1.28.2016

GI Hip-Hop-Happenins

Back in August, some strange GI symptoms (severe cramping, constipation, abdominal pain, black colored stool, and excess bleeding) began to alter my daily routine(s). I wasn't on many prescription medications at the time and was taking a high dose of magnesium to help with nerve pain...yet somehow, these issues were still pummeling me. They came on slowly and then seemed to show up all at once.

In late August I started prepping for a colonoscopy (that we had hoped would get to the bottom of some of these things) and I also moved back onto campus. After doing so, my symptoms became much more pronounced and the pain became unbearable. My mom and sister ended up driving to the cities to get me and my mom and I then proceeded to spend an evening/early morning in the ER where no tests were run and my pain was hardly acknowledged.

The next 3 days consisted of a clear liquid diet. My sensitive stomach couldn't even keep down anti-emetics and after doing my weekly methotrexate injection, I spent the night vomiting on the bathroom floor in borderline hysterics. I remember feeling so defeated that night and absolutely did not know what I would do if the colonoscopy didn't reveal something -- ANYTHING -- that might give us some sort of an understanding as to why my pain and symptoms had been worsening so rapidly.

I managed to complete the prep and the colonoscopy was finally completed the next day. It was noted that there was a small amount of irritation at the end of my small intestine. This irritation consisted of redness and swelling and could certainly be contributing to some of the pain flare, but the physician who completed my procedure wasn't convinced. He casually threw out the words "possible early stage Crohns disease" and sent my mom and I on our way.

The GI I was seeing got the results and told me "there was nothing diagnostic to see" and that there didn't "seem to be anything wrong!" As I went over my symptoms again with her, she said..."well, if you really want to, I suppose I can refer you to someone else for a second opinion?"

HA. E-patient OUT.


Instead of taking her *passive* recommendation, I called my insurance company and asked what GI specialists they covered within other nearby hospital systems. I located one of the clinics, got a referral from primary care, and was scheduled to see a new specialist about a month out. I also scheduled a consult with a colorectal P.A. just to get another opinion on board.

As I waited for the appointment, the GI symptoms persisted as did the symptoms/pain from my autoimmune arthritis. As I was put on other medications to treat the pain and degeneration in my joints, my GI system got completely overwhelmed. I was rapidly losing weight (nearly 30 pounds at this point) and the blood in my stool was becoming excessive. Hope was running low again, but because my symptoms had gotten so much worse I figured there had to be some sort of news on its way.

Colorectal saw me pretty quickly and gathered that I'd developed a fissure. I got some lidocaine cream to help address the pain, but they really wanted to get endoscopy results before moving forward any further. Then, FINALLY the appointment with a new GI specialist arrived. Immediately, she asked if I had ever been checked for a stomach ulcer. "No," I told her, choking up...anticipating that she, too, would send me out the door without any suggestions or a plan of care. Instead, she explained that she was concerned as my symptoms almost completely aligned with an ulcer and wanted me to get in for an endoscopy immediately. The next morning around 11am, I was told that there was indeed a 10mm bleeding ulcer harboring itself in my stomach and nearly perforating its lining. Two weeks on the same pain medication regimen could have easily meant a life/death surgery and permanent, severe damage to my GI tract.

[Sidenote: the doctor who performed the procedure and the GI specialist who has been following up with me have both been absolutely fantastic. My P.A. calls me regularly and she has made it clear that we are not stopping until the root of these issues are found and addressed.]

I have been on a medication called Linzess since early December to no significant avail. It has somewhat helped address the issues of painful constipation, but I am still going 1x (MAYBE 2x) a week. We discussed the switch to another (stronger) drug called Amitiza, but my insurance copay for it is nearly $200 a month. By a long shot, I also got approved for/started Humira to treat my arthritis which may also have some effect on the GI inflammation my body is experiencing. I've also been taken off of all oral prescription pain pills in hopes of curbing some of that. constipation. On the prescription front, we are pretty maxed out right now.

Yesterday afternoon, my P.A. contacted me again and we have decided to move forward with a colonic transit study immediately as well as a repeat colonoscopy + endoscopy in early March. I'm headed in this morning to swallow my markers and will return in 6 days for an x-ray that will hopefully show whether these issues are stemming from my colon or pelvic floor muscles. We will then take that information to create a plan of care and figure out where we're headed next. I go back to meet with a colorectal surgeon two weeks from now, too, and am already nervous about the options that will be presented...but I trust this team. I trust them. And I know that's huge.

It's a bit strange to be praying and writing about poop abnormalities these days...but I'm over being secretive about it. Far too many people who are suffering from similar issues feel as if they are completely isolated in the dark right now. Heck, I feel like I'm there. But there is just something about bringing light to situations through words and the telling of one's story that changes that. That's what this blog is meant for, after all.

If you're the praying type, SEND THEM ALL! I need some serious discernment. I have lost far too much sleep over these symptoms and am done giving them so much of a foothold in my life...but some days, it feels like there is absolutely nothing more I can do to retaliate.


Still smiling. Or smirking. Or forcing myself to do one of those things. Something like that. ;)

9 comments:

Kirsten Schultz said...

Ah love, this bothers me so much for you. You are incredibly strong and I can't help but admire the vulnerability you share with people in order to share the truth. Love ya bunches!

Kate Mitchell said...

Sending all the love and pain your way. You deserve it and so much more.

Meghan said...

So many prayers and hugs sent your way, if you ever need an ear to vent to, I may not always have the right answers or words to say, but I will always listen. xo.

Jen said...

Sending love your way as always dear friend!

Jodi Tivey said...

OH sweet Kenzie, I am so so sad to hear all of this but so happy you are finally finding SOME answers and are in good hands! Much love and many hugs to you always sweet girl!

EdyeNicolesMakeup said...

I just found your blog and really enjoy reading it! I will keep you in my thoughts and prayers <3

Blessings,
Edye

henning love said...

keep up the fight sweet kenzie! don't settle for sub-par answers, keep searching, keep finding those great doctors that are willing to go the extra step for you and your symptoms!

Mrs.AOK said...

Wishing you all the best!!
I know it's tough to talk about GI problems, trust me, I know. it's good that you share your story, you may be helping someone who has no idea what is wrong with them.
I'm SO HAPPY you got that second opinion! I hate when doctors are passive with their patients' health. In the past I think I was slightly blown off because of my age, so I can only imagine you were getting the same treatment because you're young. Not fair.
Take care!
XOXO
www.mrsaokaworkinprogress.com

Laura Marie Keenan said...

Wow, an intense post to jump in on! Your willingness to share is so wonderful and will indeed help others. Praying for you!