It’s been a while
since I began yet again on the journey to figure out what the hell is wrong
with me so figured I would update! Skip this post if you don’t have any desire
to read about my troubles :)
So here we are 5
weeks since I started with my new GI doctor and basically – there is nothing
conclusive.
I had the
colonoscopy which showed inflammation, ulcers, and a polyp but finally received
the biopsy result and he is unwilling to say it is IBD (Crohn’s or UC). On the
other hand, the symptoms are too severe to be in line with IBS.
My state of mind
right now is frustrated. On Friday when we spoke on the results I had a minor
breakdown. After the colonoscopy and seeing just how bad the inflammation was
he put me one anti-inflammatory. That worked wonders for a week and a half and
then miraculously stopped and all my symptoms returned with a vengeance. I am
still taking that but he is ordering another high dose medication to take in
conjunction to see if that helps. Both medications are IBD specific since my
symptoms are pretty much in line with that. But as he put it, I may be in the infancy of developing it. (Side note: if this is the infancy of IBD I do not want to know what full blown is like because I am miserable already)
I know people are
thinking they are helpful – throwing out I should do this “diet” or that, that
I am too stressed (but seriously do you know me? I am like the least stressed
person ever). The things is, I have been documenting what I eat daily since
2011 (with some missed here and there but it’s a habit now) and my body will
respond fine one day to something and then next flare up. Case and point I
literally ate the same meals for week’s straight recently and I went from awful
to a lot better to awful on the same diet.
I know it is my
right to be emotional. It is my health that I am talking about, but sometimes I
feel like it could be so much worse and I am overreacting. It is not as if this
will kill me. It just makes my life miserable. But I have also learned how to
cope. And know where ALL THE BATHROOMS are, life is sexy right now let me tell you. Want to know how fun it is to have to have a side bar with your bosses about why you might HAVE to run out of meetings? Yeah, that is life right now.
I think that was what got to me. I
have been coping. Living life around the symptoms. Just got used to "this
is how life will be". Then I decided to use the medical route again to
find some answers. I scared myself with how not normal it was and thought I
would have an answer. The why. And yet as of now, there is no "why".
Just a plan to keep things under control. I despise taking medicine. So that is
part of what has me upset now; being prescribed various medications, praying
they will help but not knowing the absolute cause of all this.
On the upside – I have been back to
running and while I feel like hell during the runs I have been making it
through them all! It’s like my body knows how much I need it. But I am sticking
to the treadmill for now, just in case, definitely too scared to take it
outside.
Total downer of a post but kind of
bummed out in general. Between not sleeping through a night for weeks and the
anemia plus other deficiencies I am tired. I am hopeful this next medication
will work and work permanently but it is wait and see for now. After being really upset Friday I am back at a little peace with it all at the moment. Obviously wish there was an answer but for now I will just take some symptom improvement.
I'm also not sure if I should get a second opinion or not? So new to the whole doctor thing - so if anyone has a stellar GI doctor in the city they would recommend to review my results and history I am open to it to see if I get a different opinion!
And with that, the end. Happy post to come next!
Hello! I found your blog recently via run eat repeat. I wanted to say I'm sorry about your GI issues (even though I know that sorry can't fix anything). I was diagnosed with Crohn's when I was 12 years old, so I totally feel for you. It's miserable. For about a year when I was first diagnosed, I tried pretty much every drug imaginable. If you don't mind me asking, which meds did your doctor start you on? Sorry if that's too personal. The main reason I wanted to comment was to commend you for your awesome attitude about your less than ideal situation. The unknown is pretty such as scary as it gets but a good GI will undoubtedly get you some answers soon. If you have any questions, I'm pretty open about this crap (pun totally intended!). Best wishes!
ReplyDeleteHi and thank you for the well wishes. I cannot imagine going through that at such an early age I can only be happy that this started later in life. I am quite open about it all just more worried about offending those who don't want to know so much ;)
DeleteI started on canasa right after my colonoscopy and now am on asacol as well. I am actually going to a new gastro on Friday that was recommended through a friend on Team Challenge so will be happy to have a second opinion. I like the current doctors demeanor and attitude but was disappointed when the biopsy was inconclusive and he just added another medicine.