Oh Sh*t!: My C-Diff Saga

This post mentions shit alot.  And by shit I mean real shit. Like that stuff that comes out of you.  It’s one part humor, one part really serious, and one part PSA.  If you don’t like toilet or poo humor, you will not want to read this.  But if you looooove talking about shit, well then read on and try not to crap your pants.

I don’t really discuss my Ulcerative Colitis on here because it has little to do with fitness but it DOES have quite a bit to do with health. Digestive health to be exact.  And Ulcerative Colitis is a major issue. So here’s a snippet of one of the worst flare ups I’ve ever had with this crap disease (pun intended)…and how it turned into something much worse.  And how I recovered and came out a much stronger person.

Let’s get the basics out of the way real quick so we can get to the nitty gritty. What is Ulcerative Colitis? Here’s a Wikipedia definition but I describe it to people as something that exactly how it sounds: An ulcer in your colon. Very similar to Crohn’s Disease.


 

Let’s rewind the clock to 5 years ago – Mid July of 2009. I had stopped taking my UC 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.

When left untreated, a flare-up (bloody stool is the MAIN issue here) can basically leave you completely worthless. You can’t go anywhere. You’re stuck at home because you’re either in constant pain or you can’t function without being near a bathroom. When you don’t have an office job, you cannot possibly do work from a bathroom. Just doesn’t happen.

Now, being a Personal Trainer and having a flare up with UC is bad enough. But little did I know that what was happening to me was actually a bacterial disease called C-diff forming.

C-Diff is basically one of the worst bacterial diseases you can get. It kills 14,000 people a year in America alone. It leaves you completely wasting away, it’s been known to kill people who let it go untreated or who already have compromised immune systems because of their age, and it’s actually quite common in nursing homes and facilities where patients aren’t washing their hands and are getting sick from each other.

But one of the most common ways it’s contracted is from taking antibiotics for something completely unrelated and getting a ridiculous amount of bad bacteria in your stomach. Ya know those commercials that Erin Andrews from ESPN does? Yeah we should ALL be taking probiotics. Those help to balance the good flora in our gut and helps keep really bad icky things from happening to you. So do yourself a favor go get some at your nearest drugstore.

Back to the shit…


 

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 shit’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. End result? Two accidents. Thank the Lord I wore BLACK. (and thank you Oak Park Fitness Formula Clubs for making black pants the required uniform) because walking down the street and realizing that you are a grown adult and THAT just happened?!  Not something you can really discuss with anyone.

“How was your day?”

“Oh ya know the usual…Pretty much a hum-drum kinda day, did some laundry, went to the drugstore, shit my pants, trained a few clients…”

Awesome.  And the second time it happened I was wearing WHITE.  White pants. And I was on the EL praying to God to please please please don’t let this happen to me in public. PLEASE let me get to my house in time. OMG I cannot shit myself in WHITE pants on the damn subway. I just cannot.

I made it home in the nick of time. But that was the last straw. 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. And this is coming from someone who doesn’t want kids. 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 (lovely, a real great way to get clients let me tell ya) and 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 intraveneously 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 shit.


Want to know more about C-Diff? Check out

Want to know more about Crohn’s and Ulcerative Colitis? ccfa.org

Want to know more about how awesome probiotics are? www.lifetime-weightloss.com/blog/2010/8/1/benefits-of-probiotics.html

Here’s to your GUT health. 🙂

 

 

4 thoughts on “Oh Sh*t!: My C-Diff Saga

  1. Dear Michelle, We are truly sorry you encountered a C. diff. infection and endured such devastating symptoms associated with it. It certainly is one of the most crippling, and deadly infections and one of the “superbugs” we are all addressing and fighting worldwide. All of us at the Foundation are glad to read you are negative for the infection, and commend you for your courage at writing about your experience and sharing it with others. Thank you for sharing the Foundation’s information for others to receive assistance and learn more about the infection and post-C. difficile information. We wish you the best of health and applaud you in reaching out to help others.

  2. I just found this blog when I googled c. Diff causes pain, and I am so happy to have read this.

    I was diagnosed with UC while
    Pregnant and living in Chicago and tried to walk to northwestern from the pain, and j ended up passing out and hospitalized for weeks. That was in 2010. I ended up having to leave Chicago (a really difficult thing to do) and move back to Michigan to be with my family. My mom also needed me there for different reasons and our stories seem to mirror one another! Fast forward to now, I’ve dealt with five or so flares and steroids and just went to U of M for a doc appt because of this blinding pain and urgency. I got c. Diff from taking an antibiotic and slacking on my meds!! Now they are waiting to scope me and today I literally also has the same issue. Walking in my nice lululemon pants and then shit them. The most mortifying moment in my life.

    They are going to discuss other medications and I’m so worried. Anyway reading this blog literally got me out of hysterical tears today. I was wondering how I would teach yoga classes tonight (I’m also an fitness instructor and yoga teacher) and your blog made it okay. Thank you so much for writing this. It is so good to know there are other people experiencing this exact same thing. And it’s gross to talk about with other people sometimes but you writing about it and just putting it out there makes it seem not so bad. Shit happens? Lol. Thank you for this. I really needed to read it today.

    If you’re ever open to talking about your UC or meds I’m just curious about the IV meds and very nervous to take them. If not, totally understandable. Thank you!!!

    • Oh Jill thank you SO much for this note!!! I am so glad my story has given you a reprieve from the tears temporarily. This sh$t really does suck, doesn’t it? I’m so sorry you’re going through a difficult time. Have you tried probiotics like Acidopholus to combat the cdiff? I know it won’t cure you but it does help to take them despite what some doctors might say! And yes I will be more than happy to tell you about my IV treatments now…I will email you!

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