How to Prepare for Life without an Ileocecal Valve

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.

@patrick031621 Many thanks for all that information! It's so heartening that some people are able to do most of what they used to. The travel bag sounds like an excellent idea and I plan to have one.

I'm well aware of the additives to many foods and drinks. I'm highly allergic to corn, so I have to check all ingredients. There are a few vegan protein powders which do not have sugar or sweetners. But are perhaps too high in fiber. I plan to eat the safest things at first and then add one at a time to see what I can tolerate. I'm very lactose intolerant, so I'm used to using lactose free dairy. I may try that eventually.

The specter of public incontinence is hard. But I also don't want to become isolated. It'll be trial and error how to deal with this. I'm so grateful for everyone's input!

@patrick031621 Many thanks for all that information! It's so heartening that some people are able to do most of what they used to. The travel bag sounds like an excellent idea and I plan to have one.

I'm well aware of the additives to many foods and drinks. I'm highly allergic to corn, so I have to check all ingredients. There are a few vegan protein powders which do not have sugar or sweetners. But are perhaps too high in fiber. I plan to eat the safest things at first and then add one at a time to see what I can tolerate. I'm very lactose intolerant, so I'm used to using lactose free dairy. I may try that eventually.

The specter of public incontinence is hard. But I also don't want to become isolated. It'll be trial and error how to deal with this. I'm so grateful for everyone's input!

@patrick031621 Many thanks for all that information! It's so heartening that some people are able to do most of what they used to. The travel bag sounds like an excellent idea and I plan to have one.

I'm well aware of the additives to many foods and drinks. I'm highly allergic to corn, so I have to check all ingredients. There are a few vegan protein powders which do not have sugar or sweetners. But are perhaps too high in fiber. I plan to eat the safest things at first and then add one at a time to see what I can tolerate. I'm very lactose intolerant, so I'm used to using lactose free dairy. I may try that eventually.

The specter of public incontinence is hard. But I also don't want to become isolated. It'll be trial and error how to deal with this. I'm so grateful for everyone's input!

@taly
This is what I do when I plan to travel any distance and in fact I did a 400 mile journey just three months ago and back repeating the plan each way.
I eat a hearty meal in the evening but not too late the day before travelling. Then the next morning I eat or drink nothing. Sometime i will have a small cup of coffee to get things started and then I make sure I basically empty my bowels. You know, go to the toilet and have a morning excretion like a lot of people do but I am patient so that I give myself time to basically have my lower intestines pretty empty. You get so you know when this occurs through experience. Then I eat or drink nothing and I do mean nothing. it would be nice to have a cup of coffee on the way but that is a No-no. I often go ten or eleven hours a day that way. my oncologist is 160 miles away and during that time I have while there bloodwork, an MRI , a Cat scan and see him and then I drive or am driven by a son back home. I eat or drink nothing all this time. Psychologically I think of it as my day to fast which is healthy and i know people used to do it for religious purposes so it isn't impossible or that hard. Mind over matter. Recently I tested it out on a journey to see my oncologist hoping things had changed perhaps. I had a Whopper. I thought things were good but a half hour later i had a fast inkling of trouble and before I could get to a restroom I had a slight "accident" and had to use what I call my "bag of tricks" to clean up in the clinic's restroom. No more experiments for me. I hope this helps you. I have had a few awful experiences this way but one has to expect it within an eleven year period. I am 80 years old now and so I have little desire now to travel except to see my oncologist.

My experience has been complicated but in general, I am able to manage the diarrhea to a few hours when I wake up but I have to be very careful with what I eat.
I had a bowel resection 2 years ago that removed a total of 3 feet of small intestine, the ileocecal valve, the ileocecal artery, and some large intestine. At first I had watery diarrhea and large amounts of fatty material. I was prescribed a bile acid sequestrate, cholestyramine. I lost the fatty stuff but developed pain and realized that cholestyramine contains sorbitol. I do not tolerate sorbitol so switched to colesevelam. I have been able to stop the colesevelam a few months ago. I started taking Imodium daily after the surgery and continue to take it but more about that later.
I continued to have pain and occasional vomiting and weight loss. The surgical oncologist nor the gastroenterologist could not find the cause until I was hospitalized with a bowel obstruction. No one had considered an obstruction as the source of my pain and weight loss. I started on a very low fiber diet (8 grams per day) and have slowly added a little more soluble fiber. It is still a low fiber diet.
My diet is complicated with food allergies and sensitivities. I am lactose intolerant but can eat aged cheddar, no wheat (except in small amounts) triggers migraines, no soy, and some other foods. So my diet is very limited but now I am able to talk walks and exercise. I have added some soluble fiber like peeled apples, avocados, sweet potatoes.
So lessons that I have learned and that may help someone is:
1. If you are taking a new medication (prescription or over the counter) and you are experiencing problems, read the ingredients. I learned that most formulations of Imodium contain lactose and now take Imodium Multi-Symptom Relief. Even the gastroenterologist did not know about the lactose. And switching from cholestyramine to colesevelam eliminated the sorbitol.
2. After surgery, I talked with 5 nutritionists and found limited help. I had to use trial and error because of my personal sensitivities. It was suggested that I take chewable vitamins (not gummies) for quicker availability in the intestines. But I don't remember any one talking about calcium. I now have osteoporosis with a high risk of spinal fracture because I do not absorb calcium from my diet or calcium supplemented foods. I now am trying powdered calcium citrate and upping my calcium intake to 1800 mg, which is 1.5 times the recommended amount.
3. The calcium citrate and higher amount of calcium had slowed the movement in my intestines and I now often can have softly formed stool. So including the soluble fibers and the calcium I am slowly gaining a pound or two so I hope that I can also absorb the calcium.
4. I am slim and did not eat a lot before surgery. I have not decided if I can eat too much food that encourages the intestines to move things through quicker. I try to think of eating nutrient dense foods and not the bulk like the rice and potatoes.
I am thankful that I am now see the medical providers at Mayo. I have complications that I feel better about having a team of experts that my location medical center was not able to handle.
Best wishes to all of you. I have struggled but keep finding new information and approaches.

I am old and probably old-fashioned, but I grew up when there was a relationship between a doctor and patient. I have interacted with numerous at two different hospital groups since showing up at the ER sixteen months ago. I can count two out of about a dozen who have made a short but positive impact on my life. I freely expressed my feelings to both of them and am completely confident that they continue to make a difference in other patients' lives. That is what they are made of. Thanks to them.