Southern Blur

During the 2015-2016 debilitating Crohn’s and Colitis flare, my life became blurred; I lost sight of family, friends, even Pooch. I was not interested in the fight against what I was told were lifelong autoimmune diseases; I did not take into consideration those my outlook would impact. Those very people who were by my side the previous years, plus my brown-eyed girl.

In the South, we have many “-ism’s,” aka Southernisms – if you are unfamiliar with this one, behold. My then boyfriend “gave me a good talking too,” without apology; amazingly, it worked. This man, who had seen me at my somewhat best and now, at my worst, gave it to me straight. He told me that I was not the only person I was affecting, that he was in the picture, my family, his family, my nephews and nieces were all touched by the incessant Crohn’s and Colitis symptoms of my illness. How sad it would be to not see them grow, to never again celebrate birthdays, holidays or take pooch to the beach. He explained what a hole I would leave in the lives of those who loved me, and how I needed to get myself up and deal. Guess what I did? I dealt.

My go-getter Mom scheduled an appointment with recommended GI#5. My parents drove me to this appointment and we were on edge, as if riding the wheeled platform of a dust billowing chariot on an open field of armored troops, not necessarily as a form of transport, but rather like we were facing impending warfare, not sure what to expect compared to the plethora of past GI experiences. Dad, the fierce, Corinthian helmeted warrior driver, mom the hawk eyed, bow and arrow yielding archer, daring anyone who would thwart our galloping, Spartan pursuit; I was in charge of, well, not shitting myself.

GI #5 did a thorough examination, from looking at my fingernails to asking details about my arthritis, stating that most people with Colitis/Crohn’s Disease have arthritis. News to me. By then, I had 2 established fistulae and would develop two more under his lack of care. Did I just type that?

He recommended a new biologic; having been kicked off of my pre-existing insurance by Obamacare, that was out of the question as I was still paying for my previous biologic infusions. GI#5 prescribed 6mp (chemo in a pill), iron supplements and this new, out of the question biologic, along with prednisone. He warned that if my anemia did not improve, he would put me in hospital for transfusions. At first mom and I thought GI#5 was golden; he and his staff were attentive, saw me regularly and staff returned my calls. He recommended a new colo-rectal surgeon to see about the latest obnoxious fistulae. Being content with and trusting the one I already was under the care of, I refused to see his recommendation and things went south with GI #5, pun intended.

I saw my brilliant colo-rectal surgeon who had dealt with my glowing fistulae history; he told me that I had to treat my Colitis/Crohn’s diseases like cancer, and said he might consider a colostomy bag to let the intestines heal because my colon was in such rough shape. Mom asked how long that would be in place, he answered that he did not know. Wake up call.

At that time, I had been on 6mp for 2 months and was asked how my labs were by the surgeon. Immediately I felt microscopic, like someone standing aimlessly, mouth agape, with no particular destination, yet wearing a look of remarkable ignorance. I know I looked dumb, asking “what labs?” Shaking his head in disbelief, surgeon explained how 6mp required monthly routine blood work – not once did GI #5 order labs or suggest I needed them. Surgeon examined my abdomen for signs of distention and pain, tell tale signs of life threatening 6mp side effects – thank the Good Lord I was ok. Long story short, I fired GI#5 and we tuned our chariot to a different compass.

As a side note worth mentioning, one of my new and fabulous “Crohnie” friends mentioned how she was told to make arrangements for and prepare her kids and husband for the worst during the latter portion of her 25 year battle with Crohn’s Disease. She had not responded long term to mainstream medical treatments and was told no one could do anything else for her. I mean, what do you even do with that? That is what Crohn’s and Colitis can do to our bodies and my heart goes out to her and other’s parents/spouses who must consider the unthinkable. Thank God, she is in remission from her anti-MAP therapy!!

2 comments

Judy Wanamaker

Such a harrowing journey through the unknown. Prayers continue.

Thank you, Miss Judy. We are getting there!

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