I’m not sure why, but I’ve always tried to be good-humoured and optimistic around my doctors. I guess I thought that doing so would make them like me as a person, and as such they’d care a little more about making me well. That strategy has not served me we these last few months. I think I’ve let my true feelings out in this blog, while putting on a happier veneer in front of the doctors and nurses and surgeons I’ve met in hospital.
Tomorrow, I’m meeting my surgeon for the first time in over two months. In that time, I have not seen any signs of progress. In fact, I’ve made two more trips to the ER because of a fever and a change in the colour of the shit draining from my percutaneous tube. In some ways, I feel like I’m in worse shape now than I was when I left the hospital in June, following my problematic surgery. As such, I plan on taking less of a nice guy approach at my appointment tomorrow, and letting my surgeon know just how hard things have been over the last few months. I’m gonna keep it real. Here’s what I plan on telling him tomorrow, although I’ll probably have to paraphrase some of this speech:
Hi Dr. Cohen.
Is it okay if I begin our conversation today? (I assume he’ll say yes)
I’m struggling. I am really, really struggling. I’ve tried to be good-humoured and optimistic and I’ve tried to take things in stride, but I’m not going to hide just how upset I am with things as they stand. Everyday I wake up and I see my ostomy bag – a full ostomy bag – and the dressing on my wound and the drainage bag on my thigh and I wonder just when, if ever, I’m going to feel well. I’m sad everyday. I’m angry everyday. I’m disappointed everyday. I’m worried everyday. I’m struggling everyday. I know this probably sounds melodramatic, but it’s really how I feel. Everyday.
I have to live at home, and I hate it. I’m dependent on my dad. I can’t work full-time. I can’t run. I can’t play sports. I’ve had to cancel plans with my friends and my girlfriend.
My ostomy has been giving me problems for months. It’s so sunken-in that I can’t get a proper seal around it. As a result, the peristomal skin itches and burns and causes me pain. My nurses and I have tried different things and we can never get a really good seal. On top of that, the stoma is always active. I haven’t been able to gain weight, despite my efforts to eat well and to just plain eat more. I’ve tried diet changes, Metamucil, Lomotil, and Imodium to decrease the outputs, but those efforts either did nothing or caused painful side effects.
My wound, while not too much of an issue now, is still an issue nonetheless. It got worse before it got better. It got bigger before it got smaller. It got more painful before it became manageable.
I’ve had to live with a tube in my buttock for nearly five months now. It’s uncomfortable at best, painful at worse. It’s difficult to sit down. Imagine that. Being in discomfort just from sitting down! The bag that collects the tube’s fluids stinks. I’m apprehensive about going out because I’m worried about the smell. I’ve at times resorted to carrying a Febreze-to-Go bottle with me to spray on my pants to mask the odour.
Everyone keeps telling me I’m young so I’ll heal quickly. Has my pelvic pouch healed? No. Has the abscess healed? No. Has my wound healed? No. So where’s all this youthful healing I keep hearing so much about?
I’m worried about my pouch not having shown any sign of improvement. I’m worried about the abscess inside me that continues to drain. These aren’t just inconveniences, they’re threats. They’re threats to my happiness and my health. I want them dealt with. Now. Not after more waiting and seeing.
I don’t mean to be disrespectful or seem ungrateful. I’m very lucky to be in your care, and I know that you and your team have the hardest job in the world – and that’s not just an empty compliment, I mean it. Fixing broken human bodies is the hardest job in the world. I just had to say all of this because I want you to know about the issues that aren’t turning up on CT scans and blood tests.
I’m struggling here, and I’m sorry to dump all of this on you. It’s just that the surgery that was supposed to improve my quality of life has left me in the worst shape of my life. I’ve endured more pain and frustration during my recovery than at any time over the six years I dealt with ulcerative colitis. There are days when think I would rather go back to a life of shitting my pants because of UC than cope with all the problems I have to face now. I’m scared that things aren’t going to get better. I’m scared that, at 28, all of my best days are behind me.
There. I hope that I can remember all of this tomorrow when I’m sitting in Dr. Cohen’s office. Like I said, I’ll probably have to paraphrase here and there, but I want to get my points across.
Let’s hope I don’t chicken out.