Hope is Draining - Clinical Trials and Leaky A****
I have had a leaky butt for three years. (I like to just cut to the chase sometimes). When they first drained my abscess and put in my setons (surgical wire that keeps a fistula ((basically a small track from the intestinal wall to anywhere else in the body)) open and draining outside of the body) they said it would only be six weeks. Well, here we are, all of this time later.
The beginning of my relationship with them was draining and filled with hatred. They made me feel dirty and freaked me out. What was inside of me? How would I need to take care of it? How would it affect everything else in my life? How would I even poop??
Eventually most of these questions were answered through experience. Such as I couldn’t hold off on the first poop for forever (thankful for my portable bidet it was a life saver in sensitive moments like this one), and everything else came with more experience.
The more I conquered, and the more I didn’t let it get in my way, the more accustomed I became to them. They were a part of me and I had to get used to them just like I have had to get used to living with my Crohn's. I always hope that they can come out though, with every additional dosage of medication, and every increase in dosage size, gets my hopes up that the end is near. That I will finally be freed of my butt jewelry. But here we are, three year, two doctors, two surgeons, and three different medications later.
My most recent appointment with my GI doctor created the need in me to once again remind her that I have these precious little gems inside of me, as if she has forgotten. After having been denied from her one experimental process that could be offered to me--a clinical trial, I could tell she was out of any new and innovative ideas to quick fix my now three year annoyance.
Until I heard from her two weeks later, with a plan in hand. She wasn’t going to take a no for an answer from the clinical trial. She utilized my colonoscopies best pictures from back in December to impress them into submission--and it worked. My one and only shining light in my leaky tunnel was finally shining on me, and no matter how time consuming I knew it would be, I knew I had to jump on it.
To me it was always a no brainer decision, so no matter how many risks or adverse affects there could be down the line, I knew I would always say yes. It was either this or keep playing medical roulette with prescriptions--and I am honestly tired of fighting with CVS at this point to start a whole new game with them. Sooo clinical trial it is.
If you have never been a part of one, then let me help enlighten you. I basically have signed over my body to them for the next ~year. The first 6 months are the most intense, filled with the most appointments, surveys, symptom tracking, and procedures. Plus there is a pretty steep initiation phase where they really beat you down a bit to make sure are ready for how rigorous it is.
First appointment--32 page consent form presentation filled with the juicy details, blood draw, and anal exam (personal fave). 2 weeks from then I had an MRI w/contrast and all the yumminess that comes with it. Then usually people also have to do a colonoscopy, but lucky for me I already did one in December, which they have gracefully accepted as useful data for the study.
March starts my procedure month, where they get to the real nitty gritty of the trial. First procedure includes a fun flushing of my fistulas and a fresh set of drains. I get to test drive the new set for two weeks while I douse my body in a week of Ciproflaxin (to really give me that all over glow). Once that is over I get the grand finale-- the removal of the drains and the filling of my fistulas with either the stem cell miracle drug, or the placebo. That is right folks--50/50 chance here for either. I will not find out for another year after the procedure which one I got, but depending on my symptoms I will most likely have a guess on which one I received by the time I get the answer.
It's all….amazing and a lot. I have been traumatized from medicine multiple times before so putting my full trust into people who could potentially not help me out in the end is a lot (to say the least). I do not use the word trauma lightly, because I believe it gets overused a lot these days, therefore when I say it I really mean it. The medical field has let me down on many occasions. From my doctor's secretary not scheduling my Remicade infusion during the correct time frame leading to my anaphylaxis, to my doctor's PA not giving me my MRI results properly so I wasn’t aware of how bad my abscess was leading to me almost being paralyzed. Do not even get me started on the amount of testing I sat through leading up to my original surgery, where none of it showed how many fistulas I actually had or how sick I actually was…how do you just go back to having full faith in the same broken system that has broken you so many times itself. For me I just kind of muddle through it and keep going, putting my faith in myself more-so making the right decision than in the people doing/prescribing something to me.
So in the end I have hope that I will at least feel a bit better from these procedures coming up--and I have faith that there will be a cure eventually to the kind of fistulas and setons I have. But for now I just get to clench my little booty hole and hope for these to be my last setons for a very long time.
