Sunday, 5 January 2014

Everything I Crohn

Hello again. It’s almost 3years since I had life-changing surgery for Crohn’s Disease. Around the start of 2011 as a new year had begun, for me it seemed like the end rather than a new beginning. I was utterly hopeless and the idea that I would have to go through horrific surgery with the possibility of months of recovery, a colostomy bag and a life-long scar was almost too much to bear.
By the arrival of my operation I was seriously ill. I had, within the last 6months prior rapidly gone downhill. I was not eating (it wasn’t physically possible) I was in gut-wrenching agony every day (no form of pain relief could touch it), I couldn’t sleep, or walk further than a few steps without almost passing out, and most vitally; id mentally given up.  Now don’t get me wrong here, I was depressed yes; but I hadn’t given up on life. At least not on the lives of others anyway.  I was completely in love with my partner and adored those around me to the point of stalker-ism, there was absolutely no way on Earth I would have considered doing anything to cause them heartbreak or upset.  What I mean is that I had reached a devastating point of acceptance. I had come to see that nothing would change for me – no medication or treatment had worked, in fact things had escalated to the point I couldn’t bear getting out of bed in the morning, so I couldn’t see what the point in moaning about it was.  This in my mind, was my unfortunate life now and I simply had to get used to it.
The pain was unbearable and frequently reduced me to tears, I felt I had to try and find a way to fit my life around my illness – get to and from work, hold down my job and maintain some semblance of a social life, all the while trying to hide the fact that I felt that something was slowly but determinedly ripping my insides out from the inside.

Everyone knew. I was and always will be; a hopeless liar.

I gradually came round to the idea that not only was this operation essential; it may actually serve to make me feel better. This seemed such an unlikely resolution that I chose not to focus on it and instead worried intensely how I would cope with a potential colostomy bag and how brutally unattractive I’d be with a massive scar down my front. I really needn’t have worried; on either front. I didn’t end up with a colostomy and my scar hasn’t put my partner off the idea of jumping my bones on a regular basis no more than perhaps having my head and limbs removed might. (That wouldn’t either).  I’ve come to accept my scarring as a part of my body now, much like my long and decidedly repulsive E.T style toe. (Although that particular toe-acceptance took more than 3years).
I relay this story to mainly remind myself that giving up never solved anything. I have felt low since, and I’m sure I will again, but accepting those feelings is where I will always fall down. And stay down. Myself, and anyone else in my similarly diseased boat must remember never to give up hope. It may feel that you are fighting a losing battle with your body but try not to think of it as a fight – that way you are constantly setting yourself up for a fall. Crohn’s is an incurable disease – it will always have the upper hand, but YOU have a functioning mind and, (depending on your religious persuasion), soul; if you choose to use them positively they will always win out.

1 comment:

  1. Hi Kathleen, I suppose that the only thing that you should be thinking about is your #pain! and your #qualityoflife. Colostomies/ileostomies are for indivivuals who have had enough with dealing with the pain and living within a fraction of how your life could be. And, the operation is tough and difficult and in my own case, where I woke up during the proceedure, I still new that it is and was the only solutuon open to me. I was diagnosed in October 1994 and by July 1995, I was to have a panprocotolectomy and +/- an ileostomy the day after my 23rd birthday. And the scar you were worried about, and yes you should be worried about as mine got infected with MRSA 7 weeks post op, where I nearly died a couple of times from September 1995 until February 1996 where I was released, scars healed, but 4 times the size of what they should have been, I still required weekly visits to the hospital as one of my wounds, the wound where one would find an anus, was weaping and would not close until some time in the NewYear of 2000. After all that, would I #advice anyone what he or she should decide, I would say that they should answer the questions I first put out, if you your #pain increases and your #qualityoflife decreases then make the decision. As for me, if I were asked back before #myowndecision, would I go through it all again?? I would reply, Yes, because it #savedmylife. Paul B aka cursed1972 on Twitter.