Trying to recover from a c.diff infection

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

Please leave any information you might have on C-Difficile infections , thank you! I have many issues and C-Difficile seems to be a huge one for me. I get Constipation. I am simply terrified of my outcome on treatment. As I am older. And need Surgery for a Fribroid in my Uterus. I am past menopause age by 15 + years! Have C-Difficile after taking 3 Ceftin Antibiotic pills . Sincerely any information is highly appreciated. I have been ill for month and I am very weak right now.

Liked by WhisperSong

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Also, this is my 3rd. Time having C-Difficile. Cannot take much of anything I have Bile reflux after loosing my Gallbladder and Gastritis and having a Hiatal Hetnia. I get the C-Difficile In my Stomach first, terrible pain on left side like a fist punched me in my stomach area, then rumbling comes on full force. Horrid pain! Extreme fatigue, tachycardia when I sleep and awake for even 1 hour. Taking Florastar, #VSL 3, L. Rhaminosus, Bio-K, Natren…nothing is helping. On last ER visits with the C-Difficile they did not believe I had C-Difficile because I do not have Diarrhea. Been severely ill for 2+ years! I also have a Fractured Spine that was finally discovered in September of 2018, original MRI was misdiagnosed as a herniated disk 2+ years ago now! PCP never informed me of a X- Ray that showed my Fractured Spine in August of 2017. Have been misdiagnosed with my Uterine Fibroid for well over a year now with all sorts of other issues…I have had to see over 15+ Physicians and 7 ER visits, 4 CT with No dyes, until the December visit at the hospital they did the CT with contrast dye and it showed 1-large fibroid.

Liked by WhisperSong

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Scott I understand your fear of a Colonoscopy ! I will not survive being flushed out and wiping out all my bowels and having my electrolytes completely wiped out. I suffer from Electrolyte balances far to easy now. I simply cannot eat well enough to keep them correct! My heart goes out to you being fearful brings on Anixiety for me swiftly! Causes all sorts of dangerous issues, I cannot even have blood pressure meds without throwing electrolytes off and having Tachycardia. I passed out from have the Contrast dye when they did the CT scan in December 2018. About 4 hours after my blood sugar dropped to low. After having contrast dye it is highly igly advise-able to have a full IV of Saline solution given..I had a IV line already to use the Ambulance driver inserted, they never gave me any fluids. Nor did they check my sugar levels after EMT drivers explained they gave me a tube of glucose gel as I my blood sugar was low reading of ..45. It was not the best day, but finding out one of my issues was good. I was rushed me out of ER after the Scan looked ok! Which I understood, they needed a bed.
Scott hope you doing better. I pray everyone is! Thank you each for explaining your issues and enlightening all of us here. Your each one highly appreciated. Thank You.
Sorry so many post everyone!

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@marlaxyz

Since you mentioned dietary issues I am dropping this prepared note into the chain. You may take it for what it is worth or simply delete. If you would like more information I can explain what I did (lots of phone calls and food logs ); you may write me directly if you want any of the back story.

My Symptoms – vomiting, nausea, achy stomach, bloat, weakness. Trouble talking, thinking, listening. Pain in left shoulder. All symptoms started slowly and slowly resolved after vomiting at the three to four hour mark. Had asthma as a child. Recent problems started 3 – 4 years ago. I am in very late middle age. Average weight. My symptoms are almost completely under control now and I can look back and figure what I did wrong and remember for next time.
Medical – Had “every test.” GI doctor finally told me to just “avoid trigger foods.”Problem: Couldn’t figure out what trigger foods were. Turned out the problem for me was the preservatives IN the food
Solution: avoid preservatives, especially sulphites which are rarely labeled. I am ever vigilant. Note: If I do happen to eat too much or the wrong thing it sometimes helps to stand up, walk around, take a shower, take deep breaths. Sometimes.

What I Can Eat

Beef, organic chicken, eggs, food after removing skins (apple, avocado, watermelon, etc) canned tuna, maybe lamb. Salad bar items not otherwise excluded. Also yogurt, milk, cheese, fresh fruits and veggies (limited quantities), ice cream (yay). Also cookies, cake – all that stuff you want to keep away from. I ask for a cheese plate for dessert . One – two tablespoons of just about anything. Most food in Europe or Africa. TV dinners – Swanson’s Hungry Man, Amy’s Organic. Always small meals and snacks. Sips of liquids at meals only. Between meals, fine. (I have only ever drunk water or coffee, don’t know about other liquids.) Am never hungry and amazingly have lost some weight.

What I Can NOT Eat

Marinated beef, NON organic chicken, PORK!, most seafood. Canned or frozen or otherwise preserved fruits or veggies or potatoes. Eggs that pour from a carton. Cruciferous vegetables (sort of figured this out) – even fresh. Any of these things that come in a package (note: this is a simple question to ask in a restaurant –“is ______fresh or does it come to you in a bag or is it frozen from another location?) Canned food (except tuna), boil in bag rice, large meals, Worcester Sauce (the worst!). Meal kits (especially Blue Apron). Spicy or fried foods. Large amounts of water or coffee – 8 oz or so – at meals. Wine. Don’t know about other alcoholic beverages. My list could be much longer; I have enough food to satisfy me with my “Can Eat” list. You will want to make you own list.

Again, you may write me directly if you want any of the back story.

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What a wonderful list! I pretty much eat the same! Only gluten free. And no beef! I have no Gallbladder lost in 2012. They do make a Soy sauce that is not real Soy. Taste the exact same. I never eat but a tiny amount, maybe 1/4 teaspoon or less. Thyroid issues, cause my Hypothyroid after loosing Part of Thyroid 20+ years ago!
Thank you for the list.

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@baby1949

Also, this is my 3rd. Time having C-Difficile. Cannot take much of anything I have Bile reflux after loosing my Gallbladder and Gastritis and having a Hiatal Hetnia. I get the C-Difficile In my Stomach first, terrible pain on left side like a fist punched me in my stomach area, then rumbling comes on full force. Horrid pain! Extreme fatigue, tachycardia when I sleep and awake for even 1 hour. Taking Florastar, #VSL 3, L. Rhaminosus, Bio-K, Natren…nothing is helping. On last ER visits with the C-Difficile they did not believe I had C-Difficile because I do not have Diarrhea. Been severely ill for 2+ years! I also have a Fractured Spine that was finally discovered in September of 2018, original MRI was misdiagnosed as a herniated disk 2+ years ago now! PCP never informed me of a X- Ray that showed my Fractured Spine in August of 2017. Have been misdiagnosed with my Uterine Fibroid for well over a year now with all sorts of other issues…I have had to see over 15+ Physicians and 7 ER visits, 4 CT with No dyes, until the December visit at the hospital they did the CT with contrast dye and it showed 1-large fibroid.

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Have you investigated Fecal Matter transfer? This is having excellent results in curing C Diff?

Liked by pines

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Had c diff, after taking clindamycin, was treated with flagyl which cleared up the c diff, however still had intestinal & bowel problems. Everything returned to normal after taking prescription anti fungal diflucan twice, one week apart. Doing great.
Note: bowels had not been quite right for about three months prior to taking clindamycin.

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@pines

@tina1125 I finished the Deficid for my 4th bout of Cdiff just one month ago. It hit me the hardest of all four and I lost 10 pounds during the first two weeks with it. And unfortunately, the first week the test came back negative so I had to go for almost 2 weeks before the test was positive for Cdiff. But during the past month, I've put almost all the weight back on. I wish I could keep it off and take off another 30 or 40 pounds. I'm sorry to hear you continue to lose weight plus muscle tone. I wouldn't wish Cdiff on my worst enemy. And I've never paid so much attention to BM's. 🙂

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Am I the only that has gained weight during my 8 month or so bout of C-diff, it did not get diagnosed until this week, but I've been battling diarrhea every day but I feel like my stomach has this hole in it and I'm just starving all the time. I'm currently on Vanco – 2 days in and my bloating is better, but still not great and I'm still starving!

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@femalegolfer

Am I the only that has gained weight during my 8 month or so bout of C-diff, it did not get diagnosed until this week, but I've been battling diarrhea every day but I feel like my stomach has this hole in it and I'm just starving all the time. I'm currently on Vanco – 2 days in and my bloating is better, but still not great and I'm still starving!

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@femalegolfer During my last Cdiff episode, which was last October, I lost 10 pounds in two weeks. After taking Deficid, it cleared up the Cdiff however, I gained the 10 pounds back during the holidays.

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@laura39

Had c diff, after taking clindamycin, was treated with flagyl which cleared up the c diff, however still had intestinal & bowel problems. Everything returned to normal after taking prescription anti fungal diflucan twice, one week apart. Doing great.
Note: bowels had not been quite right for about three months prior to taking clindamycin.

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Why the fungle meds

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@tammy1pike

@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.

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Hi Tammy,

My 4 year old daughter just tested positive for C Diff……We are a little over 1 week past her first 14 day flagyl regimen and the diarrhea has returned. I am getting very concerned. I am from North Alabama too, so Huntsville is just right down the road for me, does the doctor you mentioned accept patients as young as 4? Additionally, does anyone else have any experience/advice for someone with a 4 year old kid with C Diff?

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@pines

@femalegolfer During my last Cdiff episode, which was last October, I lost 10 pounds in two weeks. After taking Deficid, it cleared up the Cdiff however, I gained the 10 pounds back during the holidays.

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@pines. Took my 10 day on vanco, retested and still positive! Haven't heard from Dr yet to see what next round might be.. when should i ask to be referred to a specialist??

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@femalegolfer

@pines. Took my 10 day on vanco, retested and still positive! Haven't heard from Dr yet to see what next round might be.. when should i ask to be referred to a specialist??

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@femalegolfer I would ask to see a GI right now. The vancomycin didn't work for me either. I did the 10 days first and then I also did the vanco pulse & tapper for 6 weeks. I was good for 3 weeks after that. But then I had my 4th relapse and that's when I asked for Dificid (fidaxamicin). I had a friend who had taken the Dificid after her second Cdiff and it worked for her also. It's pricey and I'm sure that's why they wait and try other meds first. You also should be taking S. Boulardii. It's a probiotic that goes straight to the colon and it's not dissolved by the acid in your stomach. If you just tested positive again, what's the plan your doctor wants you on?

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@pines

@femalegolfer I would ask to see a GI right now. The vancomycin didn't work for me either. I did the 10 days first and then I also did the vanco pulse & tapper for 6 weeks. I was good for 3 weeks after that. But then I had my 4th relapse and that's when I asked for Dificid (fidaxamicin). I had a friend who had taken the Dificid after her second Cdiff and it worked for her also. It's pricey and I'm sure that's why they wait and try other meds first. You also should be taking S. Boulardii. It's a probiotic that goes straight to the colon and it's not dissolved by the acid in your stomach. If you just tested positive again, what's the plan your doctor wants you on?

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@pines .. i am taking the probiotic like you had suggested. I actually do feel better and not as bloated and not nearly as many trips to the bathroom. My results just came in this morning, i can view them online and i haven't heard from my Dr. yet..
So I'm not sure what their suggestion will be. The vanco cost my insurance $850… I thought that was ridiculous! I wanted to hear from you and research before the Dr calls. Thank you!

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@femalegolfer

@pines .. i am taking the probiotic like you had suggested. I actually do feel better and not as bloated and not nearly as many trips to the bathroom. My results just came in this morning, i can view them online and i haven't heard from my Dr. yet..
So I'm not sure what their suggestion will be. The vanco cost my insurance $850… I thought that was ridiculous! I wanted to hear from you and research before the Dr calls. Thank you!

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@femalegolfer Yes, Vanco is also expensive. Dificid was over $4,000 for 20 pills. My co-pay was $900. I was shocked.

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@pines YIKES! If it works – I would feel better – I would for sure pay the money…Waiting to hear from the Dr. is killing me.

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