFF symptoms. Praying you find a positive answer!

Thanks so much for the information. I will ask my doctor about The fecal microbial transplant.

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