Thursday, September 17, 2015

Being a Sick Person

I've not been feeling well lately (I know, big surprise) so after an ER visit, a CT scan and a trip to Dr. GI, it was confirmed that my Crohn's is flaring in my colon again.  I'm back on Entocort and Pentasa and Dr. GI said if I'm not better in a month we'll have to talk about an anti-TNF drug like Humira or Remicade.

I've felt horrible for so long but it's always been "nothing" because all the tests showed "nothing" being wrong.  Now all my tests are showing stuff wrong and it's becoming real (to others) that yes, I am an actual sick person.  It's not in my head.  I'm not making it up.  I'm not crazy!  The way I feel is finally justified. And that's how I felt for the first few moments.  But now reality has set in and I am kinda freaking out.  I'm sick. I have something wrong with me for real - a disease.  I have to take a lot of medications and they have big scary names and even worse side effects.  My body is going to get worse before it gets better.  I could have complications.  I could need surgery again.  I'm scared.

Sometimes I spend so much time trying to be the perfect Crohn's warrior.  The activist who has it all together.  I've been there, done that and made it through and so can you!  However, I'm back there again and I don't know how to process the feelings of being a sick person who is actually a verified sick person with real tests and proof.  I fought for so long for someone to actually listen to me.  Pooping as much as I do isn't normal.  The pain I have isn't normal.  And I was right.  So now what?

2 comments:

Caroline said...

This has happened to me too, this year. What you do is you take your medicine, you keep on pooping, the pain gets better, you still poop, but then that gets better too (not normal, but still better). And that is because this time they caught it early and it hasn't been festering in your gut for as long as the last time before someone finally caught on and believed you for once when you said something was wrong. And the catching it early thing is a godsend because you will be better real soon. So you're thankful that even though you have this awful, disgracing disease, at least now you're a little more the boss of it than you once were. That's how it turned out for me anyway, and I sincerely hope it'll be the same for you!

Anonymous said...

I am thinking of you Jenni, and others who are sick with Crohn's and related illnesses. My body is similar in that the doctors' tests do not always indicate what I am feeling. Your website helps me see that other people are having gut trouble too. I am thinking of you and hoping you can feel more comfortable again soon. Do you like to take baths? During my most painful flared times Epsom salt baths relived some of the pain. I took Remicade for about 4 years and it worked very well for me.
Thinking of you :)