New Routine

This past week unfortunately hasn’t been the best in my journey with Colitis.  I have been struggling a lot with nausea and pain, which are both quite fatiguing. I went for a friendly visit with my GI doc up in Canton, Khalil Korkor.  He really has helped bring me back to life, literally.  He decided to basically change my entire medicine routine.  I went off Asacol a few months ago because the headaches and backaches were unbearable.  At that time, my doc told me that a maintenance drug was probably unnecessary, which I was thrilled about.  Not for long.  I am now taking Lialda, two pills in the morning.  I haven’t noticed any terrible side effects from Lialda yet, although I have only been on it for a few days now.  I am noticing mild to severe nausea and my stomach cramps are still insanely painful.  I read online that nausea can be a side effect of Lialda.  For the first time in a very, very long time, my lab work came back almost completely normal, which I thought was strange since I haven’t been feeling well.  Better today than I have throughout the past week, but still not myself.

My doctor also moved up my Remicade to every 6 weeks instead of 8.  Which I am actually very happy about considering I notice a huge difference in the way I feel about 5-7 days after every Remicade infusion.  I also notice a decline about a week before each infusion, it’s almost as if my body knows its time to make the trip up to Aultman hospital for the lovely IV.  I will be receiving Remicade tomorrow morning instead of the first week in May and I am hoping to see a dramatic difference this time, especially since all my labs are normal.

I’m growing extremely tired and frustrated with all the ups and downs that UC has to offer.  Yesterday I was in bed all day and couldn’t imagine doing anything.  That certainly is no way to live, especially when I always feel like there is so much to be done.  Everything has to be a task because I’m constantly asking myself where the bathroom is or wondering when the next painful flare is going to occur.  I’m also supposed to be going back up to 40mg of prednisone a day, which is very disappointing to say the least.  Prednisone is the worst and my cheeks are so chub!  Not cute.

I was just thinking on my car ride into work today what could be causing my pain and my UC to flare so badly these past few weeks.  I’m thinking once I find the underlying emotional issue, that I will start to feel better immediately.  I think the fact that people with IBD‘s are constantly stressed out obviously does not help.  Even if a person with an IBD is saying they are a laid back, stress free person, they are lying.  How could one not be stressed about the location of a bathroom or feeling sick/embarrassed?  It’s natural for the human CRUSH-IBDmind and body to go into panic mode when you don’t feel good and that is a natural source for stress.  It’s like a never ending ping-pong tournament between your mind and your intestines.

I have been trying various breathing and meditating techniques throughout the day to try and keep myself as calm as possible.  Even repeating “stay calm” seems to help a little.  I have found the best way to cure my anxiety is taking a bath after a long day of work and dealing with UC.  You have to have some kind of escape, or else your mind will continue to wreak havoc on your body.

My advice is finding something you really enjoy or can look forward to doing.  Right now I am a reality TV junkie, its my guilty pleasure (especially Bravo, really ANYTHING on Bravo).  I know its ridiculous, but when my favorite shows are on during the week, I have something to look forward to that night that makes me happy and we all know that any positive thought helps, no matter what the source.  Even though it’s getting warmer out, I also love to crochet.  I have found that it takes my mind off of things for a while just to concentrate on the project in front of me.

I hope that everyone that has an IBD has found some joy in a small activity, tv show, movie or ritual.  Having an IBD is a job in itself and being able to have the chance to “get off work,” even for a second, is like paradise.

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