I’d be lying if I told you I hadn’t googled “does an ileostomy cause weight loss” before googling how the procedure to divert my partially digested foods into an external bag actually works; and I’m embarrassed to say how disappointed I was with the answer to my search…
Currently I’m frightened to eat the healthy nutritious foods I love due to the high potential for complete bowel blockage and was recommended to eat a list of what are essentially my “fear foods”.
After a discussion with our team of specialists regarding chemotherapy and my already reluctant bowels, it was decided that an ileostomy was necessary and the surgery will take place on Monday morning.
So to add to the usual frightening psychological aspects of this upcoming ordeal, I have now learned that the food restrictions for freshly placed ileostomy wearers come with a whole different set of rules again and they do not gel well with my not-so-quiet-right-now eating disorder.
I legitimately love vegetables and fruits more than processed foods which is generally a healthy bonus. But there were times in my life where they were the only foods allowed to cross my lips and even then I may have rigidly exercised for hours just to try and rid my body of the almost negative calories held in a single slice of cucumber.
Learning to start accepting my psychological issues as challenges caused by accumulated traumas and difficult experiences rather than simply evidence of personal weakness and stupidity has helped rather a lot in all aspects of life, but particularly with overcoming the eating disorder mindset that has haunted me since childhood.
Getting over an utterly ridiculous paranoid fear that there was somehow a government led conspiracy to hide the ‘fact’ there were calories in both water and air can take one rather a lot of time, and yet decades on there are seeds of doubt that somehow continue to fester in the darkest corners of your mind no matter how much you intellectually understand about nutrition, Anorexia & psychosis.
Unfortunately, control (or rather feeling a lack of it) is one of the biggest reasons my food issues started in the first place and it continues to be a trigger. I am experiencing many things right now but being “in control” is not one of them.
Bowel cancer with ovarian metastasis feels like a cruel joke, not because of the “why me” factor or fear of death or even because I was finally starting work through issues and be less suicidal. No it feels cruel because the location of the cancer and the treatment options basically push the big red psychological trigger buttons of every issue my fragmented mind had ever experienced and throw any semblance of control I had out the window.
I have recently learned that my DNA carries a gene mutation called BRAF that apparently predisposes me to aggressive cancers like this and epigeneticly speaking, things like a life of extreme stress wouldn’t have helped, not to mention the physical damage from Anorexia, excessive diet soft drink consumption & binge eating and I’m pretty sure that massive overdose in 2015 could have contributed…
This time next week there will be a bag stuck to the skin on my stomach surrounding a piece of protruding small intestine that collects my “waste”.
I will never again see the abdomen I have passionately hated for so long look as good as it does right now and I’m wishing that I had spent more time appreciating it’s lack of scars and ileostomy bag rather than criticising it for being a tad flabby.
I’ve never worn a bikini without a T-shirt even at my most emaciated because I was terrified of being judged for being “fat”. Upon reflection that feels like such a waste and I’m Damn well going to take a photo of myself in a bikini after I finish writing this (something else I would NEVER have considered before) just so I can hold onto the memory and maybe find some gratitude in the future rather than memories of being “the fat girl” and then “the scarred fat girl with a bag of shit on her tummy.”
There are a ton of inspirational stoma stories online and a community of wonderful people trying to reduce ostomy stigma who are happy to help out the frightened newbies. I’m lucky in that this will probably only be temporary, they have said they’ll hopefully be able to reconnect the plumbing after the post peritonectomy chemo is all done in 6 months or so.
In the meantime it’s been suggested that I name the stoma, as this helps ease anxiety. So I’m officially taking name suggestions, please let me know in the comments and the funnier the better