Back in 2012, when I was told I’d have to have an operation to remove my bowel, I was given the option of having my rectum removed and my anus sewn up as part of the procedure. Known as a total proctocolectomy, I felt that one operation and one recovery was the best way for me to cope with everything. Maybe I would do things differently if I was facing that decision today, but back then I think there was so little accessible information regarding stomas, bowel surgery, Crohn’s, Colitis, that I just did what I thought would be best.
I reflect often on how little information was available back in 2012 in comparison to all that is out there to support new ostomates nowadays. There is such a fantastic support network online that raises awareness and gives open and honest advice based on personal experience; I was given a contact number by my stoma nurse, for one person who had had a J-Pouch and I had another contact for a lovely guy who had had an ileostomy years previously and had a very positive outlook on life. After chatting to both people, it seemed to me that if I opted for the J-pouch it was likely that I’d need several operations and I’d still have my anus intact. For the reason I gave above, I decided to go for the total proctocolectomy, therefore creating my “Ken butt”. I have to say that this has worked very well for me and twelve years on I have no regrets whatsoever.
Things to note:
- Having two surgery areas was awkward at first; lying down and sitting was painful. I had to learn to lie on my right side in bed which, after years of avoidance as that was the painful side, just didn’t seem comfortable. I practically had to retrain my brain to accept that it was okay to change the habit in order to accommodate Homer the stoma. The sitting issue was fairly simple to resolve simply by purchasing a donut cushion that made things a lot easier. That cushion proved to be a great asset (no pun intended) when I returned to work. At that time I was working for a passenger seating company as a purchaser, so I could use it on my office chair.
- I didn’t really consider how I would need to give my stitches time to heal. My eagerness to resume intimate relations with my wife led to some of my stitches opening up. This meant a slightly longer recovery as I had to have the area packed and dressed daily for a couple of weeks. It wasn’t funny at the time but we look back and laugh now, especially recalling the time I was facing the wall having the dressing done by the nurse when her colleague came into the room and said, “Oh, hi Keith!” I still wonder if she’d recognise my face…
- On the flip-side however, there was one particular aspect of having my rectum and anus that I didn’t miss. As an Ulcerative Colitis sufferer, the haemorrhoids I had were horrific and they were extremely painful. In fact, in 2010 I went into hospital for a haemorrhoidectomy but having been taken to theatre, received my sedation, I woke up on the recovery ward with my piles still intact. I was told that owing to the severity of my colitis, it was not possible to go ahead with the operation. I suffered with those horrific things for another two years until I had my Ken butt! I don’t miss them one bit!
In conclusion I’d like to just reiterate the fact that although my decision to have the proctocolectomy would probably have been the same, having had more ‘real’ information (e.g. via people sharing their experiences on social media) might have made the decision easier. At the end of the day, I can’t say it enough times- do not rush your recovery, whether it’s a Barbie butt, Ken butt or even an Actionman butt, your body will heal at its own pace. I am very happy to be celebrating twelve years of Homer the Stoma who has literally never been a pain in my arse!
