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Category: Food/Nutrition

What to eat? How to eat? with an ileo

Awww, Go Ahead….You Can Eat Whatever You Want

Awww, Go Ahead….You Can Eat Whatever You Want

Well, Maybe……

If, like me, you’ve suffered from Ulcerative Colitis (UC), you’ve tried every diet and supplement known to man.** UC is such an insidious disease and it logically makes sense that since it involves only your colon that your diet should make a difference. Research today is focusing on the microbiome, and I have participated in the American Gut Project through the University of San Diego. I received my report that broke down my personal microbiome and it is incredibly detailed. But there’s so much data being discovered that researchers don’t yet know how to interpret the data.

So it’s with a great deal of relief that once my colon was removed I was told I could eat whatever I wanted. In fact, that was the message the very day after my surgery! OK, while in the hospital they kept me on a low-residue diet while I was healing, but after that I was free to plunge ahead in the food aisles.

But wait. I’d done my homework and studied the Diet and Nutrition Guidelines from Ostomy.org, and I knew that it was important NOT to just eat anything and to introduce foods gradually. I kept on a low residue diet probably longer than I needed to (about six months) and then started very slowly with mushy vegetables and iceberg lettuce. Since then I’ve gotten comfortable with not-so-mushy, but cooked, veggies, more fruits (minus skins, for example, apples and peaches), and whole grain breads. I still avoid whole kernel corn, fresh veggies and greens, mushrooms, nuts and some whole beans. These items are a small price to pay to avoid any problems with a blockage.

Everyone is different, and when I’m asked about foods when I meet with patients in the hospital, I tell them it’s important to pay attention to your own body, but don’t push it. I always refer them to the Diet and Nutrition Guidelines because I think they are a good, reasonable resource.

*And now for my own personal perspective on food and UC. I know my observations are not shared by everyone, but if you truly have UC, I feel that food doesn’t really make a difference.  Yes, there are lots of stories about diets (specifically the SCD diet) that have helped people get into “remission”, but I feel that remission has different meanings for different people. Does it mean you’re only on the toilet 6-7 times a day, instead of 20-30? Does it mean that you’re no longer bleeding, but you can live with the mucus? Does it mean you no longer have any pain, but maybe all your other symptoms? Does it mean you can get up at 6:00 in the morning, and no longer have to plan your day after 10:00 am? If your “diet” improves your symptoms enough for you to compromise your feelings about all your other symptoms, and you can live with them, then that’s great. But I don’t think diet alone will take away UC.

Blockages are just no fun!

Blockages are just no fun!

About two months after my surgery I had a small blockage. Although I didn’t see that much change in output, I had some pain and just the general sense that something wasn’t quite right. I called my GI doc and she told me to stop eating food, but to drink high-sugary drinks, and specifically Coca-Cola. Permission to drink a Coke with no guilt! After a couple of hours I was feeling much better, but held off on food that whole day, just to be safe.

My surgeon told me that I could eat anything I wanted just after my surgery, and I’ve heard that from other patients, too. I guess you can…but be smart. If you have an ileostomy you could have a lot of swelling after surgery, so I always refer to the Diet and Nutrition Guide at Ostomy.org. This is a common sense guide to follow, and won’t get you into any problems. (By the way, I love the graphic in this guide that shows where nutrients are absorbed in the small intestine). I’m still quite careful, even tho I now eat most cooked vegetables.  I still avoid raw vegees, black beans, whole kernel corn, nuts and mushrooms.

Earlier this month, Shield Healthcare posted a great video on this topic, featuring their Lifestyle Specialist, Laura Cox. Laura is great, and all her videos are useful and simple to understand. It was a very early video of a younger Laura changing her pouch, with a good sense of humor, that convinced me that life with a bag wouldn’t be so bad.

Marshmallows Could Be Your Secret Weapon

Marshmallows Could Be Your Secret Weapon

At our monthly ostomy support group meeting yesterday the question was raised about marshmallows. There are anecdotal sayings that eating marshmallows will slow down your output – useful if you need to change your appliance when least expected, or when you’re visiting the doctor or ostomy nurse. I can say for sure, YES! Eating marshmallow can be quite helpful!

When visiting my ostomy nurse after my surgery, I would take 4-5 marshmallows (the large ones) with me to the appointment. I would eat them while in the waiting room, so I usually had about ten minutes to wait while they digested. Then there’s the added time talking to the nurse about what my issues were, and the time to remove my current wafer. By then, my output had sometimes completely stopped and, at least, slowed to the point that we had time to evaluate what my problems were and get a new appliance on with minimal disruption. When your stoma is over-active, it’s problematic getting that new wafer on, especially if your stoma is recessed, like mine. Usually, there was about a 20 minute window when my output was slower or stopped.

In general, it’s always good to schedule these appointments at least two hours after eating, so your output is a little slower anyway. Your stoma will be much more active and unpredictable in the weeks right after surgery, so the marshmallow trick may make things a little easier. I also used them in the mornings when I had a lot of skin breakdown and had to change my wafer daily until my skin healed. I’ve heard marshmallows don’t work for everyone, but they’re certainly worth a try, and taste pretty good, too!

Experiments with Food

Experiments with Food

In addition to toilets, food (and eating in general) is another of my favorite subjects. I was religious after coming home from the hospital about not eating any fiber. I had a small blockage about two months after surgery after eating a salad, and that scared me from most good foods. But I’m realizing now, one year later, that I can process more foods. I’m taking it slow and starting with mushed vegees, but I actually had some non-iceberg lettuce last night and had no problems. I’d read several blog posts saying that you really can eat more as time goes on, and now I’m starting to believe it! I start seeing a nutritionist next month and will be interested to see how much she understands about our unique dietary challenges. It’s so hard to wrap your head around our “safe” foods and still get all the nutrients we need.