We recommend the interesting article in today's Wall Street Journal called: Rising Foe Defies Hospitals' War on 'Superbugs'
(Austin , Tx, Usa)
I had a screening colonoscopy, which I should never have had. I was not having any trouble at all with my stomach and could eat anything that I wanted. I was Just talked into it by my doctor. I am 77 years old. After the procedure, the doctor told me that everything looked fine. He removed one polyp and said that I had a little diverticulosis, which anyone my age would have.
About three or four days after the procedure, I began to have stomach pains in my upper abdomen that progressed to really being painful. I called the doctor and told him and he ordered me to come in for a CAT scan. I did the prep the next day and went in. After the scan he called and said that I had diverticulitis, which I had never had before. I really think there was something done to my colon that should not have been done. He gave me levaquin and flagyl to take for 14 days. After this I continued to have diarrhea and cramping. I called him again and he ordered a stool culture, which I did the next two days.
After this, he called and said that I had C. Diff. I was devastated, all this for having a colonoscopy that I did not want. I am now on Flagyl. I refused to take the vancomycin, because it was so expensive. Even with my insurance it was going to cost me $500. He agreed to me taking the Flagyl if I took two probiotics with it. He told me to get Florastor and take four times a day and Flora Q to take two times a day. The pharmacist had to order it for me. I have been on this for two days now and have not seen any relief yet. The antibiotic is causing more diarrhea than the C. Diff. I would advise anyone that is not having any trouble to never have a screening colonoscopy. At my age, I should have known better. My family and the doctor was greatly encouraging me. My gut was telling me I did not need it. I will listen to my gut next time.
Just wanted to write and let you know that I also had C Diff. I don't have it anymore. And I had a very serious case of it.
It (C Diff) was not responding to lower doses of apple cider vinegar (w/the mother inside) and peppermint essential oil so I had to increase the dose and then it became effective. Sometimes you do have to use a stronger does to kill some things. This is what I used and it worked.
Now for the Protocol.
3 tablespoons of apple cider vinegar (with mother, unpasteurized and unfiltered, I used Braggs brand) and 12 to 15 drops of peppermint oil in 16 oz of water (once a day - Twice a day for the first two days. And then only once a day after that. And follow this protocol for 3 to 5 months. Listen to your own body here. But wouldn't go less then 2 months on the protocol for sure.
IMPORTANT!! NOW WHEN YOU FIRST START THIS PROTOCOL START WITH USING ONLY 5 DROPS OF PEPPERMINT OIL AND 2 TABLESPOON OF APPLE CIDER VINEGAR (WITH MOTHER) with 16 oz of water. TO TEST YOUR TOLERANCE of this protocol FOR THE FIRST DAY OR TWO. Lay down after taking the dose for safe measure in the beginning. (I didn't have any problem, but better to be safe) Actually the peppermint was kinda nice it soothed my upset stomach.
But after the first two days, proceed to the 15 drops of peppermint oil, with the apple cider vinegar. Please understand sometimes it does take a stronger dose to kill some pathogens. I unfortunately did not get good results on lower drops of peppermint oil and needed to use 12 to 15 drops, 20 drops sometimes, however, "do not" not under any circumstance exceed 20 drops of peppermint oil per dose, diluted in 16 oz of water. These are pretty darn tough pathogens and this higher does is needed to kill them. If you simply can't handle 15 drop lower it to 10. I don't think less then 10 drops will help you though, but better to do this for sure than nothing. These are very virulent pathogens and can lead to death if untreated.
Doses should be taken at a minimum 3 hours apart. No more than 2 doses a day.
ALSO VERY IMPORTANT. Please do get all of the items listed in this protocol before starting it as you will need all of them to get well. This includes the food items like kefir, sauerkraut, yogurt, Apple Cider Vinegar Unpasteurized and unfiltered with the mother, peppermint oil, specific probiotics and enzymes listed, baking soda, Turmeric, and other supplements listed in this document.
After you're well (3 to 5 months), twice a week for maintenance. (2 tablespoon of apple Cider vinegar (w/mother) and 5-10 drops of peppermint oil with 16 oz of water. Not that it should come back. It's just an effective pathogen killer for so many organisms. So it is better to stay ahead and keep yourself cleaned up. Stay with the turmeric daily, it has so many health benefits. Remember death starts in the colon. This is just a great program to keep your stomach, organs and intestines in good shape. By the way I have 35 years experience in studying alternative medicine just for the record.
Also you need to add Turmeric (curcumin 95%) at 1000 mg twice a day. Or 2,500 mg. twice a day, with the peppermint oil and apple cider vinegar protocol. Take at separate times of the day not at the same time. And always use baking soda apart from vinegar and oil protocol (a few hours)
Other items essential to this program are: (Through the week) Kefir (the best most strains of probiotic), yogurt, sauerkraut, pickles. cottage cheese, fresh fruit, raw flaxseed and fresh veggies too (eat as you wish just try to include them daily and weekly. Course you can have cooked meals with meat if you like too. These probiotic and enzymes food are important for your recovery.
MUST HAVE: Garden of Life RAW probiotics women 50 & Older (Because it has 33 probiotic strains and is a broad spectrum probiotic, and potent). Garden of Life Primal Defense Ultra ( It has 13 strains but it also has soil based probiotic which is very important), Any brand name of Saccharomyces boulardii, Nature's Plus Acti-zyme (1 daily). Futurbiotic Daily Enzymes complex 2-3 times a week.
For the first three days of your protocol simply use the food type probiotics, like yogurt and kefir, and Saccharomyces boulardii. Be careful adding Primal Defense Ultra and the other brand probiotics listed here. Better to only take one and see how you respond to it, and maybe only once a day. Or every couple of days. The key here is listen to your body. They are needed very much to help you, but sometimes people in really weakened states need to go slow. The food probiotics like kefir and yogurt in the beginning may be the easiest to tolerate. The 3 probiotic supplements are necessary, as well as the enzymes and can not succeed with out them.
To help with keeping ph levels in balance I use 1 tsp. of baking soda twice a day every 3 days. But you can use it everyday if you like. Make sure it doesn't contain aluminum or any other items.
After your feeling a little better a good daily multivitamin supplement is a good idea. My favorite is Nature's Plus Source of Life RED mini (of course find one you like as this is not essential to this program), And try to eat mostly low sugar (glycemic) whole foods as often as possible. Best of luck to you.
The names of these products are only listed because they contain the essential items needed for this program. If you can find them in other products be my guest, but I couldn't.
This program is also used and very successful for IBS, IBD, H pylori. Ulceration Colitis, Ulcers, Constipation, Diarrhea, and a pretty darn good parasite cleanser. It is a good program for general health as well and can be used for general upkeep and well being.
Please warn your readers that C-diff is now more dangerous then it used to be. My Dr. one time laughingly told me that he knew he had caused a couple of his patients to get C-diff. Just because of course he had prescribed a anti-bioitc that his patients needed to recover from something else. C-diff was a common or fairly common after effect for some folks after anti-biotic treatment, as the anti-biotic causes diahrea which disturbs the bodies natural flora or bacteria in the intestinal tract.
However, about ten years ago or around that time, the bacteria became more resistant to being cured by flaygl or vankomycin. My mother got this disease and it was not from anti-biotics another thing to note, she got it from a colonoscopic exam.
After weeks of treatment with vankomycin, flaygl, dehydration, not being able to eat and yet gaining forty pounds of fluid she died.
This was unique at the time, but not as much any longer. One of the main reasons for her death, which is why I write at this time of year, is that she caught this illness at the typical cold and flu season, in the height of it. This year we are experiencing a pandemic flu that is predicted to overwhelm our health care system. Therefore what happened to my mother may happen again, Dr.s offices telling patients with c-diff it is just flu and to use a otc product to stop the diahrea, which is the worst possible thing to do.
This bacterium is like a cork screw it literally eats into your colon, with the many feet of colon we have, it is easy for the bacteria to be in a fold and after treatment is stopped it crops up again in a couple weeks. You are not healed of this until you have at least 3 negative tests, two weeks apart. Then anytime you get a return of symptoms it may have come back and you need to get into the Dr. asap.
People can become dehydrated and their entire system weakened especially if it gets to the point where they can no longer eat anything by mouth.
If her life saves one, then God has used it for a purpose, because friends this is a stupid way to die. It should not happen. In order for it to not happen it has to be taken as serious as it can be, not that it will be, but if you do not know, err on the side of safety and do not, let anyone tell you it is just the flu, or it is a easy thing to get over.
(Los Angeles, Ca)
I got C Diff two months ago from my hospitalized Dad who had it several times - then I went on antibiotics for another minor, unrelated issue, which made me vulnerable to it after I had been exposed, and sure enough I got it too.
I was put on a course of Flagyl for five days; it worked but then five days later C Diff came back. Another longer, stronger course of Flagyl was prescribed; 500 mg for 10 days 2X a day; it worked but five days later C Diff it came back. I've since found that Flagyl isn't very effective in general. C Diff has become a superbug - and Flagyl has been used so much it is losing effectiveness.
The third time it came back, I was put on TAPERED or PULSED Vancomycin, which doctor said was normal protocol when Flaygl fails twice. This is not a normal ten day or even twenty day course of Vancomycin, which is better than Flagyl but not as effective as tapering or pulsing it. With Vancomycin "tapered" or "pulsed, " you take it 4X a day for ten days, then 2X a day for 7 days, then 1X a day for a week, then every other day for four weeks. Total of seven weeks. There are variations - sometimes 8 weeks, sometimes weeks of every 3 days included.
The strategy is this: C Diff has found a way of surviving, protecting itself, by planting little spores (its babies) in protective colonies covered in biofilm. The antibiotic can kill the adult C Diffs floating around freely - so you get better. But it can't penetrate and kill the biofilm colonies of babies. So when you go off the antibiotic, you're OK until the biofilm colonies break open, grow up and became adults and guess what? You get full-on C Diff again. The babies are all grown up now, and planting their own babies even.
What tapered Vancomycin does is kill off the adults - then when you slow down your dosages, and the babies start to hatch and grow - but you hit them with dose of antibiotic. So the idea is to get rid of the baby colonies this way (I assume before they plant their own babies?).
I'm only at the end of the once a day week - no diahrrea but I can feel the C Diff pains in my tummy, feel it starting to come back, before I take my morning pill. Soon I will go to every other day - a bit worried.
But the other strategy of tapered/pulsed Vanco is that you have time to replenish your gut with the good bacteria. That is ESSENTIAL - some docs don't recommend that enough. You need a two pronged approach - kill the bad, replenish the good - to really fix the imbalance in your gut allowing C Diff to flourish.
This means dosing yourself with huge amounts of probiotics. I mean a lot. I was taking some - but just a regular amount. I've realized with this tapering that to stop the tummy pains (indicating C Diff returning) I needed to take way more than was recommended, and have found certain dietary changes (through this website and other research and just my own experimenting) that help.
Probiotics - (forgive spelling) S Boolardi is most important, but also Rhamnosus, L. casei, and L. Acidilophous. I have the Jarrow brand Boolardi 5 billion, and the Flora Udo's Choice Hi Potency 8 - 43 billion. These are the refrigerated kinds you get at the health food stores. My mistake was only taking it once or twice a day. NO. You have to super dose it. I am now taking two tablets of the Jarrow Boolardi and two of the Flora Udo's three to four times a day. That's huge but I am trying to replenish my good bacteria.
Kefir - I take Lifeway shots with 20 billion probiotics. Also have the big bottles with 12 billion.
Yogurt - the kind that has probiotics in it. Organic is good. When C Diff is full-on, Kefir and yogurt are the only thing I can drink.
Kumbacha Gingerade - another drink you can get at the health food store - it's great!
Barley water - never heard of that before I read this website. It works. Recipe I found was 1 cup barley (groats or pearled barley) to 6 cups water. Bring to boil, then let simmer for half hour or so. Drain the water off.
Activated Charcoal capsules - also highly recommended here at this website.
Tumeric and Ginger Root capsules - I was putting tumeric in tea but not enough.
Slippery Elm - someone recommended this and I am trying it.
Saurkraut, Kimchi, Miso - these are fermented foods with probiotics. I got these but haven't been very diligent about eating them. Honestly I think the above protocol is sufficient.
Beer - I'm a drinker and like my wine. Before I knew I had C Diff, I noticed that I was way worse after having some wine. C Diff loves sugar, and wine has lots of sugars. But beer is fermented (and if you make it yourself, it probably has probiotics in it) and what does it have in it? Barley! Barley has Chitin in it which breaks open the biofilm colonies. So don't have a wheat beer or rice beer (some of the cheaper beers are made from other grains). Make sure you have a beer made from barley. Malted beers are barley. Craft beers tend to have more barley in them. Check it out.
Avoid sugar, meat (has C Diff - I can eat seafood and sometimes chicken but that's it), raw veggies, nuts, wine, liquor.
But what few people are mentioning on this thread is DIFICID. I am surprised that more doctors aren't aware of or prescribing this. That is supposed to be the next step after failed Flagyl and failed Vanco. Dificid is almost always effective and stops C Diff for good. It is the only thing that cured my dad's C Diff. (He also had Flagyl (failed) and regular (not tapered) Vancomycin.) If, for me, the tapered Vancomycin and diet above does not work, I will go on Dificid. However it's expensive - $4000 for ten day course of it. I don't have insurance but plan on getting some soon. Even with RX coupons, it's still around $3500. But there's a manufacturer's coupon if you have insurance (not Medicare) that will make it affordable. Besides, with C Diff - as we all know - it's worth it. Anything is worth it to recover.
The final almost always effective treatment, besides Dificid, is a fecal matter transplant. This has 93-97% effectiveness rate.
So if you've not gotten rid of your C Diff on Flagyl or Vanco, try tapered Vano with the diet above, and the Dificid, and finally, a fecal matter transplant. The FMT is kinda gross, but again, worth it if you get rid of C Diff.
Good luck my friends!
C. Diff and Antibiotics
C. Diff and other bacteria might live in a person's intestines. If C. Diff lives in you AND you are prescribed certain antibiotics that are effective against other bacteria present in your intestines THEN you MIGHT experience an overgrowth of the C. Diff which can result in symptoms.
If you put several types of bacteria in a dish where you can see them on something they feed on you will likely see colonies of these several and to some extent they limit the growth of competing colonies.
It is like this that C. Diff can be present in the human digestive tract without symptoms.
Once an antibiotic is introduced that kills bacteria other than C. Diff this opens the door for C. Diff to flourish and become symptomatic.
Antibiotics do not give you C. Diff. It is either inside you or not. If not then you have to be exposed to it somewhere.
It is highly unlikely that while you are taking antibiotics you also come into the type of contact necessary to become infected with C.Diff.
It is very likely and probably 100% or very nearly 100% of C. Diff overgrowths are due to a person already hosting that bacteria and then taking a course of antibiotics which kills the competition.
Just a story. No question.
Hope that is alright.
My husband went to hospital and it was found that he had diabetes. While there, they gave him antibiotics. His is immune suppressed because of a liver transplant in 2006. Within 3 days after he came home, I had to call emergency again. He spent nearly the next 1.5 yrs on and off being treated in hospital for c-diff. When he came home, he had strong antibiotics to take for the rest of his life because the 3 fecal transplants did not move the infection. In fact all of this led also to a diagnosis of dementia. After a while the causes and effects get intermingled to the point where one gets confused about the order of things. We treated him at home with only castor oil (cold pressed) poultices for a minimum of 2-3 hours per day. He had what we thought was a stroke one day, and he needed to go back to hospital again. His diagnosis this time was epilepsy. When he came back home the last time, he no longer was being prescribed the strong antibiotics. I asked the doctor about that and he said that they did not find any c-diff in his system. I do not know where the dementia plays in all of this, however, he shows signs of dementia on the occasional days, and while he is much slower mentally and physically than he was before he was diagnosed with diabetes, his mental state continues to improve. I asked the doctor about this at his last checkup and she said that if he is getting better (it's been about 3 months now) then it wasn't dementia. I'm not sure what to make of that, but I'm not asking many more questions. We are just pleased that we can spend our later years together.
A.R.E. (Edgar Cayce) site is where I learned of the castor oil packs. I'm sure that is what kept him alive long enough to receive the organ transplant in 2006.
First, I am no one special, just someone who has experienced c-diff, now for my second time. The first was 15-20yrs ago the second (presently). My first (as anyone who has had the dubious pleasure will attest to) was a visit to hell. It truly feels like you will never get better. I don't really worry about the flu, surgery, or many other medical issues... C-diff gets my full attention. Anyway, I have to say, I had hoped that, since my first experience, the "people trained to fix us" would have "perfected" their treatment of this insidious ailment. I was wrong!!!
This year, for me, has been the "year from hell". It began with a couple of months of a very sick gall bladder, and removal, then another bout of diverticulitis, and now another visit from the beasts of c-diff. (I'm 57 and "they" lied about the golden years). All that to get to this... After starting on flagyl for the treatment of c-diff, and after 1wk with no relief, my doc prescribed the "next in line" Vancocin. This is apparently such an old med that most pharms don't carry it in stock and I had to wait a day to get it. Well, as a result of my previous experience, I really didn't want to wait, so visited this site and some others, and read about others battling c-diff.
Long story shortened a bit... I bought some activated charcoal (absorbs c-diff toxins) , and went to an oriental store for some "kimchee"(fermented cabbage)(also spelled Kimchi I think). That was 2 weeks ago. I did not start the vancocin because within my "waiting time" to pick up the meds, I thought I started feeling a little better and my stools seemed to be smelling a little less obnoxious. I still have not begun the vancocin and am eating the Kimchee. The pain is gone, am regaining some strength, and starting to feel somewhat human again. Of course, as we c-diff veterans have come to know, time will tell!
As with any info you may glean from whatever source, do your own research! This post may be worth nothing to you, or maybe a gift from God. I pray it is the latter. I find, for myself, that I am more and more willing to try what others, who have "been there", have tried and have found success. I wish you well!
I would like to know from Lloyd who posted today 12/18/12, what colloidal silver generator he has.
I have been taking CS for months now and have not been sick with a cold or flu. I recommended it to a friend who had been to many doctors because of the pain in her teeth and jaw. No doctors could help her. After the first day of taking CS her pain was diminished. Now it has gone away. She asked one of her doctor's if he knew about CS and he said yes. She asked him why he didn't tell her about it. He didn't have and answer. I also spray it in my dog's eye which was seeping. No more seepage. Also, a friend had pink eye, we sprayed it in and on his eye, next day it was gone. Amazing stuff. That is why I want to get a generator. Just haven't been able to decide which to get. Lloyd, if you could email me, that would be appreciated. Landrov101 (at) aol dot com
Many, many thanks to Ted and everyone on EC who are helping each other to continue with good health.
I take colloidal silver when c-diff symptoms return and it works very well. I get the silver from ___ and an 8 ounce bottle lasts for 6 months or more. It's good for killing over 1,000 types of bacteria and it can be used in place of antibiotics which will prevent one from getting c-diff in the first place.
(Fountain Inn, Sc)
For C Diff, probiotics which were helping for a couple weeks, the real cure happened overnight, I had read all about dandelion root, how it can cure cancer and help with multi problems from skin to high blood pressure, so I went to the health food store and bought dandelion tea, and solitary dandelion capsules, one tea bag steeped in 8 oz. Hot water, and two capsules, cured c diff overnight, now I continue this everyday and feel wonderful.
I have just -almost recovered from C'diff. I have 'red rice yeast , and am reluctant to take it, as what I have now is a yeast problem now. I have now taken Probiotics. I am so drained, and need to eat, but what can I eat not get sick again. Liquids are fine and staying in ( I think). I am 82, 119, (normal 124), and need to know what to eat. Please help! I not ever been sick like this ever. Thank you so much for help or reference.
I have been recently diagnosed with C. Diff. I got it from taking Cepro for a week for a kidney infection. I am 31, healthy and have hardly been on antibiotics my entire life. My sister got C. Diff a few years ago from taking antibiotics for a UTI. I knew the dangers of antibiotics, and wished I had taken more probiotics after. I wanted to write in for others who suffer from this horrible bacteria and what my sister and I have found to be helpful. When I was diagnosed, the doctor did not tell me about this illness, they made it seem like I had a little bacterial infection and all I needed to do was take antibiotics. There was no discussion on diet how CRUCIAL probiotics are and how it is contagious. If I hadn't known better I would have thought it was no big deal, just as they make it sound. It is a sad shame that I have to research this on my own. I suppose there isn't enough information for this disease and perhaps they don't want to scare people about this rapidly growing epidemic.
I have found that diet is very important. Before I was diagnosed I found certain foods I could have a fairly normal bowel movement. I did not explore too much and found the following to be very helpful: Eggs, squash, gluten free products (to avoid more yeast build up) AVOID SUGAR-that means fruit too(bacteria love sugar), Ezekiel bread, garden burger, proteins such as salmon, turkey. Low fiber vegetables-I did not find too many that agreed with me. Certain cheeses seemed to be alright, like the lighter cheeses. Multigrain cereal, like Barbara's brand. 1TBS of Flax meal a day.
My sister maintained a gluten-free, sugar-free diet for two months after going off antibiotics. This helped tremendously. She took the following and continues to do so on some. Acidophilus bifidus-400 billion Bentonite Clay, taken after antibiotics & probably a few weeks after probiotics. Garden of Life-Primal Defense. Nutribiotic GSE Grapefruit extract. Colloidal Silver-drink a small glass. Colostrum powder. Sacro B. Flore-Restore. I found Turmeric is powerful.
I think it is important that anyone going through this to always watch your diet for the rest of your life. Try to keep your body alkaline. Avoid excess sugar, greasy fatty foods, and alcohol. Read up on books that deal with natures antibiotics. Hopefully someday we find a cure and nobody has to go through this life altering illness.
Some fascinating news on Fecal Transplant science.. http://www.radiolab.org/blogs/radiolab-blogland/2013/jan/22/poop-magic-gut-cure/
EC: Someone just posted interesting feedback on FT yesterday on our Ulcerative Colitis Q&A page:
(Ten Mile, Tn)
You are not alone...
This is my personal story, account and opinion on my experience with Clostridium Difficile (C Diff)... My hope is for my story to help bring awareness to others about the realities of C Diff, the dangers, and ways to help prevent others from contracting it. And for those who have it, to help you know you are not alone in your search for understanding, knowledge, and help in getting rid of this horrible disease.
I was hospitalized in Sept of 2011 while and after undergoing surgery to have a trans metatarsal amputation and ankle fusion surgery. As with most surgeries I was placed on IV antibiotics to prevent infection of the surgical site. Prior to going to the hospital for surgery, our home was thoroughly cleaned and bleached to make sure I would return to a sterile environment. My husband, having suffered from a nasty staph infection in the past, was very concerned of the risks of such a thing happening to me, following my surgery. Staph, being something I understood and was cautious of while hospitalized as well. I have always prided myself on being someone of good hygiene and rarely ever get sick.
On my third evening of being in the Hospital I became violently sick with diarrhea, nausea and vomiting. I spent the evening and well into the next day in the bathroom of my hospital room. Sitting on the toilet, while my head was in the trashcan, feeling sicker then ever I had in my entire life. I have had food poisoning before, and it was like that times at least ten... The nurse on duty that night kept returning to the room and checking with my husband, and coming into the bathroom to check on me. He told my husband, he had never seen someone so sick before. He was very concerned and was afraid to have me left alone in anyway. When my Surgeon came to see me the following day, my husband explained how sick I had been all night. I was now in addition to my pain medication, taking meds to help with the diarrhea and vomiting. The Doctor advised that I was fine, and just severely medicated the night before, and having a reaction to that. He then advised I could go home that day.
Upon returning home I no longer had bouts of diarrhea, but still had a lot of nausea and vomiting. I was given medication, which I had taken in the past anytime I had previous surgeries to help with the nausea and vomiting that can sometimes accompany pain medications and/or surgery. The medication was not helping this time, and was changed a couple times, with little relief. Now instead of having diarrhea I was extremely constipated. A very normal side effect of pain meds. My pain medications were also changed a few times due to the nausea and vomiting as well as not relieving much pain. After several weeks I was sick of the med game, and sick of the constipation. I stopped all use of pain medication. The following morning I awoke before the sun had risen with uncontrollable diarrhea and nausea. Having had a lot of surgeries, I had been through getting off pain meds before and figured I would ride this out for a few days and be fine. A week past, and then, to add to the 30 times a day diarrhea episodes which began at/around 5 am daily, I now was also dry heaving and vomiting like crazy. I was unable to keep anything down or in. I contacted my Primary Care Doctor and advised him of my current status. He said there was nothing to be concerned about, and that I was merely experiencing common symptoms of opiate withdrawal. To add to my symptoms I now also had severe pain in the right lower quadrant, just below where my appendix used to be and pain in my mid to lower back, as well as severe pain under my right breast. I also had pain after urination, urgency, and increased frequency. I felt like I was burning up all the time. My eyes would get hot throughout the day, and often my vision would blur. And I kept experiencing a high pitch screeching in my ears. And my head felt like someone was putting it in a vice grip. This continued on... After another week, and more weight loss and unable to tolerate even liquids, I again let my Doctor know. He now said he felt I was just suffering from IBS. I disagreed feeling at 40 yrs old and never suffering from IBS before, that it wasn't something that normally came on at such an age, without previously having symptoms of such earlier in life.
And so the weeks continued, as did communicating with my Doctor to all that was occurring. Throughout this time frame he prescribed a medication that was for acid reflux... something I never picked up from the pharmacy as I researched the medication and found several thousand posts from people who were prescribed it and suffered horrific side effects. Major depression and suicide topped the list. And as my husband asked, ummm it's for acid reflux and you have vomiting and diarrhea, wtf? My primary Doctor also advised me to take Imodium to slow up the Diarrhea. Weeks later when seeing my OB to make sure nothing female was happening with the urination pain, she also suggested I take a prescription strength diarrhea medication. Again something I choose not to do. My reason always the same-my body felt extremely toxic. Things were coming out my nose, my mouth and my #ss, and that means something wanted out. Bottling it up didn't sound like a good idea.
We sought out help of naturopaths, acupuncturists, Chinese herbal medicine people and such. All of which said much of the same thing. That I was suffering from a kidney deficiency, liver deficiency, spleen deficiency, and stomach deficiency. Everyone had herbs that would clear things right up, stop the diarrhea, stop the vomiting. None of which helped, and most of which had the opposite effect. And all were looking at the symptoms, as western medicine does, and not the source of the problem. This was something I found no one could address. I also saw my Chiropractor on a regular basis, who regularly commented something was causing extreme inflammation in my digestive track. He recommended I request lab work to make sure there was no underlying infection.
After almost 2 months of constant diarrhea, nausea and bouts off and on and off of vomiting, and over 20lbs of weight loss (20% of my body weight), my Doctor said this was physiological effects of opiate withdrawal but we could run a few tests, as I'd requested, to make sure there was no infection or parasites etc occurring. Nothing was found in the urine, blood or stool tests. My Doctor then advised me to give it another 2-4 weeks and see how I was feeling, and if I wasn't better, he would put in a referral for me to see a Gastro-Interologist. A couple weeks later I had a scheduled appointment off island on Oahu to see the Surgeon who had performed my amputation/fusion surgery. He recognized how ill I looked and commented about the weight loss. My husband and myself explained all that had been going on for so many weeks now. He immediately put in a referral to GI and to Urology. Upon returning to Maui, the GI dept called me to schedule an appt and advised me the Doctor was out of town till the following Wed. After the nurse asked me several questions and went over all I was experiencing, she said the Doctor could see me the same day he was back, and that this was urgent. She was concerned and advised me if I had any signs of dehydration to please come in and get an IV or go to the hospital if it was after hours. I let her know as bad as I felt and as much as was coming out of me, I was drinking water constantly to avoid dehydration and the need to go to a hospital, which I feared would only serve to medicate me and risk further illness.
One of the first things the GI Doctor brought up during my appt, was the fact that I was hospitalized and on antibiotics at the time of my surgery in Sept. He mentioned something called C Diff and the widespread issue it had become in recent years, and that people contract it generally while in a hospital and on antibiotics. He explained how the diarrhea generally begins 8-10 weeks after initial exposure. And some people often get ill or have an episode when initially exposed. He also went over the possibilities of things like Ulcerative Colitis, Crohns Disease, Celiac Disease and Colon Cancer. Within less than 48hrs of my GI appt I was prepped and having an Endoscopy and Colonoscopy. 3 Days later my GI Doc called and advised me I had C Diff. He said I had a very severe case and was going to prescribe the strongest antibiotic to fight this, so that more time would not be wasted in taking a lighter med that I might not respond too. He said it was a very good thing I had not taken the Imodium or the Lomotil that was prescribed to me, as this would have bottled things up, as I thought, and in 50% of cases, people suffering from C Diff experience toxic megacolon. Your colon explodes. How awesome is that? He also told me when we spoke at my original appt that he saw my primary Doctor had prescribed another medication to me. I cannot write the name here, as I would not want any drug companies trying to sue me for saying negative things. Just know the GI Doc asked if I was taken it. I said I never picked it up. He said that too was something he was grateful I did not take. He told me it was one of the worst drugs on the market... Comforting again... At this time my GI Doc prescribed 14 days of Vancomycin, and advised me I'd feel better within 2 days, but to make sure I completed the full course of antibiotics. Unfortunately I did not feel better in 2 days. I did not feel better in 2 weeks. My GI Doc was no longer working there, and the new one I spoke with then quadrupled my dosage of antibiotics and advised me to take them for another 14 days. Again I did not get better. The diarrhea was more than ever, my hair was falling out in droves, my body aches and joint pain were unbearable... Headaches every day. Nausea every day. Pain after urination and increased frequency. Low grade fever each day. Ears ringing like crazy. Eyes a hot blurry mess. The list goes on. So many things no one tells you that comes with the effects of C Diff. The toxins wreaked havoc on my nervous system and immune system is so many ways. This by no means is something that only affects your digestive system.
After much research I found my way to a Doctor in Oakland, CA. Dr. Neil Stollman. And incredible GI who thought outside the box. Long story a little less long, after several conversations, we were booking a flight from HI to Oakland and scheduled to have a procedure called Fecal Microbiota Transplantation or as often referred too a fecal transplant. I had first heard about this procedure from one of my best friends. Her sister is a nurse, who happens to work in a Hospital. One of very few in the US that does the FMTs. She wasn't sure what exactly they were doing it to treat, she just knew it was for diarrhea related problems. Their conversation had come about in discussing how long I'd been sick, and how often I'd been having the "D"... This was almost 2 months before we knew I had C Diff. So our journey would find us going to Oakland, CA for the FMT Surgery through Colonoscopy. I won't go into all the details on the procedure. This is something you can easily google and find out so much more about. Or you can email me and I'll do my best to share any info I have or answer any questions. What is most important in all this is one simple thing... There are other ways to rid yourself of this horrific disease. Not everyone responds to antibiotics. I am living proof of that. The studies show approx. 20% of people infected with C Diff are unresponsive to antibiotics. There are also a great percentage of people who do respond to the meds and have a complete recovery, just as there are a great deal who do great while on the antibiotics, but within 2-10 days the c diff returns. When people don't get better from the meds, most Doctors advise there is nothing else that can be done. Some stay on the meds for years, as it's their only relief while on it. The minute they stop C Diff comes back with a vengeance. Mind you the cost of these medications are extremely high. Without insurance coverage, a 14 day course is almost $1800. So when they quadroupled the meds, in my case, that was almost $7500. Can you imagine the people taking it for months on end?
While getting my second 14 day course of medication I asked the nurses in the GI Dept if they had ever heard of Fecal Transplants. They told me that it was something that was discussed about introducing to help in C Diff cases, but that everyone was in agreement that the "ick factor" was just to much. I then asked if you had what I have, and before I could complete the sentence, they all commented at the same time, they would go anywhere in the world they had to, to do the FMT and get the C Diff gone. Interesting they'd all use it for treatment, but would have no interest in treating others... Mind you that those who don't respond to meds, do not magically kick this on their own. C Diff causes kidney failure, liver failure; immune systems shut down...People get sepsis. People die...Not a few people, not a hundred people, not a thousand people. Do the research and you will be amazed and just how many each year... And for those taking antibiotics that manage to help sustain life, think of all that they are then susceptible too, being on antibiotics and having their immune system wide open for anything else to jump aboard.
The research I found on fecal transplants was based on people with reoccurring C Diff. None of the procedures Dr. Stollman had done were on people who were unresponsive to the meds. I am beyond thankful he still chose to do this procedure on me, even though I didn't fit the norm on those he had previously done. Once again being a Doctor who thought outside the box, and merely had a willingness to help and heal. No promises, no guarantees, and clear on the risks and the unknowns. What I did know, was that this is what I needed to do, and where I needed to go to do it. Can't explain how I knew, but I did. My family was in agreement and support 100%.
My results were almost immediate. I had no bowel movements until 4o hours after the procedure was performed. And within 4 days I had no Diarrhea. After months of having it, every single day... Being awoken between 4-5am with the crazy urgency, and spending the first few hours of each day in the bathroom, let me tell you, this was an incredible morning... I wish I could say everything went back to 100% normal immediately after the procedure, but sadly the C Diff does such a number on your body, that for many, it takes time to recover, heal and have the colon and digestive system find it's balance again. I can say that within 2 weeks of having the FMT done, I have gained back 10 of the 30lbs that I lost. Mind you I was down to 90lbs. My hair is no longer falling out. My face is slowly beginning to clear up, as is my back and shoulders. Acne being something I never had an issue with in my 40 yrs of life. I no longer have daily Diarrhea. And never a day had passed that I didn't since my C Diff nightmare.. Foods can be a trigger. But for the most part I eat a very clean, all organic diet, and stay away from foods that can cause or aggravate inflammation. I still battle with gas, bloating and mild abdominal pain, along with the pain after urination. Dr. Stollman feels in his opinion, as do other Doctors that this is because the Colon still being inflamed and needing it's healing time. And when the colon is inflamed, it very easily irritates the bladder (in women)... I no longer wake up at 4 or 5 in the morning to have my stomach explode. I no longer feel like a volcano is erupting inside me. Not talking about Diarrhea at all, speaking in regards to this insane degree of heat I woke up feeling all throughout my body each morning. I no longer have the severe pain where my liver is, my kidneys, and in the lower right quadrant just below my appendix. Again I could go on for days about the symptoms.
I explained so many times to my Primary Care Doctor, as well as my OB, and my Surgeon, how toxic I felt. You would think I'd been out partying all night long and putting in things of a toxic nature. Yet I was drinking nothing but water, and eating all organic, healthy foods. No toxins were going in, they were inside me. All I would be told by my primary Doctor was again, it's just IBS...It's just effects of stopping pain meds... Nothing to be concerned about. Guess what??? C Diff is very much something I should have been concerned about. It's something everyone should be concerned and knowledgeable about. According to the CDC; C Diff is the worst "SUPERBUG" out there. Please do the research. Learn about C diff. Learn about how it's contracted. Know your risks when you are hospitalized. Know your risks when visiting people in a hospital and in nursing homes. Know the risks of being on antibiotics and the things it makes you susceptible too. Even if you don't, just reading this, right now, will allow you to know and be aware of what C Diff is... And that is more than I knew before being diagnosed with it.
I am not 100% as of yet. C Diff has wreaked havoc on my body. But I know, and I have complete faith that with time, my body will heal and I will return to 100%. I don't want C Diff to simply be some crazy negative experience I went through in my life. One that all my loved ones went through with me. One that caused so much pain, so much worry, and so much fear in so many... This negative is something that needs to become a positive, and I believe simply in writing this, in getting the word out there, that it does exactly that. If my experience can help even just one person, than some how in some way, it makes a difference. I make a difference; in a way I never could have not experiencing it myself.
I am a firm believer that we truly are never given more than we can handle. That all things in life happen for a reason. My friends and family all know me as someone who they often describe as strong, positive and inspiring. Well let me tell you, C Diff took me somewhere I'd never been. I've been through some crazy things in my life, some very difficult things, but never felt like I would not survive it. Not find a way to thrive after it. C Diff made me feel like someone handed my ass to me. That's the simplest way I can put it. I never felt like I was dying, even when I was told many years ago that I had cancer. I never felt fear even when I was told I'd never walk again, years ago after a major car accident. My husband said it best when he said that in all the things he's been through in his life, nothing ever scared him to the core, like this did. He said watching me die every day was a fear unlike anything he could explain. He would not sleep at night, for fear of me stopping breathing. C Diff is no joke. It's no mild irritation in one's life. It's a very serious disease that takes thousands upon thousands of lives each year. And yet no one we ever spoke to about me having it, had even heard of it. Just as we had never heard of it.
I believe with everything that I am, as does my husband and my family, that having this Fecal Transplant with Dr. Stollman, saved my life. As did my diet, my use of probiotics, and drinking water-no matter how sick I was... I could not keep anything in or down for weeks on end, but I refused to simply give up and knew dehydration would be the last thing I needed. In all the research we did on C Diff, we found the Fecal Transplant is basically used in last case resorts. And I was shocked to find only a handful of Doctors that were admitting to doing such procedures at all in the US. Less than a handful, honestly. Every day with C Diff is like having a day robbed from your life. Antibiotics have side effects of their own as well. I wish they had worked on me. But I am grateful in finding something else that did. Something I truly believe in and support and would do AGAIN without a second thought, if ever I were to get a reoccurrence of C Diff. One thing I cannot stress enough is to be assertive when it comes to your health needs. I am assertive. I requested tests. I asked for help. I still didn't get the answers for such a long time. Learn from my experience in any way you can. If you have been on antibiotics, and in a hospital or health care environment and are experiencing diarrhea, go see your Doctor. Request to be tested for C Diff, not just the standard parasites, and bacterial infections that are looked at.
Please, if you are currently battling C Diff. Know that you are not alone. Know that it can and will get better. Know that you can take your life back. Don't be embarrassed to ask for help. Don't be afraid to think outside the box. Don't be afraid or ashamed to talk about "POOP". I would become the poster child for poop in a heartbeat to save lives. This disease doesn't just hurt the person who has it. For me, in my own experience, my biggest pain in this was watching everyone else who loves me go through it with me. The helplessness of my husband and my parents. Their fear, their stress, and their frustration with the medical care I'd been receiving, or rather not receiving. I can't change what happened. I certainly never asked to get C Diff. I cannot change all that others went through in my experiencing it. What I can do is anything possible to help others in not getting this disease, in fighting it if they do, and in resuming their lives after they've beaten it... AND YOU WILL. If you are reading this and have C Diff right now, know that YOU WILL BEAT THIS!!! And you too will find a way to turn a negative into a positive. I didn't choose to get this nasty superbug, but I did choose to do something about it, and I choose each day going fwd to do all I can to help any one I can.
(Los Angeles, Ca)
(North York, On, Canada)