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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@guthealth

I thought I posted a reply but it did not go through. Yes, to your question, but it is a process of trial and error. My GI doctor thinks I have SEBO and is treating me for that but I don’t think he knows for sure. They are treating symptoms. My next steps are CT scan of gut and possible colonoscopy. It is a long process to get answers and it is frustrating and isolating. I recently found blood in my stool which the doctor said could be the inflammation and diarrhea I have suffered for twelve weeks, I don’t have anemia at this point. I try to keep a positive attitude but often feel discouraged. Thanks to everyone for posting here and your support.

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I have cdiff and the doctors dont tell much ...this sight is great to learn how to deal with it

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@kanaazpereira

Hello @rtg103,

Welcome to Connect. You may notice that I moved your discussion and combined it with this existing discussion as I thought it would be beneficial for you to be introduced to other members who are talking about c. diff and 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.

I'm so sorry to hear about your anxiety, and glad that you've joined the Connect community - you will see that you aren't alone. Here is some information from Mayo Clinic that you may wish to read:
https://www.mayoclinic.org/diseases-conditions/c-difficile/symptoms-causes/syc-20351691

Another great resource is the Gastroenterology & GI Surgery Page on Connect, where Mayo Clinic experts talk about fecal transplants and much more: https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/

@rtg103, could you share a bit about your diet before your symptoms, and at present?

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My diet before c diff was not good. I ate out a lot. Mostly fast food. I drank soda, ate cookies, snack cakes, and potato chips daily. After c diff my only liquid intake is water and kefir probiotic drink. I eat fruits, vegetables, and lean meats. I snack on sugar free candies. I have developed folliculitis on my face and scalp as well as the white patch on my tongue and c diff. I am on my last day of my first (and hopefully last) course of vanco antibiotics. I take klonopin 0.5mg for my anxiety. I'm thinking of going to an infectious disease specialist and a nutritionist to help get me back on track. I'm also going to talk with my pharmacist about additional probiotics and prebiotics to help.

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@rtg103

My diet before c diff was not good. I ate out a lot. Mostly fast food. I drank soda, ate cookies, snack cakes, and potato chips daily. After c diff my only liquid intake is water and kefir probiotic drink. I eat fruits, vegetables, and lean meats. I snack on sugar free candies. I have developed folliculitis on my face and scalp as well as the white patch on my tongue and c diff. I am on my last day of my first (and hopefully last) course of vanco antibiotics. I take klonopin 0.5mg for my anxiety. I'm thinking of going to an infectious disease specialist and a nutritionist to help get me back on track. I'm also going to talk with my pharmacist about additional probiotics and prebiotics to help.

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How do you get rid of follicitice

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@gina1963

I have cdiff and the doctors dont tell much ...this sight is great to learn how to deal with it

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I honestly don't think the doctors know much. All they seem to know is what they can read. Many don't seem to care in my opinion.

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@taxpayinghorse

I honestly don't think the doctors know much. All they seem to know is what they can read. Many don't seem to care in my opinion.

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I think doctors know but don’t have the time to sit down and think. You typically have ten to fifteen minutes of their time, and only God knows how many patients they see every day. I think health care in this country has come to a bad place. Hard to get appointments, hard to schedule procedures and weeks go by waiting for a diagnosis. I am in that situation now. I finally got to see a GI who surmised by my symptoms that I have SIBO, put me on another round of antibiotics, and wants to do a CT scan of my GI. Every time I talk to a professional I get more questions than answers. I live with daily anxiety thinking I have an autoimmune disease or cancer and the clock keeps ticking. My PCP told me that the best diagnostic tool was the person’s response to treatment which will then guide the types of tests that are ordered as symptoms resolve or not. Yesterday I saw blood in my stool and freaked out. Yet my PCP said he was less concerned about that than if I had anemia. Ultimately we have to trust on someone who can guide us through this scary process.

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@rtg103

My diet before c diff was not good. I ate out a lot. Mostly fast food. I drank soda, ate cookies, snack cakes, and potato chips daily. After c diff my only liquid intake is water and kefir probiotic drink. I eat fruits, vegetables, and lean meats. I snack on sugar free candies. I have developed folliculitis on my face and scalp as well as the white patch on my tongue and c diff. I am on my last day of my first (and hopefully last) course of vanco antibiotics. I take klonopin 0.5mg for my anxiety. I'm thinking of going to an infectious disease specialist and a nutritionist to help get me back on track. I'm also going to talk with my pharmacist about additional probiotics and prebiotics to help.

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Ciclopirox (1%)shampoo cured my felliculitis. You need an Rx. Use one or two tsp. Lathers well. Use for 4 werks with 3 days between each use. I need this particularly in hot weather. Good luck.

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@guthealth

I think doctors know but don’t have the time to sit down and think. You typically have ten to fifteen minutes of their time, and only God knows how many patients they see every day. I think health care in this country has come to a bad place. Hard to get appointments, hard to schedule procedures and weeks go by waiting for a diagnosis. I am in that situation now. I finally got to see a GI who surmised by my symptoms that I have SIBO, put me on another round of antibiotics, and wants to do a CT scan of my GI. Every time I talk to a professional I get more questions than answers. I live with daily anxiety thinking I have an autoimmune disease or cancer and the clock keeps ticking. My PCP told me that the best diagnostic tool was the person’s response to treatment which will then guide the types of tests that are ordered as symptoms resolve or not. Yesterday I saw blood in my stool and freaked out. Yet my PCP said he was less concerned about that than if I had anemia. Ultimately we have to trust on someone who can guide us through this scary process.

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I highly recommend a learning, teaching center of excellence such as Mayo Clinic.

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@taxpayinghorse

3 Weeks? I have been going though this for over 3 years. I wake up in the morning, feel as if I have food poisoning. Diarrhea and loose stools all morning and after noon with horrible cramping and severe pain in my intestines. By afternoon on a "good day" the diarrhea stops but my stomach feels as if it has been kicked repeatedly by a mule because the intestines are so stripped. My stomach hurts so bad even to move or walk. I usually just want to sleep. On worse days, this goes on all day, with the cramping and stomach pain and running to the bathroom usually nothing coming out by afternoon. I lay in my recliner and try to rest. That is the only thing that seems to help any. It was worse 3 years ago then it is now. My bms are very narrow and soft if it isn't all watery and loose. I have bms starting in the early morning, (waking me up at 5am or earlier) I can not go back to bed because once it starts it doesn't stop. If I am lucky by 2pm, the pain is still very bad but the diarrhea has stopped. I usually don't have another bm till the next morning when all hell breaks out again. The really bad days I wear pull ups and wish for death because the pain is so bad and I can't make it to the bathroom on time. As for it effecting my "social life"....what is that? I could care less about a social life. I just wish the pain would stop. Here is my theory of what I think has happened. I kept having bladder infections. The VA (Veteran's Hospital) Doctors kept giving me antibiotics. Dr. Bender at the VA hospital in Gainesville did me the worse damage, he left me on antibiotics for 2 solid years. I think that has permanently damaged my intestines and even my bladder now. I also have horrible bladder spasms. Bladder Spasms don't stop for hours and it is worse then any tooth ache you can imagine. It feels as if your bladder if OVER FULL and you really need to urinate. One of the things "Dr." Bender told me to do for the bladder spasms was to drink a cup of water with a couple of tablespoons of baking soda put in it. When you drink this, it makes you throw up. It doesn't help at all. I believe this damage is permanent. I have been able to go 3 years without taking any oral or intravenous antibiotics. I go to extraordinary lengths to avoid colds and infections. That is another entire story. I believe the antibiotics has caused this damage. The pharmaceutical companies have not done any studies on what long term use and over use of antibiotics does to people. IF they did they would be sued. I may be wrong but that is all I can come up with. Now what has helped me is this: I take Calcium Polycarbophil 625 mg tablets. I take 9 a day. 3 of them with each meal. It is very important to eat something, it only gets worse if you don't eat I find. On my really bad days I eat only saltine crackers and sometimes a can of Campbells Chicken Noodle soup. It seems to help. Another thing that I think has made a big difference is "Beano", Walmart makes there own brand and you take less of them. I take one of the Walmart Brand 3X a day. Lastly I take 9 to 12 pills a day of Probiotic 10. I can't always afford it. The VA won't pay for most of my meds. I buy the Probiotic from Costco. They have the best prices. I have had people tell me to eat Kimchee (it is fermented cabbage) and drink Apple Cider Vinegar. DON'T DO IT. I tried it and thought I was going to die. The Calcium Polycarbophil and Beano helps the most. I don't really know or can tell if the Probiotic 10 is helping at all. One thing that did seem to make it worse were my vitamins. I have stopped taking all my vitamins. Another thing that will really make it worse is greasy, friend foods, cabbage, cauliflower and ice cream and milk. I hope this helps and thank you for listening to me whine.

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I highly recommend
A learning, teaching, research facility like Mayo Clinic. Saved my life.

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@musicflowers4u

I highly recommend
A learning, teaching, research facility like Mayo Clinic. Saved my life.

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I wish a mayo clinic was close to me

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I'm having similiar problems .. I also have eosinophils ESOPHAGUS...chest hurts terribly also have HIATIAL HERNIA..can barely breathe after going up a flight of steps...do u go through this

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