Some of you may remember me as that English person with the chip on their shoulder about
surgery. Well, I apologise. I didn't realise quite how awful rectal disease was until I lived with it for a few years. I'd had Crohn's for years of course, but it "spared my rectum", as the medical terminology puts it. In many ways I was extremely ill because my disease was systemic and severe, plus I had a stricture and numerous partial obstructions, but at least I didn't have godawful, hideous urgency and tenesmus twenty million times a day. Combined with concentrated sulphuric acid levels of butt burning if I forgot to take a single dose of Questran.
Anyway, I had surgery in 2013 to remove my colon. Had a stoma for 2.5 years, then got it reversed. 'Cos of Crohn's I wasn't eligible for a j-pouch, so my surgeon simply hooked my ileum to my rectum. Depressingly predictably, the disease moved into my rectum. Nothing has helped - predfoam, mesalazine suppositories (which I couldn't tolerate and quickly stopped), two biologics (Entyvio and Stelara). And a few weeks ago I reached the end of my tether. The snapping point was when I was now getting up anything from 2-5x a night to go the toilet. At least before I'd been able to sleep through the night. It was bad quality sleep, but now I was getting bad quality sleep that was constantly being interrupted. I couldn't take it. Told my new GI I wanted to see a surgeon. Don't think she especially approved, but she agreed to refer me.
Saw the surgeon a few weeks ago. I had no idea what to expect to be honest. During the UK's first lockdown the NHS basically shut up shop and all non-emergency operations were put on hold. My mum's friend's lung tumour was ignored for a year. (Thankfully they have finally operated and it is hopefully all gone.) I wasn't sure if the surgeon would consider my case or not, but he did. In fact he seemed to be quite sympathetic to it. He wasn't my original surgeon who did my first two surgeries. She's apparently still there, but I decided to stay with this one because he does keyhole surgery which the other one doesn't, and if I can avoid having my stomach sliced
open for a third time that would be quite nice.
So yeah, now I'm on a waiting list for surgery and I'm terrified every time I think about
it. For every time I am calm and believe I am doing the right thing, there's at least three times when I wonder if I am making a terrible mistake. FFS. Three surgeries in, and the anxiety doesn't get any better.
Thing is, I had a stoma for two and a half years and while I hated the stoma for the first year, it did eventually get to a point where it was the closest thing to a pre-Crohn's life I had known. However, I am dreading the lengthy recovery all over again (even with keyhole surgery, it will still take a long time for the bowels to relearn their new plumbing). I am also fearful about
being dependent on ostomy supplies. That particular fear has not only not gone away, it's intensified against a background of supply chains disruptions in the UK. But since my reversal surgery I've managed to build a collection of new fears, including homelessness and poverty, and, well, there's only so many existential crises you can have at once. If the supply chains collapse, they collapse. Nothing I can do about
I'm also worried about
possible complications, the new stoma not working as well as the old one, the Crohn's returning in the small bowel, etc.
On the other hand if I do nothing at all, then there will never
be any improvement. I put up with it for a few years, but it is seriously starting to grind me down. I know I don't have fistulas, or any other markers of severe disease, but that is of little consolation when you're still chained to the toilet and in pain.
Anyway, wish me luck folks. No date yet, but it'll probably be November or December. Barring Covid of course, but vaccination has (sort of) got that under control for the moment.
PS: I'm also looking for a new (used) car and that is totally doing my head in as well. I'm not rich enough to do leasing and the price of used cars has gone through the roof
Post Edited (NiceCupOfTea) : 9/8/2021 8:14:27 AM (GMT-6)