I can't make anyone feel good about having a colostomy or any type of stoma come to that, I really wish I could. All I can do is share my experience and write from the heart in the hope that it unlocks something for other people.
What I can do though is demystify having a colostomy, mainly because I feel incredibly lucky to have mine plus I find them fascinating, they are an incredible piece of engineering for one thing.
In an ideal world would I have one by choice? errrr, no thanks. But in this world, in my life am I happy with it? Hell yeah!!
In hindsight I would say I was in a very privileged position pre op, because I had cancer therefore I had no choices or options. It wasn't a case of improving my quality of life, it was simply trying to keep it. For me it was chemotherapy, radiotherapy and the colostomy or die.
When faced with the magnitude of that diagnosis your brain doesn't have a chance to worry too much about what being normal means. Suffice to say I was horrified and shocked at the diagnosis and treatment plan, but my main concern was survival.
I met a lady with an IBD in hospital the night before my operation, we chatted, she was so giving and so kind, advising me to ask for my stoma to be placed as low as possible. She explained she had just had her 3rd reversal and that she was so happy to be back to normal again (bearing in mind her 2nd stoma surgery hadn't gone too well and she had been in hospital for 12 weeks very poorly with it), the realisation that she had put herself through further surgeries even after all that just to be "normal" again made me realise how truly lucky I was to be having a permanent colostomy. I told her I felt like I was really in a very fortunate position. I explained that it must have been so difficult for her to keep going backwards and forward like she was just to feel "normal", when I wasn't going to let a little thing like a stoma make me feel in any way "un" normal, she looked at me like I was mad.
Anyway, after I came round from my operation, she came and sat with me, and this is the oddest thing, she thanked me? She said I had made her stop and think, her stoma wasn't the enemy, the disease was, and if a stoma made her life more livable and pain free it couldn't be a bad thing after all. She said after thinking about it all night she had decided that the very next time she ended up in this position with her IBD she would opt to make it a permanent ostomy.
I never saw her again after that, I really hope the situation never presented itself to her, I really hope she is very well. She helped me that day too.
I was really very fortunate that when I came round from my operation that my brain had reset and accepted and embraced my "new normal". I certainly don't consider myself anything other than normal. Do I look abnormal to you?....thinking about it, don't answer that!! :)
I'm very happy and very centered, to the point where I will tease my family for being so gross as to still use toilets to poop in, how very primitive, savages! ;)
Where there is no choice it can be very easy to adjust to the new world order, mainly because I have never stopped being so incredibly grateful that my treatment was a success, when so many of my close friends and family haven't been so lucky.
People often ask me how I stay so cheerful after everything we've been through as a family, well that's exactly the reason I imagine, because we have been through it and we've come out the other side, what could I possibly have to be unhappy about, we are the lucky ones.
I live by a few rules, I always have done, long before my son* was diagnosed with advanced stage cancer in 2009 and before I was diagnosed with a completely different, unrelated cancer 6 months later in 2010.
1, there is always some one worse off than you.
2, be grateful for all that you have
3, have more fun today than you did yesterday, keep your sense of humor at all times. Be the first to poke fun at yourself.
and 4, people can only treat you as badly as you allow them to....so don't!
My reason for being, my 3 earth angels...
*our eldest son Sam was diagnosed with advanced stage Nasopharyngeal carcinoma (NPC) in Oct 09. having gone through grueling but successful treatment he has been in remission since September 2010
suzanne@gladragsandbags.org