Anyone who has ever been a patient in a hospital for any period of time, doesn’t matter if it was a few days, weeks or even months, knows the feelings of exhilaration and liberation on being discharged, allowed to get back to the “real” world. It’s feels like you’ve been released from prison, not that I have first hand knowledge of what that feels like, but you know what I mean. Being allowed to go home after my latest episodewas even more wonderful because it was just a few weeks before Christmas, a time of year I always truly loved, and I really wanted to make it special for my then three year old son. You see, I was riddled with guilt because Christmas the previous year was a complete wash as I was in the throes of this mysterious illness (that would later be diagnosed as Crohn’s) and in the worst shape of my life. I honestly thought I was going to die, so no, nobody was feeling the Christmas spirit. The poor kid didn’t even know Christmas had come and gone - if guilt could kill, I’d be dead for sure!! And although I was very happy to be going home, I also had a niggling sense of unease that something could go wrong and I would be back in “prison” in the blink of an eye. I chose not to share this with my family, but the truth was that although I was leaving the hospital feeling a lot better than when I entered, I wasn’t feeling as good as I’d hoped. I knew it was just a matter of time before things got worse but I really didn’t want anything to spoil this Christmas. On the drive home, I was greeted with the sights, sounds, and smells of Christmas - shiny decorations, twinkling lights, people wearing holiday colours loaded down with tons of shopping bags, Christmas music on the radio, happy laughter, and the scents of baking, pine trees, and snow. The magic of the season uplifted my spirits as it usually did, and I convinced myself that everything would be fine, nothing wrong with wishful thinking. I’d always been a glass-half-full kind of gal. Life had thrown me some mean punches in my earlier years that I managed to take on the chin and move on, a little scarred maybe but I recovered well enough. But those are stories for another time. Anyway, I gave myself a little pep talk about being positive. I’m not sure I listened though. I was still new to the mind control thing.
All’s Well, Mostly…
Thankfully, my mom had now come to stay with us because it had all become too much. She was a tremendous help in making what could have been a very drab Christmas, a wonderful one for all of us, especially my son. She was the take-charge, lady-of -the manor type and before I knew it Christmas was happening! She was determined to ensure that her grandson had the best time ever! The only damper was my private struggle to keep my spirits up on the days when I really wasn’t feeling well; I tried to downplay it as much as I could so as not to spoil everyone’s fun. At every little twinge, I’d tense up, worrying and waiting for things to go south, until one day I suddenly realized I was sabotaging myself. I was stressing myself out needlessly which was what would probably cause me to end up back in the hospital prematurely. So I decided I’d had enough of that; carpe diem - let tomorrow bring what it brings, I’ll deal with it as it comes. Worrying wasn't going to change anything except perhaps, no definitely, make things worse. With that mindset, I took things day by day, and was able to enjoy the holiday season with my family. I was careful with what I ate while I watched enviously as the others consume all the Christmas goodies than my mom made and she made everything! I would tell them it didn’t bother me seeing them partaking but they all knew that was a lie. Hey, something was wrong with my gut not my eyes or nose! I thought hopefully a day will come when I'll be able to join them. And as we toasted in the New Year, non-alcoholic for me of course, I hoped and prayed for a better year, though I knew the odds weren't in my favour.
Back To The Grind
I returned to work in the New Year after having been on extended sick leave, and yes, miraculously I still had a job. And although I knew logically it wasn't my fault for being off work for so long, the guilt was overwhelming. As time went by, I don't know if it was the commuting, the rigid schedule, the rushing around, just the regular work- related routine, I started getting sicker and sicker but forced myself to shut up, show up, and do the job, or try to anyway. I couldn't even look anyone in the eye because I was thinking that everyone was probably thinking “here she goes again”, and they would have been right. Then one fine day I was summoned to my manager’s office, and on my way there I'm thinking, okay, this is it, I'm gone, it's the end of the road. I'd already come to terms with the fact that furthering my education was going to have to be put on hold indefinitely, if not forever. Now I was also going to lose my job. I must really have pissed off the Big Man upstairs, that’s why he’s punishing me! But I'm a good, honest, compassionate person I thought, so how could this be happening to me! Yes, I was still in my “why me” phase; give me a break, it was early days yet! By the time I arrived at my manager’s office, I was a total wreck on the inside but deceptively calm on the outside. She didn’t beat around the bush, got right to the point which I appreciated. She told me that while it was good that I thought I was well enough to return to work, it appeared as though it wasn’t the best decision. From reports she’d received and her own observations, she could see that I was struggling to get through the day, and even though she admired my courage and determination, she couldn’t allow it to continue. She said she knew quite a bit about Crohn’s because her nephew had it, and she understood the toll it took on the body and mind, and how unpredictable it could be. She then strongly suggested I go on short-term disability, which was six months, and take care of myself properly and we'd re-evaluate at that time. To say I was stunned is the understatement of the century, I was momentarily speechless but recovered enough to express my heartfelt gratitude for the support and understanding. So the Big Man upstairs really wasn’t so mad at me, he was throwing me a lifeline! I finished off what was my last day of work for the next six months, and headed home feeling as if a giant boulder had been lifted off my shoulders.
Out Of Options
About a week into my leave, I awoke in the middle of the night in excruciating abdominal pain. It was so bad I was rolling around on the floor curled up in a fetal position bawling. I probably traumatized my poor family, sadly it wouldn't be the only time. I, naturally, ended up in the Emergency Department where I was evaluated and admitted, big surprise. When my GI showed up a few hours later, I could tell that he wasn’t really surprised to see me there, and from the look on his face I knew I was in for some bad news, well more bad news. He’d obviously reviewed my chart and spoken to the on-call GI who'd admitted me because, well he said so. He also said he’d ordered an abdominal CT Scan to be done immediately because he suspected that something else was wrong beside the “regular” issues. The scan was done promptly and confirmed his suspicions. I had developed an abcess, more accurately called a fistula, between the intestinal wall and bladder, which wasn't uncommon in IBD patients, especially if the disease is severe and there are multiple strictures (narrowed segments) in the intestines. Well, that sounded like loads of fun! So, what now? And here it was, the moment of surrender, I needed to have the dreaded surgery. Why? Well, according to my GI, I had no quality of life - my disease was out of control because none of the treatments were working, I was in constant pain, I was living in the washroom and I was withering away, and now I started developing other serious complications. Is that all? Oh! And I had no quality of life, did I mention that? And here’s the kicker, before I could actually have the surgery, I had to first have the fistula drained because it would be toxic if the fluid leaked into my system during surgery. Wonderful! How was that done, you might be interested to know? Well, let’s just say the procedure was very unusual and took much longer than I had anticipated. After all, it was the early ‘90’s. Under local anesthetic, a small incision was made in the specific site (right lower abdomen) and a thin tube (catheter) was inserted right into the fistula, the outer end which was about six inches was left on the outside and had a small clear balloon-like object at the end to collect the fluid while it drained. This setup was attached to my clothing with a pin to hold it in place. Lovely! Seeing that tube embedded inside and sticking out of my abdomen was quite unnerving. Of course it was taped around the opening so I couldn’t actually see it, but I could certainly feel it. Just so you know, this was not to be a one-day affair. On no, I had to keep this contraption on for days so the nurse could periodically monitor the “output” in the little balloon thing. I don’t exactly know what I expected to see collecting in the balloon but it wasn’t this clear reddish fluid, and it just kind of dripped out as opposed to gush like I'd imagined. Anyway, the “drainage” took way longer than I thought it would, about five days, and the “output” wasn’t as much as I anticipated either. The removal of this tube was another experience I’d very much like to forget, and this was done while I was wide awake! You know, when they tell you to take a deep breath, well, that didn’t help, never does really except to build up more anxiety, in my experience. As they ( there were two nurses) started to pull the tube out, I felt as if they were pulling out my insides along with the tube, somewhat painful and an extremely unsettling sensation. I’d like to hope that there have been some improvements in this drainage technique (if it still exists) since the ‘90’s because it really was unpleasant. So now I was all set for the surgery- Good Times!