I am a wife to a great man, mother of 2 teen boys, God fearing, ileostomy wearing, gun toting, PTA card carrying, book reading maniac, animal loving, wannabe runner, writer & shoe diva… This is who I am.
Where do I start in telling you about my journey with UC?
I guess the beginning would be ideal but, to do that we must go back 8 years to 2004. This is the year of my diagnosis into the UC fraternity. I was 31 years old.
My symptoms started quietly at first and coincided with the dying of a close friend to breast cancer. The stress of her battle brought the UC front and center in my body. As she lay dying in her bed, I was running back and forth to the bathroom in tears with excruciating pain and bloody diarrhea. I was diagnosed in July and 2 weeks later, on a warm sunny August day, my friend passed away.
I spent many, many hours in doctor’s offices seeing various specialist, visited the lab for countless blood tests and frequented the pharmacy almost on a weekly basis. The hospital became my 2nd home including one miserable stay located 9 hours away from my husband and kids for a flare that nearly did me in. I tried numerous medications in order to keep the UC controlled but rarely having success lasting longer than a year at a time. The last treatment-Remicade-was the best, giving me 3 years of relatively symptom-free life.
But I guess all good things must come to an end and so this was true of Remicade. In August of 2011, I flared for the last time. My doctor said I was at the end of the line with conventional medicine, time for surgery. Surgery would mean a permanent ileostomy.
In all my years of UC, I’d hoped it would never come to this. A permanent bag attached to my abdomen collecting poo seemed like the worst thing next to death. I was out of choices though, so we (hubby, doc and I) began the process of surgeon hunting.
Surgeon was selected, insurance approval was in the works and now it was time to set a date. I felt like we should send “Save The Date” cards out, it was such an ordeal. Insurance came through with flying colors as I’m sure they were sick of forking out money for on going treatments and regular hospital visits. It was decided after many tears and prayers, September would be the BIG month of my transformation.
On September 12 I underwent surgery for removal of the colon and large intestine leaving me with a stoma and an ostomy bag. The surgery was a success and I went home with my new accessory.
I felt amazing, aside from the surgical site, I was pain and UC symptom free for the first time in many years! However, it was short-lived. I began to experience UC symptoms again and even though I no longer used my rectum to poo, I was having weird drainage and the urge to go constantly. So back to the surgeon I went.
It was determined that the inch or so left of my rectum had developed UC again and was in a big flare. The rectum must be removed and out it came on December 13, 2011. This surgery almost killed me, I was over medicated which stopped my breathing and resulted in a stay in ICU. I had a few other complications, one of which was an infection that developed in the surgery wound where my rectum was removed. I was allowed to go home a couple of days before Christmas with strict orders of doing nothing. Home health care was provided to continue care of the infection since I would be wearing a wound vacuum pump machine around the clock.
Fast forward to March of 2012. I am finally released to begin living life again. At 39, I am being offered a do-over: a life with out the hold of UC. I decided right then and there I would live it to it’s fullest potential. My 40’s are going to be my best years yet.
Where I’d like to be in 1 year:
I just ran my 1st ever 5K on September 29th, 2012. I have been training hard for this little 3 mile trek for the last three months. To say that I am over the moon with this goal completion is an understatement. I thought it would take me much longer than 12 weeks to check this goal off my list, but here I am–checked with permanent marker, no less!
So where would I like to be one year from now? I would like to be exactly where I am today: happy and healthy. I would love to have a few more goals checked off the list like, a half marathon, see my oldest son start college and watch my 2nd son play varsity football for his high school. Traveling with my hubby is also on the agenda. More than anything though, I just want to be happy, healthy and surrounded by the people I cherish most. I want to always be thankful for my 2nd chance and I want to continue living life abundantly. I want to share my experience so that others who find themselves in the long dark tunnel of disease can see the light at the the end. My ostomy was not the end of the world like I once feared, but the beginning of the voyage of a lifetime.
written by Monnie
submitted in the colitis venting area