On a walk the other week with my children’s dad I realised I needed to empty my stoma and we were in the middle of the moors and there were no bins for miles; for me to empty into a disposable bag and pop it in. So obviously I had to empty off the beaten track which is not my favourite thing to do but I was more shocked at what he said to me when I told him I needed to empty. The man who was there when I was ill before my surgery; that listened to me talk about all the pros and cons, and knows more than the average person about stomas said to me “Why didn’t you just go before we left?”
I just looked at him absolute dumbfounded because firstly I am not one of his children and that is something you say to kids, and secondly unless I was needing a wee then his comment would make sense. I was like erm yes that does not work remember. He did not really say anything maybe because that would mean admitting he did not think about what he said or the fact it did not enter his head that my output has a mind of its own! Of course, we have not been living together for the past 10 months but surely, he cannot have forgotten the past 5 years of our lives together with me living with a stoma.
Sure, you may get some level of control if you eat at certain times or eat the same thing every time which means you know how long it takes for certain foods to pass through your intestines. However, with me I eat different things every day and at various times, so I have truly little idea even after 6 years of having my stoma! I truly envy those ostomates I really do!
That morning I had been to work and then bought the both of us a breakfast sandwich from the local bakery. My thinking was even though I do not know exact times or anything close to them I thought meat and starchy carbs will take longer to go through my system and I emptied what little was in my bag at work! Of course, that did not really help now, did it?
I find my stoma quite irritating at times not due to the stoma itself but because I have hypermobile Ehlers-Danlos Syndrome I am more likely to pancake as I used to have chronic constipation, which is another reason, they did not diagnose my ulcerative colitis for such a long time after symptoms started as it is not common as most people suffer with diarrhoea. So having thick output can be painful as it exits, or it can feel heavy as it builds up in my bag. The last thing I want on a walk is for it to suddenly decided to pump out tons and then my bag go POP! I can go on walks or hikes for a few hours and my bag does not feel too full or too much of an issue but then others it becomes overactive and just a pain in my out of order ass!
It has been a few weeks now and I still just think how ridiculous him comment was; it was like he was thinking I could just go to the toilet in the morning, and I would be good for hours. Even when I had my j-pouch that was not an option for me let alone when I had a colon! Granted like I said I had constipation when I still had my colon, but I still felt like I needed to go I would just sit there for ages crying as nothing would come out. My parents often found me asleep on the toilet just hoping to pass something other than blood.
I would like to think that if his brain were going faster than his mouth, he would not make such silly comment but who knows right? We are all prone to the occasional ‘duh!’ moments now and then I guess. Have you ever had someone who really should know better say something utterly ridiculous regarding your stoma or illness? Or have you said something and then thought ‘did I just say that?’ about yourself or others? Do you have any tried and tested tips that help you manage your output?