Dear Colon Clubbers,
After acompanying silently the frustrations and pains of many of you, who are suffering from LARS and poor quality of life - I decided to give you my input about the thing so many dread: a life with a permanent ostomy!
From the beginning I must say I had a huge advantage: beeing a nurse who feels comfortable with body fluids and every other technicality has been a good help. But even if it weren't so I thing I would get used to IT easily still the same.
And it was my call. My surgeons wanted to build me a neo rectum or do a straight anastomosis or j-pouch, depending what they would find during my surgery, but I refused and signed an informed consent stating that I wanted a perm colostomy from the get go. That helped as well, I think - and I am humoungously proud of myself for that.
My rectum was radiated and I was having a lot of pain and clustering still before the surgery. And my tumour was 4 cm from the anal verge - so after reading a couple of studies, I knew that the probability of having major LARS for God knows how long was between 60 an 90%.
So it as a no thanks for me.
That, and the fact that in the short time I worked in the OR I had seen a couple of anastomosis going wrong, fistula and abscess creeping on, stenosis building up - so hell no, no THANKS for me.
I wouldn't risk a second operation as well, knowing the risks of it and knowing that with each operation the imunnsystem takes a beating. Knowing that new adhesions can form and the risks of infection and.. and.. And... I have a small daughter to whom I own to try as hard as I can - and that means taking the less risks as possible and go as radical as it gets.
So.. as someone has said here in the forum. You have one chance to get this right - and that was my mindset.
Thanks to my decisions then went really radical in. My tumour was 4 cm but they ended up cutting 25 cm out. Every piece of bowl that was damaged from the radiation was excised and the tumour had super clean margins.
Living with a colostomy after surgery had it's ups and downs. Mainly because of chemo, my bowl function was erratic and unpredictable and made me question my decision a couple of times. But I know that that wasn't my normal and I had to be patient until I finished therapy, to understand what and how would be my life afterwards.
And cancer teaches you patience.. big time!
Since November I started irrigating and I am SO pleased. I feel so clean, so well, so regular. It has been only a month, but I don't carry supplies anywhere anymore, I dress what I want, I eat what I want, I feel normal!
I can spent my days outside without thinking about my bowls one single time. I only need 30 minutes and a pint of water and I'm good to go until the next morning.
Movies, meetings that go on for the whole day, spontaneous sexy moments with my husband... everything is as before - except I have a 8 cm patch in my belly.
So for those of you who say you want to go back to who you were....
And for those of you who hate the bag: I don't even wear one anymore free like a bird
And I still have a beatifull little belly that my husband loves - only with three little scares and a patch with a smiley to match with my good spirits for the everyday new normal so good life!
So don't dismissed something you don't know because you are afraid of it. Make the best of what you have a risk making a decision that gives you the best chances and best quality of life...
All the best on your individual paths..
Lots of love,
Ana