C Diff (Clostridium Difficile)

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 months 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 several 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. GI was backed up and it would be a couple more months to get an appt on Maui. Going forward….l 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. At this point I had lost over 40lbs now, 40% of my own body weight. There was not an ounce of muscle or fat on me. Just skin hanging off my bones. It was so gross, and very hard to look at myself at all. My husband and myself explained all that had been going on for so many months 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 quadrupled 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. Not ten 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. And when they do die, it’s not said to have been C Diff that killed them, it’s whatever they contracted because it. Or it’s whatever organ failed, again because of it. This is real. This is scary as hell. And this is something every one should be aware of.

After not one round, not two rounds and doubling of meds each time, the Doc wanted to do a third round and quadruple the dose. It had already been a month and I was loosing more weight, getting even sicker, hair was coming out in clumps, my urine was on fire, and I had to squeeze so hard as if I was bearing down in childbirth just to get any pee out. My eyes were so toxic, they burned, and I couldn’t see well. There was so much else happening beyond Diarrhea. This continued on, until my next visit, when the Doctor said she was sorry, but there was nothing else they could do for me or try. She said I should get my affairs in order. She said it so casually… They had given up. I would not give up so easy. I’m sorry I actually like being alive and I won’t have my life end, after all else I’d been through, simply because someone didn’t wash their hands after taking a crap. This was not happening…

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 40lbs that I lost. Mind you I was down to 78lbs. 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 organs and 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. 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 and something I would not survive. Your organs can only take so much abuse, and the toxins C Diff releases is unlike anything you can imagine. Knowing how quickly your organs can fail and having Doctors offer nothing really to comfort or help you, is a feeling I’d never wish upon anyone. You have to advocate for your self when it comes to your health. You cannot accept “I don’t knows”. You cannot accept half ass diagnoses when the Doctor has done no real tests and often even seen you to do such. There are other Doctors out there, other answers. There is always someone willing to help. Find them. Or find me, and I’ll help you find them. A lot of people are uncomfortable talking about anything that has to do with “POOP”… Don’t be. In many cases, like mine, it’s life or death. I am not embarrassed, nor have I ever been when it comes to being completely honest and talking about things that others often wish not too. Your health is so important. Never let your pride get in the way of it.

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.

I am not unique. My story is not unique. I am simply someone who managed to survive this horrific disease. Someone who continues to battle with the after effects of it, but remains positive and knows each day will be better…My heart goes out to the millions who did not survive C Diff. My heart goes out to the 3,000,000 a year that contract this horrific disease. My heart goes out to anyone and every one out there who have been or are connected to C Diff, whether it be yourself, or a loved one. We all have things we battle with in our lives. This story is simply about C Diff and my experience with it. And something I felt the need to share with my family and friends and anyone who will listen, in hopes to help, and to hopefully spread awareness and avoid further lives being affected by this deadly disease. Hospitals and Nursing Homes and all medical health care institutions need to take the proper precautions. Sadly most do not. Bleach is the only that kill the spores that C Diff bacteria leave behind. Yet they will not clean with bleach. Washing your hands properly with soap and water in a sink, so the spores can go down the drain, must be done. Use of wipes or alcohol based drops to avoid the need to wash hands in a sink, does not kill C Diff….It causes it to be spread. When Health Depts have gone in to check surfaces for C Diff in certain hospitals, it has been found on everything you can think of. The thermometer, the Blood Pressure Cuff, the IV pole, the remote for the TV, the bed rails, the food trays, the silverware you are eating with, the nurse call button…The list goes on. It’s so gross to think about it. But we need to think about it. Nurses all over the world and getting hygiene tickets for not properly washing their hands because of things such as this. Cameras are being installed in hospitals where C Diff epidemics have broke out to ensure proper hand washing is being done. Simple steps can make HUGE differences. And not taking them kills lives. It’s that simple. I am not here to point fingers. I am not here to place blame. I am here to open eyes. I would never wish what I’ve gone through and continue to through upon any one in all this world. Safety and health are necessities in this life, not luxuries. They should be treated as such.

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…

UPDATE: 11/29/2012

After writing that article, within a couple days C Diff had returned. The treatment we did California did work, it just needed a little reinforcing. We did a Home Treatment version just like Doc had did, minus the Colonscopy. Within 3 days I was great. Almost 9 months now and no signs of active cdiff!!! I’ve run 10 tests over the months and all are negative. There’s a huge difference between all the studies in showing what Fecal Transplant does verses meds. Medications don’t rid the spores, although they can rid the bacteria. They don’t in all cases, which I was proof of. Research has been showing that the FMT is doing more than ridding the bacteria by over running it with good bacteria, but also rids the spores, since they can’t live and thrive in a healthy bacterial environment. They can only thrive and continue to multiply and spread in an environment conducive to such. Research shows a strong percentage of those who ever had C diff, when needing antibiotics again, the c diff returns. I was on Antibiotics with my last surgery while amputating  my leg (3 weeks ago)… No cdiff relapse at all. I know, we know I am not out of the woods and that it can be longer before a relapse presents itself, but we are remaining hopeful and full of faith. And hoping that since my antibiotics were by all means strong, but very short term and done through IV that it may have minimized the amount of healthy gut bacteria that was removed from my system. I am not a GI and don’t pretend to be, I’m just another human being doing my best in this crazy journey.

My health is better and better every day. I remain on my all organic diet, but have been able to drink wine, eat meats, veggies, honestly anything. I just choose to keep it organic, because my body seems to appreciate it more. For anyone who needs help, please contact me anytime. I believe, as does my husband, the reason I got it, was so I would know what it was, and how to better help others. There’s tons of wonderful support groups out there. If you would like more info on those, please ask as well. Never feel alone!!!

 * For more info on C Diff support groups that can help you connect to others and realize even more that you are not alone in this battle, please contact me anytime. I have the home protocol and Doctors info all over the World that can help… I believe I went through this, so that I could better help others who are enduring it and try and prevent it from happening. Things aren’t always directly about us at all, they are about what we do with them, and how we can better serve others… In less than a year I’ve connected with some of the most incredible people I’ve ever had the pleasure of knowing who were fighting this horrific infection. I am so happy to report that at least 80% of them are now C Diff free. So many of them took the FMT information to their Doctors who’d never heard of it, or performed it, and their Doctors did the FMT via Colonscopy and lives have been saved. Some are still struggling as so many are in this world. I have FAITH that more healing will come, as will more answers to fighting this. I’ve been involved in some studies that are trying all they can to get the FDA to approve FMTs. It’s really hard to get something approved that the FDA can’t profit from. So sad that saving lives isn’t reason enough.

Update 3/2016… It has now been years since I updated here. Although throughout my blog page I have done updates here and there, and write and re share my story often online so that I can try and help, if only by letting others know they are not alone, or being a support system, or bringing awareness to CDiff and such… I have since my original bout with CDiff had my leg amputated, and then a year after 2 large nerve tumors were removed from my residual stump. I have had to had antibiotics each time, just via an IV while in hospital for both. All else I have always tried to not use antibiotics and to try natural remedies for things that Docs have wanted to prescribe them for. A couple times that didn’t work and I had no choice but to take them. I had a massive infection in my mouth from a tooth that was removed and my immune system was already compromised because I’d been battling blood and bone marrow cancers and don’t have a lot of white blood cells to fight the normal stuff and extra stuff that can come at us. I have what is called leukopenia (low white blood count) and neutropenia (low neutrophils) these are the germs fighters. These are the warriors against infections and bacterias… Because of the types of blood and bone cancer mine run very low. Anyway, a lot of effects re-occured, but weren’t as severe, but weren’t good at all. And we repeated the home FMTs as needed, and as we’d done before. We were able to balance things out, it just took some time. Our systems take time to re build all the healthy flora in there and when they get floored and your system is already compromised, it’s a little crazier to say the least. After all the years, I have to admit I was certain I would be 100% in time from the after effects of the cdiff and all the damage it had done. It still isn’t the case. But a lot has improved. I was told the neurogenic bladder would never go away, and it has. I was told my kidney function would remain compromised, and it has not. I was told a lot of things. Mind you none of these things were an issue before I was introduced to CDiff. Currently I stepped on a darn toothpick, one of which had been in another human beings mouth. (YAY GERMS). lol. And by the next morning my entire foot, bottom and top, ankle and up my leg were read with strange streaks running all over and climbing hire literally before my eyes. After avoiding Doctors for colds, flus, ear infections, and anything that wasn’t related to my Oncologist and Hematologist I caved and did the Urgent Care because this was no joke, and I had blood poisoning 20 years back that was very similar to this reaction and the line travelled back then from my ankle up my leg and the ER Doc said when the ambulance got me there (long story) that in another 5 minutes it would have hit my heart because the line was running through the arteries and I would have died. Crazy from a damn shaving knick and bandaid ( the adhesive entered my blood stream and I’m allergic to it)…. Anyhoo…. Urgent Care Doc said that this was cellulitis and the infection was beneath my skin and was staph (MRSA) and antibiotics were a must regardless of my CDiff history. I asked if I could have only the injection and not continue on pills, since we’d done one day rounds of IV antibiotics even when chopping my darn leg off and that was enough to prevent MRSA. He said this was different because it was already spreading so rapidly and I would need injection now and to continue on antibiotics for 7-10 days and such. I talked him down to a Z Pack and instead of taking it over the 4 days I blasted it in a day and half. Hey years back the Military prescribed Z packs and it was one solid 1000-1500 milligram dose in one day and you were done. Then it became a 2 day, then a 3 and so on. Of course the concern when you’ve had CDiff is always the cloud of will it return? So far so good. Been pounding my probiotics (which I take daily regardless) but taking a little extra. I am on an all organic diet, which I’ve been on since I got Cdiff and learned how quickly any chemical, preservative and such made me feel so much worse. Or rather my husband figured all that out while watching me go through it and seeing the way my body reacted to foods and such. When you are toxic, your body sure doesn’t want even more toxins thrown it’s way. LOL. I’m hoping the injection and short term z pack was enough to do what was needed, while not 100% flooring my good gut bacteria. Something Docs have studied for years, and the shorter term antibiotics (certain types) have better results at ridding the infection you are being treated for without fully ridding ones gut bacteria. 25 years ago the Army Docs and Scientists in Colorado explained that’s in part why the Zpack was created and used so highly in the soldiers. Anyhoo… All i can do is see what happens. And be prepared to make the best choices for myself if I need to. But at the same time not live my life in fear of this returning everytime my immune system gets a kick in the ass. Hell it’s been getting it’s ass kicked for over a year now, and trust me when booster FMTs were needed, they were done, regardless to whether “D” was out of control or not. We know our bodies better than any doctor out there. We know how we feel. We know when things aren’t processing right. We know when we don’t feel well, and most of the time we can even figure out why. Listen to yourself. Listen to your body.

I know it’s not easy when you’ve had this to not think about it, I know it’s looming over so many people. I would never advise for anyone to ignore it, I would only advise that you do not allow it to be all that you focus on each day. To not live in constant fear. It robs us enough of our power when we are going through it. But if we continue to let it each day, even after we’ve treated it, or are treating it, it just continues to have all the power. And all that energy is energy we need so terribly. So we can’t turn it into negative energy, which fear often truly becomes. Focus on the positive. Envision yourself happy, healthy and living fully. Appreciate the littlest things, and remind yourself you are alive. Even on the days you really wonder why you even woke up, only to repeat the cycle again. You are not alone. You are never alone in this. If you don’t have a support system at home, reach out to others here, or through online networks, forums, support groups, social media…. anywhere that you can voice and be a voice for others when you are ready too as well…

To date over 1200 people have reached out to me personally in their struggle and battle with cdiff that later had the FMT and are still here today because of it. That is 1200 people still waking up each day. Regardless to the experience of cdiff, the effects it has had on their minds, bodies and spirits, they are grateful every day to still be here in this life with us all. Sometimes we go through things so that we can better help others go through them, or to help others never have too. There is always a positive in every negative that exists, it’s so important never to lose sight of that. I don’t even know how many more the number is, this is just the amount who personally reached out…

My story was published in a book that another Author in the UK wrote about the human body entitled – 10% Human: How Your Body’s Microbes Hold the Key to Health and Happiness. It was an amazing book that I learned so much from. And I was blown away and how few people were willing to share their story and talk about POOP. It’s just POOP. We all POOP. Good lord. Never be embarrassed to talk about what you are going through. Whether you reach out to others publicly or privately, just reach out when you need too. We were all put on this earth to do far more than serve ourselves. We are here to help others. And this is just one of many ways and one of many areas that we can. Please please please remember that you are never alone. Cdiff messes with your mind, it creates anxiety, fear, feelings of helplessness, and makes people often feel like they truly are loosing their mind. This is not just some infection that messes with your gut. It effects your entire immune system and your nervous system. Our gut is tied to everything… And toxin don’t just sit and hang out in one area. Trust me, they travel about like some crackhead searching for a fix. lol. 

I know this is quite the novel read. It keeps getting longer and longer… I realized I hadn’t updated in some time and so much has happened since that time. Right now I’m busy kicking cancers ass, kicking this staph infections ass, kicking the allergic reaction I had to the tetanus shot they gave me at the same time, and focusing on a happy, healthy gut, and moreover a happy and healthy life. Trust me, I know we all have hards in this life. I am not unique. I have my own battles and difficulties. I live in pain 24 hours a day in my amputated leg and can honestly tell you I still wake up grateful every single day for having the day. I still focus and picture myself free of pain, free of illness, and not having to smile through it and pretend it’s ok. It sucks hurting, anyone who says it doesn’t, isn’t being honest. But it sucks more allowing it or anything to be in control of your life. We cannot control the circumstances that come with life, but we damn sure can control the choices that we make… 

For more c diff stories, forums to connect with others fighting this fight, please check out: http://www.cdiffsupport.com

http://www.peggyfoundation.org

 
Contact Information:
Peggy Kan Hai

Email me
www.peggykanhai.org
www.mauipositivevibez.com

2 thoughts on “C Diff (Clostridium Difficile)

  1. Peggy, I am now 9 months c diff free! You were so instrumental in my feeling normal and ok to have my fecal transplant, that I hope anyone out there reading your blog will feel the same comfort I did. For anyone else reading this, I was one of those that found temporary relief through taking flagyl the first two times, then moved to the liquid vancomycin that you have to have compounded because its an IV medication. After failing it threes times, the FMT saved my life. Nine months of the c diff nightmare was gone with the one procedure. It took time to heal of course, but no more c diff. And it DOES wreak havoc on your whole body, not just your digestive system, just like Peggy explained. Thanks Peggy for being there for us all!

    • Thank you Tracy for finding the letter I shared of my story and having an open heart to all that I spoke about. I am so glad we connected as we did. And I’m so glad that your Doctor was willing to against the “norm” and take a chance and perform the FMT on you. And now because of that look how many others he has been able to help. No one wants to talk about poop… I understand that. But poop saved my life. And I’m not ashamed or embarrassed that it did or that I got C diff because of others not properly taking care of themselves or hospitals properly taking precautions needed to assure us all safe visits. Prevention is huge. And fighting for one self is just as huge. Without looking outside the box and advocating for ourselves, neither or us would still be here today. And we both know it, and we both appreciate it. I sure as heck didn’t need another reason to appreciate life, I’ve always been a weirdo who has done so. Long before c diff, accidents, cancers, etc… But I realized when the c diff happened… As did Matt, who said it the same time I did one night… That my getting it wasn’t about me, it was about us now being able to help others avoid getting it, get through it, and know they weren’t alone in this fight etc… I never would have been able to help people with C Diff if I didn’t get it, cause I didn’t know what the heck it was. Nor did Matt. We learned so much from it, and met so many incredible people. I never was afraid of anything in my entire life. And never felt like I couldn’t overcome and beat something either. Man C diff gave me a run for my money. The things Doctors didn’t pay attention. The symptoms no one tells you about. The things they didn’t mentioned even once you know what it is finally. So many people have told me they thought they were loosing their marbles, because they had so many symptoms that weren’t GI related and doctors telling them it wasn’t the c diff causing it. To many people out there with the same symptoms for it not be linked to the one common thing they all had… And worse of all to many peoples lives lost because they won’t perform such a simple procedure that can save their lives. You like I were blessed with loving husbands in our lives who also happened to be the perfect donors. It’s not as simple as getting some poop and being saved. I have several people fighting this fight that I am now friends with or talk to in the forums that can’t find a healthy donor to save their life… literally. Or that have gotten sicker or picked up other bad stuff because of a donor that wasn’t perfect for them. If we could fedex Matts poop to them I’d do it. But that isn’t an option. If awareness was out there this wouldn’t be an issue either. If the FDA would stop shutting down the projects and docs doing FMT this would not be a problem. But they make it so hard for people… And people are embarrassed to talk about it. How do you ask someone for poop? Truth be told if that was all that could save me, and we know it was, and Matt came back from the tests as an unsuitable donor, I would have asked straight up on Facebook, in the newspapers, on my local news…. I would have done anything to get people to understand and to not only help me live at the time, but further help others. I know in my heart I am still here, because my job on this earth isn’t done yet. I still have much to do and many to help. And the better I am. The healthier I am. The stronger I am is merely the more I have to give to others, the more I can do to help them… Pretty simple. You are such a blessing, and I am so grateful that we met and became the friends that we are because of c diff… If it wasn’t for that hardship our paths may never have crossed. We met when we did, how we did, simply because we were meant too… I love you. And I am thankful every day for you still being in this life, and for me having the blessing of knowing and loving you in my life…

Leave a Reply

Your email address will not be published. Required fields are marked *