As many of you know, I started back at university last week. I deferred my first semester at the beginning of this year because of colitis and my emergency surgery, and throughout the three to four months of downtime between semesters, I was recovering very well. On Tuesday last week, however, I noticed a painful lump under my pelvic/pubic incision line, which I thought was a hernia. It turns out that my surgeon forgot to mention that when he removed my colon and left the rectal stump, he attached the top of said rectal stump to the inside of that incision. The idea is that after two to four weeks post-op, a few pin-sized holes will open up and drain any blood and mucus, as well as the same draining through the back passage. The idea is that when the colitis flares up, it can easily drain outside the body without flowing into my abdomen and giving me peritonitis. Having never been told, I never expected this to happen.
By the weekend, it had turned purple, so I went to A&E where the doctor seemed pretty confident that I would be admitted, but he called my surgeon who explained to him that he gave me a "closed mucous fistula". Please take note of the word closed. On Monday night, I took the absorbent pad that the surgeon had put on after checking it earlier in the day to find that it was no longer a few pin-sized openings, but it had unzipped between those openings. It was now an open wound about one-third of the length of my incision. It bled profusely, to the point that I had to wear a second ileostomy bag over it because any pads or gauze I covered it with would be soaked through.
Yesterday, I told my surgeon's nurse, who said she'd call me back when my surgeon was back in his office, which wasn't until this morning. It turns out that my surgeon isn't going to fix it, and he instead sent me to the stoma nurses to organize some extra bags that are basically a very small stoma bag with a gauze lining on the inside. Upon seeing the stoma nurses today and removing the bag I had covered the wound with, the wound had increased in size to half the length of the incision, so not only does it look awful, but it's very long. I was expecting the surgeon to do something to improve it, but he instead just told me to maintain it until my J-pouch surgery at the end of this year.
It took what felt like an eternity to come to terms with the ileostomy and the routine of changing and maintaining the bag, and now I have a second bag, which I'm told needs to be changed twice a day. It feels like I've been thrown back to the beginning again as this wound is very hard to come to terms with, but there's not much I can do. It seems that it will require far more maintenance than the ileostomy bag. Today was possibly the most angry I've ever been in my 18 years of existence. I am particularly frustrated with my surgeon for not only refraining from ever mentioning that the wound will open slightly and ooze but also for doing nothing to aid it now that it's open.
As for my tough decision, I mentioned that I have my J-pouch surgery booked for the end of this year, the 23rd of November to be precise. I also mentioned that I have only just started back at university after deferring my last semester, but I've now got the option of pulling out of this semester as well and moving my surgery forward so that I don't have to maintain both the wound and ileostomy for the next four months, on top of a full-time university course. I have until this Friday to decide, so 48 hours from now, otherwise, I will incur a financial penalty and will not be refunded the $4,500ish for this semester.
It was a very, very tough day, and I have plenty to think about before Friday...