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!

Prednisone, Roid Rage, and Moon Face

I had started drafting this post about a month back, and Dynamo (Steven Frayne) coming forward to speak of his Crohn’s disease seemed like a great reason to finish and post it.  Here’s the link to a wonderful The Mighty article that includes Dynamo’s video and more information on the “MoonfaceForDynamo” movement (link).

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I was prednisone dependent for most of college – being thrown into a flare anytime I dipped below 15mg a day.  Once I began biologics, starting with Humira, I only needed prednisone during a flare.  I don’t know if it was because the length of time I was on steroids or due to other factors, but 3 years ago, prednisone stopped working for me.  I was no longer seeing any benefits or improvement from it – only the negative side effects.  Thankfully, my doctors have trusted me and my body, and I have not been prescribed it during a flare since then.

My moon face while on prednisone was one of my biggest insecurities.  Hearing strangers mention it was one thing, but comments (even the most well-meaning) coming from family and friends were definitely rough.  A few weeks before my final year of college began, I was in Resident Assistant/Housing training for the fourth time.  I wasn’t able to go to the camp outing that year due to a ulcerative colitis flare.  Though my GI at the time couldn’t get me in, one of the campus clinic doctors was very concerned and ended up giving me her cell phone number in case my condition worsened.  Though she couldn’t do much, she wanted to do what she could to help keep me out of the hospital.  When training resumed after camp, one of my fellow staff members exclaimed, “Oh! You weren’t at camp because you were getting your wisdom teeth out!”  This is my clearest roid rage memory.  In my head, I was screaming, “no, I didn’t get my wisdom teeth out, stupid!  It’s because I’m on fucking prednisone!”  Since she was a team member I liked, and I knew it would be inappropriate to scream at people during training, I responded by explaining that I had not and it was a side effect of one of my medicines.  Though I felt like the Hulk on prednisone (and the steroid-induced insomnia didn’t help), I had become quite skilled at hiding my rage and keeping up my Bruce Banner front.

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My first hospitalization during the four-month-long c. diff ordeal, there was a mix up with my steroids that ended with a lot more than moon face.  I was with my parents in northern Michigan at the time, so they called and consulted with my GI downstate – prior to the c. diff diagnosis. They had me on patient-controlled analgesia (morphine) that also gave me a small dose automatically at a regulated/scheduled rate.  Though it helped with horrible pain of the combination of c. diff and ulcerative colitis, it made me less cognizant of the care I was receiving.  It wasn’t until they were coming in to give me what they said was my “second-dose of steroids” that day that I began to be concerned.  My GI had said 30 mg of steroids, but the hospital heard it as 300mg and did not question it.  They were attempting to give 3 100mg doses throughout the day.  They insisted on giving me the 2nd dose as I was beginning to fight back.  I got my family involved.  I was telling the staff that my GI never prescribed more than 45mg, so I knew this wasn’t what he recommended.  They called my GI back and he was outraged.  I was so glad that I fought back and they finally listened, but it shouldn’t have taken that much effort for them to realize they were administering much more medication than I should have been receiving.  Needless to say, I blew up like a balloon.  Think Violet Beauregard.  My fingers were slowly turning into Aunt Marge’s from Harry Potter, and they hurt so badly they needed to be iced.  Thankfully, the swelling didn’t last long, and I went back to normal prednisone moon face, but that is not an experience I would ever want to repeat.

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A few months after my c. diff was cleared, my primary doctor ordered a bone density scan, which showed signs of early osteoporosis.  That obviously wasn’t just from this event, but also from the years during which I was steroid dependent.  Steroids definitely have their benefits in reducing inflammation, but they do have many negatives as well.  Though prednisone once provided me relief, I am personally glad that I no longer tolerate them.  Each patient needs to weigh the pros and cons in their specific case and make their own decision from there.  Moon faces, unite!