Disclaimer: Incoming novel...
So I've lurked this website for a little while now, but figured I should finally take the plunge and join in the discussion!
I have been having troubles lately dealing with anxiety associated to Ulcerative Colitis; specifically, leaving the house, having a life and constantly worrying about
finding a washroom wherever I go.
But a little backstory might be helpful...
I was diagnosed with Ulcerative Colitis back in 2014. At that time, I was promptly put on a short course of Prednisone and Pentasa, both of which brought me into remission for a good two years. However, at the start of 2016, I noticed constant nausea that eventually got somewhat diagnosed as suspected pancreatitis. As a result, I was cut off from Pentasa (as this was suspected to be the cause), and brought right back into a flare. Over the next couple months, things got significantly worse, landing myself in the hospital and was promptly started on Remicade. This was truly my medical drug! Within 48 hours I felt significantly better (had a normal poop finally!!
). Unfortunately, another few months go by and I find myself needing more and more of the drug to reap the same results and ended up back in the hospital yet again in October for a severe flare. At this point, my gastroenterologist notified me that surgery was on the table. Thankfully, being put back on prednisone (while experiencing terrible reactions - tachycardia, night sweats, among many others) did bring me back to remission again, and I was concurrently put on Entyvio in hopes that might help. Unfortunately my body did not appreciate this drug, and after having horrendous and strange reactions (swollen arm, neon green stool, terrible fever/nausea), I refused to take it again.
In amongst all of this, early December 2016 I was diagnosed with small pulmonari emboli that thankfully I was able to catch before anything more serious happened and was stuck on blood thinners for 6 months.
Back to the Ulcerative Colitis difficulties... By February 2017, it was official: I had developed antibodies to Remicade, so I could no longer persue that as a medical intervention. Cue the start of Humira, which I have now since been taking since March 2017. I have not experienced any significant reactions to this drug as of yet (other than small amount of blood at injection site sometimes; even the pain isn't as terrible as I imagined), but I'm also unsure if it's helping much either.
All in all, basically since December 2016 when I last tapered off of prednisone, I have been flaring. There isn't crazing amounts of blood, but the urgency is really the worst part (oftentimes I have SECONDS to get to a washroom). Nothing is formed, and hasn't really been since December. Of course, if I were to go back on Prednisone, it would likely help, but the fact that my body is basically dependent on it to stop flaring doesn't bring me any peace of mind. All of these factors basically mean I'm always anxious to leave the house, which likely increases the likelihood that I will have to run to the washroom, which makes me more anxious as a result ...so it's kind of an endless cycle. I have been actively trying meditation and yoga, and have also talked to a therapist for mindfulness, but these have only helped slightly.Aaaanyways
. My question for all of you is, how does one get past anxiety of always having to be near a washroom? What kinds of things do you find help keep you/your colon calm, so you can go out and try to be a productive member of society? I understand that getting the inflammation under control is the absolute biggest priority, but are there any suggestions in the meantime while this is being figured out?
Thank you for any feedback
: UC (April, 2014), small pulmonari emboli (Dec, 2016)Currently
: Flaring, 10-20x/day. Too many Current meds
: Humira, Propranolol, MirtazipinePast/failed meds
: Remicade, Entyvio, Azathioprine, Cortiment, Salofolk enemas, Pentasa, Dicyclomine, Xarelto, Omeprazole, Pantoprazole
REFUSE Prednisone (terrible reactions), contemplating surgery