Deciding To Get Ostomy Surgery

Almost everyone, I think, eventually needs to make the decision for surgery no matter what it is. Sometimes it's an easy decision, sometimes it's hard, and sometimes it’s made for you because your body needs the help. I personally have lost track after 20+ surgeries when it comes to my IBD.

Bowel resections and other Crohn's surgeries before my ostomy

I've experienced all kinds of different surgeries in my 34 years of Crohn's, from the obvious bowel resections to the not-so-obvious surgeries for fissures, fistulas, kidney stones, abscesses, perianal draining, and finally an ileostomy with proctectomy (Ken butt). All of these were easy decisions to make for me as they had to be done to get some relief except for the last one, getting an ostomy.

Even back in 1989 when I was rushed to the hospital for emergency surgery for an obstructed bowel followed by an intra-abdominal abscess, the surgeon told me not to be surprised to wake up with an ostomy. I was in my early 20s and I did not want to have to live with a bag attached to me for the rest of my life.

It was something I could not mentally handle. It was bad enough I was being mistaken for someone who had AIDS, from my drastic weight loss, but add an ostomy bag to the equation, it was something that was just too much for me to handle mentally. Fortunately for me at the time, I did not wake up with an ostomy.

Should I get an ostomy?

Fast forward to 2019 and my GI strongly suggested I start thinking about making the difficult decision to go forward and get the permanent ostomy surgery with proctectomy. She did remind me, though, that the surgery does not take the Crohn's away. It is not a cure.

The main reason for the surgery was because I had been suffering from perianal disease for just 1 year less than my Crohn's diagnosis. No matter what we tried over the decades – including biologics – the pain from fistulas, fissures, and the more painful abscesses was just too much to handle. I eventually came to terms that there was nothing left to do but to go ahead and get the surgery.

Ostomy for Crohn's plus perianal disease

Of course, I Googled the surgery and all the horror stories about the proctectomy so I was still very reluctant but I knew it had to be done to finally get some relief. The biologics which should have helped the perianal disease only helped my Crohn's. Just looking at a chair brought up severe anxiety because I knew it was going to be painful.

September 2020 was when the surgery was scheduled but it was only a temporary loop ileostomy to divert waste from my rectum in hopes that this would reduce the abscesses around my rectum and then I would return 6 weeks later to have the permanent ostomy surgery. Everything went well and it actually didn't take long to get used to the bag and bag changes, but it was only a month later that I was back in the hospital with acute renal failure because of that same bag.

Surgery complications

I was losing too much liquid and my kidneys couldn't keep up. I had a GFR of 4 and creatinine of over 1300 (a normal GFR is 60 and over and a normal creatinine 0.07-1.3 mg/dL) and was in the hospital in the hope to get my kidneys back to a point where we could finish the ostomy/proctectomy surgery.

It took 2 weeks but finally, my body was ready and so was I. It took 6 hours but that was because my surgeon painstakingly, millimeter by millimeter, removed my intestines that were attached to my abdominal wall from the dozens of previous abdominal surgeries. Too much scar tissue.

Wishing I had an ostomy for my Crohn's disease sooner

I was expecting to wake up to intense pain from removing and sewing up my butt, but I had none. Nothing. The pain, which was minimal, was from the ostomy. Opposite of what I was expecting.

It took a few months for my butt to heal because of its obvious location but I don’t miss having to rush to the bathroom anymore. I still have issues but they are mainly from the bag leaking.

The pain I had for 3 decades was gone. How do I feel about having an ostomy now? I should have done it sooner.