After a painful few hours, the high dose drugs had kicked in and I was away with the fairies. I was moved up to Ward 5 where I was ill-prepared for my mini vacation I was embarking on.. a week hanging out with all my patient pals.
The first couple of days were painful – emotionally, mentally and physically. The day after I was admitted they were still happy for me to go ahead and have my colonoscopy – much to my complete dismay. Was I prepared mentally for this? No. I had just experienced the worst pain of my existence the night before, followed by a terrible night sleep all due to an inflamed colon.. but go ahead stick a camera right up in there and see what you can see! “We are just going to give you some sedative so you will fall asleep and will not feel or remember anything.” AMAZING – this truly sounded great. I was petrified. I was already IN pain. My colon was still inflamed and the last thing I needed was to feel how painful the procedure would be.
… If only the nurse was right. I did not sleep. I did not pass out. I felt everything. I had a nurse holding down my legs. Another nurse holding my hand and trying to sweet talk me into calming down whilst I had a doctor sticking a tube up my swollen colon – FANNNNNNTASTIC. Just another day in paradise! The doctor ended up ‘aborting mission’ of seeing inside my swollen colon when realising how much pain I was truly in – luckily he managed to see enough to confirm that it was okay. No immediate concerns. THANK GOD – I did not need to do the procedure again.
That afternoon, the nurse came in and simply goes ‘you can go home now’. The jaws of my entire family dropped .. and I laughed. Laughing was my new medicine in bad situations. This was the start of a few firm discussions with hierarchy to politely state that I was not leaving the building until we a) have some answers, b) see a doctor & surgeon, c) I was not in pain. The night previously in the emergency room the surgeon had come to see me and had referred me to a higher surgeon who was indeed meant to see me the following day. The fact they wanted me discharged after my bowel nearly exploded was truly hilarious.
‘What do you mean you are not going home?’
‘um… I am not leaving the hospital until someone gives me something to fix this situation’.
FINALLY I was put under the colorectal surgical team (the surgeons that deal with colon problems). I have truly never been so happy to see a surgeon in my life. They came in and discussed the next step and indicated that due to my colonic transit study, the issues I was continually having and the inability for any kind of drug to help my colon kick start, the next step was a full colectomy.
A ‘normal’ person may have cried. A ‘normal’ person may have sat there and questioned why it was happening to them. A ‘normal’ person probably would have had every other emotional reaction except mine. I just laughed. I had nothing. I was done. I had already come to accept since the phone call from my Gastro that this was the next step so really the news did not come as a significant surprise. However; I had previously been told that only part of my colon was to be removed … but nope. THE ENTIRE THING. Goooooood. Great. This is a good time.
The waiting game began.. waiting for the different surgeons. The different gastro specialists. The different specialists that were to come and see me to ensure that we have truly exhausted all options. The main surgeon, the big man, the coordinator guy, the one that has 98457293847 years of experience came to see me in his big white wellington boots with a hair net on – reassuring outfit choice! The surgeon indicated that I was excessively close to surgery; however, there is one more drug that he wants to tick off before surgery can go ahead. You may be surprised – but this did not settle well with me.
At this stage, I have been in 18 months of pain. I have endured MANY medicines, all which have had little to no impact on my colons ability to function. ANOTHER MEDICINE was honestly the last thing I wanted to participate in. In fact – I cried at this stage. I was angry. I was mad. I just wanted my colon out. I did not want to go home and try another drug. I was sick of being in pain. Sick of the waiting game. Sick of putting my life on hold to see if drug after drug would work. BUT IT GETS BETTER.. the drug has a 30% chance of ACTUALLY working. FANNNNNTASTIC! I questioned so many times why this was even worth trying. The surgeon simply explained that the surgery is huge. REAL BIG. He informed me that the condition I have is EXTREMELY RARE…. so rare that they operate on one person every two years. WOW. Of course – wouldn’t be something normal would it? That would be silly. The surgeon stated he had a checklist to follow and had to justify to himself, as well as me that changing my entire life was only done when EVERYTHING was exhausted. This medicine being the very last checkbox.
Every specialist from here on in agreed with the surgeon that it was best to try it. It may not work. In fact.. there is an extremely extremely small chance that it will. Not one specialist was confident it would. But it was a matter of trying – just to rule it out. At this stage I had come to terms that it is best to try everything than rid of my colon. However, had also not plowed too much hope into this ‘trial drug’, as all the specialists reminded me… there is a extremely high chance surgery is going to go ahead.
… ANOTHER WEEK WITH A COLON CONTINUES…