Diet with an ileostomy

[paula]

Hello, everyone, any recommendation on what foods to eat and not to eat with an ileostomy and a problem with scar tissue after surgeries. I talk to my doctor about it, but its always good to know what people that might have the same issues are doing. Thank you in advance for taking the time to reply.

paula

[Diane C]

Hi Paula,

Don't have much time to post now but UOAA has put out guidance on foods to eat with a colostomy or ileostomy. Your might check ostomy.org. If you search, you'll find endless websites like this one: https://www.mayoclinic.org/tests-proced ... q-20322775 It's a situation that varies from person to person. We are all different. I have always had indigestion issue -- and still have them to my disappointment. MUCH gas. There is a very strict food plan (sort of an elimination diet) for those struggling with gas called the FODMAP food plan. https://www.ibsdiets.org/fodmap-diet/fodmap-food-list/ It's primarily for people with IBS but also for those dealing with gas and distention. Gas-X does help me but I now avoid very healthy cruciferous veggies. In fact, I no longer eat raw veggies much but others can do this. I'm definitely limiting foods that I used to eat with a colostomy or before surgery. Raw fruits don't seem to do so well -- although watermelon is ok. I'm cutting back on juices as they ca n create gas in the gut, too. More proteins, very well-cooked veggies, and I seem fine with rice, potatoes, and too many carbs! Hydration is necessary. Must drink!

I'm thinking that dairy is not great for ME so I'm now consuming lactose-free dairy products. So costly. Trying to cut it out of my diet. Some of the dairy alternatives have saturated fat (coconut milk, etc.) or I dislike them. But am experimenting.

I used to drink Kombucha or carbonated beverages. Not now. I had a stool sample (lovely) and found that my pancreas is not absorbing fats so that changes much for me. I WAS drinking a lot of caffeinated tea and my (very good) GI doc told me to cut out the caffeine which can cause diarrhea. I hope others pipe up.

As far as scar tissue, I have MUCH of that. Have had FOUR open abdominal surgeries since 2000. When I went to my physical last week, a wonderful nurse practitioner wrote me a prescription for manual manipulation or massage of my abdomen (only ok once a patient has healed from surgery). I'll be going to the hospital's PT department in a couple of weeks but it has to be done more regularly to "break up" the scar tissue and adhesions if possible. I may go to a different physical therapist for this. Some people get a lot of scar tissue -- others do not. I always have slight pain in my left lower quadrant and thought the ileostomy would solve that. The nurse practitioner lightly kneaded my abdomen and told me she felt the scar tissue there. With a prescription, the massages may be covered. There is much on the web.

I am NOT endorsing these practitioners (many ads!) but here's one article: https://www.usatoday.com/story/news/hea ... /32058923/

I read that certain yoga positions and exercises can help, too. I had acupuncture a year ago for external scars and the practitioner worked wonders but now has heart issues. So that's a possibility.

In 2006, I had back surgery and massage was an integral part of healing. Very soon after I healed, I went to a PT who massaged my back and also applied electronic stimulation to prevent scar tissue from forming. I don't know why ostomy surgeons don't recommend it. The abdomen is more sensitive perhaps and one has to have special knowledge not to create problems but I wish I'd done this sooner.

Hope someone else posts and you find some good info!

[paula]

Hello,Diane, hope you are doing well, and thanks so much for replying to my post once again. I will be researching those sites you mentioned. I am already doing the scar tissue massage with a therapist, once a month, and I myself do it periodically. I also do yoga, stretching, all of course with a lot of care. I also cannot eat raw fruit, I boil apples, pears, etc and they seem to be fine. Also, no raw veggies for me. I use them in soup, and eat a bowl at lunchtime and dinnertime, before the food. That was told to me by a surgeon. My worries with certain foods is also getting nauseous, which I think you've seen by my posts landed me in the hospital several times, before my two surgeries last year, and already twice after that. My last time was in March.

Also, have you tried probiotics? Ive been told by some, that they are very good for all digestive problems. If so, do you have a brand?

Again, thanks for taking the time to answer. I truly appreciate it. Its nice to talk to someone about all these things.

paula

[JackieRose]

Dear Paula,
My surgeon told me to eat anything I wanted to eat! That was a challenge, since I was anorexic. I chose beer and nuts.
Best,
JackieRose

[JackieRose]

Actually, Paula, I've thought about this much more than my glib comments above would indicate and I do have some rules, some general rules about diet:

The first rule is to listen to your stoma. It will tell you if it's happy or not. If it makes noise, stop and listen. Does it want water or are you eating too fast or too much? If you feel pain, stop eating and rest or take a walk.

The second rule is more difficult. Proceed with caution:

Barring allergies, you can basically eat anything that appeals to you no matter how bizarre it might seem. The trick is to figure out what you want. After surgery and medications, our appetite is curtailed. Try to eat normally but as soon as you feel full stop. Drink plenty of liquids. Don't be afraid. If you get blockage, don't panic but follow the rules outlined on this site. It's good to read the recommendations outlined above but bear in mind that everybody is different and there are no rules that apply to everyone.

[paula]

Jackie Rose, thank you for your input. I do eat normal stuff, but since I have been so many times to the emergency room, due to blockages and the two surgeries due to scar tissue, sometimes i am just afraid, but I do eat normally, its just that its good to see what other people are doing, but I know that each person is different. Hope things are well with you,

Again, thank you for response.