Diet Challenges with Ileostomy - Seeking Advice

Hi all,
I have an ileostomy through Crohn's; which was originally a colostomy, until it went wrong again - I've been an ostomate for five years anyway, and I still cannot digest vegetables except mashed potato (I can't even digest hash browns), and all fruit just goes through me, as well as all dairy except small amounts of block cheddar cheese. I am in remission, but this still goes on day after day, does anyone else have this problem? And if so, what do you do please? I cannot take vitamin or calcium pills, or have iron supplements, as they cause me to have epileptic fits, so I am stuck. Also, is it normal to pass out white/cream stools when nothing different has changed in the diet? My normal is varying shades of green liquid/water/froth! Thanks x

Hi, oh my, you have been through the wars. I still cannot eat with my ileostomy, so I stick to blended homemade soups (most restaurants will be very happy to warm it and serve it if you are out to dine and if you explain you have food intolerances so that you can enjoy a meal at the same time as your family/friends). I also live on clear apple juice, tea, and water.
Custards, jelly, you get the picture without me expanding more.
Your output sounds okay to me as it will change in texture and color depending on your intake.
I'm sorry to say my Ostomy nurse says I may never get back to a normal diet (except I can tolerate grilled white fish, a loose mixture of mashed potato, and also mashed carrot with salt flakes and butter. Now I'm hungry!)
I wish you good health and some relief from your problem. Lorraine.
PS I don't like to eat anything after approximately 4 pm, although there are always occasions that crop up.
God bless.

Boy, I think with the output you are describing, it would mean you need to see a colo-rectal doctor or, at the very least, a gastro... as this is not normal. I had three things removed when I had severe Crohn's disease with colitis or die, as the severe diarrhea about did me in and I lost a lot of weight. Fast forward to today. I am feeling good and doing well, but I have to be careful and eat just a little bit of something sweet (a small piece of pie or candy) and no way would I drink apple juice, as that usually goes through people, so that is something I would never consider, and fiber in very small amounts. You should go to the Crohn's/colitis site and read what people seem to do well with. I cannot eat any big meals, or I have leaks big time, and I can honestly feel if I start to overeat, so that is good. To even think you can go back to a diet like before is silly, but I think you should and could talk to a doctor about your issues and, if you can, get literature, which I am sure you can get from the hospital, on ostomies... I was given a huge pack of information and a big booklet, so that helped too, but a good doctor who knows ostomies is a must also!

I had a total colectomy due to colon cancer.

They said eat whatever I wanted, but I have found I can't eat salads, red meat, fruit, veggies, and do best with white meat or fish and potatoes or rice or pasta. I am also gluten sensitive as wheat is hard to digest.

My surgeon told me to take Imodium 2x a day and Citrucel 2x a day to normalize my poops, but that would probably not be for you.

I would avoid milk products, fruit and fruit juices, and tomato soup or sauce -- from my experience.

With regard to your eating problems. Every ostomy is not the same. Therefore, there is no "one size fits all" answer to your particular problem. I suggest you see a colo-rectal specialist or, at the very least, a WOCN (Ostomy Nurse).

I'm leaving a URL to the United Ostomy Associations of America

http://www.ostomy.org/ostomy_info/pubs/IleostomyGuide.pdf

You can check out information on their site about ileostomies.

The site above will give you just about everything you need to know about your situation.

Good luck!

Lawrence (Larry) Pilarski
The Ostomy Visitor

Bayonne Ostomy Alliance
"Lighting a Candle Amidst the Darkness"
Meeting 2nd Wed. Every Month
2 PM @ Bayonne Medical Cntr.
Web: http://goo.gl/WZsDb
Phone: 201-339-5251

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

I was diagnosed with UC at the tender age of 11. My father was retired military, so my parents took me to the Navy Hospital where I was diagnosed after an awful procto exam on this god-awful table that moved so my butt was in the air. I endured this awful exam every 2 weeks for approximately 2 years where I never saw the same doctor more than 2 times and always had these young corpsmen in the room. To make matters worse, my mother wasn't allowed in the room. I got progressively worse. I started 9th grade at 115 lbs and 5'6". I was down to 90 lbs by Thanksgiving. I remember the day of my last appointment at the Navy. I locked myself into the bathroom and told my mom if she didn't find me a real doctor, I would just go ahead and die before I'd ever go back to the base for treatment. I survived after finding the right doctor. He got my UC under control and kept me going through some pretty bad flare-ups. All this time, I was used to eating just about anything I wanted. I was told to stick to a low residue diet, which was no problem. Fast forward 15 years, I had gotten married, had 3 beautiful kids. Then, a year after #3 was born, I had the mother of all flare-ups and had to have my entire colon removed. Well, it took some adjustment. My husband accepted it, I freaked out for a while. Here I was, 30 years old, used to having the most beautiful flat stomach, no stretch marks, looked awesome in a bikini, and now I had a huge scar and an ileostomy. It was mentioned to be careful what I ate, stay on a low residue diet. But damn, I started gaining weight. My normal weight was 125 lbs, even after kids. Now, it seemed every year till around 40, it started creeping up to 175. Arrgghh! My husband became distant and we divorced after 20 years. To make a long story short (too late, I know), be careful what you eat. I have been hospitalized at least once a year for small bowel obstruction from eating either the wrong food or eating too fast. I did manage a 10-year stretch from '92 to '02, but it still happens. November 14 was the last time. I'm exercising more now, a lot of early morning walks, but I still can't seem to get below 175. Best of luck to you. Adjustments like this take time, but eventually you'll find the right routine for you. And the right food....

Actually, an update to my earlier post. I am not an ostomy person yet, but I did have colon cancer and my entire large intestine was removed in a subtotal colectomy. So that is where a lot of food and liquid breaks down and is absorbed into the system. As a result, without treating it, I would have the runs constantly and gas. My surgeon recommended Citracel powder 2x a day after meals and Imodium antidiarrheal two times a day to keep things more solid. That helped a lot, but I was still very limited to foods and veggies, etc.

In December, I started Humira and I can tolerate much more and different foods. While I find eating gluten-free helps my overall gas and digestion, it's a 90% observance. I now can tolerate a little fresh fruit (cantaloupe, small well-chewed bites of apple, etc.) and a wider variety of gluten-free frozen meals like chicken lasagna, burritos, raisin toast with almond butter, and sometimes regular people food like a sandwich or chicken breast or Chinese food. (I have not tried sashimi yet for obvious reasons). Also, beer and carbonated beverages don't sit well with me personally. I rarely have ice cream (lactose intolerance) but I still eat a bit of cheese and tofu cream cheese and sour cream.

So I still have issues but not anywhere as bad. Humira really helped me. I do not know if it's recommended for ostomies, but just sharing.

A person who has recently gone through colostomy should avoid eating too much fiber in food. Drinking lots of fluids, chewing the food properly, and having the meals regularly are some more tips which are given to ostomates these days by health professionals.

Anyone want to try it with me? I've read a lot about it and from what I found out, it's quite good. I'm starting a course this week, we'll see how it goes.