Posted 10/11/2016 2:48 PM (GMT 0)
Update!
I had my second surgery two and a half weeks ago - to remove my end-ileostomy, create and connect my j-pouch. Things went smoothly, and I'm very happy with progress thus far.
My surgeon recommended open, rather than keyhole, surgery. He thinks open surgery makes it easier to get a good result with the anastomosis, to avoid damaging the nerves that control erections, to reduce the chance of sepsis post-surgery, etc. I would definitely say this surgery has been more demanding to recover from than my colectomy, which was keyhole... but not massively. By day 13 I was strong enough to be out for dinner with my wife. (I did work really hard on my fitness in the six weeks before this surgery though, lots of cardio and weights - and was much fitter going into it than before my first surgery).
The surgery took 4 hours. I was in hospital for six days afterwards - three days in High Dependency (though I was ward-fit by day two, but had to wait for a bed on the normal ward), and three on the ward. My bowels didn't wake up until the middle of the night on day two. Before that, I was eating and drinking, but everything was just sitting in my stomach. I walked around the ward a lot to try to get things moving again. Eventually I brought everything back up, and that seemed to kick start normal movement again. The final night with an ileus was not pleasant - all I could think about was how good and easy life had become with the stoma! However, once I moved past that, things improved rapidly.
In my case, the surgeon created and connected the j-pouch in a single procedure. He kept the rectal catheter in for five days to protect the anastomosis in the crucial early phase. Once that came out, I started using the j-pouch right away.
The two minor blips were: (i) I let myself get dehydrated in the first day using the j-pouch. This wasn't intentional, but the result was very unpleasant albeit short-lived. (ii) My wound developed a minor infection, which was apparent by day 10 when my staples were removed. I was put on antibiotics for a week, which dealt with it. The wounds are healing well. Some of the skin around my stoma site is numb, hopefully the damaged nerves will regrow.
I'm taking six weeks off work, and will go back to a physically light schedule for the next few months. Today is day 20 post-surgery, I'm feeling really well, comfortable physically, getting out and about, and enjoying life. The j-pouch is working well. There is no urgency, I can hold it when necessary, and am happy with how it is performing.
I was genuinely happy with my ileostomy - life with it was great. I was proud to have my stoma, because it was like a badge that showed the world that I want to live, that I had taken on a horrible disease and was still standing. It reminded me that my body was fragile, but my spirit was strong. However, I'm still glad to have had the j-pouch: it feels good to have my guts back inside my body again. I had found my ideal stoma bag combo (Sensura Mio one piece + Eakin Ring) for comfort and function, but my daily routine feels slightly less complicated with the j-pouch, in that I don't have to spend time dealing with bags, rings, adhesive removers, barrier sprays, etc. I still have a skincare routine for the j-pouch, but it's much less complicated (Sudocrem to prevent butt burn).
The choice to have surgery (when it is still a choice, rather than emergency surgery) is a huge and deeply personal one. I chose to have surgery when infliximab failed, and declined the option of progressing onto vedolizumab (Entyvio). I wasn't on predisolone (having failed on it a few months before), my colitis was bad and I had lost quite a bit of weight, but I wasn't systemically unwell yet. I wanted to go into it while the rest of my body was still in decent shape, to give myself a better chance of good outcomes and fast recoveries. So far I'm happy with that choice.
Looking back on four hard years with UC, it's like I have woken up from an extended nightmare.
Albannach