Seeking Nutritionist Advice Post-Ileostomy: Experiences?

So my GP is supposed to refer me to a nutritionist, and I requested one experienced with ileostomies. I have so many foods that do not work for me. I can't just eat anything like a lot of you on here can. So, I was wondering if anyone else has ever consulted a nutritionist. I have seen a dietitian in the past, pre-ostomy, for an eating disorder. I am kind of nervous to see a nutritionist in case it makes me go back to my old ways, even though it has been years. I know I need to come to some good solutions for me to get the nutrition that I need. My levels on a lot of things are all over the place, off or borderline between low and normal. I am not sure what a nutritionist can really do or say to help. I know some on here have asked what to eat and not eat, and those are very general guidelines. It doesn't work for me. So... just wondering if anyone else was referred to a nutritionist post-surgery (or for me, it is 7 months after surgery).

Lee

Hello Lee.
I believe that some of the larger manufacturers of stoma stuff have nutritionists on their staff who are available to talk to.
Also, you might find that some of the past posts on here could provide an insight into some of your issues.
These can be found via: 'COLLECTIONS>Premium Content>Discussion summaries.>Diet & nutrition (323 entries).
Best wishes

Bill

What's not working for you as far as what you're eating?

I have spoken with many registered dietitians who have been most helpful, but no nutritionists. Your post raises the question of what the credentials of a nutritionist versus a registered dietitian are.

Nutritionists usually cannot provide medical nutritional counseling or diagnose or treat illnesses. In contrast, a registered dietitian is a credentialed professional. In addition to doing everything a nutritionist can do, an RD can provide medical nutritional therapy and counseling.

What isn't working is that I am not deriving enough nutrition from the things I can eat, which mostly excludes vegetables and many fruits. So, I eat a lot of pasta and sometimes fajitas with just chicken and cheese, and well-blended soup. I do not seem to be able to digest foods with a lot of nutrients in them. My blood work that just came back showed me low on a whole lot of things. I am trying to drink a Glucerna every couple of days and I take a multivitamin, but that doesn't seem to be helping.

Lee

Yeah, when I was diagnosed with bulimia, I was first sent by my GP to a nutritionist, and they said they could not treat me until I was cleared by a dietitian. It was a royal mess. But I am not sure I need any diagnoses right now, just some structured advice.

Lee

I am not a premium member.

Lee

Hello Lee.
Are you saying that not being a member prohibits you from accessing the 'Collections' section?

If this is so, I was not aware of this restriction.

Best wishes

Bill

Blend your veggies and fruits into smoothies and enjoy them. Have small ones throughout the day, not just a couple of big ones; it'll help keep nutrition levels steady and not spike and flush your system out. It's very simple to get your nutrients into your body, just Google recipes that you'll enjoy. The trick is to keep them coming because your system will have a harder time absorbing them since you (we) are now dealing with fewer intestines to absorb stuff. Then, add in the higher amounts of water needed that tends to flush things out quicker. Small meals more frequently is key.

I do sometimes make a pineapple smoothie, but I don't like veggies in my smoothies, and I couldn't put a raw veggie in a blender and expect that my ostomy will accept that. This morning I gave it a banana, a Glucerna, and a yogurt, and it output all liquid 1,500cc from just that. I have a very finicky ostomy. I once pulsed cooked broccoli in a food processor, and my ostomy just spit out a zillion little broccoli flowers and stems. When I eat mango, apple, or peaches, it just comes out looking like it went in, just in smaller pieces.

Lee

Well, I have a colostomy and broccoli comes out like that for me too. I think most of us have various types of output compared to what we had before an ostomy. I don't think you're having more issues than any of us. It's all a huge change, but don't let change dictate your life. Adjust, enjoy, and smile.

Well, when things come out like that, it means the nutrition is not absorbed. At least, that is what my ostomy nurse told me. And seeing that I am low in a lot of blood levels, I would say that must be true. Something isn't happening for me somewhere along my digestive tract.

Lee

G-Day Lee,

If your food is coming out the same as it went in, then you may not be chewing it enough. Your doctor can prescribe supplements that will give you a better blood reading. You mentioned what you put in your smoothies, and it seems you have a sweet tooth. Cut out some of the sugar and get to see a registered dietitian, not a nutritionist. And do it soon.

Regards, Iggy

I already take a multivitamin every day and also Vitamin D. I have to also take potassium twice a day. I am hoping no more pills, but I have a sinking feeling that my iron is low. My magnesium, which I take once a day at 400mg, gives me a borderline blood level. I had trouble with being anemic before my ostomy. During the time when I was bulimic, my iron crashed really low and did not recover for a few years. It did eventually get better, but even though I am not engaging in bulimic behaviors anymore, I feel the signs that my iron is low. I am going to have the doctor check it at my annual physical next week, along with re-checking some levels that were off in September and continue to be off as of last week. I am finding it hard to keep a balance. I do think about what I am eating. I keep a food journal like my former ostomy nurse told me to do. It doesn't help that I have stage 2 kidney disease as well as an ostomy. I just wish I could eat stuff like corn and spinach, things with good nutrients in them. I can't even eat iceberg lettuce without problems, and I know iceberg lettuce doesn't have any nutrients in it anyway (so said my general business teacher when I was in school). Most iron-rich foods I don't eat. I am not a red meat fan. Maybe have that like 1 or 2 times a year. I do eat chicken; sometimes I like chicken salad and grilled chicken in a tortilla. I know chicken has iron in it, so I try to eat it a couple of times a week. That is my main meat source. Even if I could digest veggies, I have read online that they have minimal iron in them, except spinach, which doesn't digest for me. I am feeling very confined. Maybe if I get some guidance, then I won't feel that way anymore. But also, all this focus on food and nutrients has put some bulimic ideas in my head lately. I do better when I am not thinking about what I am putting in my face every day.

Lee

Hi Lee, after reading your last message, you should see a registered dietitian and tell them exactly what you just wrote down in the last message. Good luck and start thinking positively. We are all on your side, so you have good friends looking after you. I just had a thought, Lee, why don't you try to use a blender to blend all the food you have trouble digesting? As a liquid, it might just work for you. Regards, Iggy

Thanks for the kind words and advice. I do blend some things and use the food processor sometimes. I guess part of it is that puréed food has less appeal to me. I know that means I am causing my own problems. It is a good idea, though. Maybe if I can counteract the flavors of veggies with fruits I am able to eat, then it might work. Maybe. Right now, I would just like to get my ostomy to stop being full force liquid all the time. I know when that is the case, nutrients aren't being absorbed, which just compounds my issues.

Lee

Hi Lee,

I have seen a nutritionist after being chronically underweight since my ileostomy. She is actually a nutrition doctor, an MD who specializes in nutrition. Her first recommendation was for IV nutrition, to which I replied, "No thank you, let's try other options first." 😉 She prescribed Lomotil, which I now take (3 a day, one with each meal). That has helped thicken my output. I've also added an afternoon snack, a smoothie made with Greek yogurt, frozen banana slices, protein powder, a splash of vanilla, and a little milk. She advised that I avoid drinking anything a half hour before or after, or with my meals. I'm on a low residue diet (I also have adhesions) so I never eat raw fruits (except the banana) or vegetables.

You mentioned veggies don't work for you. Does that include cooked vegetables? Or fruit? Most should be okay. I know finding the right foods to stay healthy can be a struggle. I hope your GP can give you a good recommendation. Best of luck to you!

Joan

 

To answer your questions, yes, cooked and raw veggies and fruits don't seem to digest well for me. I try to remember to chew thoroughly. Last night, I had chicken noodle soup, and both the carrot in the soup and the chicken came out in the output. I thought being soup, everything would be sort of mushy. Apparently not enough. I can eat cooked broccoli if it is put through a food processor, but I am picky and don't like the look of processed broccoli. It isn't appetizing. I do use Glucerna and get some nutrition from that, but it makes my ostomy watery. My previous ostomy nurse imparted on me that protein is something I need a lot of with an ostomy. So, I too sometimes make shakes with protein powder in them. The staples of my diet are noodles, yogurt, and English muffins. I do eat other things, but those are the most well-digested foods. I thought ripe bananas were soft enough, but I just got slimy pieces of banana in my output. I eat fajitas too sometimes. No veggies, just chicken and sour cream in a tortilla. But as I said, even shreds of chicken come out no matter how much I chew. I have my annual check-up tomorrow, which I am actually dreading because she is going to want to have me do my labs all over again and will probably add vitamins and minerals to the list. Plus, she will probably lecture me. She doesn't have a good working understanding of ostomies. She is only an APRN. I guess ostomies aren't common enough that they teach nurses that. When I told her she needed to keep up my prescription of Imodium, she asked me, "How long will you be on that?" I was like, duh, as long as I am living, whenever my ostomy needs some. It was as if she thought one day I wouldn't have an ostomy. Like it was going to clear up with time or something.

Lee

If you choose to seek nutritional advice, I would recommend seeing a holistic nutritionist as opposed to a dietitian. I am currently studying holistic nutrition and plan on specializing in nutrition for those with an ileostomy, because our needs are different, and extend far beyond the information you will find online which does not go any further than regulating output and avoiding obstruction. Because we lack a gut microbiome, it means our ability to manufacture B vitamins, serotonin, etc., is diminished, as is our ability to recycle bile and absorb fat-soluble vitamins. Before you see a nutritionist or naturopathic physician, see if you can find out from your surgery report whether or not you have any of your terminal ileum remaining. This information will be very helpful in understanding your ability to absorb certain nutrients, such as B12.

I am not very up on terms and things. If the terminal ileum is the end of the small intestine, then I have less of it than my initial surgery because I had a relocation surgery where they had to cut down my old ostomy to form the new one. I don't know exactly how much they cut off, but they would have cut it for the original surgery and then again for the relocation. I had read that magnesium is absorbed at the very end of your small intestines. So maybe that is why, even though I take 400 mg of magnesium a day, my levels are right on the borderline between low and normal. I used to take a B vitamin, but when my psych nurse found out I have problems with folic acid absorption, she put me on a multivitamin that has B vitamin in it, so she told me to stop taking the B vitamin. I need to get that checked to see if the multi is enough. I also take a D vitamin. About the only level I have that is normal is calcium, and it is low normal. But that is probably okay because I drink a glass of milk every morning and I eat Greek yogurt.

Lee

Hi Lee,

I hope all is well! I am a cancer patient as well as an ostomate and have to approach nutrition a little differently. I've cut out all sources of sugar and starchy carbs to starve the remaining cancers, and fiber is definitely not my friend.

I did contact a nutritionist for the first cancer. It took 10 minutes to realize I knew as much as she did, so I said thank you and went back to Google and my own experiences.

I was low in magnesium, potassium, and iron after surgery, so I had to supplement as well, and I added nutritional yeast for B vitamins until it all leveled out. I drank 3 to 4 liters of water a day as recommended.

The truth is I was in pain and up all day and night trying to eat and poop normally as per the ostomate nutrition information pamphlet. It did not work for me at all, and my output was thick and painful even with a laxative and lots of water.

I couldn't get a break from being an ostomate as my days were centered around food and the elimination of food.

I followed the recommended diet for 2 months but was gaining weight and was miserable. It took all day to prep, cook, and care for myself and my ostomy, and I was getting depressed that this would be all there was to my life.

I ballooned up from 174 lbs in 2022 to 194 lbs in less than a year after doing without all of my favorite foods.

How? I was eating 2 meals a day of less than 2000 calories, plus burning up to 2000 calories a day, doing over 10,000 steps a day, 90 stories a week in stairs, and still gaining weight?

It was time for a serious change, so I went about lowering my inflammation by doing no seeds or skins on fruits and vegetables (lectin-free diet), very little bread or grains, and lots of meat, eggs, and butter. This was a great deal easier to digest, but I still had some pain and inflammation.

I added vitamin D3K2 and AG1 vitamins and minerals, and with time I started to have some relief in pain but not in weight.

On YouTube, I heard about the carnivore diet and after researching and talking to my doctors, I started a strict carnivore elimination diet on June 1st, 2023. I intentionally drink from 64 to 128 ounces of water per day based on my activity level, I add electrolytes and a laxative once a day to that. My output is liquid but a 1/4 to a 1/2 a cup x 2 a day at most makes it easy and painless to deal with.

It's November 14th today and although I don't weigh myself until next Friday, I've lost 34 lbs to date and have almost zero digestive pain and great bloodwork results. The weight loss is a bonus, the real results are in my digestion, skin, hair, teeth, energy, bloodwork, arthritis, and mental acuity.

After 5.5 months, my doctors are happy with my progress and only 2 of 6 cancers grew in the last 6 months, so I'm happy too.

Nice work on your positive attitude, I believe that is key to thriving instead of just surviving.

Best of luck,

Terri

Hey Lee,

Have you tried bone broth with salt and pepper? That will help bring up your iron without eating red meat. They sell it already made so you don't need to make it from scratch.

Terri

Your story is very interesting. I don't think I could eat only meat though. I do not eat a lot of meat now. It is hard for me to imagine eating only meat. That is great that doing that solved some of your problems with cancer. I don't know a lot about cancer, but I do hear about it all over the place, mostly in TV commercials from St. Jude and Shriners Hospital. That is mostly kids' cancer. I did watch the Stand Up to Cancer special when it was on TV, but I am not sure that I learned anything from that that I didn't already know. What kind of cancer do you have? I mean, if you want to share. How does cancer complicate things with your ostomy? Or does your ostomy prove challenging to your cancer? I have an ileostomy, so I don't get thick output. Actually, I would love to have that sometime. Today, my ostomy did 2,000cc of water, 1,500 of that before 9 am. I drink 64 oz of fluid a day, as that is what my ostomy nurse that I had back in April and May told me I needed to drink. I try to temper that with not drinking too much because that can lower sodium, magnesium, and potassium. All of my electrolytes are right on the line of low and normal nearly all the time.

Thank you for sharing your experiences. I really appreciate that.

Lee

I'm sorry, but that made me cringe. Bone broth? I assume that means it is made out of bones?

Lee

The dizziness may have something to do with blood pressure. It varies for everyone during different times of the day and after such activities as eating, exercise and showering. If you keep track of it, you will know at what times it is high or low or normal, especially true for those who take BP pills and find it difficult to keep it in good control, that does take time. More than two or three alcoholic drinks makes it even more difficult. Binge drinking is a no-no. They say that if a low BP does not affect your everyday activity, it is much better than a high one. Hasn't been long since your surgery. It takes time for things to stabilize, took me a long time both physically and mentally. Best wishes.

Mairi Just reading through the post and I would like to keep in touch with you because I believe in holistic nutrition, and I just got the ileostomy recently. Ironically, I have a meeting with the nutritionist in two days. So far, when I am researching is that carnivore is best for us. That’s just my research but I’m also taking a Multivitamin and a probiotic, Plus prebiotic.

Hello, interested in your learning re holistic eating for ileostomy. I simply go with the basic flow, I can’t eat most fresh fruits and vegetables, each day a new surprise for me. What will digest today, is not my friend the next time. Too much meat a no-no, chicken cooked a certain way, doesn’t work. I love my daily challenges. Thank goodness for water, the only thing that is consistent in my food life. It seems the older I get the challenge gets harder.