Keeping the faith in 'gorilla warfare' when progress is frozen

​It’s winter, and I think it’s really cold, but my gorillas haven’t frozen to death. In an episode worth watching titled “Bart the Mother,” Bart Simpson’s pet lizard’s babies get loose and start eating all of Springfield’s pigeons, which is great because they hate the pigeons. Lisa warns of an ecological imbalance, because the lizards have no natural predators, but the school principal assures her that a new slew of snakes will do the job. And then how will they get rid of all the snakes?! Snake-eating gorillas -- “when wintertime rolls around, the gorillas simply freeze to death.”
 
Ever since my Crohn’s diagnosis in 2005, I’ve felt like my medical team and I have been flinging cold-blooded disease predators at my body, only to have to then try to clobber the grisly results with mammalian heavyweights. Prednisone, 5-ASAs, 6-MP, three different anti-TNFs, bowel resection surgery. Which sometimes very quickly made my diarrhea, pain, fistulas, fissures, partial obstructions, rashes, and general malaise disappear. To then be replaced with moon face, extreme nausea and weight loss, weight gain, allergic reactions, dry mouth, constipation, blood clots, and 2 am ’roid rage/2:15 am collapsing in a puddle of tears.
 
So then naturally we medicate THOSE new problems (caused from either inflammation, medications, both, or who knows anymore), with laxatives, periodontic surgery and cleanings and dentifrices, antihistamines, more prednisone, exercising, not exercising, ankle air cast, different steroids, paleo diet, anti-anxiety medication, new cutting-edge anti-TNFs. And now I’ve added holistic medicine to try to make all of it better.

I had hidden in my back pocket that if someday I really pulled out all the stops and tried my best to feel better, that it would somehow magically, quickly all just get better.

​But more than any one of these symptoms or diagnoses, the hardest thing for me lately has been keeping the “faith” – not in any one branch of medicine or belief, whether holistic or traditional, Western or Eastern, what the GI doctor said last week versus what the rheumatologist thinks today. Because I sure have doctor- and discipline- and drug-hopped, and each specialist takes me off the supplements the others put me on. But hard staying hopeful that there is actually anything that can be done to improve my gut and overall health, and that I’ve either found it and should be patient or will find it so I need to keep looking. I may still have to spend more time than most people taking care of myself each day, but that time spent will pay off in me feeling pretty good much more of the time. Not perfect, not cured, but recovered.
 
For years, I didn’t dare even hope. In my 20s, I ate and drank and (not) slept and forgot about my medications as I pleased; at least I got to pretend I wasn’t sick, and just paid the price later. And I had hidden in my back pocket that if someday I really pulled out all the stops and tried my best to feel better, that it would somehow magically, quickly all just get better.
 
And it’s definitely not just all better. It’s all stop and go, lurching two steps forward then three steps back. But at least it’s changing, I am invited to think by my medical team. And on good days, I do think that. But with all this hope and energy directed at gorilla warfare right now, more than anything I feel really … vulnerable. Exhausted and excited and devastated and frightened and vulnerable, hoping and waiting for if/when my worst symptoms will go into a deep freeze.
 
Author Katie McLendon is a CCFA support group facilitator in Atlanta who was diagnosed with Crohn’s disease in 2005. She is a Certified Health Education Specialist with a Master of Public Health degree from Emory University, and works as an editor for the Centers for Disease Control and Prevention. Follow Katie on Twitter: @katiefmclendon

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