March Awareness Month

March is the month of awareness for endometriosis, autoimmune diseases, and colorectal cancer.  I’ve written and rewritten this post in the notes on my phone a few times.  All three of these things are very important to me, so I wanted to make sure I got it right.  I am affected by two of them, and the other is something for which I am at a higher risk.  Between my flare this month and a little, good old-fashion procrastination, I unfortunately missed the deadline I set of completing this post in March.  I hope this post can still help explain why awareness is still important – even in April!

Ever since a young age, I have had horrible abdominal pain since I was pre-menarche and equally bad cramps and heavy periods since.  During a hospital stay for my ulcerative colitis, they found what looked like a cyst on my left ovary during a CT scan and scheduled a pelvic ultrasound to get a better look.  It was discovered that I had not only a cystic ovary, but what looked to be endometriosis.  There isn’t nearly enough research done on endometriosis and there is so much more that needs to be discovered.  My gynecologist and I decided surgery for both would be the best option.  Unfortunately, my surgery needed to be rescheduled twice due to ulcerative colitis flares.  Finally, on Christmas break of my final year in college we were all set to remove the cyst and any endometriosis that we could.  The game plan was to try and save the ovary and just remove the cyst, only to learn that the entire mass was a cystic.  My gynecologist wondered if there ever was truly and ovary or just a cyst.  She also found that the endometriosis was binding part of my colon to my uterus, but was able to laser the endometriosis off.  It was a laparoscopy surgery done with the da Vinci machine, so though I have five scars, they are all small and three have faded well.  Since surgery, I’ve had far less cramping and pain due to endometriosis, and I haven’t had a notable reoccurrence.

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My oophorectomy scars 4 years after surgery

Autoimmune disease is also something that is very important to me, and thus, so is spreading awareness.  I personally am diagnosed with Inflammatory Bowel Disease, Endometriosis, Celiac disease, and had drug-induced Lupus from Remicade treatments, but believe that spreading awareness for all autoimmune diseases is important.  Though there are studies done, there is so much more that is still unknown with autoimmune diseases.  Many people need to see multiple specialists before being diagnosed or set up with a treatment plan right for them.  Awareness leads to the spread of knowledge and drive for research funding which leads to better treatment options and hopefully – one day – cures.  American Autoimmune Related Disease Association is a national non-profit that is focused on research, advocacy, and providing patient resources for all autoimmune diseases (and is actually located local to me in Michigan!)  They have great resources on diagnosis tips and having conversations with your doctor(s), as well as studies on the connection between women & autoimmunity.  Great discoveries are fueled by funding and knowledge gained from advocacy and awareness of autoimmune diseases, so speak up and tell your story!

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Baby Lauren deep in autoimmune research

March is also national colorectal cancer awareness month.  Though most IBD patients won’t develop colorectal cancer, the risks are higher for us than those without IBD.  It is recommended that people with Crohn’s disease or ulcerative colitis receive a screening colonoscopy once they’ve had the disease for eight to ten years – especially if there is a family history of colorectal cancer.  My maternal great-grandma died of colon cancer when I was young, so I am extra diligent and so is my GI team.  I had my first cancer screening colonoscopy in January of this year, and sixteen biopsies were taken, including the removal of one polyp.  I am happy to report that I am in the clear!  These screenings are very important, especially as someone with IBD, and colorectal cancer is treatable when found early.

All three of these diseases are near and dear to my heart, as they affect myself and those I care about.  Even though it’s April, it’s never too late to keep spreading awareness of our stories!

Hospital Essentials

As I’m sure many of you understand, I never want to be in the hospital.  I never get much rest, am at higher risk of infection (especially if I don’t have a private room), and would much prefer to be home with my husband and pups.  Because of this, when I am in the hospital, I like to do what I can to keep entertained and comfortable.  I am typically kept overnight for observation – if not longer, so I bring my toiletries from home including gluten free toothpaste and Burt’s Bees Sensitive Skin face wipes.  My baby blanket tags along for the adventure, as I can’t sleep without it.  As a spoonie in the 21st century, I also pack my phone, computer, and both chargers in my bag.  Netflix and Hulu can help make a hospital stay better outside of visiting hours and distract from the pain.  Sometimes I feel silly bringing my big bag into the hospital with me, but it’s worth it to feel more comfortable while I’m there.

Depending on how long the stay is, I have my husband bring a change in clothes and coloring books when he visits.  As I said in “Keeping Cozy,” button up shirts allow easy access to my port while being much more comfortable than a hospital gown.

What do you bring from the hospital to help you feel more comfortable?

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.

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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.

My Home Infusion Experience

I have tried my fair share of medication to find the right one(s) – including Humira, Remicade, and Entyvio.  Humira provided some relief, until my 4-month bout of c. diff – afterwards increasing to weekly injections without a difference.  During my last “loading” dose of Remicade, I began having drug-induced Lupus symptoms.  Though I’m not at 100%, Entyvio and methotrexate have reduced the inflammation and the amount of ulcers in my colon.

Until this year, my Entyvio infusions were in an out-patient hospital setting in one of the main branches of my hospital system.  Due to changes in coverage with Blue Cross Blue Shield, this was no longer covered, but they do cover home infusion care.  Especially with the current flu epidemic, I was more than happy to avoid the hospital and relax in my home.

5. Infusing

Because I was notified of this coverage change in advance, and I knew how long changes in care can take to process, I reached out to the home infusion provider in November 2017.  Unfortunately, I was still following up to get the order processed and authorized by insurance the week before my infusion.  Thankfully, once everything was processed and I was called by scheduling, there was a nurse available on Saturday and I had my pick of times.  With how close we were to my infusion date, that was my biggest concerns, so I was relieved when my appointment was finally on the books.

There were a few things that were different (and initially concerning) that I learned from the scheduling call.  The biggest one was that this company doesn’t use an IV pump to administer Entyvio since it’s infused through such a short time period.  Since I have always infused with a pump, I was nervous how they were going to time it for it to run at the correct rate.  Day of, I learned that instead of a roller clamp, the tubing had a twistable clamp with a variety of mL per hour measurements noted around the circle.

5. IV-Entyvio

Three days before my infusion, the company sent over my Entvyio, pre-meds, an anaphylaxis kit, and any other supplies needed for my infusion – including an IV pole.  Because I wanted a pole of my own with wheels, I ordered one (and a small folding table for the nurse to use for prep) on Amazon Prime.

5. Supplies Delivered

The nurse I ended up having for my infusion was extremely nice and very helpful.  Because I had gotten mixed messages from the company on whether or not my husband could be trained to flush my port, she walked my husband through the process step-by-step and wrote out detailed notes, just in case.  The infusion ran really smoothly, and it was interesting to see how the process differs from facility to facility.  I was nervous before the infusion, as I’m normally used to nurses who are balancing multiple patients, but I would be happy to have her as my reoccurring nurse.

5. Supplies Set-Up

It was a very smooth experience, and I am excited that I can continue my care at home.  Anyone who is considering home infusions, I would definitely recommend it if your insurance covers it.

Slug blood

Now that we’re a couple of posts in, I thought it would be a good time to regale you with a tale of one of my many misadventures.  Since I’m on a biologic and methotrexate, my rheumatologist has instructed me to go to the Emergency Room for labs, blood cultures, a urine culture, and sometimes a chest x-ray any time I have a fever.

One day this past summer, I was feeling really dizzy and had a temperature of 102.5*F.  A doctor at my local ER ordered all the tests above as well as fluids.  Since I have a medical port (which I plan to discuss further in a later post), I have cultures taken from my port and a peripheral site.  The nurse cleaned both sites before collecting the samples.  They kept me overnight for precautionary IV antibiotics and discharged me the following day.  Blood cultures take about 5 days to receive results – at least in my hospital system.  During this time – and until I got a negative culture – I was not able to take my immune suppressants.  Because of this, my pain and other symptoms increased.

I received a call the following week letting me know my peripheral culture grew, but it could have been a contaminated sample.  They wanted me to return to the hospital to repeat both blood culture samples.  I was initially admitted, but I fought to be discharged as the culture wouldn’t be back for days and they did not have a care plan in place.

The results for the second culture were released during an appointment with my rheumatologist, so she gave me the news.  This time, the sample from my port is the one that grew.  The bacteria were found to be Moraxella osloensis – a mutualistic symbiont of a slug parasite.  Since this was way out of my doctor’s wheelhouse, she called one of her friends who is an infectious disease doctor while she was still in the room.  Neither could figure out how this bacterium was introduced into my central line and the other doctor wasn’t able to get me on her schedule until 7 days later.  There were concerns from all ends of what would happen if it were in my blood and if my port would need to be removed.  Back to the hospital I went…

During this trip, I had one of the best nurses I’ve ever had.  She was unbelievably understanding and wanted to make sure this was the final round of my blood culture battle.  She wiped down both areas multiple times to avoid any contamination.  She also used a pediatric blood culture set for my peripheral draw, as it wasn’t giving her much of a sample and she didn’t want to have to poke me again.  As I said, one of the best nurses I’ve had.  Thankfully both samples came back negative for any growth, and I was in the clear to begin taking my medication again!

Being off of my meds for about 20 days was very difficult, as I’m sure you can imagine.  When getting cultures since, I always make sure they wipe down the area thoroughly twice to avoid a repeat of this situation, and so far, it’s worked! (Fingers crossed!!)  Please learn from this, and never be afraid to speak up.  You’re your own best advocate!

And still no answer to the slug-killing-bacteria contaminated sample…