So yesterday I had the most fun day off from work ever.
And be warned may be TMI in here, but TMI is my life these days :)
Tax fun in the morning which took entirely too long for a simple return.
Followed by needing to prep for another procedure (flex sigmoidoscopy) and then the procedure itself (similar to a colonoscopy but less invasive and no sedation).
And not eating until 5pm which was definitely the hardest part for me! Don't deny me food. Ever.
I had been waiting for my doctor to return from vacation the past couple of weeks to finally get this done as things have progressively gotten worse.
The fun part of the procedure was that I was awake this time and got to watch the camera output. The former pre-med student in me found it interesting and you know something to focus on instead of what was going on.
Basically things are now labeled “severe” as a result of what he saw.
And my doctor is yet to distinguish if it is Crohn’s or Ulcerative Colitis. My colonoscopy had him 90% at Crohn’s but based on yesterday more symptomatic of UC. The gist of it all is that treatment is not working and also he said based on seeing this (he didn’t do my initial colonoscopy he is going on another doctors findings) there is no way in hell that Asacol would have put me into remission.
Things have managed to go from bad to worse in the meantime while the anti inflammatory meds are not working.
So as of now I am on prednisone – I wanted to avoid steroids (because, vanity and knowing some results can be unpleasant) but I will really do anything at this point.
I will be going back to him next week with hopeful improvement. But if things don’t start to get better soon, he wants to discuss going on remicade (IV infusions every 8 weeks or so) which again not thrilled about but it is what it is.
I am on more than 5 months of this flare and kind of want my life to get back to some sort of normalcy. I am no longer woe is me but it does kind of suck to feel shitty most of the time.
So here’s hoping that I don’t get a puffy face and acne, but that my gut does start to heal itself and stop bleeding. And not worrying about where every bathroom in NYC is located.
Ugh that sounds horrible....thinking of you, lady...ReplyDelete
Thank you! It's been a rough time the past several months but I am just hopeful we are on the right path to remission. Learning patience.Delete
Sending healing vibes your way. That sounds horrible :( I hope you get relief soon. And I know what you mean by fasting.. that was me yesterday waiting 5 hours in pre-op only to be sent home :( I was mad I couldn't get surgery done but even madder I was starving all day!ReplyDelete
Thank you for the well wishes! To fast and then not have surgery...would drive me crazy I am not the most pleasant person when hungry ;)Delete
I am so sorry you're having to go through this Gianna. Really hoping things turn around soon. Sending you well wishes from CA!ReplyDelete
Thank you so much Jen! Hopefully getting closer to remission. I think some warm CA weather would be a magical cure :)Delete
I so know what you are talking about, and I am sorry that you are going through this. Though I don't know the full extent of what you are dealing with, I have been in your shoes, and I am hoping that you get a new pair soon. If you ever need to talk about Crohn's UC or the treatments, please let me know. I'm glad that you have a great doctor that you feel so comfortable with--that is so important. Take good care of yourself.ReplyDelete
Thank you so much! I found your blog from another earlier this week and have been reading up. After being dismissed a couple of years ago I just dealt with it until things got awful right before Chicago marathon this past fall...took me a couple months of misery before I went on the GI doc hunt and now am on my second awesome one. I'm on asacol, canasa and prednisone and today might be d day for if we are going more aggressive...just taking it in stride remission will come! Thank you for the support as I am someone new to all of this just trying to get a grasp on it all and understanding.Delete