After my initial diagnosis of Ulcerative Colitis years before this hospital stay, I had heard of Toxic Megacolon. I only knew a little bit about it but enough to be terrified when I was told the scans showed I had developed it. If you have never been diagnosed with an Inflammatory Bowel Disease like Ulcerative Colitis or Crohn’s Disease then you probably haven’t heard of Toxic Megacolon. It basically means dilation of the colon, a potentially lethal condition that becomes toxic as the colon expands, dilates, and distends.
That diagnosis was immediately followed by the surgeons asking me if I wanted an epidural or an IV drip post surgery. The two surgeons that were in the room had a different opinion on which option was better so I asked the doctor I liked better based on the vibes I got from him in the five minutes I have known him which he would choose in my situation. He said without any pause that the IV drip is what he would choose so I told them that was what I wanted. Next, they had me sign surgery consent forms and gave me a quick rundown of what to expect. I asked a couple of questions, got a few short answers and once the doctors left I talked to my husband about this life changing procedure.
I was about to have a total colectomy, which means they will be removing my large intestine, leaving me with only my small intestine, a temporary stoma, and an ileostomy. I was also informed that this would not be the last surgery even if everything went as planned. I will need to have 2 more surgeries within the next year before I could ever think about getting back to what will become my new normal, if having a stoma could ever become normal.
I remember waking up with an epidural even though I clearly requested the drip and signed the papers stating that the night before surgery. I found out later that after the 3 and a half hour surgery while I was in recovery they decided to give me the epidural because I was in such intense pain. Apparently I was in the recovery room for another 3 hours and nobody asked my family how they felt about switching my pain control. I would think when you are as heavily sedated as I must have been fresh out of major surgery, I probably wasn’t the best person make big decisions although they say I signed another form stating I wanted the epidural instead.
When I was able to return to my room I couldn’t believe how much pain I was in. I told the nurses and doctors that I needed more pain meds and maybe this epidural wasn’t even working. They decided the only way to find out for sure was to unplug it for an hour and see if I am in more pain or if it stays the same. If I am in more pain that means it was working and it turned out that it wasn’t working because over the course what turned into about 4 hours I was still in a ton of pain before they decided to remove the epidural. I was in a lot of pain because since I woke up from surgery it turns out I wasn’t getting any pain meds until they finally hooked me up to the button that gave me a shot of pain meds every five minutes.
Even though my pain was finally being addressed I was having a hard time bouncing back from the surgery. The doctors blamed it on how long I was sick before I came to the hospital. They say a good rule of thumb to go by is for every 1 day you are sick, it takes about 3 days to recover. Since I was sick for weeks before I even went to the hospital I knew it was going to be a long road to regain my physical health. What I didn’t know yet was that the hardest part of this journey was still ahead of me.