Over the past month, I’ve enjoying working with the planning committee for this year’s Seattle Walk to End Colon Cancer. Although the walk will be happening in October, we’re already actively preparing for it. As part of these efforts, I was interviewed in a radio spot that aired this morning on Northwest News Radio.
I’ll be there at the game with other members of the planning committee, helping pass out materials at the booth. Hope to see others there! Buy your tickets before Mar 28.
Over the past week, I’ve been incorporating more and more healthy food into my diet — all via the magic of a blender. My morning smoothies now include apple (peeled), baby greens (kale, chard, spinach), and nuts (walnuts, cashews) in addition to things I’d been including already — protein powder, avocado, bananas. For non-breakfast eats, I’ve been blending up soups with lentils, beans, broccoli, and other vegetables.
Now granted, there has been more than once when I’ve looked at my blended concoctions and note the uncanny resemblance to baby food. I’m basically making a version of baby food for myself, every day. So be it! Blended or no, the fresh greens and nuts are powerful nutrient sources, and I feel much better better after consuming these things. In terms of overall energy level and physical vitality, it’s like a switch from black & white TV, to color TV.
My cousin Kelly will be starting chemo soon, and we’re meeting up this evening so I can bestow upon her the icing kit that I used with many of my own chemo infusions, last year. We discussed meeting up for dinner, and I realized I had a conundrum: is there a local restaurant I can actually eat at, given my current restrictive diet? My go-to is always Asian food (Thai, Japanese), but I can’t eat vegetables, or peanuts, or virtually anything else that is healthy …
After puzzling over this quite a bit, exploring (and then striking out) many options, I sent a message to my care team at Fred Hutch, asking if they had any advice on this. I was happy to hear that they are ok with me beginning to expand my diet, at this point. They explained:
First, you can now advance your diet to include more fiber slowly as tolerated over the course of a couple weeks. The goal here is to introduce fiber one food at a time, chewing well.
Second, you can think about the shape/size of the food to assess the blockage risk. If it is a large chunk, it should be well cooked and/or well chewed.
Third, focusing on soluble fiber first is best as soluble fiber dissolves in water and doesn’t cause bulk, but you can start introducing all kinds of fiber one at a time.
Cool! I am happy about this. Still, however, I wasn’t sure about a restaurant. I was considering Indian food, maybe somewhere where I can get dal or something like that, but it seems like my initial experiment with new dietary options should be at home. Kelly and I have solved this issue by settling on meeting up a dessert place. That’s easier for me — it’s strange but true: less healthy, more processed foods = easier to do with an ileostomy.
But hey, I am very, very ready to move back towards a healthy diet. I mean look what I was doing, back on the morning of my first chemo infusion last summer — an insanely healthy smoothie with chard, kale, various berries .. gotta get back on that train, as this is a key part of the lifestyle to keep my cancer-free, moving forward. So my first venture into healthier eating involves a lentil soup, that I made last night. It includes:
Important to note, after cooking up this soup, I thoroughly pureed it in the blender, to reduce risk of any issues from the lentils. Had this for lunch today (combined with some white rice), and it’s tasty!
I’m realizing a blender is like your best friend, if you’re looking to eat healthy with an ileostomy. Next, I’m planning on starting to incorporate some greens (baby kale) into my smoothies and see how that goes.
I am currently an ostomate: someone who has an ostomy. My particular type of ostomy is an ileostomy: in the surgery that occurred exactly one month ago today, part of my small intestine, aka ileum, was brought outside (near my belly button), forming an opening called a stoma. Since most of my rectum had to be removed, to rid me of cancer, I now rely on the stoma to excrete my solid waste (which actually isn’t totally solid yet, when it’s in the small intestine). So, I need to always have an ostomy pouch to collect all the “output,” as it’s referred to. I’m going to refrain from posting photos of my stoma and pouch here — I still have several residual scars from the surgery and it just doesn’t look pretty. Instead, here are some generic images.
The stoma is a trip. I’ll always remember the first time I saw it, while I was in the hospital, and a stoma nurse assisted with my first “bag change” (every 3 days, the ileostomy pouch is removed, discarded, and replaced with a new one). It’s like this little pink alien being down there, moving around in its mysterious dance of peristalsis.
Emptying the bag isn’t too bad; you just definitely don’t want it to get too full, or the adhesive seal will start to come undone, which then leads to a messy situation. That happened to me just one time, early on, in the hospital, and I learned my lesson from that. Also, I’m finding you need to embrace loose, high-waisted pants with an ostomy bag. I’m still actually figuring out the clothes thing — I just ordered some special ostomy underwear from Ostomysecrets® (yeah … I know). I’m curious to see if that helps make things more comfortable.
The bag change, which occurs every three days, is a fairly complex procedure. I found early on that you need to do it first thing in the morning, when nothing is coming out of the stoma. You do NOT want any output coming out of the stoma, as you’re doing the bag change. The cute little stoma dance turns into a nightmarish volcanic spectacle … enough said. After removing the old bag, you need to carefully clean all the skin around the stoma. An important step is thoroughly removing the adhesive residue — you do this with a special adhesive remover product.
There are, by the way, all manner of products for ostomy patients. I’ve gotten multiple calls from a popular ostomy product manufacturer; they sent me a gift box of samples and everything. Makes sense — if someone is an ostomate for life, there’s quite a compelling customer lifetime value to capture. Now, the plan is that for me particularly, there isn’t an entire lifetime of revenue that ostomy manufacturers will extract from me, but just a mere three-four months. At that time, the ostomy is supposed to be reversed (scheduling and details still tbd).
Few more notes about the bag change process — after you thoroughly clean the skin, you may need to apply ostomy powder (like diaper powder) on the skin if it’s irritated at all. And then a special product on top of that. And then, you measure the stoma, and you carefully cut out a ring in the adhesive of the new pouch — it needs to be just the right size. This requires special curved precision scissors. And then, you fit the new pouch onto that. There is this additional “caulking” material you can apply, to really get it to adhere .. I generally use that, as well. The whole process takes me around 30 – 40 minutes, including prep.
The real challenge for me is the diet; I need to follow a very restrictive low-fiber diet. It’s unfortunately not a very healthy diet. No fresh vegetables are allowed, at all. Very few fresh fruits are allowed, with the exception of bananas. Anything with seeds (e.g. berries) or peels (tomatoes) are a definite no-no. So I end up eating almost the same thing every day: bagels with creamy peanut butter, bananas, non-dairy yogurt (vanilla only), oatmeal, avocados. It’s this sad irony that I am not able to eat most of the highly-touted cancer-fighting foods right now, like blueberries, walnuts, etc. The dietary restrictions are my least favorite part of the ileostomy experience, but I get the reasoning behind them: you need to avoid anything that might cause a stoma blockage.
Alright, well maybe you’ve learned a thing or two about ileostomies from this post! Feel free to ask me questions if you’re curious about any of this stuff.
foiblish 