Going home and how I am today

It was Friday the 31^st January when I got the news I had been waiting for, I was allowed to go home for a weekend visit with the possibility of full discharge if I managed with the feeding system. I couldn't have been happier when my mum came to take me away, she bundled me into a wheelchair and whisked me away to the car. It felt so strange being outside again, it had been almost a whole month since I was admitted and apart from rare and brief trips to the courtyard, I had been completely isolated from the outside. Everything looked so colourful and crisp, like everything had the contrast turned up. It was a big change from the bleak cream walls of the ward! Of course I managed perfectly and the hospital discharged me from their care on the Monday and I was finally able to start putting my life back together.

It was difficult getting used to being out of the hospital environment. Sleeping in a real bed, one that's comfortable and squishy as opposed to one that's firm and rubbery was a big change and I no longer had the possibility of using the tilting back to help me up. My parents looked after me for a full month after discharge, something I will be forever grateful for. They wanted me to always have someone with me, whereas if I went home my husband would be at work all day and I would be alone. My mum was my nurse, my hair-washer, my cushion plumper, my chauffeur to my daily dressing appointments. I could not have coped with the recovery without her help. By March the open stomach wound had healed completely although I was absolutely shocked by the sheer amount of hair that had been hidden beneath the dressings. Obviously they had shaved my stomach of any tiny hairs before surgery and I now had a patch of coarse black hairs sprouting from either side of the scar. I was so relieved to be able to wave goodbye to the daily dressing and a bit of body hair was worth the end result, a perfectly healed wound.

I still had difficulty eating food, the night feeds would leave me feeling sicker than ever and so I never felt like I could eat anything. I had a constant divide in my mind, the part that was hungry and the part that couldn't cope with the sight of food, even going grocery shopping would set me retching. It was decided at an outpatient appointment with Mr Miller in March that we would trial taking me off night feeds and see if it improved my appetite at all. The jejunostomy tube was left in place just in case I my weight started coming off too quickly and they would need to restart the night feeds. Slowly but surely I was able to keep more and more food down, initially just dry crackers and plain things but then things with flavour, meat and dairy. On April 17^th, my 24^th birthday, Mr Miller gave me the best present I could have asked for. The jejunostomy tube was removed and I was finally Alex. Just plain old Alex. No tubes, no wires, just me again. And the other good news? I was finally well enough to start trying for a baby again.

My recovery has been long. Two emergency surgeries, three days in ICU, two of which I was on life support, a month in hospital and then further months recovering at home. What happened to me was one of the worst things that has ever happened to me but strangely it was also one of the best. After being through such an ordeal and coming out of the other end more or less whole, I have a completely different outlook on life. I was once a complete pessimist, couldn't see the point in a lot of things and wasted a whole lot of my life moaning about little things. Now I take each day as it comes and I am thankful for whatever it throws at me. I look at my family and I treasure them, I constantly tell them how much I love them, I make the most of every moment I spend with them because I know first hand that life if fragile and precious and can be snatched away at a second's notice. I feel like I am a much better person from the experience. I'm certainly damaged from the experience emotionally and have struggled to come to terms with what happened for this whole year. I still wish there was someone to blame, even if it was just myself, because then I would have some sort of closure for the whole thing. It would be black and white, it was my fault and that's that. But it wasn't my fault, it was a freak occurrence where no one was at fault.

As for my bowel and general digestive health, everything is as good as we could have hoped for. I still have days where food will not agree with me and I will be sick. Sometimes it's a food I've had a million times before and one day it will refuse to go down. I struggle with vegetables if they aren't cooked in a stew or soup, cereal agreed with me fine after my initial surgery but I can no longer tolerate it and pretty much anything that is fibrous causes issues. My absorption has been affected due to the short bowel, I very easily become deficient in vitamins and minerals and I don't seem to hold on to calories the way I used to. Mr Miller was never sure how my body would react following the surgery and it was a very real fear that I would end up on tube feeding for life but I am coping all by myself, my body and my ability to heal has astounded me.

My story is a very rare one, I'm just that one person in however many thousand that bad things happened to and I would not want anyone considering having the surgery to completely write off going through with it because of me. I can honestly say that even if I knew back in June 2013 what I know now, I would still go ahead and have the surgery. The surgery has completely changed my life. Despite all the issues I've experienced, the surgery has still worked for me. I have lost almost twelve stones in weight. I now wear size 14/16 clothing, clothes bought in normal shops! I now have confidence in myself, I go out places, I talk to people. I live in the real world now, the wider world, not the world I had made for myself inside the four walls of my house. I feel like I have worth. And more importantly, I am immensely content with my life. That is why I have never regretted my decision to have the surgery.

And the last good thing to have come out of all of this, two months after being given the go ahead to continue trying for a baby, I fell pregnant with my daughter. She is the silver lining in an otherwise very grey cloud. She is my new beginning.