How to Prepare for Life without an Ileocecal Valve

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.

@annamay
i can't handle dairy also except for cottage cheese-if you haven't tested it, maybe try it. it is a decent calcium source but check the brand you buy. It varies a bit.

@jerrydanhuffman I'm sure those doctors appreciate your positive feedback. From what I hear, that is in short supply. I imagine it's unrewarding for the providers, as well as the patients, that the more personal relationships have largely gone by the wayside. I certainly feel grateful every time I see real caring and interest expressed. Thanks to them and thanks to everyone here who cares enough to share their experiences for the benefit of others!

I am so sorry you are going through this. As I have a ton of medication I take dailly, I keep all of it in a travel bag that comes with me everywhere. I take it on planes when necessary and keep it beside me on a road trip--not that I travel often anymore. Because we can be put on pain medication and other controlled substances, it can be nearly impossible to get them replaced if we lose them. Take something with you that you like to do. I paint so I used to take coloring books and colored pencils when there was too much alone time.

I'm 60 years old and had my neuroendocrine tumor removed at my Ilium about 5 years ago and began lanreotide injections noy long after to control liver metastases. I'm vegan and I'm also anemic. My experience has been mostly positive until recently. In the last 9 months I've lost 19 pounds due to malabsorption of nutrients due to lanreotide. I'm also experiencing higher than normal fasting glucose readings but my non-fasting glucose is in the normal range. I supplement to make sure I'm getting enough iron and other vitamins. I would recommend reading as much as possible to learn about your specific situation. I think it helps you to raise good questions to your oncologist and your dietitian. While they are both very knowledgeable they are not familiar with every situation and may not be aware of relevant issues. Pay particular attention to the glycemic load that exists in your food. I didn't realize until recently that blood sugar can become an issue for those on lanreotide. I used to eat a lot more pasta but have realized that was problematic for my blood sugar.

I'm wondering how soon post op I might be able to get off Rx painkillers. I'm hoping maybe 6 or 7 days. Does that seem realistic after removing 8 inches of intestine along with the IC Valve, mesentery, nodes, and palpating the bowel (all open surgery)? By then I'll be recouping alone in a distant city and would hope to be able to drive. (Of course I understand everything can change during surgery if more tumors are found.)

Were you able to take immodium or cholestyrene or colestipol as soon as discharged and did it work satisfactorily to help the diarrhea? If you had constipaton those first days, was there anything that helped.

I'm also wondering about energy & discomfort level and will I be able to do more than toddle around the abode by day 6. Cook, drive myself to appts. What about climbing flights of stairs?

Was anyone discharged to a skilled nursing or rehab unit on Original Medicare and do you know how that was facilitated? I'm hearing from Mayo that is very unlikely though it seems like it would be very helpful for someone recovering alone.

Thank you, everyone. You have been more helpful than you can imagine!

@taly Have you look at this link yet for helpful resources for folks visiting the Arizona locations?
https://www.mayoclinic.org/patient-visitor-guide/arizona