By Sam Alexandra Rose
Sam guest blogs regularly for Bowel Research UK, sharing her experiences with bowel cancer and Lynch Syndrome.
When I returned home from the hospital in early 2011 after having my colostomy reversed and an internal pouch (or J pouch) created, one of the first things I did was make a spreadsheet so I could keep track of how often I was going to the toilet every day.
I listed the date and how many times I had a poo both during the daytime and at night. In my spreadsheet I added a column labelled “Other”, where I listed anything of note that I had eaten. For example, 25th January recalls “beans” and 2nd February says “alcohol” for the first time, while 21st February notes I ate “enchiladas”.
On my first day home from hospital on 7th January 2011, I recorded that I went to the toilet 13 times in the day and twice in the night. This increased to 14 times the following day. I was constantly up and down, often with the Johnny Cash classic “Ring of Fire” playing in my head, as some of those trips burned, burned, burned.
Even so, this was an improvement on the days in hospital following my internal pouch creation (also referred to as a “takedown”). My most distinct memory is when my mum came to see me and I was yet to have my first bowel movement.
It would have been my first proper poo in five months, but my system hadn’t kicked in yet and as a result, I wasn’t feeling so good. Everything was getting backed up, and I was quite nauseous. I knew I was about to be sick, but the man visiting the woman next to me had taken my sick bowl from my table, thinking it was hers, so I had nowhere to aim and not enough time or energy to get to the bathroom.
I threw up on everything. But since I had barely eaten, it was pure green bile that covered me, my nightie, my dressing gown, my bedsheets, and anything else unfortunate enough to be in front of me. As my mum helped me get cleaned up and the nurse sorted out my bed, I was at my lowest.
What had I done? This was optional surgery. I hadn’t needed to go through with it. I could have kept my colostomy bag and we could have lived quite happily together. The nurse said if I didn’t start keeping food down and visit the toilet, I would have to be fed through a tube. What had I done to myself?
Luckily, things started to improve very quickly. I began keeping food down, I visited the toilet, and I was able to get home a day or two later. Of course, when I went from not pooing at all to going 13 times a day, I didn’t feel that much better. But although that number increased to 14 the next day, it suddenly dropped to nine, with no night-time visit. Then eight with one at night, for the next five days and nights.
Then seven, eight, seven, eight. One miraculous day in late January, I was down to five trips. From 11th February the number was seven with no night-time visits, and it stayed that way for 25 days until I finally stopped keeping track. For years, my consultant would ask how often I went to the toilet, and I would say between five and seven, with some uncertainty. Nowadays I don’t even notice how often I go, and nobody asks.
It’s been eleven years since my internal pouch was formed, and we’re still getting along swimmingly. It does work in mysterious ways, though. For example, it used to be that if my partner and I ate something spicy, it would move through my system very quickly and the spicy output I experienced just a few hours later would be a helpful warning to him of what he could expect from his own bowels the next day.
But while some days certain foods might give me wind and do an impression of a fireball on their way out, or make my output more runny, eating exactly the same thing another day may have no negative effects whatsoever. For some people what they eat and how it affects them are nicely predictable but my pouch is far less orderly, so I just eat whatever I want and deal with it.
Living with an internal pouch doesn’t affect me too much most of the time. I still like to scope out where the toilets are if I go somewhere new, and if I go to the toilet in public I get embarrassed about my pouch being noisy while others are around. Contrary to the idea of girls always going to the toilet together, I would much rather visit alone.
The most lady-like thing about me is that I don’t fart in public, or really ever. I like to think it makes me very prim and proper, but really it’s partly because my pouch is windy enough when I go to the toilet that it expels all the air then instead, and partly because if I tried to fart there might be some dangerous follow-through. It also means that when I do (safely) fart, it’s often unexpected and gives me child-like glee, as it’s so rare. To fart like a normal person is truly an event and source of amusement for me.
Aside from that, though it was a rocky start I’m able to lead a normal life with my internal pouch. I’m so grateful to my surgeon for giving me my stoma to get rid of my bowel cancer, and for performing the reversal that has worked so well for me so far.