If there’s one thing us gut-challenged peeps know, it’s that our guts are definitely challenging. I don’t purport to understand how those who have had colectomies or have ostomies, FAP (Familial Adenomatous Polyposis), or various forms of IBD (Inflammatory Bowel Disease/Crohn’s Disease/Ulcerative Colitis) manage such issues, but would like to offer my perspective as a semicolon.
You see, I was diagnosed with Stage III rectal cancer at age 34, after several years of being misdiagnosed as having hemorrhoids and IBS. Before I received adjuvant chemo to prevent recurrence after surgery, my primary treatment involved a sigmoid colectomy/low anterior resection surgery to remove the diseased part of my upper rectum and lower sigmoid colon, which contained a huge 13 cm. sessile villous adenomatous polyp. Needless to say, a good bit of my innards were resected to achieve clean, disease-free margins and spare me the need for radiation. Thank you, Butt Doc!
As if the shock of a cancer diagnosis and all that it encompasses isn’t enough, it’s quite the epiphany to realize your altered digestive system doesn’t function the way it used to. Unfortunately, many doctors don’t provide this information, leaving patients essentially clueless and trying to figure it out on their own.
It stands to reason that if a good portion of your gut is removed there are going to be issues, so it’s wise to anticipate and prepare. Following you will find some pointers for the gut-challenged which have helped this semicolon gal immensely.
With altered digestive systems comes reduced transit times. Of paramount importance to us eviscerated folk is knowing where the bathroom is. At all times. Improvise if you have to. It’s always good to carry a roll of TP in your vehicle, just in case. This approach has served me well on many occasions, especially in the early days after resection surgery when I was still undergoing chemotherapy, exacerbating my already iffy gut situation. I’m not at all loathe to admit that I had a few mishaps – this is simply the reality of the altered-gut beast.
The gut-challenge will also quickly develop a relationship with Imodium; it will be your new BFF. Like the aforementioned toilet paper, it’s always good to keep a supply of these little, green, magic pills handy. Stock up – you’ll use it often. Imodium will help slow things down immensely, and they provide a welcome intervention to visiting the throne twenty times a day. ‘Nuff said.
Addressing dietary needs and alterations gets tricky as we’re all very different in what our bodies can tolerate, but you may find that you have to rethink your diet. I know many semi or no-gut folks who subsist on vegetarian, high-fiber and clean-eating diets, with little repercussion. For many of the gut-challenged, however, learning what is “safe” to ingest is imperative. Sure, it may be good going in, but the consequences can be nothing less than disastrous once it’s there. For example, the good GI/Colorectal doctor will likely suggest fiber. Lots of it. Now, fiber has its place, I don’t dispute that. But too much fiber for this semicolon has consequences. As much as I love fruits, veggies, whole grains and all that good stuff, I simply cannot eat much of it anymore. Processed foods, within moderation, have become staples of my diet. I can eat limited amounts of vegetation and fibrous fare, but sometimes even this is too much. Water is essential, not only for adequate hydration, but because it helps keep things moving (as if our altered guts need much help with that, anyway). Which brings me to my next topic.
Chemotherapy, particularly FOLFOX (5FU/Leucovorin/Oxaliplatin) is notorious for causing peripheral neuropathy; in my case, permanent. Granted, the most noted affected areas include the hands, feet and limbs, but since this wonder-poison is administered systemically, it impacts the internal organs as well. Numerous medical publications have cited decreased bowel motility as a result of Oxaliplatin neurotoxicity, which may occur shortly after or as a late-effect long after treatment cessation. While Imodium was my best friend for many years, as of late I’ve developed what I believe may be some motility issues, and will be checking with my colorectal surgeon in the near future to ensure something more serious isn’t lurking.
Yes, being a semi-colon has its challenges. But living with these challenges brings with it a blessing: I am NED (no evidence of disease) and cured of my rectal cancer. For that, I am immensely grateful, as many with this disease, sadly, will never have the opportunity to learn to navigate these challenges long-term. And many of my fellow-gut challenged endure far greater and still kick ass and face the world head on to bring awareness and positively impact lives – I am fortunate to know them. And that, my friends, makes the challenges well worth the adventure.