New here, though I have been lurking for most of a year. I'm not looking for solutions, just tired of feeling alone in this agony and wanted to share my story with others who have endured or are enduring.
Everything started last June with a week long bout of what seemed like acid-diarrhea. That episode literally burned a tear in my backside; and the subsequent months introduced me to pain that I never thought was possible.
For context I have broken multiple bones, I have hiked 8 miles on a summit with a broken knee, too proud (and stupid) to call rescue. I am not a small man and I consider my pain threshold to be above average. But this is next-level...
In the worst instances it's throbbing and overwhelming, I imagine it's what it would feel like being stabbed by a screwdriver up there. How can such a small rip create such overwhelming pain? I once fell over from sneezing, simply because it made me clench those muscles and the pain was more than I could take. It's ridiculous that when it's healing, the pain becomes more localized and sharp, finally settling into an intense itch before a few days of relief and then an eventual re-tear.
It has been over a year. I had the LIS this past May and it was not the perfect solution that was promised. The days and weeks following were a new pain, in some cases it was literally dizzying. At one point I had to crawl to the bathroom to vomit because the pain was so debilitating. But I was optimistic, thinking it was at least a means to an end, and relief was in sight sometime soon. It was for a few.
I was actually good for the past few months. Not normal, but better. There were lingering aches and pains, but a 1 out of 10. That's bearable. Compared to the months before, it was a world of difference. I could get back to living life without worry, without this condition dominating everything. I wasn't afraid of the bathroom, I wasn't waking up terrified - trying to enjoy that brief hour in the morning where there's no pain until you go and you can feel normal for just a bit.
But last week I had a re-tear. I was careless, I thought I was healed, and I ate late-night diner food with some friends and now I'm paying the price. It hasn't healed quickly as I'd hoped, and yesterday was worse than the day before which isn't at all encouraging. It has been over a week and it's still throbbing. Moving hurts. Breaking wind hurts. Laughing hurts. My life is defined by this pain again.
I'm back to the old routines, breaking out the epsom salt and warming up the bath. Back to eating only soup and smoothies. Back to sitting on the heating pad all day while I work. Stool softeners and psyllium and cruciferous veggies, no dairy and no fun. Back to scouring these forums looking for others who have taken way longer than expected to heal after the LIS so I don't feel so isolated in this misery.
I'm sorry you had to go through this, but thank you all for sharing. It's encouraging for me to see that others have had to wait 6 months to a year, I feel like there's still hope. Thank you. Coming here is one of the few things that makes me feel less lonely. My wife, who suffers chronic lupus pain, says her ordeals pale in comparison to this.
I'll be OK. I know all the tricks. I've been here before. I have a good CRS and I have optimism because I was good for a few months. It's just a waiting game at this point. But I wanted to share my story for anyone else dealing with this hell, hoping you can feel less alone, too.