The Agony of Clostridium difficile

Clostridium difficile (C. diff) typical comes on after normal gut flora is destroyed or altered by antibiotics.  It grows and multiplies – overpopulating the bacteria in your intestines.  C. diff damages cells and mucosal, triggers inflammation, and forms a yellow plaque over the damage.  Common symptoms are fever, cramps, abdominal pain, and uncontrollable diarrhea.

IMG_1692

Since I didn’t have a job lined up upon college graduation, I moved 4 hours upstate with my parents.  A few weeks after moving, I was admitted to the local hospital due to a UC flare, where they tested for C. diff among other typical labs.  Since I got worse over the following days, they called my GI downstate and decided to retest for C. diff – which returned as “positive” meaning I likely became infected in the hospital.  Since I hadn’t been on antibiotics in the last year, my doctors and I suspect it had something to do with how my body and my flora was reacting to Humira.  Having Clostridium difficile colitis and an ulcerative colitis flare at the same time is the second worse pain I’ve experienced, just below the pain I experienced from drug-induced lupus on Remicade.  During this week-long stay, I was hooked up to a pain pump with morphine and given steroids – too much at first, but I will cover that in another post.  The doctors and nurses at this hospital worked with my care team downstate as I was not established with a specialist in the area yet.

At its worst, I was going to the bathroom 40 times a day.  Most of the trips were between 3am and 8am – where I was running back and forth.  This resulted in the second accident I had where I pooped on the floor on the way to the bathroom.  Because I was embarrassed at the time and also knew how contagious C. diff is, I cleaned the mess up myself the best I could and hopped in the shower.  In retrospect, I am not embarrassed and should have asked for help, but this was a low point for me at the time.  Because of my frequent and numerous bathroom trips, I ended up losing 30 pounds within a week and a half and was extremely weak.  They began me on IV vancomycin and discharged me with a prescription for Flagyl after a week because they weren’t able to do much more for me.  I was told if things worsened when I got home, I should go to the larger hospital the next town over.

C. diff & Einy

Later that day, things took a turn for the worse and I ended up in McLaren Hospital.  The ER doctor who was assigned for my care was extremely rude and initially refused to treat me and admit me since I did not yet have a GI I was established with in the hospital system – even though I had just been in the hospital for a week and instructed to come there.  This is the first time I had ever encountered this as I had always been assigned a specialist in the hospital if I didn’t yet have one.  After some pushing, he ended up giving me IV fluids and potassium (since my levels were low) and then discharged me.  If you’ve never had a potassium infusion before, you are very lucky.  If it’s not mixed with enough saline, it can really burn.  Since I was turned away at McLaren Petoskey, I returned to the smaller hospital and they continued to manage my pain and switched me from oral to IV Flagyl and potassium.  They kept me for about another week and I also had a colonoscopy during this stay.

My GI downstate was still working with my doctors up north, but during my second week, he said he would no longer do this.  I was told if I wanted him to still be part of my care, I would have to move back downstate.  I was sent down with oral/liquid vancomycin and potassium powder mix, and I moved in with my grandparents.  I was still up from 3am – 8am running to and from the bathroom every day.  I remember watching The Night at the Museum (the original and Battle at the Smithsonian), Princess Diaries, and a lot of Ace of Cakes on repeat during these mornings as something to distract me from the pain.  My grandparents ended up taking me back into the hospital after a few weeks, and I still tested positive for C. diff.  I was admitted for just under a week.  I was given IV Flagyl and had another colonoscopy.  Though my C. diff wasn’t gone, I was starting to improve a bit and I headed back up north to my parent’s house.

When I returned to my parents, I became established with a GI out of McLaren hospital.  A few weeks later, I went back in through McLaren’s ER.  I had the same doctor as the first appointment, and he apologized for his behavior in my first appointment.  He gave me IV fluids and potassium again, and they admitted me.  During my stay, they set me up with an infectious disease doctor who did consults with me during this week-long stay, during which I did yet another round of IV vancomycin.

Once I was discharged, I saw the Infectious Disease doctor in her in the office to discuss the option of a fecal transplant and retest after Flagyl.  I still tested positive so they had me continue Flagyl, and we got the ball rolling for the stool transplant.  My cousin who lived nearby agreed to be the donor, and she had to go through multiple tests to rule out any diseases she may have that could be passed to me – HIV, hepatitis, infections, etc.  Though the results had come back and she had been given the green light, there were roadblocks in getting the procedure scheduled.  Because of this, I ended up back in McLaren hospital.  I was admitted and my gastro came to see me.  I asked for my infectious disease doctor to come do a consult as well, but she straight up refused.  She finally agreed to talk to me on the phone and had the gall to tell me that since I had C. diff for almost four months, what’s the problem in continuing to treat the pain while waiting another two weeks for my transplant.  Boy, did she hear it!  It wasn’t as if I had been leaving it untreated or refusing care this whole time, but I had been in the hospital six times and on six rounds of antibiotics.  This infection combined with my UC had left me with very minimal quality of life.  After pushing, she was able to get me scheduled for the next week.  They also let me stop taking the Flagyl that was making me feel sick, which I was thankful for since it wasn’t helping anyway.

Day of, I picked up my cousin’s sample and took the stool and the cheap blender I had purchased for the occasion and traveled to the hospital.  A NG tube placed by radiology – this is the first time I had one.  (A NG tube is through the nose then threaded down past your stomach to the beginning of your small intestine.)  There was lots of gagging and dry heaving while they placed the tube.  I threw up when they pushed the fecal transplant – I couldn’t taste it or anything.  It was just the feeling of the push.  The fecal transplant works by replacing the bacteria in your intestines with healthy flora.  From the first day into the hospital to the date of my fecal transplant was exactly 4 months.  I was thrilled that my C. diff cleared up completely within 48 hours after the fecal transplant.  If I ever get antibiotic resistant C. diff in the future, I would definitely push for this earlier in the process.

The Adventure of My Port & Me

February is my Portiversary month!  I have a single lumen power port that was placed two years ago.

Once upon a time, I had good veins that nurses were able to access.  After the many IVs started during my hospitalizations over the four months I had c diff and received multiple potassium infusions (which hurt like crazy) and other hospitalization for my ulcerative colitis, I became quite the hard stick.  The journey to getting my port began during my final loading dose of Entyvio.  On a Friday at the University of Michigan infusion center, five different nurses tried to start an IV a total of six times.  They brought out all of the tools in their arsenal and were still unable to get one started.  The infusion center was closing in less than hour, and I was told that I would need to reschedule my infusion.  Since I am not able to infuse during the week (except for Friday afternoons) due to the way Entyvio affects me, I was quite concerned at the idea of waiting until Monday for my infusion, and the effect it would have on the rest of the week.  Though this is not something that is typically done, one of the nurses was able to schedule my infusion for the next day in the hospital on the Thoracic Intensive Care Unit (TICU) floor in a small infusion room.  This floor had a dedicated IV nurse who thankfully was able to access me in one attempt – using a vein that had never been accessed on the back of my arm.

After my loading doses had finished, my infusions were moved to a center closer to my home.  During my first maintenance dose, there was similar trouble getting an IV started, but since there was more time, they were able to get one started after an hour or two.  Though we had thought about a picc line or a port after the U of M infusion, this is where the conversations truly began.  My favorite nurse at this center was working that day, and she sat down with us to discuss both options in more detail.  With my infusions being every 8 weeks, it was decided that a port was the better option, as it could be deaccessed between infusions.

I brought this up to my gastroenterologist, and he was in full support of a port and referring me to a surgeon – as long as there was evidence the Entyvio was working.  We scheduled a colonoscopy and my first upper endoscopy – as this GI thought I might have misdiagnosed crohn’s instead of ulcerative colitis.  During this scope, my colon looked the best it ever had since diagnosis!  Because of this, my GI’s office set up an appointment for me with their recommended surgeon.  The consolation went great and he made me very comfortable with the procedure.  He even gave me a port that I could look at to get an idea of what would be going into my body (Honestly, it made me think of a mouse! Haha).  He was able to get me on the schedule before my next infusion – which was great!

PowerPort_Slim_backview2

The day of my surgery, I was quite anxious, and since they wouldn’t allow my now husband to come back to the pre-op area at first, my anxiety was heightened.  While in pre-op, I debated with my husband whether or not I wanted to do this surgery.  (Spoiler alert:  I am extremely glad he encouraged me to follow through.)  When starting my last peripheral IV, the nurse injected lidocaine in my arm but I could still feel her digging and having a rough time finding the vein.  They ended up giving me two doses of a calming/anti-anxiety medication through my IV, before the surgeon came in the room to talk to me.  After speaking with him, I agreed to move forward with the surgery.  He did say he would check back in with me before I was wheeled down to the operating room, and when he didn’t, I started having a panic attack as they were transporting me.  They ended up giving me a third dose right as I began talking to the doctor and then they pushed the anesthesia.  And then I woke up with a port!  It was not my finest hour nor my proudest moment, but I am so glad that I pushed through the anxiety because the end result has made my life so much less stressful, as well as reducing my anxiety when going to infusions and hospital trips.

During recovery, the site was painful for a bit, but that didn’t last long.  Most of the discomfort was due to the skin being stretched out over the port.  I wore loose tops for the first week or so as that helped lessen the discomfort.  I did ice the site many times throughout the day.  While I was healing, I did somehow pull one or two of my anchoring stitches (the silicone on the side of the port is used to anchor it in place), which wasn’t uncomfortable for long and the only lasting effect is that my port shifts a bit if it’s not being held steady while accessing.

My first infusion with the port – and every infusion after – went splendidly.  I used to always dread infusion days even though it made me feel better because I knew what an affair it would be to get my IV started.  For my first few infusions, I did use the Emla cream prescribed, though I haven’t used it since.  It helped make me more comfortable as I was getting used to the port, so I would definitely recommend it.  One of my nurses suggested covering the Emla cream/port site with the Press’n Seal cling film, which worked very well. If you have IBD and are talking with your doctor and/or a surgeon about getting a port, I would suggest asking it to be placed on your right side.  Mine is placed on my left, and though I was still able to use it, it made things a bit tricky at my colonoscopy last month, as patients need to lay on their left side for that procedure.

Port Accessed

Caring for the port is pretty simple.  Thankfully, since the port is under the skin, there is not much risk except when accessed.  I am able to shower, take baths, or swim without having to take special precautions.  Since my infusions are only every 8 weeks, I get my port flushed and locked with heparin every opposite month.  When I do have a fever or other signs of infection, I have to have blood cultures taken from both my port and a peripheral site to verify that there isn’t an infection in my port.

Whether you have a port, picc, or get regular IVs, you know your veins best.  Advocate for yourself, and when you’re getting a peripheral blood draw or IV, assert that nurses access only the veins you’re comfortable having accessed.  I often have nurses insist that they can get a vein that many nurses before them haven’t been able to successfully access.  I have reached a point where I now stand my ground and only allow them to draw blood or start an IV on select veins.  Thankfully, many nurses I have encountered have the mentality that I know my body best.  I still come upon the occasional nurse who fights back, but I ask for another nurse in those situations.  I really stand my ground because that’s what’s best for me and my body.