Survivor Experiences ♥

C. difficile Infection

What is that?

That was my first question to doctors upon hearing my wife’s diagnosis.

I had never heard of C.diff. before. I did not know what it was or what it was capable of. Over the past several months I have been educated as to how horrific and deadly this infection is. It is literally a game changer…. a life changer. This is something that can quite possible destroy humanity. I am not sure why it is not being discussed more in the main stream media. This thing kills more people every year than HIV/AIDS and drunk driving combined. It is my goal that every single person is made aware of the dangers of it and is educated about it as I have been. One day while looking at these pictures I realized the powerful statement that could be made with them. I have watched this video several times since I put it together and I still get very emotional about it. It is amazingly sad what many people go though that is unknown to so much of the population.

Please help spread the word and perhaps one day a cure for this dreadful killer can be found.

Even if only one  person is helped we’ve done a good thing. Thank you.

Tonia and Brian

10-11-16

 

………………………………………………………………………..

 

 

Here’s my C-Diff Story: 26 August 2014

Let’s rewind the clock to 5 years ago – Mid July of 2009. I had stopped taking my Ulcerative Colitis meds (stupidly) because I was fine. I had been “battling” UC since I was 13 years old and for about 75% of the time, I was always in a remission type of state. I couldn’t even remember my last flare-up.
I was also really cheap. I wanted to save any $ I could and it just seemed silly to pay $60-$80 a month on meds that I didn’t need.
I had been working as a Personal Trainer for almost a year at a gym just a little over a mile from my condo. I was training for a half marathon. I was going out a lot, enjoying another summer in Chicago hanging with friends, going to concerts and festivals and the beach. Life was good!
I’m not exactly sure when a small flare up developed but I’m sure I just tried to take my meds to get it to just go away. Around the same time my Mom was experiencing strange symptoms as well back home in Cleveland. She was going from doctor to doctor to figure out what was wrong. And being the good mother that she was, I knew she would be worried if I mentioned how I was getting worse and worse with my UC. So I didn’t tell her or anyone what was going on. I told my GI doc at the time and he just switched up my meds a little bit.

But that didn’t help.

As the days and weeks went on and the flare ups got worse and worse, it became clear to me this was not just a flare up. Something was seriously wrong with me and I didn’t know what to do. And being a Personal Trainer is not exactly the ideal occupation to have when you’re spending half the day in the bathroom. And everyday I was trying to train my clients who have no idea what my deal is and I have to say “Ummm I’ll be right back” repeatedly as I BOLT as fast as I can up a ton of stairs to get to the locker room to run all the way in the back to where the bathrooms are.

And here’s the worst part that anyone with Crohn’s or UC will tell you: You get all the way there and guess what?

You don’t have to go.

It’s just the FEELING of going that you have. CONSTANTLY.  But you don’t go. Notta. Nothing. Zilch.  You lose complete control of your body and I don’t mean you start convulsing or anything but you’re at the mercy of your stomach and your brain trying to communicate with you. Here’s what I imagine my stomach and my brain were saying to each other for 3 awful weeks of my life:

Stomach:  Ummm…you better find a bathroom because sh*t’s about get REAL.

Brain – Dammit I’m at work, can’t this wait??

Stomach – NO way!  I think there’s something percolating.

Brain – Seriously?? Fine…

Stomach – Better hurry!!

Brain – Aww crap. Here we go…

Stomach –  Hey guess what? I totally tricked you. There’s nothing there. You haven’t eaten anything in like, a day. HA!

Brain – Oh come on!!! I just rushed in here for nothing!

Stomach – I know…it’s hilarious right?

Brain – I hate you. You’re an asshole.

Asshole – Nope that’s me. And hey I’m at the end, this isn’t my fault. Tell it the large intestine, he started it.

Stomach – Hey Brain!!  Gotta go again!!!

Brain – Sigh….come on. I was JUST in there…what am I supposed to do? Just STAY in here?

Stomach – Not my problem!  But you better just hang out in here.  This could go on all day, hahahhahha!

Brain – This is exhausting.

So that’s the conversation my body had with itself for about a month. I called my doc and said “Something is wrong. This is not normal for a 30 something year old woman to do twice in one week. This isn’t normal for ANYONE! What is going on with me?”

He wanted to put me on new meds but I didn’t think it was going to work. I felt fatigued. Weak. Lethargic. I was always tired and took naps but never felt well rested. I was always thirsty. Always. But water didn’t do anything for me. So I drank pop. Then I drank OJ. Then I drank Gatorade. Then I drank more water. Half empty bottles of all of this sat by my couch. I called my sister and told her “I think I’ll just wait this out.”  She said I sounded terrible.  Like there was something in my voice that told her this was more than just feeling sick. I said I felt a little dizzy and was going to lay down for awhile.

I called the doctor instead and said “I think I need to admit myself into the hospital.”

I’m so stubborn I didn’t even ask for a ride to the hospital. I took the EL two stops and shuffled my way into the ER. I sat down and told the dude my problem.

I was admitted and given an IV by the nurse who said “Honey…you are completely dehydrated. I can tell just by looking at your veins.”

It made sense…The half drank beverages sitting in my fridge, the confusion, the lethargy, the weakness.

The minute she gave me fluids I felt much better. I even got a sandwich and started to feel like I was going to be okay.

That lasted about an hour before I felt back to feeling awful.

I got weighed in at 119lbs. I never really weighed myself but I know for a fact I was at LEAST 135lbs prior to getting sick.

I got into my room and thought I would just stay there until they tell me what’s wrong with me.

I spent the rest of the night trying to coordinate with my family how they would come see if. I told them they didn’t have to, that I would be fine, but they insisted. My Dad wasn’t working at the time so he drove the minute I told them I was going to the hospital and arrived from Cleveland to Chicago shortly after visiting hours were over.

I don’t think I’ve ever felt so awful in my life. Not knowing what was wrong with me, assuming it had to be either colon cancer or stomach cancer, completely fatigued and out of breath just from going about 10 feet to the bathroom (probably didn’t actually GO TO the bathroom just walked in and walked out because that was the routine for so long).

Here’s how I tried to explain this experience to people:

Think of a time where you felt really nauseated. Now think of a time when you felt like you were so hungry you would eat anything. Now think of a time when you were so hot and thirsty you felt like you were hallucinating from being dehydrated. And now think of the last time you felt like you could sleep for days. Got all that? Now picture trying to eat, and you can’t even chew or bite into anything, not even jello, because the nausea comes right back.  And now think of how it feels when you have to go to the bathroom or else you’re going to explode…and you don’t. And now think of getting some sleep and lying down and closing your eyes, but you can’t do that either.  That’s how it felt for 6 days straight.

In the meantime, I couldn’t text or talk to anyone because the words on the screen and just picking up the phone to talk made me sick to my stomach and dizzy.

When people do came to visit they have to wear those hospital gowns because I’m now quarantined.

The nurses come in every 4 hours to take my temperature and draw my blood. So if I wasn’t weren’t awake then, well, I am now.

I was given a menu of items for breakfast lunch and dinner and would circle what SOUNDED like good food, but I couldn’t keep anything down.

Three days after being admitted, I am officially diagnosed with C-Diff.

You’d think I’d be relieved, Finally I know what’s wrong with me!  I was familiar with the disease because my Mother had gotten it in 2007 when there was an outbreak in Northeast Ohio. She got it from taking an antibiotic (although most doctors won’t admit that).

I probably got it because I made a very stupid mistake: I stopped taking my UC meds. So when I did get a flare up and didn’t do anything about it, it just got worse and worse.

The moment my Mom was able to come see me she flew out of Cleveland and came directly from the airport to see me. She walked in the room holding a stuffed elephant and I broke down and told her “I have C-diff!”

I don’t really remember HER reaction as much as I remember crying for no real reason. I think it was a combination of knowing I could have probably prevented this had I just taken my meds but also just emotion from seeing my Mom. Who doesn’t want to see their mom when their sick?

The next couple days just sort of blend into one another. I had to wait until the meds they were giving me somehow proved I was getting better. They gave me Flagyl, pretty sure through an IV.  (By the way, I nicknamed my IV stand.  I called it Ivy. You know you’re losing your mind when you’re naming your IV stand. I would say “Let’s go Ivy, we gotta walk to the bathroom now”…and I would roll it with me to the bathroom where nothing would happen of course and then I would roll her on back with me to the bed where I would plop down and feel like I just ran a mile).

I’m pretty sure talking to yourself comes hand in hand with being sick and in a hospital.

I would pass the time by either listening to my iPod or just trying to sleep or a combination of both. Now, listening to the songs that I listened to in the hospital bring me right back to that hospital bed and that time in my life. There was nothing for my parents to do but just sit there with me and I felt bad that they couldn’t do much. They wanted to help but there was nothing to say or do. I just wanted to sleep. But slowly the feelings of wanting to sleep went darker to feeling of just wanting to die.

I vividly recall lying in the bed, wimpering from pain, and telling my Mom I would never wish this experience upon anyone. That I would rather be in labor pain and giving BIRTH instead of being in the current situation I was in.I wanted to FEEL something other than the emptiness and weakness I was experiencing at that moment.

I felt so weak and sick that I looked up at her and said:

“I just want to die.”

And I meant it.

The minute those words were spoken my Mom came over and sat down next to me on my hospital bed and said “Don’t say that. Don’t ever say that, it’s going to be okay.”

This is an important part of this story because what I haven’t told thus far is that my Mom had been sick for months without knowing what was wrong with her. I called my sister and my Dad when I was feeling sick because I didn’t want to upset my Mom. She was going through something much worse that I didn’t know about…But I would find out in just a matter of days.

I don’t know how it was determined that I was okay to go home. I think I managed to finally eat something without throwing it up.

I don’t know what I weighed when I left that hospital but I THINK it had to be about 109lbs. Looking at pictures of myself (this is 2009 folks, Selfies weren’t popular yet) I think I weighed about 115lbs  when I got back to work here a month later.

My Mom and Dad stayed with me for about a week while I was recovering. My Dad stayed longer since he wasn’t working and I DID need someone with me while I tried to regain my strength.

Before my Mom went back she had a chat with me. She came in my room (where I practically LIVED for the next month since there was nothing to do but sleep) and said she had to tell me something important. I had a feeling it wasn’t good news. She wanted to wait until I was out of the hospital to let me know: She had just had a biopsy and found out she had lymphoma.

I don’t really remember being shocked because we all knew something wasn’t right with her. I think I was too weak to really have any real reaction. It wasn’t until way later that I thought about how I sat there and told her I wanted to DIE that I realized how unbelievably selfish I was. I had a serious disease, no doubt. But my poor mother had found out she had cancer. And here was her daughter basically whining and complaining that she wanted to end her life because of a little nausea.

While I was still recovering from the C-diff weeks later (it took me awhile to be able to walk from my bed to the kitchen to the couch without feeling faint, let alone walk to work which was a little over a mile away) I decided I was going to move home. Even if my Mom was going to get chemo and be okay, I wanted to be there to take care of her and be with my family again.

I returned to my PT job at my gym shortly before Labor Day but was too weak to really give any client a good session. My muscles had completely atrophied and I was still so weak. I developed a bad case of GERD or Acid Reflux where I felt the constant need to spit every few minutes. I finally came back in mid-September to tell my manager that I was going to leave for good.

It was time to come home and be with my family.

Nothing like a serious illness to make you re-evaluate the important things in life.

So I had a party, invited everyone I had ever met in Chicago, put my condo up on Craigslist for rent, found a tenant within days and was home by the second week in October.

3 months later my Mom was given the all clear that she was in remission. We celebrated on Thanksgiving that year and she got two and a half more years of life. And we enjoyed every minute of it.

But I still think about that time in the hospital. I still think about how long it took me to recover – to even walk down the hall of my condo building wasn’t possible for days. How I was out of breath so easily and so weak for so long. How I would lay on my couch and watch reruns of Perry Mason and Twilight Zone, wishing I could feel strong enough to go back to work. How my first REAL meal after I got my appetite back was a Medium Domino’s Pizza that I ate in one sitting all by myself. How I appreciated FOOD so much more after that. How much I missed running and never ran that half marathon…but I ran a full marathon less than 7 months later – raising money for Lymphoma.

My Mom was right – everything did turn out okay for me. I started a new life back home in Cleveland and I don’t plan on leaving home anytime soon. I have a great job, I’m on a very good medication for my UC that I take intravenously every 8 weeks, I’m healthy, I’m happy, I’m alive and I’m okay.

Life can be kinda crappy at times. But having been so sick at one point in my life, and watching my own mother pass away, death isn’t something I would ever WISH to happen to me before I’m ready.

As simple as it sounds, Life is really a gift. I will never throw it away over a little bit of sh*t.

3 thoughts on “Survivor Experiences ♥

  1. your story sounds so familiar. my first bout with cdiff was last year. one year almost to the day it started all over. we got to the ER and they did a CT scan and told me that all of my intestines from my spleen to my rectum were swollen 5 times their size. it was cdiff again. when I got to my room a surgeon came and visited me and I asked why she was there and she said your intestines are so infected we are expecting you to rupture and bleed out. that is why I am introducting myself. Well with luck I did not bleed out, I went home and like you was exhausted by just walking to the bathroom. it has been 3 weeks since coming home and I still can’t stomach real food. I seem to exhist on oatmeal and scrambled eggs. every time I try something like real food I get diarreah. every little cramp and I am looking at my poo to make sure there is no blood. In 8 weeks my surgeon said I would be healthy enough to have a colonoscopy to see if there is damage. I am terrified that if I get it again it will kill me. it gets worse every time. I lost 20 pounds this time. this stuff is so terrifying and it kills thousands of people each year. Barb

    Liked by 1 person

  2. If it wasn’t bad enough fighting cancer and going thru chemo, my husband picked up the terrible C Diff bacteria in hospital. Which I had never heard of before? It was not detected soon enough, and eventually almost killed him. Emergency surgery to remove large bowel, and left with an ileostomy!! Just was detected again and put on a new antibiotic costing thousands? 100 dollars per pill. More people need to become aware of such a deadly disease and a vaccine or IV injected for suffering individuals.

    Like

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