How to Prepare for Life without an Ileocecal Valve

My major tumor that was surgically removed in May of 2025 included short sections of both the small and large intestines and the valve. The surgeon explained that without the valve, it was possible for the small intestine to dump its contents into the large intestine without notice. That has not happened in the 15 months following surgery, and bowel movements have been better than ever in my adult life. The urologist I had, a man never given to compliments, watched the entire operation and said it was the most artful procedure he'd ever seen and a spectacular success. I loudly applaud the 32-year-old surgeon for his skills and talents.

I realize I am still a newcomer in the NET medical journey and that the situation can change rapidly, but 15 months of not only trouble-free, but applaudable performance is appreciated. Good news should be shared as often as possible.

After my surgery bypass, parts of colon/appendix and I don't know what all in that area removed as well as ileocecal valve, I dealt with diarrhea, major weight loss, and malnutrition due to malabsorbtion for months. My challenge was to try to detect whether side effects from surgery, NETS, or something else was at issue. A nutritionlist with the cancer treatment center I'm with helped me understand how the loss of ileocecal valve and a bypass in this area affected my digestion. I highly recommend meeting with one. I knew from my surgical team that digestion would move fast and I would have a lot of bowel movements. I found I had to eat a lot and have more calories to sustain my weight. I didn't know how long it would take for my weight to stabilize with the calories I was taking in. Finally, it's stabilizing. Nutritionist has helped emensely. Recommending a list of vitamins (never took them in my life) but found my hair, skin, nails strengthing. They work! I have had high calorie nutritionally drinks, and she explained to me that I needed a bile acid sequestrant. (Wish I would have known that from day one.) I'm not a doctor but my understanding is when we have fat, our livers give off bile to digest and this valve helps keep the food in the small intestine longer where the bile is recycled. Without the valve, all that bile goes directly into the large intestine where it pulls water out of the body and makes my stool watery. The nutritionist not only explained things to me, but made recommendations to my medical oncologist. He immediately implemented them. Had blood work to watch many vitamin levels - B12, A, Zink, Ds, and I'm on a RX of cholestyramine. I'm 9 mos. post surgery and am doing great! My weight has stabilized. I look great, have energy - I'm back to work. My understanding is that I will always need to have nutrition checked. You may not have these issues (pray not) and each of us are different, but this is my story. Hope it helps should you experience similar.

@jerrydanhuffman I applaud your good fortune. 15 months is nothing to sneeze at.

I find your surgeon's explanation really interesting. It sounds like he is a man of great skill. I believe that's what's needed.

May your good luck continue!

@tonibowman Thank you for sharing your experience. I have a call in to Mayo, partly to ask if I can talk to a dietician before the surgery so I have an idea which foods to buy for post-op. I am not a large person and I am concerned that will be hard for me to get enough nutrition to make up for the fact that it won't be held in by the valve sphincter. I can easily see myself getting quite underweight or malnourished. It's already kind of difficult because I'm allergic to many foods. And, yes, I've made note of the bile acid tendency.

How wonderful that you have found a combo that works for you and you feel good and have energy. Thank you for sharing the secrets to your success!

All the best to you!

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@taly
The surgeon was also a compassionate and very personable human. Shortly after my surgery the hospital and my insurance company got at odds over network issues, and I was forced to change hospitals and start all over with physicians. It is sad that that one relationship had to end. I valued him for his professional skills and for his human approach.

Thank you for your kind comments and good wishes.

@jerrydanhuffman It's a shame to lose someone of such excellence. Hopefully you'll find more like him!

I have missed him for over a year, often wonder how he is and realize that we will probably never cross paths again. Comfort comes from knowing that he is performing excellence for someone else's medical problems.

My experience is similar to tonibowman’s. I have been dealing with it for 11 years and learning what I can do and can’t has been trial and error. I can’t hardly deal with any sugar. I try to stay with protein and pasta in the form of spaghetti. I do not eat or drink anything when I travel until I reach my destination. And wherever I go I always scout out where the restrooms are. My weight has stabilized at 125 and stays there and I am 6’2”—but I can still function well, do everything I used to do except not lift anything very heavy. I take vitamins and I know I don’t absorb everything I wish I would from my food. Fats can give me moderate problems but nothing like sugar. What I don’t do is drink any sodas, commercially prepared fruit juices which all have sugar and no alcohol and no dairy drinks or even dairy. Have I had bathroom “accidents,” in these years—yes. But I manage. My bloodwork numbers are good but I do take iron daily as I eat little red meat (only very lean), basically eggs, chicken, salmon—protein is the name of the game. I drink one cup of coffee in the morning but not if I am going to travel and the rest of the day water but not a full glass all at once especially if the water is cold. I have tried all the things suggested to gain weight over the years including guidelines given by nutritionists but for one thing almost all the weight gaining drinks have sugar and often a lot of it. You can check it out. Everyone is different but not having that valve and also having a bit of your intestines removed sort of fixes things. As I mentioned at the beginning this has been for eleven years.
Oh one thing I do is I always have a travel bag with a change of clothes, toilet paper, baby wipes towels when I travel in case of an “accident”. I heartily suggest that. Having a bowel movement when you haven’t quite made it to a rest room is not a fun experience. Good luck to all who lose that valve.

@jerrydanhuffman It is so special to develop such a close and trusting relationship with a doctor. I have had this on rare occasions with a doctor or someone else in a helping profession. Sometimes I have been moved to write a personal letter to them telling them of my feelings and the difference they made in my life. I live in a small enough town that I have, on a few occasions, run into one after that and they've remarked how much they appreciated knowing. They seem often to be humble people, those truly special ones.