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…