Wednesday, September 4, 2013

My Rant for the Month....

I've been working 12 hour days on Mondays, Wednesdays, and Fridays.  I'm good with that.  I have a great new job that allows more one on one patient care.  I love taking care of people.  But I'm just so tired. 

I'm going to the bathroom more and more despite what I eat or if I even eat at all.  The Lomotil isn't really helping much and I just feel tired.  I've had a few people tell me they were surprised I could work as much as I do or even work at all with my Crohn's.  I can do lots of things.  I can poop 400 times in 9 hours.  (Okay I might be stretching the truth on that but not by much!) I just can't shake this fatigue.  I want to sleep all the time. 

But the other half is I'm barely eating because I don't want to go to the bathroom so much and I'm losing about a half of a pound to a pound and a half a day.  I'm not a skinny Crohnie mind you so it isn't like I look like one of the Olson Twins.  But all those steroids, hormone treatments I went through trying to get pregnant, and all those surgeries and the swelling that everyone said would go away never did on me.  I'm carrying around steroid weight from the '90s.  I'm so unfashionable - Gaaahhh!
I really don't mind the weight loss, it's just I'm afraid about how it's happening.  I was just in the hospital a few weeks ago for massive pain in my rectum - hemorrhoids, but they said I was fine.  How do all my labs always come back normal?  How am I physically fine when I physically feel like crap all the time?? 

People look at me and say "There is no way you have Crohn's!"  Well, yes, yes I do.  And though it isn't flaring up right now, every day I feel complications from it.  Like short gut syndrome, stomach pain, arthritis, the handfuls of medicine I have to take just to function, all the pooping and rectal pain.  I'm sorry I'm not 114 lbs like I was when I was diagnosed but trust me, I have Crohn's.  I also have Fibromyalgia and Irritable Bowel Syndrome and major depression.  But you can't see that from just looking at me.  And you'd never know unless I shared it with you.  So please don't remark that "There's no way you have Crohn's!" or look at me and say "Really?  Look at you."  It's rude behavior on your part.  I would never lie about something like this.  Maybe I'll just keep my mouth shut from now on.  Nah, probably not!


Amber S Schlaht said...

I have come to realize that there are a ton of rude people in this world.
Don't let them get you down!

Jenn Dilldine said...

You forgot "you don't look sick" or your favorite "eat more fiber" Love you!

Tom Everette said...

Good for your blog Jenni. I was diagnosed in 1980 with crohn's. Back then of course they really didn't know much about it and I almost died. Later in my career I became a mental health caseworker. I learned how to live with the pain, but the depression was still affecting me. So, I learned as much as I could about that issue. My life is better, not because anything has been cured, but because I understand completely what is happening and what I can do to help. Proud of you for doing this blog.

Gina said...

I know just what you mean...nothing has ever shown in my bloods or in my brothers or in my dauthers now. Have you tried INFIXIMAB INFUSION? I have just started on this. Feeling a little better. I as just like you. We call the loo 'my office'... well its better than shouting 'mums on the loo!'.

Miles said...

Hi Jenni. Another Crohn's victim here. Thought you might find it interesting that to me and I'm sure only to me. Your blog read like a newspaper article of my life in my mind. Every word you write I think to myself "Oh yeah..done that. Oh yeah I've been told that." Etc. Anyhow loved the blog. Just another Crohn's statistic to another. I definitely 'feel' you on every word you write.

cheryl said...

My pet peeve that turns me into "she-wolf" is God doesn't give you more than you can handle". Bull****
Even doctors look at me and tell me there are patients who are much sicker than you. Excuse me for not looking like a concentration camp refugee. ( been there, done that!)
Since I had my osotomy, I have gained a lot of weight. I am afraid to lose weight (a sign that the disease is winning). I think I can gain now because I don't have the horrible rectal pain and thus food avoidance. For some reason I seem to be able to live with the bowel cramps.
The doctors knack of understanding and compassion adds such "insult to injury"
Bless you for sharing your journey and giving us an understanding forum