A couple of years back I had been enjoying a day at an outdoor event. It was a beautiful sunny day and there was live music, BBQ and even a bouncy house for the kids. Being outdoors sounds fun, but it’s not that simple for me. I need aware of my surroundings … like how far I’m going to sit from the bathroom. Since I was sitting a bit further from the bathroom that day I wasn’t drinking quite as much Gatorade as I normally would (mistake #1). I always try to be conscious about keeping out of the sun and make an effort to stay in a shaded or semi-shaded area (mistake #2 spending too much time in the heat). It was honestly a long day for me and I didn’t eat frequent enough, drink enough and spent far too much time in the sun that day (mistake #3 not eating or drinking frequently). It’s important to know our bodies and our limitations after all we know our bodies the best and we are therefore our own best advocates.
Later that evening I knew something was off when my hands and fingers started to cramp up, I was sweating profusely I felt twitchy and began slurring my words. I honestly thought I was having a stroke. Thank God for the response of the EMT and the rapid help I received in the ER. They immediately started an IV drip to treat me for dehydration and electrolyte imbalance.
I’ve said this before, but it is so important so I’ll say it again from my experience having an ileostomy means its important to eat small meals and drink frequently throughout the day as the ileostomy never stops working so you can easily become dehydrated and have an electrolyte imbalance. This can also cause malnutrition due to lack of absorption of nutrients.
From my experience the ileostomy waste output (everyone’s body is different) is more liquid then the paste consistency compared to when I had a colostomy. I’ve learned the hard way that I have to be very careful and make sure I’m getting enough fluids throughout the day so that my ostomy will work properly. In order to get the necessary nutrients I would lack from not being able to eat all of the nutritious vegetables and fruit recommended by most doctors I take 1-3 Ensure Plus a day to keep my weight up and to get the nutrition I can’t digest in my food intake. I also drink plenty of Gatorade to replenish electrolytes lost from having an ileostomy. Electrolyte imbalance can include loss of appetite, drowsiness, abdominal cramps and faint feelings. Remember seek medical help immediately if you are experiencing any of these symptoms! While most people drink 8 glasses of water a day but I aim for 10+ glasses of fluids a day. Since my ileostomy has such a high output I need to take an extra serving of salt to put back all that is lost from the fluid out-put of an ileostomy. For quite a while in addition to table salt I had to take salt tablets. Consult your physician about the proper amount your body requires.
Getting the nutrition our bodies need
Some of the most nutritional foods that are good for most people (vegetables, fruit, fiber…) cannot be easily digested by many people with ileostomy though all cases are different. I can eat a few veggies carrots, a little broccoli, acorn squash, green beans if overcooked it helps digestion and I still will put them in the blender (Magic Bullet Blender is my favorite) and puree. Fruits are very limited too but often I will dice up strawberries, blueberries, very small piece of banana and add non-fat plain yogurt and puree in the bullet blender. I love water melon and citrus fruit so I make sure to enjoy the juice without the fiber of the pulp. I use the juicer and enjoy my carrot and apple juicers. Where there’s a will there’s a way!
Taking pills are difficult too because even a pill can cause a blockage in the stoma so I have to crush all of the medications I take. I also use plenty of extra virgin olive oil (aka “Liquid Gold”) on my food to help with digestion. I learned this tip recently online from other ostomates at ‘ostomy secrets newsletter’ taking 100% Coconut Water when you feel a blockage coming on will open up the ostomy and prevent blockage. This is so amazing not only does Coconut Water have amazing health benefits (hydrates, cools, fights virus, boost immune, balance ph..) but it so effective for avoiding blockages. And remember to chew, chew and chew again all of your food.
Finally, My Short List of Things I can’t digest
• roughage and bulk (lettuce and most greens)
• beans, nuts, corn
• onions, olives
• carbonated drinks
• spicy and fried foods
• fiber & whole grains (including cereal which is full of fiber)
Please discuss any diet or nutrition concerns with your doctor.
Luv and Blessings, Dee Dee
Disclaimer: This is an inspirational blog including a combination of my health & personal stories, your (guest) stories, and our lives. My blog is for entertainment purposes only not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. I am not providing medical, legal or other professional advice.