Thursday, October 6, 2016

Crohn's and the Changing Seasons

Ahhhhh, Fall.  The change in the air, change in the leaves, change in the weather and a change in the Crohn's !!
It is this time of year I both love AND hate.  For everything I mentioned above, yes, but I hate what it does to my Crohn's symptoms.  It's like there's a switch and once it was flipped to Fall, so was my Crohn's switch flipped.
I get more symptoms and problems this time of year than any other, except maybe winter, even though generally, I'm doing well.  I'll give you an example...
This past Monday was like any other Monday, get up, go to work, come home and have a quick dinner so I can take my son to soccer practice.  That was until I ate dinner.  Nothing out of the ordinary, generally because I'm going to be out and don't want to have to go to the bathroom, but after I ate, I laid on the couch and had a quick "shiver".  Again, nothing out of the ordinary.  BUT, that one shiver led to two, then more, then I couldn't stop.  I call them "the shakes" and I get them once in awhile, but have no idea why (and neither do my doctors).  I covered my self in a blanket, then two, then my son piled the freshly dried towels from the dryer on top of me to keep me warm.  Funny thing was, I didn't feel cold.  It got progressively worse...ever try texting while shaking...don't recommend it.  I was trying to text my sons coach that he wouldn't make it to practice and possible team photo's later that night.  I put myself to bed bringing all the blankets with me and added them to the comforter and blanket already on the bed.  The shaking got (and gets) so bad, my muscles and joints starts to ache and fever and headaches kick in.  I try to keep hydrated, but that's fun to watch.  What's worse is trying to urinate while you're "convulsing"...in hindsight, I probably should have sat down LOL, but what's done is done. 
Fast forward 4 hours later, yes, 4 hours, when I vomited and almost immediately the shaking stops.  I still shook a little, but 90% better than what I was.  Now I get to deal with joint pains in my knees, hips and jaw, muscle ache in my legs and arms and THE most painful headache.
I have been through this several times over the years and have learned that once I vomit, the symptoms seem to go away.  The closest my doctors have come to figuring it out is something call "rigors" which essentially a sudden attack of severe shaking, but have no idea why.
I've even gone to hospital once when it first happened years ago and even they couldn't figure out why.
So....do I like Fall??  My senses say YES! My body says, uhhhh...NOPE!

4 comments:

Rob Chesbro said...

I just started having those shakes myself. 2 times within 6 weeks, out of the blue, no reason. Violent shakes that lasted for 20 mins and then about 45 mins. Just like you, I also wasn't cold. It was 70 degrees out both days. It scared the hell out of me, since something like rigors can be caused by a serious infection. Since I am on Humira 1x/week, my compromised immune system makes me worry for things like that.

I'm not rooting for you to get shakes, but it is comforting to read that I wasn't the only Crohns patient who experienced this sort of thing.

Vern Laine said...

WOW, you're the first that's told me that they get the same thing. I thought I was a weirdo or something! LOL. I'm on Remicade and checked if that was it but the doctors all say no, not sure about Humira though, have you checked? I'm waiting for my next episode so I can take Ativan, it's suppose to help, but won't know until it happens.

Rob Chesbro said...

I've been on Humira for over 3 years and this is something that just happened twice out of the blue. Hasn't happened like that before unless I was just ridiculously cold. Just saw my GI and he said it's a possible side effect, but just be conscious of it and head to the ER if it continues.

My concern with it was that rigors is a symptom of having a bacteria infection or possibly sepsis (not to get you all worried about it.) So that's why I was so alarmed the first time. Obviously both are concerns with a weakened immune system, but both episodes were random in nature and subsided eventually. Didn't stop it from scaring the shit out of me though.

Thoughts on Remicade? I'm at a point where the Humira either isn't working that well or my body just isnt responding to it much anymore and we are about to switch to either Remicade or Stelara. I've just read so much awful about Remicade that it seems like a really terrible drug to be putting in your body. Worried about the nasty side effects because I havent had any with Humira at all.

Vern Laine said...

I can tell you from MY experience (and I've been writing about it since day 1) I have had zero side effects. I too read about Remicade and because of what I read, I delayed it for years but I wish I had gone on it sooner. It's been a "god send" for me. The two biggest changes in the 4 years I've been on it is pain is virtually gone and I've gained over 20 pounds.
As you know with Crohn's, everyone's experiences are different, but I would highly recommend it if you have the chance. It doesn't mean the YOU might not have a good experience with it, but if you're asking me my opinion, then I say go for it!!