In May 2014, the muscles in the bowel forming my j-pouch went "floppy" overnight, and my pouch became huge (sometimes called "megapouch"). My abdomen swelled up alarmingly and I was only passing toothpaste-sized BMs. Now for more than three years I've had to deal with a constipated j-pouch (the irony is not lost on me!).
I didn't know it that day (I thought it was some weird after-effect of food poisoning I had recently had on an overseas trip, or maybe a blockage or adhesion), but that was the end of my life as I knew it. I spent the first year exploring every avenue to improve things, but to no avail. I keep telling myself "This is the way things are now", but everything is so rotten that I can't accept it.
My abdomen is constantly distended - I look like I'm three or four months pregnant by the end of the day - and I often have painful indigestion after eating, even though I only have small meals. It feels as though someone is making balloon animals out of my intestines after I eat. By dinner time I often have to undo my clothing or change into my pyjamas because of the discomfort. I can't bend down to do up my shoes, or cross my arms, or hold my weaving loom. Sometimes my lower back hurts because of the extra weight I'm carrying in my front.
If I want to exercise (I'm trying desperately to get some endorphins), I have to sit around and wait 3-4 hours after eating or drinking, otherwise I can feel the food gurgling up and down inside me when I run. You know when you try to unblock a toilet with an old-fashioned plunger? That's what it feels (and sounds) like.
And everything social revolves around food. It's very difficult to go for a meal, then only eat a small amount. People don't understand that eating hurts me now. I've had friends tell me I'm making them uncomfortable by not eating, and even been told off for being uninterested (I was trying not to cry with indigestion pain so went a bit quiet). If I try to go to non-food events, I have to fast beforehand so I'm not in pain, but then I just feel hungry and faint and can't enjoy myself.
There's no way I can go out to work either, because I only feel reasonable between 11am and 2pm (providing I don't eat lunch). I used to do editing work from home, but the stress of living like this for three years, plus sleep disruption, has reduced my attention span. I no longer have the capacity to do anything even mildly demanding. I can't concentrate, and I make silly mistakes and forget things all the time. If something small goes wrong, I end up in tears.
As if this wasn't enough, a bunch of other stupid stuff happened to me as well, like people moving in next door to my "dream home" who turned out to be arseholes, not getting on with my dad's new partner, and needing a root canal. Plus there's the 50 boxes of stuff I need to sort out after my mum passed away.
I had bought an old house, which I planned to enjoy renovating for the next few years, but between my physical discomfort and lack of tolerance for stress - well, that's not happening at all. I thought I'd be inviting friends to stay for the weekend, writing a "How I restored my home" blog or even running a B&B, but instead I've had to move in with my dad because I couldn't cope with being on my own. It's like everything I planned for the rest of my life was cancelled by this.
It's not just the pain and the discomfort and the inconvenience, but the isolation and inactivity is killing me. I'm in tears every day from pain or loneliness or just plain disbelief that I've ended up in this situation. I feel like I've aged 15 years since this happened. The only relief I've had in three years was when I got gastro and didn't eat for three days - after the vomiting stopped, it was actually heavenly to have no appetite and a normal-shaped tummy for a few days.
The only treatment option I have is a permanent ileo, and they have to open me up from sternum to gizzard again (if that's a phrase). When I had my temp ileo my skin was so sore and excoriated, even with visits to the stoma nurse and much effort on my part. My skin is very sensitive and changing the adhesive was horrific - I still blench to think about it. And anyway I'm in no state to deal with a major operation now, even if I wanted to. I've got PTSD from a separate matter and would freak out being in hospital.
I never imagined when the surgeon told me "The j-pouch may not last you for the rest of your life" that it would give out when I was only 39. (Oh yeah, this cancelled my 40th birthday party as well.)
If I eat, I suffer. If I don't eat, I suffer. I can't win and I don't know what to do in order to be able to live with this. At the moment all I can say is that I am existing, not living.