Thursday 17 May 2012

Crohns: Stoma

I just want to add that as with every blog up to now it is totally from my own experience, outlook, fear and life. I wouldn't want anyone to feel that their lives will be anything like mine, either in relation to the crohns or anything else. So, if they don't agree with anything I say, its just my view and experience.
I mentioned in the last blog 2 days ago of life and experiencing it to the full with medical assistance, through the period when all of us are young, positive, fearless and carefree. i never blogged yesterday, you can get too much of a good thing!!
So, as i stated in that blog, life was sweet until, it went sour again. It went sour in the sense that the 'drugs didn't work', severe symptoms and pain returned and investigations led to the surgeon walking up to me in my hospital bed with another consent form.
I looked at the consent form which as usual gave the surgeon the capacity to determine on how to proceed immediately he saw the damage of the gut. I signed, the nursing staff then got me prepared for surgery.
Surgery occurred, i recall waking up in the haze of recovery, back to the ward and then pain control administered. Recovering from surgery and the medication is again a personal thing. Many have problems with pain relief, some will arrive at a stage of reasonable alertness more rapidly.
All i can recall is that in what seemed a hazy drug assisted alertness I was told the surgeon had done his work. The surgeon's work was seeing my bowel was like tissue paper, diseased and in a very poor state. As a result I had a little friend stitched to my abdomen with a bag attached to it. This little friend was the outcome i had been concerned about, and here it was. I had a stoma, which is basically intestine which allows the gut to detour, take a short cut and deposit products into the bag.
So, after the initial aftermath, stoma nurse, booklets and a 'chat' with someone else with a stoma, recovery begin, a process of recuperation meant i also had to deal with the stoma.
I think i coped  and cope well with the day to day requirements having a stoma requires. i had problems, leaks, mishaps and all the other things that come from the existence of a stoma and bag.
It was hard for me to get used to having a receptacle for body waste attached to me. Its odd when you have little or no control of its activities.
So, having dealt with the problems of practicalities and problems of them, the next thing is how are you seen in respect of relationships and generally by other people.
There's no rule to these things, no stock line about 'this is what you do to help, adapt and involve people in your relationships'.Well, there wasn't at the time anyway!
I can't really express the difficulties and mental somersaults i had with the stoma and relationships. I stressed about how i felt unfit, no pun intended, to be part of one, because mentally it felt  hard to deal with who i was then. I was 25, but my attitude to myself had changed. It shouldn't have changed, but i am a flawed human with a flawed human brain. I stressed about everything to do with a relationship, the physical and practical problem of having a bag of stuff that shouldn't be there, and being intimate and close with someone. How they reacted, if they said the 'right things' to make me feel better, more 'alone' with myself. Whether I was good enough, in all definitions of that phrase.
Having the stoma then, at that time of my life, created mental and physical problems with relationships, that, in all honesty, to this day remain to some extent.
I have 'allowed' myself to reveal my physical disadvantage, in my mind or in reality, from the stoma. i don't really need to go into the raw details of life, and many other people have successfully lived life to the full, but for one reason or another it got in the way. It got in the way in respect of actual physical closeness, but importantly in my head.
Esteem is a shifting thing. we can present as in total control, full of life, ready to tackle everything. In reality, we could be on the edge, struggling, self doubt and despair a constant companion. I could be laughing on the outside and cracking up internally. The shield i have referred to would be used to present a content, happy demeanour while protecting me from the reality of how i was feeling.
Over time i suppose with experiences ensuring little change, for one reason or another, outwardly I portrayed a sense of acceptance and contentment.
I know that there are no physical obstacles to living a happy loving life with an understanding and sharing partner. I know this, so i don't need to have advice or suggestions of a course of living.
I also realise that the reason i have reached this point in my life on my own might not only be as a result of the stoma or indeed the Crohns, it could simply be me. I think my experiences tell me otherwise, because i was there though.
So, having Crohns at 24 led to me to having Crohns at 25 with a stoma. As i have explained, its my experience, and from my experience, this event made my position different and difficult. I know the stoma the bag and its 'contents' have been factors, because I was there.
Yet, as i have said many times, this is my experience, my life. Its how things have panned out for me, with so many variables, me , partners, events etc. I don't want anyone with a stoma to read this negatively as if this is a template for their future. Far from it, it is merely me trying to be as honest and open about how having a stoma affected me, it might even provide advice and comfort.
The comfort and advice being that i think as much goes on in the head trying to deal with new relationships or old ones for that matter, as the physicalities. It did for me, and as I say my life is the only one i can base my blog on.
As always, thankyou for taking the time to read this. It is a window of sorts, into my body and mind 

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