Embracing life with chronic pain and illnesses.


While waiting in the surgery preparation room, the door was ajar.  As before any surgery, it is a bit nerve wracking….sitting with your loved one….talking…answering the questions nurses and other staff must ask….reviewing the upcoming procedure….saying your name and birthdate….over and over….just to verify that you are you.  (A necessity…I know!  I would not want to mishandled!)

I hear a man’s voice as he is passing in the walkway…..”I would never want a bag!  That would be the worst thing that could ever happen!”

First off….there is obviously worse that could happen!  For me…the thought of not being here with my husband, son, family and friends would be the worst!  It is so sad that someone has such a preconceived negative notion about “living with a bag”.

If you are an ostomate, there is no doubt that there is a transition….even if it is something planned and prepared for…..as was my situation.  I was in such horrific day-to-day pain that I was looking forward to the hope that it would help!  I took time before the surgery to educate myself.  I read all I could find on-line….signed up for OstomyLand and read all the postings possible.  I visited other websites and support groups….also read postings on various medical center websites.

I knew that I was going to go through something major…..I knew that there was a chance it could have to be permanent.  No doubt, the first surgery was complex….with the repair of my rectal prolapse, removal of uterus and the colostomy.  It was strange to wake up with something different…a bit foreign.  The Wound Care Nurse was awesome!  Her support and explanation of how to handle my new stoma was fantastic.

It did take time to gain body confidence.  There were questions from loved ones, friends….and most importantly from our son.  I approached each as an opportunity to share (as appropriate)…..obviously some individuals were given some details….others just a “doing well”.  With our son, however, we chose to be totally open with.  I wanted him to understand that what the doctor had done had improved my health….that it was a positive.

Our son, too, was curious!  He wanted to see all parts and pieces….he wanted to see the barrier….the bag.  He wanted to understand how it was attached…how it worked.  He thought it was “Cool”!

I did deal with a “set back” …..a peristomal hernia.  My husband created a wonderful hernia belt that worked well with my choice of barrier/bag system.  I did go through surgery to have it repaired……

My underlying extremely rare condition to continued to rare its ugly head…..the pain back….even more intense.  I again saw my doctors scratching their heads….their eyes full of concern…..not knowing what could be done.  My constant spastic sphincter (which now was at least 5 years going strong) was unlike anything.  I asked and asked to just have it removed.  Of course, this is VERY extreme…..and would make my ostomy permanent.

I again searched and searched…..read blog after blog…..and continued to dig and interact  with other Ostomates.  My search led me to one other individual….on a different continent who had shared his story….who had had the very surgery that was asking my doctor to do.  The surgery had helped him.  Armed with this information, I again approached my doctor.  After a long discussion, the decision was made.  I had nothing to lose and everything to gain!  So we went for it!

I awoke with no “normal for me” pain!  I was thrilled!  I healed well….my body adapted.  I am even now more thankful for my stoma!

My health issues were not over….no…as anyone reading these blogs I write will know.  However, my quality of life has improved SO much from having a colostomy……at times I wish it could have be done earlier!

The ostomy has provided such opportunity and flexibility!  The products are comfortable and I am not restricted.  I am now looking forward to resuming my exercise routine…..walking and running….hiking…fishing…hunting.  I know….I have 5 more weeks before I can return to work….to start easing back into an active lifestyle.  I will pace myself for a good, solid recovery.

If you or a loved one find yourself in a situation dictating your life to change, please take the time to educate yourself.  If it is an unplanned emergency, please take time to read all you can.  Remember…life has many twists and turns…..our attitudes are SO important.  Be positive…embrace the change….and know that you are not alone!

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