Musings on Remission

The way I see it, I’m dealing with two chronic illnesses: the ulcerative colitis and the trauma stuff.  (I’ve decided “trauma stuff” is its name because that’s simpler than C-PTSD/DID/depression/anxiety/ED, because while all of those are technically different disorders, I think they’re all the same thing–all trauma stuff.)

It’s interesting to consider the treatment approach for the two illnesses.  In particular, I’m thinking about the approach to meds.  Initially, it’s similar: hit it hard and fast to get the symptoms under control.  In the world of UC, the doctors talk about achieving remission.  Psychiatrists never use that word, and I’m starting to wish they would.  It’s a word full of realistic hope.  It acknowledges that the illness is chronic and will flare up and require more aggressive treatment at times, but it also tells you that there is hope that you will have periods of normality, periods when you function just as well as people who aren’t ill.  Hope, you see?

And from the beginning, my gastroenterologist talked about reducing meds drastically once I achieve remission.  We’re not there yet; we’re still in the period of having to add more drugs, often potentially toxic ones, to get to a state of remission.  But he already has a plan for decreasing once I’m in remission–the order I’ll go off the drugs, the schedule for reducing doses, everything.

Until the last 2 years, I’d never found a psychiatrist who would even consider taking me off psych meds, no matter how stable I was.  Psychiatrists, in my experience, don’t believe in remission.  They’re taught–and then teach their patients–that if a patient is stable on meds, they’ll have to stay on those meds the rest of their life.  Reducing or going off medications is treated like it’s the equivalent of jumping off the roof–it might not kill you, but it’s not going to end well.

I don’t understand the difference in approach.  My gastroenterologist sees meds as a tool to achieve remission, not a long-term necessity.  Once you’ve hammered in the nail, there’s no point in continuing to bang on it.  I may have to stay on some meds long-term, but his goal is to reduce that as much as possible because he knows the drugs can be toxic, and even if I’m not having terrible side effects, they’re not a natural part of my system and shouldn’t be there unless they’re absolutely necessary.

I’m lucky to have a psychiatrist now who views psych meds in a similar way, but he’s an exception.  I can’t even count the number of psychiatrists I’ve seen in my life–probably upward of 30–and he’s the first one who’s told me I don’t have to stay on the meds.  He’s helping me sloooooooowwwwwwly reduce my doses, and he trusts me enough to let me make minor changes to my doses between meetings with him.  I just tell him, “I decreased the prazosin because I haven’t been having nightmares,” or whatever, and he doesn’t freak out on me.

But for most of the time I’ve been on psych meds (which is most of my life, from age 5 on, with a few unmedicated stretches) I’ve been told that disasters will happen if I go off or even reduce my meds.  I’ve been involuntarily committed for telling a psychiatrist I’d do it on my own if he wouldn’t help me.  I’ve been told that I have no hope for any semblance of a normal life unless I keep taking more and more meds at ever-increasing doses.

But guess what?  Those psychiatrists are wrong.  I’ve been decreasing my meds successfully, and I’m beginning to build a life that doesn’t center around my illnesses.  I think I’m close to remission.


1 Comment

Filed under Uncategorized

One response to “Musings on Remission

  1. You’re on Prazosin for PTSD too? I just got on it about 3-5 months ago and it’s helped reduce the nightmares tremendously. My colitis is currently in remission and I was also told that the goal was to get off the meds, I was also 10 so long term effects were a real worry. Since 10, I’ve had 2 relapses but caught them early and was back on meds for less than a year. My pdoc wants me on as little meds as possible but I seriously need some and it is frustrating when I need relief and he’s worried about overmedicating me.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s