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‘Relationships and Breaking the taboo on poo’ by Charlotte Guinea

After initially having an emergency full colectomy at 21 years old in March 2013 for Ulcerative Colitis and having just come out of a two year relationship I have to say that I was terrified that I wouldn’t ever meet someone who would accept me for me with an ileostomy.

For the first few weeks post op I suffered heavily with extreme emotions one moment I was overjoyed that I was free from ‘inflammatory bowel disease’ and that I could now go out with friends, drink, socialise and have fun like a normal 21 year old should be able to do but at the same time I suffered heavily with low days this was when the thought of my appearance began to worry me.

My thoughts initially were; will anyone ever love me again? Will a guy find me attractive with an ostomy bag? What if I sleep in the same bed with someone and my bag explodes everywhere? All these thoughts began to enter my mind until I had a few words with myself and thought actually why should I panic? If someone meets me, dates me, gets into a relationship with me then obviously they are going to love me for me and not what I look like or my disability.

Over the first six months after my initial surgery my confidence had begun to grow, I had lost a lot of weight from my operation but to the point where I wasn’t too slim or too large I felt comfortable with my figure and the way I looked and was starting to accept what had happened to me. I began going out again like your typical 21 year old, I could drink and join in with the rest of my friends on a night out and I gradually began to speak with guys and also get attention from them which made my confidence grow and realising that only I knew that I had an ostomy bag so I shouldn’t be afraid to be myself around new people.

In July 2013 I started to date again, luckily for me I met a guy through mutual friends so he was given the heads up that I was living with a difficult condition. This made things a little easier for me as I didn’t need to go into the details unless he was genuinely interested.

Around one month later things began to phase out and he ended things with me via text which at the time completely knocked my confidence and I felt like I was back at stage one with those ongoing thoughts of being unattractive. Who would want to be with someone with an ostomy bag etc? However, I began to realise that we were not meant to be after all. He couldn’t stand hospitals and had said he wouldn’t be able to visit me so I began to realise I was much better without him!

Over the following month during September 2013 I suffered heavily with a bout of depression, life had been so great, busy and wonderful from March that year and suddenly it had now all come to an abrupt halt. I couldn’t understand why I was feeling so low, when I spoke with my stoma nurse she was the first person to remind me that I had gone through a lot for a 22 year old girl and that I should be proud of how far I had come.

She also reminded me that I had just had MAJOR surgery within the last six months and was still getting over the general anaesthetic. I soon found out that common side effects from General Anaesthetics are mood swings, weight loss, weight gain and hair loss so now some of those symptoms were beginning to make sense.

My nurse had told me to not be so hard on myself after all I’d had masses of morphine and other drugs to numb the pain post operation so I was bound to get to a point of feeling low. After all they do say it can take up to one year for a general anaesthetic to exit the body and rid it of all the drugs.

Karen, my stoma nurse, asked me whether speaking with other patients who were awaiting surgery for a stoma would help with my wellbeing as well as theirs, at first I thought why would they want to be faced with negative old me but then I realised that helping others come to terms with what they had gone through or were about to go through also helped me. In a funny sort of way, helping others with their thoughts and worries began to help me with my own fears. I soon began to realise that there were people in far worse situations than myself which made me even more willing to help out.

Over the following 6 months I continued to volunteer at my local hospital where I was still undergoing surgeries and treatment as the Ulcerative Colitis symptoms began to come back and I was then diagnosed with pouchitis which is inflammation of the J-Pouch.

I had, had my jpouch formed in November 2013 but I had to wait another year for my final surgery which would result in removal of my ileostomy, meaning my bowels would function by me going to the bathroom from the back end again however the following months resulted in various tests, surgeries and treatments. I would not let my condition beat me and I continued to fight and in doing so I started to raise awareness on ‘inflammatory bowel disease’ which is where I came up with the tagline of ‘breaking the taboo on poo’.

I got myself involved with Crohns & Colitis UK, the national charity who had supported me from diagnosis back in 2007 to present so I started to blog, participate in media interviews for national newspapers and magazines and in July 2014 I even took part in a live debate on ostomy bags on Sky news. I was now in a place where I felt confident in myself, my body and with talking openly about my condition.

In April 2014 I started speaking with a guy who I met on an online dating website at first I just went online to see what it was all about and I guess in some ways to continue building my confidence. We spoke nearly every day for the following two months and within that time we discussed my condition of which didn’t seem to faze him at all.

We immediately seemed to click and even though we hadn’t even met up at this point I already felt like I knew him and he knew me and more importantly he knew about my condition and didn’t run for the hills which made me respect him so much more.

In June 2014 I finally plucked up the courage to meet up for our first date, I was nervous however I still felt like part of me knew him through speaking on text and so when we met we had plenty to talk about without it really feeling like it was a first date. I feel that because I was so open and honest about my illness and my ostomy bag it made him want to know more and he also respected me for my honesty and bravery for what I had been through at such a young age.

Over the following month we began to date which was great as I wasn’t limited to going to certain restaurants or worried about where the nearest bathroom was, as I had my bag for peace of mind. Within a month we began to officially become a couple which is when I knew that he had totally accepted me for who I was and not just because I had an ostomy bag and he was feeling sorry for me. Our relationship grew from strength to strength as we continue to do so.

My partner Calvin and myself will often have open conversations regarding ‘poo’. It now seems to be the most common topic spoken within our household and among family and friends I guess that is now because we are so comfortable and so open with one another.

Calvin did admit to me at one point that when he googled the word stoma on google images that he did nearly faint to see what one actually looked like and this did make me laugh as I know he is the squeamish type.

The great thing about our relationship has been the openness, the honesty and the ability to be ourselves. Just like any other couple we have our good and bad days with one another I have at times felt like a total burden, however I can’t thank him enough for standing by me as he has totally been my rock over the last year.

Since Calvin and I started dating I have had at least 6 more surgeries and he and my Mum have been at my bedside in recovery every time I have woken up even though I have been miserable, high from morphine and very sleepy they have both stood by me and humoured me even in my darkest days.

I wouldn’t have got through the last few years without the great support network of my family, friends and my partner and I will continue to raise awareness on inflammatory bowel disease and ‘break the taboo on poo’.

Date: 24th November 2015  
Author: Charlotte Guinea
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