Anniversary Approaches

From my human, CC:

So, I have certainly been on a bit of an emotional time capsule/roller coaster since I have been coming up on a year since my hospitalization.  While, the end result of my hospitalization has been an overall improvement in my health (Yay!) it was certainly an experience I  would prefer to not repeat if at all possible.

At the end of June last year I had a colonoscopy, which basically showed that my large intestine was about to fall apart.  My regular GI doc had me make an appointment with my specialist over at the UNC Multidisciplinary IBD Center.  Due to waiting on a test result and the July 4th holiday, my appointment wasn’t until July 11.

Between that time, I decided to take a week off of work to try to rest and recoup from the colonoscopy.  My Dad came and got me and I stayed with my parents which was such a good plan since my husband was away at a week long conference.  Instead of resting and recuperating, I just continued to feel worse.  I ended up having to take a medical leave of absence from work because there was no way that I could function at work.

I could barely eat.  I had to force myself to eat anything.  Eating triggered a gag reflex apparently because my body wanted me to stop using my digestive system since it was in such bad shape.  I was horribly dehydrated from the colonoscopy and no matter how much and what I drank, I could not re-hydrate.

I was so malnourished/dehydrated at this point, I actually ended up passing out when I stood up from the sofa too quickly.  Lucky for me I had just enough time & realization to position myself to pass out ontop of the table instead of falling all the way to the floor.

I was also in horrible pain.  Not abdominal pain – because despite the fact my intestine was about to fall apart, I never actually had abdominal pain.  But, since my Crohn’s had gotten so out of control, my perianal fistulas had gone crazy.  I had fistulas on fistulas.  It didn’t matter what I took or put on it, they were just making swiss cheese out of my rear end.  And, then on top of that, I also developed large Crohn’s skin ulcers on my rear.  Along with all of these complications I had pretty much become incontinent as well.  If I was standing up, gravity had a say and I went.  It didn’t matter if I was three steps from the toilet, I was rarely making it.  I was living in adult diapers and was really, really miserable. Both from the physical pain/discomfort and the mental torment of being 33 years old and unable to control my bodily functions, having to wear adult diapers and not even having enough energy to sit and watch TV.  I was literally a lump on the bed that would shit itself.

Looking back on this, I probably should have just headed over to UNC Hospital earlier than my appointment.  But, you know what they say about hindsight.  At the time, I didn’t think I was *that* bad off.  Which if you are reading this, you are probably thinking that I am crazy for thinking this way.  However, I had gradually been getting sicker and sicker over the course of a year and you really lose touch with what “feeling good” feels like and “feeling sick” becomes your new “normal”.  

However, by the week prior to going into the hospital I had realized that it had become very bad and realized that it was extremely likely that I was going to have surgery to remove my large intestine.  

Six months earlier, the thought of this kind of surgery would have completely freaked me out.  The thought of having a stoma and dealing with an ostomy bag and living that way for the rest of my life would have stressed me out.  Thankfully, earlier in the year I had starting going to my local CCFA support group and met others with ostomies and realized that everyone is just normal.  They don’t smell bad.  They don’t have a giant sack of poo hanging off them (or at least not that you can see).  Which I realize sounds totally silly but up until that point I had barely met anyone else with Crohn’s Disease, much less an ostomy.  But, it made me feel much better and that life didn’t end with having this kind of surgery.

And by the week prior to having my surgery, I was more than ready to part ways with my large intestine.  I weakly joked with my parents that I believe I had now reached my lifetime max of going to the bathroom “normally”.  Going to the bathroom had become such a horribly painful experience that was endured 15-20+ times a day that I was more than ready to not have that anymore.

So, this is how I was leading up to my hospitalization last year.  I’ll be posting about my hospital stay over the next few weeks because I never really did write anything down (other than my few facebook posts) and trying to at the time was really overly emotional for me.  But, I think I’m at a point where I want to write down what happened both for myself and for anyone else out there who has gone through similar circumstances or who might go through it.

Life doesn’t end with the ostomy surgery.  For me, I am certainly far more healthier now than I was a year ago and I am happy to now have Mr. Stoma in my life!

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