Offering Encouragement and Support for all Ostomates

Category: Surgery

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, 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.

Phantom Rectal Pain – Yes! It’s a real thing

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.

You can find multiple articles in PubMed/NIH studies that explore this phenomenon.  It’s 18 months since my surgery and I still experience this almost every day, usually after I brush my teeth in the morning. It’s a very stubborn habit! For me, with an ileostomy, it’s an easy thing to resolve – I just sit on the toilet and pee. I can actually fool my mind into thinking it’s actually doing something and the feeling goes away. If you have a colostomy, I see from the NIH studies that you can have some odd bowel sensations if you irrigate your stoma. It appears that all these feeling will resolve with time, but it hasn’t yet happened with me.

Another strange affect for me is the sensation of actually having a bowel movement. That occasionally happens to me at night when I’m dreaming. So weird!!  But even in my dreams I remember there’s no colon there and I start laughing about it. So far I can honestly say I don’t mind NOT pooping or farting!

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 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.

Top Five Issues You Might Face at Home

Joanna Burgess gave a CRCWebinar “All Things Ostomy” this past week (February, 2017). I thought there was a lot of good information here and wanted to share the link for the webinar and highlight the Top Five Issues Patients Face at Home.

Presented through Fight Colorectal Cancer, Joanna is a WOCN, (Wound, Ostomy, Continence) nurse, and she has a unique perspective from living with her own ostomy. The Webinar includes practical tips for preparing for surgery, diet and nutrition, and more.

Of the Top Five Issues noted, my personal experience is much more positive. I’ve had some peristomal skin breakdown, and it can be annoying and difficult to control. But with patience and support from a WOCN, a solution can almost always be found to get it under control. Once you get that handled, the incidence of pouch leakage often greatly improves. I have had changes in my body shape that have caught me off-guard and led to unexpected leakage, but once I understood what was causing the leak I was able to get a handle on it in just a few pouch changes.

I have never had a problem with odor, and I think this is a fear based on pouches in the past. Newer pouches handle odor quite well.

You will be limited in your activities, especially right after surgery, so I recommend finding a good physical therapist to help you regain strength and mobility. Once you recover you should be good to go, and not limited in doing the things you enjoy.

Depression and anxiety are normal. I remember one particular day of sadness when I was in a busy shopping area and, while looking at all the people around me, realized that they all had colons, and I didn’t. I felt a profound sense of loss at that moment, and that lasted the whole day. And I confess to a constant, underlying sense of anxiety when I leave home. I ALWAYS have my emergency kit with me, and actually had to use it in an airport restroom. But it doesn’t stop me. Knowing that I’m prepared makes me more confident. And understanding the alternative to my ostomy, frankly, makes me happy to have it.


Supplies from the hospital

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!


All Nurses are Not the Same

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.

In Colorado there is a Class-A rating for those Home Health groups that can provide qualified nursing staff for ostomates. Before signing up for your nursing needs, ask the agency if they will take Medicare (not all of them do) and if they have qualified nursing staff for your needs. A couple of phone calls could save you lots of stress.

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