Guest Writer Rachel - Part 1

Rachel, aka "The Stoma Bag Lady" is a journalist, writer and blogger who has Crohn's: 

After more than a decade of living in constant pain and racing from toilet to toilet faster than Clark Kent transforms into Superman, I have finally been pinned down by those scary men in overalls and forced to have my battle-scared and withered large bowel removed.

The result is that I now have a constant companion who travels with me literally everywhere. Her name is Winnie (the Poo Bag) and there is seriously no getting away from her. We are in every sense of the word attached at the hip – well at the stomach – but you get what I mean. I cannot live without her, and she, (well I suppose she could) couldn’t survive without me.

For years I dreaded the arrival of Winnie. I lived in constant fear of being admitted to hospital, knowing that each time there was a really strong chance that, although I would eventually escape, it might not be in one piece. I was terrified, and I have to admit totally revolted, by the prospect of having to live with a stoma and ostomy bag.

In my mind surgery meant the end of my youth, my freedom and my looks. I had nightmares about myself hobbling around bars and nightclubs with a big bag of poo attached to my stomach, with no one wanting to dance near me and fake tan slathered girls tottering in the sky high heels smirking, laughing and pointing at me as they watched the bag swing backwards and forwards on the dance floor. Ridiculous, I know, but for years (and it didn’t matter what anyone told me about how no one would be able to see it) I couldn’t shake the idea that I would be carrying around a big bag of poo visible to the whole world. In my mind once I had the operation my life would be over, there would be no more parties, relationships, sex and my dreams of a high-powered media job would be destroyed – no one would want to employ someone who may as well as had a neon sign over their head saying “I’m pooing while you are talking to me”. 

All this may seem very neurotic to you and, well, down right ridiculous, (which I now know it was) but I was 100% sure that people would be able to see what was going on, I would smell of poo all the time, and everyone I met would be too revolted to even stand at the same bus stop as me let alone be in a relationship or be friends with me after my operation.

The first time I was visited by the surgeons was when I was 19-years-old. I will never forget it for the rest of my life, it is one of those moments that will always haunt me – I wouldn’t describe it as the worst moment of my life (I hate it when people say that – as there is still so much of your life year) but it was the most terrifying. Writing about this still brings tears to my eyes, and I am starting to feel them welling-up as I think about that awful afternoon alone on the hospital ward.

If you have never been visited by a surgeon here’s a small warning for you. Surgeons never arrive in ones or twos to reassuringly have a nice chat like perhaps your specialist or dietician does during ward rounds and visits. No, surgeons are like wolves – they move in packs. So on the day in question I was huddled in my tiny NHS bed with my teddy staring into space, wondering what fun I was missing out on at University (I was in my second year) and waiting for the next explosion of pain that would force me to jump from the bed and heave my tired body across the room to the nearest toilet (if you have IBD you will understand the living constantly on edge waiting for the next episode or bout of pain), when they all arrived. 

All in all 12 of them must have approached my bed, surrounding me and pulling the curtains around me to have a ‘private’.  Although the chief bigwig surgeon was a lovely man and tried to explain to me what I might have to have done if my Crohn's didn’t start to behave itself and respond to the treatment at all, the whole situation was just overwhelming. I think the moment he mentioned the word stoma I just stopped listening. My mind became filled with those ugly images, flashes of myself alone with no one who loved me kept appearing before my mind, and I just couldn’t shake them long enough to ask any questions or gain any reassurance. I became smaller and smaller sinking into my own little world until they left me alone in the bed and the tears came, and I cried until there were just no more tears left to cry in the world.

I obviously didn’t have the operation and it would be six-years-later and millions of pills, drips, infusions and tubes stuck where the sun doesn’t shine, before a different team of surgeons would finally get their hands on me. But at the time this was very much a reality, you see the hospital was struggling to fight for me to have the right to try Infliximab infusions, and without the funding I would be left with the only other option at the time the surgeon’s table...

Find out what happened next on Thursday in Part 2

You can follow Rachel on Twitter @thestomabaglady and at her blog http://adventuresofthebaglady.wordpress.com