Out of the blue

It happened to me. The thing that you kid yourself only happens to other people. Why would it happen to me? I'll be fine. Only I wasn't.

I remember reading through the possible medical complications that could arise as a result of my surgery when I signed the consent form, ranging from mild things like bruising, scarring, pain to the absolute worst of the worst, death and everything in between. I remember the intense fear inside me but I also remember thinking “I'll be okay, I'll do everything right and I'll not be that one person in however many that it happens to, I simply won't be.” Little did I know that six months later my world would be turned upside down.

After my surgery everything was perfect. I was progressing very well, I was losing weight and able to eat and drink fine. I attended every single outpatient appointment given to me, I took all my supplements, I was more or less a perfect post-bariatric surgery patient. It was the evening of the 6^th of January 2014, my husband had the day off work and we had been enjoying it together, having a wander around town and a coffee. I felt completely fine, there wasn't anything at all that made me question my health. We had some tea and then sat down and had a Bananagrams tournament which ended up running late into the evening. It was about midnight when we decided to turn in for the night. I'd started having a bit of discomfort in my tummy, nothing terrible, just the feeling you get when you have trapped wind. After a trip to the bathroom with no result I went to bed and expected that by morning I would feel better. As soon as I laid down flat on my bed the discomfort in my tummy turned into an intense pain which took my breath away and I began to panic. I hoped that the pain would pass quickly but after a couple of minutes the pain was continuing to intensify and I was screaming in pain, writhing all over the bed trying anything to give me relief from the constant agony in my tummy, begging my husband to call an ambulance. It was at that point that I knew deep down something was very wrong and the fear of what it was made the situation even worse. Although it can't have been more than ten minutes until the ambulance arrived, it felt like an eternity. I had gone cold, my back was drenched in cold sweat and I was beginning to lose consciousness. I had started retching and bringing up foam. I remember the pain was still as intense as ever but I didn't have the strength to cry out any more. It was as though I had left my body and was standing at the edge of the room looking in on the scene playing out, I wasn't me any more. I remember the look on my husband's face, he was pale, he didn't know what to do, he just kept stroking me and telling me he was with me, telling me not to go to sleep, that I needed to stay awake.

The paramedics got me settled in the back of the ambulance and gave me some gas and air to take the edge off the pain but I may as well have not bothered with it, it offered me no relief at all. I just kept thinking to myself “What is wrong with me?” I ran through all the possibilities in my mind, gall stones are a common occurrence with post-bariatric patients, it seemed logical to me and the symptoms fit. We had also been trying to fall pregnant, was I having a miscarriage or an ectopic pregnancy?

When we got to A&E the staff started working on me immediately, they put a cannula in my hand so they could administer some much needed pain relief but even at the maximum dose of morphine I was still begging the nurse for more. I felt out of control and just wanted them to put me to sleep, I kept begging them to just put me to sleep and wake me when it was all over. A pregnancy test came back negative so ectopic pregnancy was ruled out, everyone was now looking towards signs of gall stones. At this point I have very little recollection of the events which followed so I can only go from what my husband has told me. I was taken for an X-Ray and then was later taken to a ward where they kept my pain levels under control and were monitoring me until 8am when the consultants would start arriving and assessing patients. My husband was asked to leave and I can't even remember him going.

A familiar face came to see me, Mr Miller, the head of bariatric surgery and someone I have been in contact with in the past. He was very grave and told me that he needed to get me into surgery immediately to see what the problem was, my vitals were not good and my blood work had come back all over the place. I asked him if it was going to be open surgery and he nodded at me, I burst into tears and started bargaining with him to try and do it keyhole but he very firmly said that if I refused he could not guarantee what would happen to me, he had the consent form in his hand and he wasn't asking me to sign it, he was urging me to sign it. He told me that as soon as I had signed my name he would be going to scrub for the surgery and I would be taken immediately. I had no one with me. I had gotten my husband to call my family and tell them it was nothing to worry about, it was probably just gall stones and they would treat me and then let me go. I had told my husband to go off to work as usual expecting that everything would be fine after some medicine and yet here I was, in the middle of a flurry of a medical emergency. A nurse had come to put another cannula in my arm before I was wheeled away and they told me it would be best if I contacted my family and let them know what was happening. Everyone was acting so strangely, they were looking at me sympathetically, worriedly and I didn't know why but I knew it was serious. I called my mum and then my husband, explained what was happening and told them not to worry, I was in very capable hands. It hurts now to know that those phone calls could very well have been my last, I didn't know it, no one knew it, but I was dying at that point and the surgery was the only thing that could save me.

I was wheeled into theatre, it was so much bigger than the last time. I recalled the theatre from my first surgery and remembered thinking, there's no where near enough room for them to do the surgery here! But this one was massive and there were so many people in blue with masks on around me I couldn't even count. My heart was racing in my chest and once I was on the operating table I just kept begging the kind woman holding my hand to please put me to sleep, I said it over and over again, I remember the warm tears pooling in my ears and muffling the sound of my own voice and then I was under.

Whilst I was unconscious - From my husband's eyes

By the time Alex called me to let me know she was going in for an emergency operation, I had been awake for over 24 hours and didn't know what to think. Part of me wanted to believe that the operation would be done quickly and simply and that there would be no need to be worried. The rest of me heard the obvious terror in Alex's voice when she told me she loved me before the end of the call. I wanted more than anything to be able to get to the hospital to be with her, but I respected her request for me to stay put at home and see her after everything was done.

It wasn't until I got to the hospital and tried to find out where Alex would be taken after the operation that I had my first inkling that something more serious might have happened. At first I decided to go to the NEU ward, as this is where she had been taken after her gastric bypass in June, however I was told that she was not scheduled to have a bed there. I then walked down to the ward she had been on when I had last seen her that morning, where I was told that following the operation she would be taken into the ICU. Desperate for more news, I headed down to the ICU and spoke to a doctor who told me that although he couldn't give me any information about how the surgery was going, he would take my details and give me call once Alex was out. What followed was the longest three hours of my life, where me and Alex's family sat around a table in Costa glancing nervously at the time, steadily growing more and more frightened. As we watched the afternoon give way to evening, we periodically kept phoning the ICU, desperate to get some news, but each time we were just told that she was still in surgery. By the time it got to 6pm, we all decided to get another coffee and we were waiting in line when I suddenly got a call.

I had expected to hear from the doctor I had given my number to in ICU, but instead was told it was Mr Miller, which meant he must have called almost as soon as he left theatre. I thought he was just calling to let us know that Alex's surgery had been a success, however he gravely asked whether it was possible to speak to me in person, which immediately made us all terrified. Without hesitation we abandoned our place in the line and hurried down the long corridor to the ICU and were swiftly buzzed onto the ward. Although we were quickly met by a doctor, who ushered us hastily back into the relatives rooms, we caught a fleeting glimpse of Alex, with a maze of tubes and wires springing from her. Alex's mum was instantly distraught, fearing the worst, but I was determined to be optimistic and told everyone that it was probably just to make sure she was given plenty of time to heal. Even though I tried to reassure everyone that everything was going to be fine, there was one thing that had me scared – Alex was on a ventilator.

After we were shown to the room, we were left alone for almost twenty minutes, during which everyone fixated on Alex lying in amongst the myriad tubes and machines. Her mum kept jumping to the darkest conclusions, assuming she was terribly ill and at death's door; that her greatest fear was going to be realised and she would lose her eldest daughter months after her son. Although I didn't want to show it, I was just as worried – not really that she was going to die, as I had convinced myself that there couldn't possibly be anything seriously wrong with Alex – but that there was something I should have noticed earlier in the evening, that might have meant she had gotten seen to sooner.

Into all this anguish and worry came Mr Miller and my hope that he would simply tell us that the operation had taken a bit longer, but otherwise had been successful. Such hopes were quickly dispelled by the grim look on his face. The first thing that he told us was that contrary to what we had first thought, it had not been a gall stone.  She had something called acute mesenteric ischemia; her gut had become trapped and had become starved of oxygen and died. He went onto explain that it wasn't only a small section of intestine, but almost all of it, which he had no choice but to remove. Far from being out of the woods, Alex was, at present, lying with her abdomen open with her bowel in three, disconnected parts. She would need to have a second operation to have them all connected together once he was sure that the remaining bowel would remain healthy and he hoped he would be able to do this the following day.

I normally find it irritating when people misuse the word stunned, but that is precisely how I felt at that moment. I don't think I was capable of fully processing what Mr Miller had said apart from the fact that he would be essentially reversing the gastric bypass. Its funny, the thing I was most worried about at that moment was having to tell Alex that after all her hard work, her bypass had been reversed. After that, it dawned on me that the operation had been open, which was something that Alex had been adamantly against. This was yet another thing she would have to be told, but I don't think it had really sunk in just how seriously ill Alex was.

Both of her parents seemed to grasp the situation much better than me, which in a way was much, much worse, as they realised just how bad things were. I don't think I even took it in when Mr Miller said that someone who was twice Alex's age might not have survived the illness, let alone the subsequent surgeries.

I asked a number of questions that, in hindsight, might have seemed idiotic to an outsider; As Alex had lost most of her bowel, would she be given a transplant? No. The intestinal tract was one of the most immuno-active parts of the body, so it would be very risky. As her bypass had been reversed, would she be she be back to square one, likely to start gaining weight quickly? Again, no. He was more concerned about the possibility that she would be unable to absorb nutrients sufficiently, which would cause rapid weight loss. Indeed, would she ever be able to become pregnant now that this had happened? He didn't see any reason why Alex wouldn't be able to carry a child, but it was far too early to comment.

When he eventually left us no-one knew what to think. Her mum and sister were both distraught, although I am sure that for all of the brave face that her dad had, he was feeling just as terrified. I think I was still in a state of unreality, unable to process what we had been told. It could have been shock or exhaustion – perhaps a combination of both – but I just remember me trying to console Alex's sister by telling her that whatever had happened to her, it hadn't been that serious, so there was no reason to worry.

After what seemed like an age, we were finally called through and told that we could briefly go and see Alex, although she was unconscious and heavily sedated. It was at this point that it became real for everyone. It is all well and good being told that something had happened to the person you love most, but it is easy to convince yourself that there was some kind mix-up and it wasn't MY Alex. I cannot begin to describe the utter devastation of seeing the person you have shared that last six years with lying on a bed with what seemed like a dozen different tubes coming out of them. There was a plethora of different tubes about her; drips containing saline, pain relief and sedatives; a catheter; the ventilator going into her open mouth; two or three drains from her open wounds and another from her nose. I think if it was just that, it might have been bearable, but seeing the ventilator tube protruding from Alex's open mouth was horrible – to know that without that great hulking machine, she wouldn't be able to breathe. We did the only thing we could think of, knowing that in all likelihood she didn't know we were even there, stroking her hair, holding her hand and telling her that we were here and loved her.

We didn't have long with her before we were told that we should go home and rest, as she was in the best possible place and that we would be contacted if they needed us. In these circumstances you almost hope that they never have to contact you, especially with someone in such a critical state. After saying fraught goodbyes, Alex's family and I left in silence. What could we talk about except for her? But how could we bring ourselves to discuss it, as it only made everything seem so much more real. I'm not sure if I remember the journey home, just being dropped off outside the door and being asked if there was anything I wanted or needed. I knew they were all suffering, as I was, and they needed time to deal with the enormity of the situation, so I said I was fine and they should get off home. There was only one person I needed around me right then, but she was miles away in a hospital bed, completely unaware of anything that had happened, so I opted for solitude.

I knew that I had to tell everyone in my family what had happened to Alex, so I called my sisters, parents and aunt and managed to keep myself composed, although it seemed like a superhuman effort. My family rallied around me, asking if there was anything I needed – my sister and aunt actually got together and baked me a load of pies, pasties and cakes so I would have quick food.

The last call I made was to my work to let them know the situation and to tell them I wouldn't be in the following day, for obvious reasons. I agreed to start working half days when I came back to work, as that gave me an opportunity to visit Alex in the afternoon.

After the phone call it was just me again, alone in a home that was meant to have Alex in by my side. I tried to watch some television, but found it impossible to concentrate on anything. I then tried to play a game, something that should have helped take my mind off the fact that she wasn't here. It didn't. Finally, I decided to try and surrender myself to sleep in the hope that things would have changed for the better the next day. It was then that I broke down under the strain of everything that had happened and I sobbed and cried, partly because Alex wasn't lying next to me, but mostly because I had no idea when, or indeed if, she would be again. It finally hit me; Alex was seriously ill in hospital and still had another operation to go before we would know if she was OK

When I woke up the next day I knew that nothing bad had happened over night as there had been no missed calls from the hospital, or indeed from Alex's parents, but I still wanted to check with the ICU, just to make sure and was told that she had been stable all night and there had been nothing worrying to report. I had go over to the hospital with Alex's parents to see her before the second operation, which was scheduled for early afternoon. As we all gathered around her, Alex appeared to respond to us, but quickly started to attempt to pull out the ventilator and various drips. We were told by the nurse that the sedative had been briefly withdrawn to see how she was responding, but it was still upsetting seeing someone so clearly distressed.

As there were so many of us there – Alex's grandparents had rushed down, so there were seven people in total – we had to take it in turns to be with her. It shames me to say it, but part of me resented the time that the rest of her family spent with her, as I wanted desperately to spend every second I could with her. Before we knew it, we were being told that Alex was being prepared for surgery and we should wait to hear back. Thus started another excruciatingly long session in Costa, constantly glancing at our phones in hope that a little more time would have somehow slipped by. I don't remember precisely how long it was, but I just remember the relief when we were told she had come out of surgery.

Back down in the relatives rooms, Mr Miller said that he had successfully reattached the three parts of Alex's digestive tract and he thought that there was just enough bowel left for Alex to live a fairly normal life. We were told that we would be able to go in and see Alex in a while – we were told they were busy inserting a central line – but she would still be kept unconscious until the following day to give her body more time to adjust and start healing. When we finally got called through, she looked much the same as before, with an extra tube or two sticking out of her, but it still felt wrong. Alex wasn't supposed to be just lying there, not talking or moving; it just felt wrong and upsetting.

For some reason best known to my brain, I tried to cope with the situation by examining the surrounding machinery in detail, asking the staff anything that I wasn't sure about. Quite why a relative of a seriously ill patient would choose to find out what each of the monitors were measuring, or indeed why they would find it interesting that the ventilator has a saline drip attached to it in order to hydrate the air, is beyond me. Although we were all still worried about what would happen to Alex, when we left the ICU that night, we at least knew that Alex had survived both operations and seemed to be responding well.

That evening I actually managed to watch a film and put in a few hours on some game or another, but I still wound up in bed crying myself to sleep because Alex was not with me and I was still terrified that something would happen to her.

Before I knew it, it was morning again and time for me to go into work. Some people, Alex included, can't understand why I chose to go into work when she was still in intensive care, but it was just my way of coping. I knew that in work I would just listen to some music and get into a zone where hours could pass without be being fully aware. Of course, before I started work, I had to call the hospital and make sure that Alex had been OK over night – she had.

Just as I was finishing work I received a call from the hospital saying that Alex was awake and off the ventilator. I pretty much ran almost two miles across York to get to her.

 Waking up and my recovery begins

Me a week after the ischemic bowel.  Still very ill with a central line, oxygen and drain.

I opened my eyes and something was stuck in my throat, I was coughing and retching, my tummy was hurting with every heave, my eyes were streaming, I couldn't breathe and yet I felt like I didn't need to breathe at the same time. Then suddenly the tube was taken from my throat and a nurse was trying to calm me, she was using something to suction my throat and I could breathe properly again. The first thing I remember is breaking down in tears, I was clutching the nurses hand and telling her she couldn't let me die, my parent's had only just lost my brother and they couldn't do it to them again, they couldn't let me die. I was sobbing and asking where Sam was, he had been here with me and he wasn't there any more, where had he gone? I kept asking why had he been here, I had been with Sam but I couldn't see him any more. It was a mass of confusion in my head. The clock read something like midday and I remembered thinking how quick the surgery must have been, they must have found the problem and fixed it very quickly. I had no idea that it wasn't Tuesday any more, it was Thursday. I had no idea that I had been on life support for over two days. I had no idea about what had happened to me, I just assumed that they had taken my gall bladder out and I was right as rain. I didn't even know I was in intensive care.

Fragments of memories keep coming back to me. My husband's face dancing into view not long after I woke up, then my mum and dad, my sister and then my gran. Everyone looked strained and tired and yet I remember having no concern at all. People were crying and hugging me, clasping on to my hands, I remember their grip so tight and moist. I remember my mum and sister trying to make conversation with me, they were telling me about a shopping trip they had been on recently and were listing off all the clothes they had bought. Vest tops, shorts, a pair of flowery leggings. I laughed and exclaimed that they had already told me all this. They both looked at each other in confusion and amazement, it turned out that they had indeed told me about the clothes but it was whilst I was unconscious. I find this completely amazing. I know that it has been reported before that people who are unconscious can still be aware of their surroundings and can hear what people are saying to them but I must confess that I always thought it a load of rubbish. Now I know first hand that it is as true as can be and I find that a great source of comfort and I'd like more people to know that talking to their loved ones who are in an unconscious state is not silly or a waste of time. I asked my mum what the great big green bag hanging by the bed was and she told me that it was my food and that it was feeding me through a line in my neck. It's clear to me now that I was highly medicated at the time because my reactions to things were not how they should be. In a normal me I would have been beside myself with panic and yet here I was, taking it all in as if it was something completely insignificant. My mum tried to explain to me in a very simplified fashion what had happened but I don't remember taking it in at all, it was all so confusing, like everything was slipping in and out of focus. Nurses were bustling around me constantly, hooking up more blood, more fluids, checking this and that but it all seemed normal to me, even though it clearly wasn't.

The first night was terrible, ICU is a very scary place to be. People around me were crying and moaning, machines bleeped wildly left and right, groups of medical staff were rushing back and forward. From behind the curtain next to me I could hear a man completely out of control. I don't know what was wrong with him but he was throwing things around, shouting and screaming, there were security staff and nurses trying to calm him down. I pulled the blankets over my head and sobbed my heart out because I was so afraid he was going to come and get me.

The next day I was moved into the Nursing enhanced unit, a sort of halfway house between ICU and a regular ward. I was still receiving blood transfusions as I kept turning green and my blood levels were low. I was finally allowed to have water, my mouth was so dry and cracked and even though the IV fluids were keeping me perfectly hydrated, I still felt as though I was dying from thirst. I wasn't allowed to gulp down mouthfuls however, I was given a sponge on a stick and was only allowed to dip it in the water and moisten my mouth with it. Until the joins in my digestive tract were checked for leaks I was not allowed to have anything pass through my system. The sponge on a stick was a great source of amusement for my visitors who would sit and watch me slowly raise it to my lips only to miss and get myself in the eye or the nose or even the pillow. I was on so much morphine that I kept falling asleep with the stick in my mouth or I would fall asleep mid-dip in the water glass and then wake myself up just as I had knocked it to the ground! It's only now that I look back and think 'what on earth must I have looked like!'

The medical staff are very keen to get you moving as soon as is possible after surgery to help reduce the risk of blood clots and to help recovery. The physiotherapists came to see me four days post-op and wanted to help me move to a chair for the first time. The idea of moving around so soon after surgery was a very daunting one, simply breathing, coughing and sneezing whilst lying in bed put a strain on my staples and was painful so to think about actually standing up and taking those first few steps was difficult. I was very weakened from the surgeries and spending such a lot of time immobile so needed an awful lot of help, simply just having the back of the bed raised to aid me into a sitting position was tiring. The physiotherapists had the difficult task of manoeuvring my many drains and drip stand, having to thread the tubes and wires this way and that to allow me to move freely, it was not an easy task and certainly not something that I could have done alone. The morphine drip was extremely helpful in taking the worst edge of the pain away and allowing me to continue moving. I only sat in the chair for about fifteen minutes at a time to begin with, surrounded by my cluster of bottles, bags and wires, all taking up more room than I was. Just the simple act of sitting upright would wipe me out physically and emotionally but day by day I was becoming stronger and was able to sit for longer.

My various drains were checked multiple times a day and the fluid collected in each tube recorded to see whether the volumes were reducing as they should. Two of the drains were inserted into my bowel during surgery to remove fluid and blood, two thick plastic tubes attached to two litre bottles, one on either side of me. These were the first to be removed as they had stopped collecting anything and to leave them in any longer could have caused an infection. Drain removal is one of the most horrible experiences I have had. They are very easy to remove, just grab a hold and pull but it is the most disgusting feeling for the patient. It was painful for me and I could feel the tubes deep within my stomach slowly slithering out, it seemed to take forever for the first one to come out and then I had to face the next one being removed too. Although it was a horrible experience, it was also a very positive one because I had a bit more freedom without the two bottles and it made things a lot easier when moving around.

I found morphine very helpful during the first few days of my recovery and the patient controlled system meant that if I was having pain I could help ease it immediately by myself. However, after about six days I started to discover that it also had some rather horrible side effects. I suffered grogginess, hallucinations and terrible anxiety whilst using it. During one episode, I saw another patient's face morph into a cartoon strawberry jam jar where the strawberry had a face and was talking to me in a most sinister way. I decided from that point that I would cease use of the morphine drip.

My consultant was very pleased with my progress and kept telling me that he couldn't have hoped for a better outcome, I was doing so well that he moved me to the normal post-surgical ward. One morning I walked myself to the bathroom to brush my teeth and clean myself up and I decided to take a peek at my tummy for the first time. I lifted my hospital gown up and saw dozens of staples snaking from my sternum all the way to the very bottom of my tummy and two incisions going from side to side, they had essentially cut me open like a baked potato. The incision seemed to run straight through where my tummy button should be, I was convinced they had cut it out and I would be left without one but a nurse later explained to me that they had cut around it and it was still there. The portion of the incision above my tummy button was neat and straight but I noticed that the portion below was puckered, red and warm to the touch. I knew that it had become infected and immediately alerted a nurse of the issue. During ward round they confirmed that the bottom half of my wound was not healing together and had become infected. Immediately they removed twenty staples from below my belly button and then parted the semi-healed tissue until it was open from the muscle layer up. It was then cleaned and packed with gauze and would need to be treated until it healed all the way up to the top. There is nothing more disconcerting than seeing a nurse with a ream of gauze as long as your arm slowly filling a gaping wound in your body and it's even worse when it comes to them removing it, think clown's handkerchief trick and you're on the right track! During the daily dressings I would squeeze my eyes shut tightly so I couldn't see the wound, I stupidly thought that if I couldn't see it, it wasn't really there. During one dressing change a nurse commented pleasantly on how well it was healing and that she needed to use much less gauze to pack it so I dared a peek. Immediately I wish I hadn't, although she could see a wound showing improvement, all I could see was something from a horror film, something that did not belong to me. I think that was how I was able to cope with the situation, I tried to pretend this wasn't really happening to me. Moving around with the open wound was uncomfortable and I could feel it opening and closing beneath the dressing, as it was healing it would itch and prickle incessantly and there was nothing I could do about it.

On the 15^th January I started having problems with the drain in my nose. I think it drained fluids from my stomach and it used to fill up with seaweed green gunk which would shoot out whenever I changed position from lying down to standing up. I started noticing the tube moving freely whenever I swallowed and within minutes it was shifting by inches each time. Because of the movement against my gag reflex, it was causing me to retch and bring up bile which was pulling at my staples, I was becoming extremely distressed. The doctors had hoped to keep it in until I had my CT scan to look for leaks at the joins of my bowel but they had no choice but to remove it immediately. The tube was extremely thick, almost as wide as my nostril and very long as it was reaching all the way down into my stomach, I knew removing it was not going to be pleasant. After a quick tug it was gone and the only evidence of it ever being there was a sore patch on my nostril. I could finally swallow properly, I didn't have a huge tube and bag coming out of my nose, it was such a relief. People were finally able to see my face properly and not just the thick green tube.

It had been nine days since my surgery and Mr Miller felt that enough time had passed for the bowel to be tested for leaks so a CT scan was ordered. I was extremely concerned about the outcome of the scan as any leaks could be very dangerous and I could also be looking at further surgeries to fix them. My family were trying to keep things very positive and kept saying how certain they were that everything would be fine, I think they were trying to reassure themselves just as much as reassuring me. The idea of anything else going wrong was didn't bear thinking about. A couple of hours before the scan I was brought a bottle of liquid which I needed to drink, it was going to contrast on the scan and show up any leaks at the joins of the bowel pieces. After being forbidden from drinking at all since I was anxious in case there were leaks in my bowel it felt very strange to be suddenly allowed and I almost felt like I wasn't prepared. I was scanned and then very soon after being returned to the ward Mr Miller visited my bedside and informed me that there were no leaks found on the scan. I had been so rigid with fear, fully expecting the worst to have been discovered that it came as a shock for him to say that it was good news, I literally melted into the bed, finally able to relax. We still had a long way to go with my recovery but this was a major hurdle and we had passed it with flying colours. Better still, I was finally given the green light to have fluids and the next day I would be allowed to try puréed food.

Mark came to visit me during afternoon visiting and when the tea trolley was brought into the room I asked for a cup of tea, my first proper drink in nine days. Nothing will ever compare to the taste of that cup of tea. It was probably weak, lukewarm, lacking in sugar but to me, after days of being denied any kind of fluid, it was perfect. Suddenly, after drinking the tea I felt a warm sensation against my leg. I immediately started thinking the worst, that there had indeed been a bowel leak and they hadn't seen it and now it was happening but what had actually happened was the tea had gone straight through me and into the jejunostomy bag and was now warming my leg like a hot water bottle. It was like those cartoons where you see ghosts eating and drinking and it ends up on the floor. After the initial shock Mark and me ended up laughing at the absurdity of it all.

My day went from good to better when a nurse came to remove the catheter from me. I had been stuck in a hospital gown since admission, it was impossible for me to wear pyjamas with the catheter in place and with all the other tubes it had been more practical to wear something that fastened at the back. Now that the catheter was out I was able to put on my familiar pyjamas and it was so comforting. The only connections I had left was my jejunostomy bag and the central line in my neck which was attached to the TPN feed on the drip stand. I was finally able to move around freely. My dad came to visit me that evening and he took me away from the ward and into one of the courtyards. The air outside was cool against my face and I remember tears pricking my eyes to feel life again. Being in the ward is like being detached from reality, it still goes on in the background but you're completely disjointed from it. Feeling that cold winter air on my face brought the realisation that I was still here, I was still alive to enjoy it. That simple gesture of taking me outdoors meant so much to me, it gave me hope and it refreshed my soul.

Over the next few days I started trying bits and pieces of puréed food, I had no appetite at all and puréed food rarely looks appetising but I knew that each piece of food I ate would take me one step closer to having the TPN feed removed. I got Mark to smuggle some salt and pepper sachets into the ward so I could add extra flavour to the food in the hope that it would make it easier to eat. After the ordeal that it had been through, my digestive system was not playing ball. I was stuck in a perpetual state of sickness, the most intense, constant sickness that I have ever experienced. Although my head would be shouting out for food, my stomach was churning constantly, ready to decline any food introduced to it. Eventually, even water was causing me to be sick.

The dieticians would come and visit me daily to discuss my food intake and measure my strength with a hand grip. The most insulting thing was that they were convinced that I was making myself sick, they couldn't understand why I was having difficulty and so jumped to the conclusion that I was doing it on purpose. They didn't even have a full understanding of how my surgery had left my digestive system and they were under the impression that I had had my gastric bypass completely reversed and now had a full sized stomach capable of accommodating a full meal as any normal person could. The reality was that I still had my small stomach pouch, which was still giving me the restriction I needed, that was connected to the stomach remnant and then on to the remainder of my small bowel. Even after explaining the procedure to them, they still chose not to listen and it was a further three months later when they sat in on an outpatient appointment with Mr Miller that they finally understood their error. Mr Miller felt that with time, my digestive system would become accustomed to processing food and until a time came where I could consume sufficient calories, I would remain on TPN.

 Further Complication

Everything seemed to be looking up from this point and I was making progress every day. I would take myself on walks up and down the corridor several times a day and then spend some of the day sitting in the day room to get away from the ward. I even felt strong enough to walk from the ward to the Costa at the entrance of the hospital, the nursing staff and my consultant were extremely impressed that I was making such an effort to keep moving and building myself up.

On the morning of the 24^th January I felt that something wasn't quite right. When I was breathing to the bottom of my lungs I was getting an odd twinge. The feeling was very much like when you have precordial catch syndrome, that feeling in your chest like an air bubble causing you to breathe shallower and shallower until it feels as though the bubble has popped. I tried to put it to the back of my mind, expecting that in a few minutes, maybe an hour, the feeling would have passed. When an hour passed me by and the pain was still there I told a nurse and explained my worry that it could be something sinister, he asked me to wait another half an hour and if it was still there he would bleep Mr Miller. The pain hadn't gone away by this point and Mr Miller was called to the ward. He explained that the most overriding worry when a patient presents with chest pain, particularly after a major operation and period of immobility, is whether they have developed a pulmonary embolism. He immediately ordered a CT scan to be done as a matter of urgency and I was given a treatment level dose of Fragmin, the idea being that if it conspired that I had indeed developed a pulmonary embolism, the treatment was already under way. Mr Miller explained that he was doubtful that the scan would come back positive for pulmonary embolism as every effort possible was made to reduce the risk to me during my hospital stay. From day one I was on the preventative level of Fragmin, as is standard for any patient with an increased risk factors for DVT. I wore compression stockings from the moment I was admitted to the hospital, even though they pinched, twisted and generally looked unsightly. Other people would cast them aside after a few days of discomfort to the displeasure of the nurses but I persevered and only ever removed them when I needed to be bathed. Whilst I was unconscious and up until I had a good level of mobility I had Flowtrons attached twenty four hours a day, strange boots strapped to your legs and feet which massage and keep circulation going. My mum reliably informed me that she would go to great lengths whilst I was unconscious to move my limbs around and massage them. As soon as I was physically able to, I was walking around, pushing myself to go as far as I could for as long as I could, all in an effort to reduce the risk of DVT and pulmonary embolism. Quite simply, there was nothing more that could have been done either by me or by the medical staff to reduce my risk, so we believed our chances of me having developed a pulmonary embolism to be quite remote.

All of this bustle and commotion was happening right in the middle of visiting time, so I had my mum and sister with me as it was unfolding. A cannula was hurriedly situated so the contrast dye could be administered during the CT scan and then moments later a porter arrived to wheel me down to CT on a bed. I was very, very scared. Everything was moving in fast forward, whirling around me and I couldn't absorb quite what was going on, I just closed my eyes and cried through closed lids during the scan.

Back on the ward we were waiting anxiously for the results. The radiographer had informed us the results would be sent upstairs straight away so we didn't expect to have to wait too long. It was past visiting time by now but because of what had conspired, the nursing staff were kind enough to let my visitors remain with me and I think they knew that without them I would have crumbled. Half an hour passed and still no one had come to us, we were stuck in limbo, not knowing what was happening. My mum decided to go and find someone to give us some information, she found Mr Miller's junior who had put my cannula in earlier and brought him back to my bed. He closed the curtains around the bed and while his face read 'it's not good news' I had to cling onto the hope that everything was fine.

“It's just a pulled muscle, isn't it?” I smiled at him. The poor man looked completely distraught, he hunkered down so he could look me straight at eye level, he clasped my hand in his and twitched his mouth into a pitying half-smile. “It's not a pulmonary embolism, is it?” I questioned, my voice was cracking and I was pleading him with my eyes to tell me it wasn't. He looked down momentarily and then returned eye contact with me and simply confirmed quietly that it was, it was indeed a pulmonary embolism. I shook my head in disbelief, told him he must be mistaken, there was no way it could possibly be. He clasped my hand tighter and gently tried to get it through to me that the worst had happened. I completely broke down. A pulmonary embolism? People succumb to pulmonary embolisms. They kill people stone dead in their tracks and without warning, that was my knowledge of pulmonary embolism. I became completely inconsolable, screaming and crying that I was going to die. My mum was sobbing deeply beside me, clutching at me, trying to stop me shattering into a million tiny pieces. Her own father had died from a pulmonary embolism, it was common knowledge to me and as such it was something I was always aware and wary of. Now I had one and it was too much to digest.

My sister fled the room, distraught and ended up running straight into my husband in the corridor who had arrived for the evening visit. She had started to explain what had happened but was so confused and overcome that she could only say that I was dying. Moments later he rushed in from behind the curtains, his face void of colour. The kind junior doctor calmly explained again what had happened, for Mark's benefit. I still could not come to terms with it all, I could picture this disgusting clot sitting in my lung, I just wanted to reach into my chest and yank it out. To sit there and know that the horrible thing was sitting right there, had gone through my heart and then lodged in my lung was awful. I just wanted someone to take it out but they couldn't.

Mr Miller came to see us a little later and was very disappointed at the outcome. He kept saying that although there was always a chance, he never envisaged that the scan would have shown a PE. He reminded me that the treatment had already commenced and that I would need to stay on this high dose Fragmin until the clot was gone. I asked whether I was going to die and what would happen if it came loose and went through my heart and he explained that the clot had already travelled through my heart and had nestled into my right lung. It felt strange to me that after being told of such a serious medical complication, literally nothing changed. A small adjustment to the medicine I was already taking and nothing more. That was all they could do.

Once I was left alone I started dissecting the last few days in my mind. I realised that when I had been getting up off the bed, particularly at night, I had been experiencing breathlessness. When I stood up it was as though someone had deactivated my lungs and I wouldn't be able to breathe in or out momentarily. I had just put it down to exhaustion and the illness but maybe if I had said something, the doctors could have found the PE earlier. Despite the fact that most PE's occur as a result of a DVT, I never had any swelling or pain in my legs. If I had experienced anything I would have alerted a member of the nursing staff immediately. It was just a freak occurrence.

Over the next few days, the symptoms of the PE became worse. I had been warned that things were likely to get worse before they started improving on the blood thinning treatment. Breathing became extremely painful and shallow. Sitting at any kind of an angle that wasn't bolt upright caused my breath to leave me entirely and lying down was impossible. It was terrifying to struggle for breath and I felt so helpless. I was given oxygen to keep my saturation in a good range, it felt as though I had taken ten steps back in my recovery and I was right back to the beginning.

During this time I became extremely depressed. I was still questioning myself day and night about the ischemic bowel, my head was a complete mess. Why me? Why me? Why me? And then along comes another medical drama to set me off again. I genuinely felt as though life was not worth living any more I would look around the ward, full of lazy people who were bedridden by their own choice. People who, despite pleas from physiotherapists, doctors and nurses, would refuse to get up and move around. I looked at them and wondered why the hell they didn't get a PE. They made no effort whereas I made every effort and yet it was still me who got the raw deal. I looked at other people getting better, having only been in for a routine small procedure and hated them. I saw my visitors come and go and could barely look at them because I resented their freedom, they could walk in and out of here at will and I was stuck where I was. I ended up pushing everyone away, not wanting to get close to anyone because I was so full of hatred and anger. Evening visits became a nightmare for my family. Someone would visit me every single day, twice a day and they would be met with someone who made conversation as difficult as possible until it petered out altogether. I felt like it had been a waste of time having Mr Miller save me, only to have my life become the circus that it was at that point.

I'd developed a fever and my heart rate was continually too rapid, some swabs were taken from my central line and it was discovered that there was an infection in the line. It had been in for almost three weeks so was coming to the end of it's life anyway but it was decided that it would be removed. I was very apprehensive about having the central line removed as I knew it was a long cannula and I feared that it would be painful. I was also concerned that as it was in my jugular vein and I was on high dose blood thinners I would end up bleeding out but I need not have worried. Mr Miller came to me and removed it himself, it was completely painless and all I needed to do was lie still for fifteen minutes until they were sure I wasn't bleeding.

As I was still receiving parenteral nutrition because I was unable to keep any food down, the doctors needed to come to a decision on how to give me nutrition now that the central line was out. The initial idea was to simply fit another central line, this time in my chest. By this point, I felt as though I had been messed around with enough. I had been poked and prodded near constantly for weeks and the very thought of having another needle put into me was too much. I guess you might think I was rather stupid to decline the central line. I guess you may be wondering what on earth gives me the right to go against what medical professionals are advising, but I could not have gone through another invasive procedure. Luckily I was unconscious in ICU when they fitted my central line, this time I would be fully aware of what was happening. It was going to be one of the registrars who would fit the central line and this same registrar had been unsuccessful in finding a vein anywhere on my body that they were able to take a simple blood test from in the past so I did not have an awful lot of confidence in her ability to find one to put the central line in. After realising I was not going to submit to having another central line fitted they offered to fit a nasogastric tube. Again, I declined. I'm sure I came across as a very difficult customer but the truth was that I had been perfectly obliging throughout my entire hospital stay. I had never declined anything and had been a very good patient but I had reached a point where I needed to preserve myself. I did not want to go through anything more than I had already been through. I didn't want to be interfered with any more, I wanted to be me again and be in charge of myself. The registrars looked very disappointed that they were being turned away and were going to have to ask Mr Miller how to proceed.

Later in the afternoon Mr Miller came to see me. I was a bit wary that I might be getting a telling off for being so difficult but I couldn't have been more wrong. He seemed to fully understand that I had reached my limit. He proposed another alternative. I still had a jejunostomy tube, basically a Foley catheter going into my small bowel. It was possible to use the jejunostomy tube with a feeding pump, the same as if I had a nasogastric tube. It meant that I didn't have to go through anything else, they didn't need to put any more tubes into me, they could use the one that was already there. I agreed to this arrangement and I was started on Nutricia feeds.

Initially I was on a twenty hour feed daily, the feed was delivered slowly and for longer in order to see how my bowel reacted to it. Over the coming days they would increase the rate of feed and reduce the length of feed until I was just on overnight feeds, that way it would cause the least amount of disruption to my life. My bowel seemed to handle the feeds well, the only side effect being completely watery stool but my bowel movements had been like that since the bowel surgery. A Nutricia nurse was brought into the hospital to train me in using the Nutricia Infinity system. It was remarkably simple to get to grips with and soon I was setting up my own feeds under the watchful eye of a nurse. I felt fully in control of myself for the first time in a very long time.

 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.