Tuesday, January 20, 2015

Welcoming a New Year with the same old problems

With this new year starting I am feeling like I always feel every year, hopeful.  Every year that hope slowly fades though, as most things never change when it comes to my illnesses.  This year it has happened so quickly though.  I'm feeling no hope already.

To recap what I am struggling with :  I have a history of Crohn's disease, however it has decided to not show itself on any of the tests I have. No raised inflammation levels, no thickening or blockages in the intestines.  Nothing.  Which technically is good, however I still have all the symptoms.  Pain, nausea, mass quantities of diarrhea.  Problems with no cause, no cure, not relief.  I also have Fibromyalgia which completely overruns my life.  I'm sore all over, totally exhausted and I get winded just walking to the bathroom sometimes.  Unfortunately there isn't much they can do about the Fibro.  Just live with it.  Cue the depression.  I am still very, severely depressed.  I have panic attacks walking to the mailbox and I rarely want to get out of bed.  That's the basics of what is happening to me.

I went to hospital last Thursday because of the stomach pain, nausea and diarrhea.  They did a CT scan which showed nothing.  They sent me home with the diagnosis of chronic gastritis.  This seems to be all that they can come up with that is wrong with me.  It's not my first diagnosis of gastritis but it is the latest one and that got me thinking. I need help but the doctors don't see it that way.

Here's the thing.

I got home from hospital and called my GI office and let them know what happened.  They called me back several days later and told me that Dr. GI wants to schedule me for a colonoscopy and an EGD. Why?  The CT scan showed nothing.  They want me to endure these two tests every six months and they NEVER, EVER show anything but an inflamed stomach lining.  That's it.  Even when I had three feet of massively inflamed and infected active Crohn's disease in my guts these two tests showed nothing.  Why do I need to do this?

Here's my idea - put me in the hospital for three to five days.  Keep me on clear liquids and IV fluids, pain and nausea meds and let my intestines rest.  Don't aggravate the situation by putting me through a colonoscopy prep and shoving tubes and cameras in places that already hurt.  Help me out and let my insides rest.  Well, my idea was shot to hell because apparently my doctor cannot do that.  I have to go see him in the office tomorrow and defend the reasons I am "refusing treatment" or so they called it.  Excuse me, but a colonoscopy and EGD are not treatment.  They are torture!  Being in the hospital on fluids and pain/nausea meds is treatment.  Why won't they listen??

This, in turn, causes the depression to seep deep into my bones.  I lay awake at night listening to the cars driving on the highway, deep in the distance, trying to lull me to sleep.  I cannot get comfortable but I am too exhausted to re-position myself.   My body aches.  There isn't a place inside that doesn't feel pain.  Even the places that shouldn't hurt do hurt.  My heart aches for any kind of relief.  One questions rolls around my mind over and over, "is it going to be like this forever?"  From what the doctors say - or don't say - the answer is yes.  How do you have hope when the answer is yes?


Anonymous said...

I so feel your pain. My name is Jen (I used to go by Jenni too btw...never one for the "y" or "ie") and I too have Crohn's and Fibro, along with depression and anxiety. It seems I've found my twin! I'm Jennifer Lopatin Johnson on Facebook. We need to talk sister!

Suzanne said...

You hope because humans are fallible and that means no one can tell you it's forever just like no one can tell you it will get better.

Sounds like the actual appointment went much better than expected?

Liz Torres said...

Hi. It is definitely a painful road. Don't quit. if you can, go to an allergist. Find out what you are allergic to. My son has crohns but he has constipation instead. He is allergic to so many things and when he has those things he gets a flare. Also, many of the medication doesn't help cure it just help for a little bit but will cause other damage to the body. Have you tried any of the diets like Paleo or SCD. We are following our own diet because we he is allergic to healthy options. He only consumes coconut milk.