My Story Part 3 - Worst Case Scenario

When I woke up post-op, I was very groggy and sore. I was in the High Dependency Unit (HDU), which is a ward for patients that require more intensive observation and nursing care than a regular ward. I was still struggling to breathe and my lungs were sore. I felt something touching the back of my throat and I realised that I had the infamous yellow tube down my throat. I was later informed this was known as the 'feeding tube'. I felt my neck and felt something hanging from it, not knowing what they were, I had to take pictures on my phone to see what they looked like. It was called a Central Line and it is used to draw blood and administer medication.

I just felt lost and confused, I didn't really know what was going on.

The final and most alarming discovery was finding out that the 'worst case scenario' had been realised. I had an ileostomy bag. The doctor explained to me that they had no other choice, as there was so much infection in me that it would have been even more dangerous if they tried to put my bowel back together. However, they did inform me that this would be reversible in a few months. I couldn't believe what I was hearing, 'why did this have to happen to me?' I thought; It seemed so unfair. Everything was happening too fast and  I did not know how to process this information!

I googled exactly what an 'ileostomy bag' was and it said

Ileostomy is a stoma constructed by bringing the end or loop of small intestine out onto the surface of the skin, or the surgical procedure which creates this opening. Intestinal waste passes out of the ileostomy and is collected in an external ostomy system which is placed next to the opening'.

I was still confused. I was advised that a nurse who specialises in stomas would be coming to help me with it and to answer any questions I had. I had so many questions, 'What exactly was this...? What do I do with it...? How is this going to affect the clothes I wear when I go home...? Am I ever going to feel normal with this...? How long until it can get reversed...?' All this was going around in my head that it was starting to make me feel dizzy.

After two days, they removed the tube from my nose and began to give me soft foods such as ice cream and jelly. It was staying down, which was what the doctors had hoped for. I remember feeling that the meals were coming too often, and I wasn't always hungry for them but I ate them anyway. My mam arrived one day with some apple tart and custard and after one bite I started vomiting. I will never forget the fear I felt once that happened. I didn't understand why my food wasn't staying down. What did this mean for me? I continued to vomit all through the day and night, it was horrendous, just lots and lots of green bile.

The following day, I was informed a tube would have to back down into my stomach, as this was the only thing would prevent me from getting sick and as much as I hated having the first one in, I was prepared to do anything to stop this vomiting. This time the tube was thicker and green in colour. The feeling of getting this tube up my nose and down my throat was indescribable. I had to keep swallowing until it reached my stomach.

After this was inserted, I had to stop eating and drinking as I had developed a condition called Paralytic Ileus. Another google session informed me that

Paralytic Ileus is the condition where the motor activity of the bowel is impaired, usually without the presence of a physical obstruction. Although the condition may be self‐limiting, it is serious and if prolonged and untreated will result in death in much the same way as in acute mechanical obstruction.

Basically my stomach and bowl had stopped working, with the result I was unable to eat or drink. I was used to fasting but being told not to drink was torture, I was only allowed touch water to my lips or take a sip and gargle and spit it out. I could also wet a gauze and suck on it. I'll never forgot how dehydrated I felt. Although I had been given nutrients and fluids through IV, this just wasn't the same as having a drink, my mouth was constantly dry. This went on for days. The worst feeling was waking up in the morning and not being able to eat or drink, the days felt so long because there was nothing I could do. I was just hooked up to antibiotics and fluids for 23 hours a day. I was also getting a fluid called Total Parenteral Nutrition (TPN), which was the medical term for infusing a specialised form of food through the vein. It has 2,000 calories in it, which was hard to believe because I was watching myself fade away.

I didn't know when I was going to be able to eat or drink again. It was a waiting game, waiting for my bowel and stomach to start working again. I am struggling to describe the feeling, there are honestly no words, it was one of the worst experiences of my life. I thought to myself everyday "I am never taking food or drink for granted ever again". The TV seemed to always show adverts for McDonalds or Dominos. It got so bad that I went days without even turning it on in order to avoid them.

Week's passed and I still wasn't allowed eat, I was getting skinnier and skinnier. I hated looking at myself, I felt disgusting. I got weighed and I was after losing 2 stone and it was so obvious.  

While all of this was going on, I barely had time to process the fact that my original "worst case scenario" had happened. Throughout all of this the stoma bag was being emptied and changed by the nurses. Knowing that I would have to take over this task for the next six months was terrifying.

I had become so weak and dependent on other people to do the simplest of things for me, I was unable to do anything by myself. I wondered how long more was I going to be like this, there seemed to be no end in sight. My body and mind were deteriorating.  

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