Monday, 6 May 2013

Chasing Rainbows

Oh my goodness!

Where do I start to explain my crazy roller coaster ride? Quite honestly, my head is still not quite in this world but I'm getting there slowly but surely. It's been three weeks since I came in for my "minor" surgery and I have only just started to turn the corner.

My physician came to see me shortly after my last post and we finally discovered what has been making me so ill. She didn't want to dismiss the possibility that there was something sinister going on  since my blood tests indicated that something was going on with my liver. So, I headed off to ultrasound to get everything checked over again. Usually this is a safe and painless test, however, when you have just had surgery....it's is definitely NOT painless or easy at all! Even laying flat on the bed was torture, never mind having someone rubbing and pressing on my surgical wounds! She must have checked just about every organ while I was there, from my liver and kidneys to my spleen. As per usual the result came back "normal" which at the time, was incredibly frustrating because SOMETHING was definitely wrong and yet again no one had any answers for me. I was left feeling completely at sea wondering what on earth was going on with my body to cause all these issues. After reviewing the scan and discussing my case with my GI in Durham my physician returned with a simple trusty stethoscope. She sat and listened to my tummy for a good 5 minutes.... not a single sound was coming from my bowel... I finally got my explanation, the surgery had caused my bowel to completely shut down. It was totally unexpected and had already been going on for longer than is normal after major bowel surgery, let alone the minor op I had. This is very scary stuff and I was beside myself with the constant vomiting, despite having a auctioning NG tube to relieve it. The vomiting was so severe at one point that having the tube in there flicking around caused my stomach to bleed... You can imagine my horror when I went to aspirate the tube and all that came out was fresh blood! At this point, I had totally had enough and decided to have the tube taken out to prevent any further damage. I went solo with the vomiting for 48 exhausting hours before they finally persuaded me to give the tube another shot. By this time I was just too tired to argue and would have done anything for a few hours respite.

When it comes to gut motility issues, there's little that can be done to help and the only option available to me was to ride the storm and hope that my gut would wake up on its own. This is not what you want to hear when you have been vomiting constantly for over two weeks solid and finding the will to keep going was getting harder by the day. Those of you who know me well will know that I always look for the positives and try to smile through it all, but this time I really did hit rock bottom and my family and friends could see it. How do you stay hopeful when there is no light at the end of the tunnel? I held on as tight as I could and tried not to let my children see how sick I had got. I continued to leave the ward with them when they visited and sat and watched them have dinner in the cafe, holding back the tears and the pain as best I could. They ARE my light at the end of the tunnel, and if anything is worth fighting for its my children!

After having a break from my TPN last week I was finally starting to feel a little more human. The vomiting had reduced from 3ltrs a day to 1&1/2 litres and I found the strength to start kicking back! My positivity returned and for the first time felt like I COULD win the battle. My success was short lived though and unfortunately, as soon as they re-started my TPN my symptoms worsened and my liver began to react again. This terrified me, my TPN is my life line, I need it to survive and the fact that my body didn't seem to want to know anymore was not a good sign.

We decided between us that giving my body a rest was the best way forward and my dr agreed to let me decide if I had the TPN over the weekend or not and gave me control over my fluid requirements so I could have extra if needed, depending on how much I was loosing each day. Having control over my own care is always the best way forward, I know what I need and what I can cope with so to me, this was like regaining a little control over my out of control body. I needed that... When everything in your life is upside down, being able to control even the slightest thing gives you the courage to fight back. It might sound silly to those who have not walked in my shoes but believe me, it works!

So, I had another rest from feeding and gave myself a break... however, I WON'T be beaten by anything and I need to get back on feet. I allowed myself 24 hrs to sleep and let things settle and gave it another shot on Saturday night.... BINGO a full nights sleep and minimal return from my NG! I was so pleased with myself for giving it a shot and my fighting spirit returned! My family suggested I  try just having the TPN very other day for a while but I wasn't happy with that... if I could do one night, why stop there?!

It's now Monday evening and I'm on my third day in a row with no vomiting and successful feeding! I can hear my tummy starting to wake up and I can see the rainbow I've been chasing for so long. I'm not fully there just yet, but I know if I stay strong and positive, the only way is up.