Anxiety?

Hello all!

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

That book sounds interesting think I need to read it too.

I don't really have any suggestions just wanted to say I get it. Anxiety now a major issue for me too. It's hard because usually you can talk yourself down from anxious thoughts i.e. what are the chances of x, y, z happening etc. but with this disease the stress is real. We're all had accidents. I've just been on a week long family holiday. It was a Mare as far as stress/anxiety goes but didn't want to say no to kids & husband. a holiday with lots of car trips, multiple attractions a day, no idea where toilets would be. And coming out of one of my worst flares ever. And constantly worried about crapping myself. Ahhh sweet holiday memories lol I am also on iron tabs due to all the previous blood loss which some days made BM unpredictable vs usually contained to really bad mornings it could now hit later. I would be in the car with the family having a panic attack in my head. Sometimes I'd be fine all morning then once we went to go out it'd start.

Anyway sorry to hijack. The holiday was hard. I nearly shat myself a few times but overall wasn't as bad as I thought & glad I went. I always carry spare clothes/wipes & immodium as my security blankets & take it minute by minute. I'm still trying mindfulness too but find distraction counting, praying anything to stop thinking about it then I find the worst of the anxiety passes. used to have a much more carefree attitude i.e. if it happens it happens but I seem to have lost that perspective & anxiety takes over.

As if the disease wasn't bad enough physically the psychological is really hard too.

I don't think we can willpower our butts to not have a bm when we are flaring.

If I were on big-gun meds and still having accidents....surgery couldnt happen soon enough.

q

quincy said...
I don't think we can willpower our butts to not have a bm when we are flaring.

q

When my guts are really acting up that is true. I just lose control. But sometimes anxiety makes it worse. And other times anxiety is the major factor.

I can't count how many times I have walked out of the house, got in the car, and immediately had to run back to use the washroom. Clearly something mental driving the urgency.

Other times I have been out and about feeling like I will have to use the toilet urgently in the next 5 minutes but I never actually do. Some mental training helps make those feelings more controllable.

But of course there are also times when it seems like no mental exertion has any effect at all.

Anti-anxiety meds are typically ativan or xanax and should only be used short term or occasionally. You do need to be careful driving though as they can mean delayed reaction or drowsiness.