Update: Sept 2014

So many crazy things have happened since I last posted, I have no idea where to start. My body has been a complete wreck. A diagnosis of moderate-to-severe Fibromyalgia has been bestowed. A lump has been removed from my knee. The Morton’s Neuroma tumors in both of my feet have been injected – twice. My hormones seem to have gone off the rails, and the Fibro-fog/ADD/depression/anxiety angle of my life has been especially difficult. Add to this that fact that BOTH of my younger sisters (with whom I currently live) came down with very serious infections of – you guessed it – C.Diff. I’m told it’s impossible that I might have given it to them. I even had myself re-tested to see if I was carrying C.Diff still. The test result was negative. One of my sisters who is naturally thin, petite and pale-complexioned, tested positive on the first test and was immediately admitted to a private hospital room in which isolation procedures were fairly well-followed. She recovered within two weeks.

My youngest sister, who is of a bigger-boned, curvier build much like myself, and who has a pale complexion except for her naturally rosy cheeks, did not immediately test positive. She ran into some of the same problems I did when I was desperate to be diagnosed – her stool samples were delayed in doctor’s offices and reached the labs too late for the bacteria to be detected, or her stool samples were a combination of consistencies and were thus rejected by the testing machine, which will only test a sample of an extremely watery consistency. Another time, she had to be taken to the Emergency Room by ambulance due to weakness and excruciating gut pain – pain so bad, the doctor prescribed a morphine shot. She provided a stool sample, as requested. My sister watched as the nurse picked up the sample jar, looked at it, said “that’s not C.Diff” and then flushed the contents down the toilet and discarded the jar. All this occurred during a county-wide outbreak of C.Diff., and my sister had all of the symptoms. Like myself, however, she tends to look plump, rosy-cheeked and healthy even when she feels like she is on death’s doorstep, so it took two months before anyone would give her medication to fight the infection. By this time she was very seriously ill, and was on a completely liquid diet. Two courses of Metronidazole (Flagyl) did not work. A long course of Vancomycin did not work. A second, longer course of Vancomycin seemed to accomplish something, but my sister is still experiencing severe gut pain and diarrhea after eating. She is currently in a very similar position to where I was just after beating my own C.Diff infection a few years ago, and my heart simply breaks for her. She lost her semester in school due to the illness, and will have to repeat it.

When I was very ill and a doctor asked me if I had lost any weight, I responded with the truth: yes, I had lost approximately 30 pounds due to my extreme illness. That doctor congratulated me and said I looked great. The inappropriateness of his comment never seemed to dawn on him. A few years later, my sister experienced something very similar, and it is this attitude, I believe, that led to many of the delays that contributed to the severity of her illness and to the severity of the aftereffects with which she is now struggling. All of this served to drive me nuts, and it still does.

While all of this occurred, several other minor disasters befell our family (illnesses, job losses, the death of relatives) and the stress levels I was experiencing mounted so high, I felt like I was losing my mind. So I decided to take a break. I took a break from this blog, where so many people pour out their hearts and their suffering, and where I can do so little to help, and from several other things which, while fulfilling and positive, also raise my heart-rate and stress levels due to my natural predisposition to anxiety. Instead, I planted and garden and harvested it. I adopted a puppy. I tried to take care of those in my family who needed me. And even on the days when my fibromyalgia made it almost impossible to move, I made it a point to limp out into the heat and sun for even just a few minutes and to soak up as much Vitamin D as I could.

I am the better for taking that break, but I am sorry that I haven’t been as present on this site as I’d like to be. I’d like to thank all of those who have posted their stories on this blog and shared their experiences with one another. We all keep each other going. Keep it up.

Infecting others…

Terribly worried today. My younger sister, whom I live with, has been suffering from diarrhea for almost three weeks now after every attempt to eat. In the last week, she has worsened considerably and is experiencing abdominal pain, nausea, sweats, and the occasional fever. It looks like C.Diff to me, but I’ve been holding out hope that it’s something else. Stool tests have been done, blood work has been taken, but her results aren’t in yet.

If it is C.Diff, it means I need to get myself tested again. I was never tested again after my lengthy treatments for C.Diff. I asked to be, but my doctors told me there was no point because I had fairly normal stool at the time, and my IV antibiotic treatments had gone on for so long – they seemed to think that nothing would have survived that. I’ve always felt differently. Given the symptoms and post-infection complications I experience, I’ve always felt that I’m a carrier of the bacteria, though not always experiencing the severe diarrhea. I’d like to be tested with the newer, more sensitive test Rhonda mentioned in a different post. The trouble I always run into is with the labs. They see a non-watery stool and refuse to test it, because they seem to believe that a person can’t have C.Diff if their stool has any degree of formed-ness. I’m going to speak to my doctor and get him to send a letter to the lab with my sample explicitly asking for testing to be done with the newer test, regardless of how my sample looks at the time. If I still carry it, I need to be treated again, and I need to know so that I can best protect the people around me.

And if it is C.Diff, and if my sister didn’t pick it up from me, then I need to be crazy-careful that I do not pick up a new infection from her. It’s so hard to see her like this – my worst nightmare come true. My biggest fear has always been that I might, through some oversight, cause one of my family members to become infected. It really brings the “leper” feelings back, in that I keep thinking I ought to just live alone and separated from others so that I can’t infect and kill anyone. Nasty, nasty disease. But I have to square my shoulders, keep those thoughts out of my head, keep up the bleach cleaning routine, and do my best to help my sister. At least I know some tricks for abdominal pain relief!

I’ll keep you all updated on how this turns out.

-L

I. Am. So. Sorry…

I have been off-line, out-of-commission, non-communicative, and just generally not here, and I apologize for that.

There were a lot of contributing factors: my abdominal pain levels have been bad, my arthritis-like symptoms have been literally crippling, the neuroma tumors in my feet have also been very crippling, my depression has worsened, and my anxiety levels have been off-the-charts. Someone important to me was prevented from suiciding just-in-time (again), and while that person has again decided to live, I am not okay. I do not do well with near-suicide or suicide situations – especially where people I really care about are concerned – and mentally, they shatter me. I have had to face these situations several times before, and each time I face another, I shatter into tinier pieces and it takes longer to put myself back together.

Between all this and the limbo I’m currently in regarding medical testing and treatment (I seem to be going nowhere), and my soon-to-be-dire financial situation due to my unemployability, I would like nothing more than to crawl under a rock and hide. I feel the limitations of my body very keenly right now, and I feel utterly trapped. I feel old, and broken, and weak, and exhausted, and fuzzy-headed, and un-pretty.

Know what I want? I want to be a young woman with a bright future again – like the young woman I was before C.Diff. I want to finish my education. I want my own little house where I answer to no one but myself. I want the mortgage that comes with it, and I want to have to worry about whether to paint the front door red or blue.  I want to have a husband who will love me and help me to feel less alone, and children to feed and read bedtime stories to. I want a career where I can feel like I’ve accomplished something every day. I want another dog, because the antics of my pooch give me something to smile about every single day. I want a simple, normal life. I don’t want to be alone on the outside-looking-in anymore, waiting for something to happen or for some bit of information so that I can be healthy enough to have all those things.

And if I can’t be healthy and have those things, I want to be able to not want them; I want to be able to let those dreams go so that the lack of their fulfillment won’t hurt me anymore. So if you have any of these things, be thankful. Be joyful, be ecstatic at your good fortune and your blessedness. If you’re reading this and you have health, be out-of-your-mind-crazy with gratitude. Celebrate your freedom – your freedom of movement, the freedom to have choices, and make decisions, and have dreams. For now, I’ll keep hoping – no, believing – that someday, I’ll be able to celebrate with you.

-L

Would you like Fibro or Arthritis with that?

After seeing three new specialists and having new and different tests done, the following has recently been established:

1. I most likely have Crohn’s or Colitis. Exactly which one, is yet to be determined.

2. I also most likely have Rheumatoid Arthritis and/or Fibromyalgia to contend with on the side.

I’m told that it is entirely possible that I may have had these conditions in a dormant form before my C.Diff infection. The damage the C.Diff and the treatment drugs did to my body may have caused these conditions to become not only active, but prominent. This seems to make sense; after all, C.Diff takes its toll on all of the body’s systems, including the immune system. This may explain why many of us survivors experience serious auto-immune issues afterwards. These diagnoses would explain a lot, but some of the abdominal symptoms I experience would not be accounted for, so there’s still some further investigating to be done. I’ll keep everyone posted…

Update: December 2013

Hey Friends,

Where to start… Well, today is my birthday (yay) and I’ve hit the big “3-0”. I can’t help but to look back at my 20’s and reflect a little. There were good times and bad times, and super-fun-crazy times, but I think the events that have had the most impact on my life were the C.Diff-y times. Just when I was starting to have fun and feel confident in my adult-self and love my independence, C.Diff happened. And as you all know, life since then has been downright odd. And hard. And painful. But life since then has also been filled with a lot of love and support. I have experienced some very good things I may not have if I never had C.Diff. And I have been able to help and support others who are struggling through this experience with me. I have learned how to have a healthy compassion for others, and how to endure what seems endless with patience. I’m much tougher than I used to be 🙂 And, I hope, wiser.

I thought I’d be in a very different place by the time I hit 30. I saw a few degrees, an academic lifestyle and career, a house and a mortgage, maybe a husband, possibly a kid or two. I worked hard for those things for years, and they never happened. I never expected disability, dependence, and – let’s face it – poverty. But here I am. Many of you are in this place too. And it’s this crazy little bacteria called C.Diff that’s brought us to this. And the funniest part of it all, is that I’m actually grateful to be here. Because this place means I’m still alive. It means I’ve seen life narrowed down to its sharpest, most essential point. It means this is a beginning, and a start. It means my horizons are open, and I’m not stuck in a life I chose for myself ten years ago when I knew absolutely nothing about real life. Disaster has been my life for over three years now, but my life itself is not a disaster. For me, life is just starting.

Scared of Relapse

Really, really worried I’m relapsing. Have had D for two weeks, and seems to be slowly getting worse. Only seem to have it about 3-6 times per day, so not 20-25, like when my last CDiff bout was at its worst. Getting massive headaches, though, which is what the CDiff toxins to do my head. Really worried. Have an appointment tomorrow with a new doctor – going to ask for a CDiff test kit. Please, god, let it be giardia or a flu or something…

How Many CDiff Stories?

Well, between this blog and our CDiff Forum (click for links) we have collected 32 personal CDiff stories. I think that’s kind of amazing. We’ve all fought this battle feeling alone, and now 32 of us have not only the support of our loved ones, but of each other. Yay for us! To blog and forum perusers and visitors who’ve not become members, please become a member and keep the stories coming! Together, we’re making a positive difference in each other’s lives.

 

Thank you to: Michael, Jenn, Nancy, Anna, KBaker, Rhonda W, Lynn, Lisa, Ria, Debby, Patty, Karen M, Jane, Chris, Judi, Gerry, Pat, Krista W, Mike, Chelsea, Don J (who shared his mother’s story), VI, Tara, Traci, Jennifer (who shared her childrens’ story), SkinnyLegsAndAll, Lamantia, SpeakForThem (Lisa), BlondeJenn, and My2Labs. (As you can see, we have several stories from members who share the same first names. And sorry if I’ve missed anyone out in this “thank you” note – if I have, it was not intentional).

Hugs to you all,

LP

Specialist Appointment = Epic Fail

Well, I’m not going back there!  The Gastroenterologist I saw had her assistant ask me some questions for about 10 min., then she saw me for about 3 min. total. She did not give me time to tell her any of my symptoms, such as the fact that (WARNING: TOO MUCH INFORMATION TO FOLLOW…) when the spasms are super-bad I’ve actually passed intestinal tissue after stool, and tons of blood, and being a girl, and having had C.Diff., I know internal tissue when I see it. She wouldn’t look at the picture I brought of my abdomen at it’s most distended. She didn’t read my file. And after spending exactly 13 min. on me, she looked at me condescendingly and said, “I think you just have a little IBS. That can happen after an infection.” When I asked her how simple IBS could be so painful and debilitating, she proceeded to tell me that while everyone deals with “discomfort” differently, I could be dealing with it better. She then attributed the extreme pain, etc., to “negative thinking” and said that (and I quote)  if I just told myself everyday “I’m going to be okay. I’m fine” then soon, I will be.

Yup. She thinks my symptoms are all in my head. Why? Because she noticed on the basic form I filled out in her waiting room that I take antidepressants. “You have a history of psych problems, right?” she asked. “No,” I replied, “I just have depression from feeling so sick all the time, watching my sister struggle through the aftermath of a traumatic brain injury, and losing the ability to live my life to the fullest due to the aftereffects of the C.Diff. infection.” She gave me a blank stare, and then proceeded to feed me that “positive thinking” line. She then said to try probiotics for three months (even though I explained I’ve been taking them for years now) and to come back if my problems still “exist” in three months. Then, she might consider ordering some imaging tests. But then there’ll be a waitlist for that, so all told, I won’t get any help until at least six months from now.

I was speechless. After she left, as a sort of consolation prize, her assistant ordered some blood work and stool samples. I’d told him in the few min. I was able to speak with him, that I’d moved thousands of miles across the country to be able to get this specialist appointment.

I’m usually a very level, easy-going person. I very, very rarely get mad. But I have to admit, I really wanted to break something. Like maybe her face. I sobbed all the way home. And now I’m back to square one. I’m really hoping my dr. will consent to referring me to another, different specialist.

So all told, the appointment was an epic fail. The dr.’s waiting room was over-crowded and far behind schedule (even though my appointment was at 8:45 in the morning) and I think she just didn’t want to take me on. I think she’s overworked and doesn’t want a hard-to-figure-out-case like myself.

My response to all this (besides the sobbing and despair, and all that jazz) was to get my most favourite comfort food – one that I’ve denied myself for three years because of how nasty it’d make my digestive system feel. I said “screw it,” took two gravol and a buscopan, and ordered a Taco Salad. It was heavenly. And yes, it was worth the 6 hours of agony I endured about two hours later. It was worth every second.

So what did all this teach me? 1: Dr.’s can be discriminatory if you have even a slight history of hum-drum mental health problems like depression. Dr.’s can also discriminate if you are not the weight they think you should be (I was told people who have intestinal problems “are always very thin”, and I’m curvy and “look healthy”, so I must be fine) 2: Dr.’s can take the easy way out by saying “it’s all in your head” and knowingly screw you over, and can carry on with their day just fine, thank you very much. 3: I have to shake it off and carry on and keep pushing. I have to demand help, and I have to keep demanding it until someone gets tired of hearing my voice and gives me the help I cannot provide for myself. And 4: when life gives you lemons, order a Baja Taco Salad to go with them.

C.Diff. Survivors Forum

Hi Everyone,

We now have a forum! This makes chatting easier, organizing our information easier, and you can also pm (private message) other members. Our forum address is:

 

http://cdiffsurvivors.lefora.com/

 

We’re open for business! Hopefully many C.Diff. survivors will find us and we can all support each other. I’ve created several categories on our forum to help organize our information.

If you feel comfortable with it, I’d appreciate it if anyone who has posted their C.Diff. story here on my blog, would copy the text from here and paste it into a new post under the “Our C.Diff. Stories” category on the forum. If you’ve posted helpful links, there is a category for those too! Moving all of the information we’ve collected together from this blog site to the forum would take a long time if I tried to do it all myself, so a little help would be much appreciated, if you’re able. Thanks everyone!

Lady P

 

Anyone Want A Forum?

Hi Everyone,

Since so many people are finding their way to this blog and are finding help (or at least support and reassurance) from others here, I’m considering putting together a forum site for C.Diff. survivors. This would make posting and chatting more organized, and finding and sharing information much easier, and it may help in coordinating our efforts to promote awareness and change. If people are interested, I’ll go ahead and put the site together, so let me know by replying to this post with a “yes” and with any suggestions you might have for the site, such as sections you’d like to see.

Thanks everyone – you’re a really special bunch, you know that? You may not feel it, but you’re all so strong 🙂

Luv Lady P