Monday, May 28, 2018

Crohn's Update #1


So I thought I'd post an update to let you all know how my Crohn's journey is going. 

I saw my gastroenterologist last Tuesday. It was really just a check up. He was surprised and angry that my insurance denied Remicade. He didn't really understand their reasoning for approving Humira instead of Remicade. It's crazy how a group of insurance people who have no medical degrees and have no real knowledge of a disease can pick and choose what medicines people can be on. It's like they think they know better than the actual doctor! Anyway, I digress.

My GI basically just said to stay on the Humira and come back in three months. He wants to do another CT scan before the year is over to check if my fistula is healed, gotten worse, or if it's the same. He was also surprised I was still on Prednisone (steroids). He wants me to taper off of those as soon as I can. I have weaned myself down to 10mg. Tomorrow, I will start on 5mg. I plan on taking those for a week, and then I will be steroid free finally. Hopefully my body will be okay with no steroids. Otherwise, I will go back up to whatever dosage I was on with no trouble.


I did my Humira injection on Wednesday. I refuse to do it in my thigh because it is very, very painful. I have decided to always inject in my stomach from now on. There's a place where the nerves are dead thanks to old school gallbladder removal that I had about 14 years ago. That's where I inject. It still burns/stings when I inject, but it doesn't hurt as bad. I always get really bad anxiety right before I have to inject. I hate how much it hurts/burns. 

Humira do offer syringes instead of the pens for injecting, but I prefer the pens because I can't see the needle which makes it easier for me to inject myself.

I think the Humira has zapped my energy. I just feel tired all the time again like before all the medication. If it's not the Humira, it's because I have gone on a lower dosage of steroids. I had a lot more energy on steroids, but I wasn't able to sleep very well.

Some of my symptoms are coming back again, I think. I don't know if they are Crohn's related or a byproduct of Crohn's. When I was in my local supermarket, I had been walking around for about half an hour. I started feeling really dizzy and like I was going to throw up. I had to sit down or else I would have passed out. That was one of my symptoms before I was diagnosed and put on medicine. This could be a sign of some kind of vitamin deficiency since Crohn's makes you malnourished.

I just hate that I can't be normal and that I can't walk around like a normal person. I was okay at the grocery store last week! I know I'll probably get better in due time but still. As some of you may know, there is no cure for Crohn's Disease. Hopefully there will be a cure in my lifetime.

So today I was rocking my awesome Crohn's Awareness bracelet that I got from @CrohnsDirectory on Twitter. 


I know I've posted about the bracelets before on a previous post, but the rubber bracelets are really cool! Plus, you can now purchase them from the Crohn's Directory website by clicking here.

Anyway, I will update again once I have more of an update for you. Thanks for reading!

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