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.
Before my surgery I’d read a bit about phantom rectal pain. It’s just like phantom limb pain, where your brain thinks there’s a limb (or colon) there, but there’s nothing really there.
Joanna Burgess gave a CRCWebinar “
If you’re soon to go to the hospital for your surgery, I’d like to pass along a tip I learned from my local ostomy nurse. Throughout your stay, a nurse will visit to help you learn about your ostomy and give advice on how to empty and change your appliance. Some are quite good and others, not so much (but that’s for another post!). When they visit, they always have supplies with them, and they will often leave them in your room to examine and get familiar with. If possible, TAKE THESE. Have your friends or family accidentally remove them from your room. The ostomy nurse SHOULD have all your supply management arranged before you go home, but there can be hiccups, and delays are critical in your first couple of weeks. That’s why it’s a good idea to have some extra supplies taken from the hospital, if you can get your hands on them. I had an especially nice nurse that gathered a bag of supplies for me, and it was greatly appreciated when my supplies were held up about three weeks. Don’t be afraid to ask!
If you’re preparing for surgery, or just recently had it, you know that you’ll probably have Home Health Aids for at least a couple of weeks. Their role is to make sure you’re doing well after surgery and help with your first few pouch changes. But not all “nurses” from Home Health agencies are actually qualified. I learned this the hard way. My Home Health nurse had never seen an ostomy. It was my first pouch change since coming home, and I was expecting him (yes, “him” was a surprise, too) to help me out. But he made things much worse, by not allowing my skin to dry thoroughly before applying the new pouch, and I had a wicked blow-out a couple of hours later. Not to mention, it was the beginning of some serious skin breakdown until I was able to get it all figured out.