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!

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.