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.