Struggling with Ostomy Care and Dietary Challenges

I had my ostomy surgery in March 2024 while in the hospital with leukemia. I have been in so many hospitals since, and when I tell you NOBODY UNDERSTANDS AN OSTOMY, I mean it!!! I have so many different doctors, and no one understands them, especially the dietary issues. I was in one hospital, and I wasn't allowed a teeny weeny bagel and a small roll for a snack later as I couldn't have "2" breads 😵‍💫😳😳. The only fruit I can eat, which helps with watery output, is a banana. I couldn't even get a banana because I was told no fruit! I called the kitchen and told them they were killing me. And they were. 😭😭 I was hungry and weak all the time. Doctors were supposed to add it to my diet but didn't. However, everyone couldn't keep their fricking eyes off of it. Everyone had to have a look. It was disgusting and humiliating. I still don't have a doctor because I don't know what kind of doctor to go to. Any ideas? I actually just came on here because I'm freezing, and all I want is a bowl of oatmeal, and when I typed in the question, the first answer that popped up could have been ME!!! With exactly all the reasons why I should. I shouldn't. Have you ever been given a "foods list"? There are foods on the good list that also show up on the bad list. So is it good or bad 😡😡😡? Somebody please give me some help here. I eat all meats, fowl, and fish. Pasta, potatoes (not sweet - fiber issue), and rice but not quinoa. Rice made with bone broth is actually very good!! And that's it. Maybe pureed carrots but not steamed and softened carrots! I feel like I'm missing so many nutrients, and I had to beg docs last week to do a vitamin panel on me!! And just a side note for any cancer patients here who are given Onureg chemo pills. DON'T TAKE THEM!!!! Every pill I took in addition to the Onureg went through my ostomy whole!!! 😳😳😳. I emptied the bag, put gloves on, took them out, and put them in a little glass jar. Yup. Every size and shape was there!! I freaked out. It was a few weeks before I was normal again and furious at the doctor!!!

Anyway, any thoughts??? Thanks

🦄 Other groups call me the unicorn because I have so many different things and side effects and hospital and medical issues that no one else has!

Hi GR, welcome to the site. As an ileostomate, I don't eat raw veggies or fruits, but I make smoothies.

Hi there,

You're not alone in being a rare patient. It's 20 years later, and they still can't figure me out. I have gone to over 30 specialists of all types. I am allergic to over 14 medications, and all anesthesiologists tell me they are scared to touch me, lol. I have had 6 ostomy surgeries, and 5 of those were in a year. 2 revisions and 4 relocations due to the way my skin is; it stretches. A small hole turned into a pale white thick scar that is well below the skin surface, and it stretched wide and long. I have a million different medical problems, and the list gets long as time goes on.

And no, places don't know about ostomies, which is why it's important for you to know all about it; you won't be able to rely much on them. They know the basics, and some don't even know that. As far as food goes, just like all of us, it is test and see. We are all different, and all our stomas and bodies are different. What thickens most doesn't thicken me, just like I can eat sweets all day, and I don't get thin. I am the opposite. Baseline: no raw veggies or fruits, no skin, and no seeds and nuts. As far as medications, no pills that are coated or capsules. Which is fun trying to find ones that aren't, which is where you will have to talk to your doctor about non-coated and no thick plastic skin coating, no gel, no capsules. Talk to your doc about that on meds.

As far as what type of doctor for your stoma, you want a colon and rectal surgeon.

Which type of ostomy do you have? Here's the thing I figured out with those ostomy food lists… they are a guideline only. It doesn't mean any food is good or bad, but what they have found in certain circumstances with certain ostomy patients. We are all different in what we can or cannot eat; it's up to each individual person to figure it out for themselves. If you're missing out on certain foods, try a small amount and see how it goes. Then, adjust from there. If you have other health issues (not the ostomy) that prohibit you from eating certain things, I'd avoid those, but otherwise, try what you want in small amounts and go from there. I've been reading this forum for roughly 4 years now, and it amazes me how many people rely on what they read is good or bad, and they won't try anything for themselves. Just remember, any guideline is just that: a guideline. It's like all the effects a medication can have in some people, but in general, it doesn't affect everyone. Go try stuff, enjoy, and take in the blue skies and sunshine daily; life's way too short to be mad about stuff you don't need to be mad about.

What Alex and everyone else said above. True.

Also, me thinks you're in the wrong hospital in New York. Wherever that is... it's not a good one.

These are things you needed to find out if you had the time.

You have to be firm and steady and be your own advocate. If they never saw a stoma, it doesn't mean you have to show them yours.

You are getting yourself all worked up when you need to stop and do for yourself.

If you can't Google, have family help. You must have a whiz kid niece or nephew or daughter, son.

The doctors only know so much. They don't wear the bag.

You can educate them or find better ones.

New York is huge. I don't think you're close to Manhattan, but there are some top hospitals there.

Even gastro-type clinics are there. Google will help.

Don't ever sit idly by. You live your life. Ask questions. Call out doctors and staff. Yeah, be a meanie. You can. I am. I do it. I told a story where an infectious disease doctor came in and took a look at my bag and started squeezing it.

Well, I went off saying, "Hey, how about I squeeze your nuts like that? What are you doing to my bag?" I reported him. He is no longer working there from what I have heard.

Be a warrior. Take them on. Don't feel stuck. There are options.

And certainly, you don't need their b.s. on top of your other conditions.

Good luck.

How to Manage Emotions with LeeAnne Hayden | Hollister

Hi GR,

You're correct………few understand an ostomy, even in the medical profession. When a medical person sees the word ‘ostomy' on your record, you immediately get lumped into a certain group that all gets the same generic information. It would be like labeling everyone “sick” that goes to the hospital and giving them each the same guidelines. The same thing happens a lot on here, so as an ostomate YOU have to advocate for yourself every time you need medical attention or advice, and there's just no way around it. Case in point would be a question like “what can I eat?” Every ostomate is different, so there is no generic answer. Most ostomates don't understand that, or just think every ostomate is like them. And most doctors are worse.

What you need to find is a dietician (not a nutritionist) that specializes in IBD. They will understand what you can eat based on the bowel you have remaining and what's currently going on with you medically. Otherwise, taking others' advice is a crapshoot (no pun intended), or worse….Russian Roulette. Common sense and moderation are the best advice, and over time with experimentation you'll figure out what you can and cannot eat (and drink). It's also important that whenever you're given a prescription for anything taken orally, you find out from the prescriber where they are intending for the pill/caplet/tablet to be absorbed…….and make sure you have that part of your intestine! Otherwise, as you noted…….you're wasting your time and probably need an IV version of that med.

If you tell us why you have an ostomy and what's going on.......those in similar situations can give you some diet tips…….but still tread lightly. Are we having fun yet??

;O)

Yeah, been there, seen that. I have 2 ostomies, which really gets people excited. (Eye roll).

It varies a lot by which floor you are on. When I had my surgery, I was placed on a colorectal surgery floor. Everyone there knew about stomas, and they even provided some instructions. The ostomy nurses came by twice a week to help me learn how to manage my stoma. Awesome.

But then I went home, quickly became sick, and was readmitted. This time I ended up on a cardiac unit (possibly because that was the only available ICU bed). No one knew a thing. I couldn't even get them to hook up my urostomy bag to a night collection bag. You'd have thought I was speaking Greek. They actually acted like I was being difficult when hooking up the night bag would have made things easier for them. I had my urostomy bag blow out while I was asleep because it wasn't hooked up to a night bag. I was so angry. So they got to clean me up and change the bed, etc., because they refused to hook up a night bag.

Lesson learned, I will take my own night bag with me any time I go to the hospital. I keep a couple of adapters that will let me use a Foley bag in my purse in case of emergency.

I have a million stories about the stupid food rules in the hospital. Next time, get someone to bring you some snacks so you can get by on what they will let you eat. Do not take their rules as any kind of advice.

If your stoma is new, low residue is recommended for the first few weeks. Then start adding back the foods that you'd normally eat. Eat small portions and chew very well. See how you do.

PS I'm also spending 12 hours a day carting around an IV pump, tending to 2 stomas, and an accordion drain with a wound site that's degrading badly. I get you.

Hi Granny, You have been given some really good advice here, and I hope that some of it is helpful to you. I can only add one thing, and keep in mind, I'm in Canada, so the system in the U.S. may be different. All the major hospitals here have ostomy nurses, and they specialize in wound care and ostomies of all kinds. They are very often much more knowledgeable than the doctors, even the surgeons. I would suggest you do some research and try to find one. Good luck on your journey, and keep us posted.

Terry

Once again, a sensible, no-nonsense answer from you, AlexT.  Good for you.  

Very wise advice. Where in NJ?

G-Day Granny,

Try to find an ostomy nurse if you can. As for the Onureg chemo pills, or any pill that goes right through to the bag, try crushing them first.

Please keep us up to date with your problems and hope things change for you.

Regards, IGGIE

The only people who understand are the stoma nurses and wound care centers. If you go in the hospital, you need someone with you who understands your entire system so they can help you. As for foods (I have an ileostomy), I can eat anything I want. Just chew well. Some foods will go through faster than others. I eat steamed cabbage, turnips, any kind of potatoes, rutabagas, cheese, and all kinds of bread. You need to really watch your meds and get "Fast Dissolve" vitamins and capsules that will dissolve before they go through. Your doctor should help with that. I see a gastroenterologist in addition to my family doctor. The larger hospitals tend to know more, like "The Cleveland Clinic" and "The Mayo Clinic." I go to Mayo even though it is 300 miles from home. Don't be embarrassed by your pouch. What people think doesn't matter.

One other thing is to check for groups that meet in your area and attend their meetings if possible. Also, there are "Zoom" meetings online that you can join.

Hey! Thanks.

TomsRiver.

You're in Southampton, NJ?

I was told days after surgery by an ostomy nurse what I could and couldn't eat; my words were "bollocks." My dad had an ileostomy and could eat all of those.

I've had more surgery than I can remember, but I've been much luckier than you and others. Even when nurses hadn't come across a stoma before and I wasn't able to change the bag myself, they just got stuck in and changed it for me. My condition, I have FAP, is another thing few doctors, unless they're an FAP specialist, know very little or nothing about. But when I go to see a heart specialist, I don't expect them to be; I expect them to be the best in their field on hearts.

If that happens in the country with the best medical facilities and doctors in the world, then God help us in the not-so-advanced ones. I had mild hypertension well controlled by pills; then I was prescribed an NSAID for an arthritic condition by a rheumatologist. After using it for some time, the blood pressure shot up alarmingly, and I had to go to the ER two times and finally get admitted in an attempt to get it controlled. While walking through a bookshop, I saw a small book called 'Blood Pressure' by Doctor Raymond Townsend, Director of the Hypertension Section at the University of Philadelphia, and bought it. Amazingly, it listed the very NSAID I was taking that raises blood pressure alarmingly. I stopped taking it immediately, and the BP went down. I sent an email to Dr. Townsend, and he was nice enough to reply. These meds are not for hypertensive folks. A heart attack or stroke is a likely result. Amazingly, the doctor who prescribed it for me died herself from cardiac problems. Actually, the healthcare and the doctors here are good, but not everybody has access to the better ones.

Doctor Townsend of the University of Pennsylvania, not Philadelphia,

Another book, "Hypertension and Stroke," contained a chapter, "Blood Pressure: Definition, Diagnosis, and Management," written by Dr. Townsend, which contains a list of meds that cause BP increases, with NSAIDs first on the list.

Since you have an ileostomy, the output is typically watery, as you stated for yourself. Bananas are great for thickening output; they also work for me, so I suggest you stick with the bananas. Ileostomies are more prone to blockages than colostomies due to the smaller diameter of the small intestine. There are certain foods you may want to initially be wary of, such as nuts, seeds, raisins, raw vegetables, the skin of sausage and hot dogs, and corn. Be careful with beans since they increase the amount of intestinal gas and noise; they can also lead to watery output, so you definitely want to stay away from them prior to social outings.

A safe way to start is with a low-residue/soft diet:

• https://www.verywellhealth.com/low-residue-diet-tips-797574

• https://my.clevelandclinic.org/health/articles/15637-gastrointestinal-soft-diet-overview

Two absolutely essential things you must do are stay hydrated and chew your food thoroughly. To emphasize the point, my surgeon advised me to chew my food 60 times. I did that until I became more comfortable with my diet. I now chew my food until it is completely mushy — if there is anything solid in my mouth, I keep chewing.

Once you are doing fine with your low-residue diet, you can start to gradually introduce other foods into your diet (small quantities at first). Use a mobile app such as "mySymptoms" or "My Ostomy Journey" to keep a diary of the foods you eat and their effects on your output. This works better if you introduce one food at a time.

“Never try to be better than someone else. Learn from others, and try to be the best you can be. Success is the by-product of that preparation.”

— John Wooden

I was lucky that day. If I hadn't run across Doctor Townsend's book, I would have continued with that NSAID. I had no idea that it was causing the spike in my blood pressure. Best wishes.

Another example of why we need to be our own best advocates. Here, we would expect the pharmacist to notice you were on blood pressure meds when prescribed a med that increases blood pressure. The pharmacist is supposed to warn you and notify your doctor. That doesn't always happen.

Yes! I saw one with bananas and peanut butter, which sounded delicious! Lazy me just had to figure it out and make it. I think it would be a great snack between lunch and dinner! What kinds of smoothies do you make?

Yes, I was on Levaquin for many months, once a day, 500 mg. I went into the hospital and was told I had pneumonia (every single test they ran was negative!), however, they put me on 750 mg of Levaquin. Being educated in meds through illness experience, I knew the dose was too high and they had my drug list on file!! So, I stopped the 500 mg and took the remainder of the 750 mg and then resumed the 500 mg after. I called the pharmacist who had filled BOTH! He said, "OMG, you're right. It would have put you over 1000 mg!!" After I hung up, I realized HE SHOULD HAVE KNOWN, having all my records in his computer. 😳😳 I have to keep my eye on everyone in the medical field. It's a terrible way to live when you're already stressed by illness. 😡

You delegate your health to your own peril — you are the one who has to live with the consequences. 🥺

Thank you so much. I follow that diet now, and I bring a banana into the bathroom every night and eat half before bed and half in the middle of the night; otherwise, I would have a huge bag of liquid stoma contents 🥺. Thanks so much for the info on the doctor. I just have to find one. We live in a place that has the most terrible doctors. But at least I know what to look for now ❤️🦄

I get it, I have to travel almost 2 hours for all my doctors. You just have to search and do research on doctors, and you will find one. But don't settle. As a patient, no patient should settle with a doctor.

Hey,

I haven't had my stoma long but have had a lot of problems - apologies it's a bit long,

I had the same issue with my medication. It's usually down to the ileum overworking, meaning it goes through faster. Capsule or modified release medication should be swapped to a tablet, liquid, or IV. Tablets should be ground and dissolved in water. If a tablet doesn't break down in water in an hour, you won't absorb it. It also depends on where in your digestive system the tablet is intended to work/be absorbed; for example, amitriptyline is absorbed at the end of the ileum, so stoma placement dictates if you will absorb it.

The ultimate no-no foods are - sweetcorn and nuts… think of things that could easily block your stoma. Mushrooms, peas, things with a skin or large seeds (orange pith, pepper skin, seeds) just be mindful of how much of these you are eating. Food should be well cooked and well chewed. Outside of that, it's down to how your bag reacts. Some foods bring unwanted side effects, change consistency, and smell. If you have other digestive issues, fiber probably isn't the way forward, but outside of that, it's learning what does and doesn't work for you. Some people struggle with dairy, orange juice, legumes, brown bread, but others have no problems. If you have other digestive issues, it may be worthwhile looking at the F.O.D.M.A.P and then add food one at a time.

Things to improve output - mashed vegetables, banana, jelly, mousse, jelly sweets, cake, and custard 🍰 (no lie, my dietician told me 😅) You can also take loperamide melts, which can be helpful.

Common foods with unwanted side effects - broccoli, fish, legumes, asparagus, cabbage, pop, pineapple, coconut.

Ultimately though, the aim is to eat as healthy as possible and return to as normal a balanced diet as you can.

Hope this helps

OMG, I can't believe he squeezed your bag! I actually laughed at the outrageousness of it 😡. I was in Sloan Kettering for 5 months in 2024. It just hit me that I wasn't even outside at this time now. I was in a highly rated hospital that screwed me. I never saw doctors. Ostomy nurse? Came in once a week. Before I left the surgery recovery floor, I used my phone to film them changing my ostomy and my wound vac area because I wasn't taught anything about it. I was moved back to the leukemia floor after they deemed my ostomy recovery was okay, and I kept saying in a panic, "They don't understand ostomies. They won't know what to do!" And they told me all nurses knew how to do it. Well, I remember one night I had to go pee but needed to be escorted. I went, stood up to go back to bed, and my bag opened and streamed all over me and the bathroom. The nurse stood there staring and couldn't move. I, who had never stood up by myself yet, had to give her directions on what to do. "Give me a towel. Wet some towels and gauze pads. Get me another ostomy bag." As I turned to "walk" to my bed after standing on my wobbly feet, I said, "But I'm not cleaning the floor. That's your job." She still hadn't said a word. She turned and walked out and left me. I expected to be brought back to bed. Instead, I saw the back of her head walking out the door. Since I didn't know her name, I couldn't report her; however, I did something else. I told every single person who walked in my room that whole next day what had happened. Everyone. From food server to any doctor and nurse I saw. By noon, everyone on that floor knew what happened. THEY knew who she was, and that was good enough for me. I never saw her again. My surgeon/ostomy group would come in every day in what I call the "chicken line" and tell me my labs were good. Nothing changed. And then turn around and walk out. Every roommate I had, their doctors would sit and update them and talk to them. Not mine. Same words every day. They wanted me to sit up in bed and eat and sit in a chair. I was in so much pain I couldn't do it. (This was while still up in surgery floor; sorry for going all over the place, my PTSD comes out when I remember.) PT came in to try to get me up. I would cry. Finally, my big shot surgeon came in (first time since surgery) and had them take CAT scans. I had TWO major infections in my stomach!! 😡😡😡😡. How could they not know there was something wrong when I literally almost died during a chemo infusion before surgery from sepsis, septic shock, bacterium? They called my husband in at around 2 AM. Thank God he was in the city that day as we live 100 miles east of NYC, and I was cold and gray. And my BP was 65/45. What did he want to do? He said, "Give her 24 hours." If he hadn't been there, they would have put me down. The next morning he came and gently asked me if I knew where I was. My reply: "I'm in the fucking ICU at Sloan Kettering." I was aware. I was in such extreme pain (and I had pancreatitis burst bowel in an earlier year). The pain was unbearable. I was screaming and screaming and screaming, and I finally climbed that mountain and I jumped. I jumped. I'd had enough. And I knew where I was even then because I couldn't believe I was in a cancer hospital that wasn't controlling my pain. I'm in other groups with people from all over the world who had prayer groups for me, and as I jumped, a hand grabbed my leg, and I reached back to grab it, and it was a red wool jacket, and behind them was another hand. It took every prayer group, flailing and screaming as I was, to keep me from falling and dying. I didn't know until months later that I wasn't screaming out loud 😳😳🥺🥺. When I saw the list of reasons and the codes they called, I couldn't believe it! But that ended up causing my ostomy surgery. Point being, if I'm complaining about extreme stomach pain, I'm not lazy. I'm not playing games. I'm in extreme pain. And no one believed me. After the CAT scan showed the infection caused by my bowel blockage, they put me on antibiotics, and I remember clearly the morning I woke up pain-free and sat up by myself on the bed!! But the suffering until someone believed me, especially when I had all those issues in the beginning. Sloan almost killed me. The only thing good about it was the food. I was there for five months. Showered three times and never brushed my teeth until the end. I woke up one morning with a bunch of boxes in my room. They were ostomy supplies and a pump for the wound vac. I had no clue what anything was. What I did understand was that they were trying to discharge me. Nurses were coming in to say goodbye! I said, "I'm not going anywhere until I'm ready." I think I walked the entire floor twice with a walker at that time. Sloan was a horrible experience, and I know from my own and hearing others talk about loved ones who died there, it should not be rated as a top-rated hospital. I went home finally clueless about my ostomy. Never got a "talk." The night before, I kept telling my patient advocate that the wound vac wasn't charged and would never get me home. She said, "Oh, don't worry." At 8 PM, I finally called for the last time for someone to charge it because it had special settings. The nurse who came in happened to see one other nurse walking by. Unbelievably, she knew how to do it. The nursing group who was supposed to take care of me at home? They had no clue how to change an ostomy. I had to play my phone video for them for $300/hr!!! After two visits, I was done. Got most of my money back by threatening. Had one after-hospital stay visit, and there was a wonderful stoma nurse who realized I was not fitted correctly with my bag. My husband walked over and asked to be shown how to do it. And that's what we did. My brave husband learned that one day how to change my bag, clean it, and the nurse changed the bag to another brand, and I barely have leaked again. Never saw the surgeon again. Never saw any other doctor who understands ostomies. I have been at Stony Brook Hospital. Have been at Southampton Hospital. No one knows about nutrition. I had some irritation around the stoma and spoke to nurses. For very little help and was more yelled at than taught. So back to Google. I've been doing okay on my own. But I somehow acquired massive embolisms in my lungs that could not be budged after 3 hours! Put on blood thinner. My question is always how will it affect my ostomy? And no one knows. I had to educate all of my doctors about coated pills and capsules. Me! When at Sloan, I kept asking all the nurses, "Want me to show you how to empty a bag? It's not hard." I got two nurses to sit with me for ten minutes while I showed them. Their response: "That's all there is to it?" And my reply was yes. It's not hard. Hospitals need to retrain their nurses and doctors on different conditions. Life would have been so much better for me at the start. I change and clean it myself now. And it's an active baby girl, lol!! I educate myself, and my husband helps. But it's been a long, hard, painful, embarrassing year. One year, and I'm actually seeing snow again, hearing the birds at all my feeders, talking to friends, seeing the sun (at Sloan, the beds face away from the window), feeling fresh air on my face. 😭😭💔. And all I want to do is eat my delicious dinner, which consists of a piece of chicken or steak or whatever and either rice, a potato, or pasta, and wondering every night if my ostomy bag will be fluid-filled like water or regular creamy texture. What I do now is I take a banana and cut it in half and eat the first half at bedtime and the second half during one of my many wake-ups at night and have gotten excellent results.
I'm just really sad. With my three leukemias and now my embolisms, I have to say dealing with the ostomy has been the worst thing I have had to deal with. I've read one story on here which I can't find now, and I have to say she was the only person I have seen who actually had it so much worse than me that I cried and cried and wanted to ask her how she dealt with everything for 28 years....and now I can't find the post. And I read here about people needing multiple ostomy surgeries, revisions, etc. I don't even have an ostomy doctor 😵‍💫. You people are strong. You're warriors to me. Everyone calls me one, but here I see many. And I am so proud of all of us for being so brave and knowing we are going to live with this our whole life. And knowing it's a daily learning experience. I thought of writing a book "Kerry's Conversations With Her Stoma," especially in the beginning when I had many conversations with it as it was doing its thing, lol.
Thank you to everyone who has given such good advice in the short time I've been on. And especially my fellow unicorns ❤️❤️❤️😊😊😊🦄

Thank you for your info. Unfortunately, anything with high sugar content just takes me down to water. I'm thinking of doing smoothies with peanut butter and banana. Sounds delicious and healthy. My daughter, who has her own health issues and is a good researcher, told me when I was concerned about not getting enough vitamin intake yet not seeming to suffer from it, that the animal meats I eat have vitamins absorbed in them and thus they are transferring to me! Makes sense to me! I think I'm going to start making pudding again. 😁😁❤️ But my real test is going to be when I get the courage to cook up some oatmeal with cinnamon and honey (minus the strawberries and blueberries) that was my go-to breakfast every morning, even on vacation!! Now it's a bowl of Cheerios and a bagel with cream cheese, a touch of OJ, and a cup of coffee. It does it for me. But I do want my oatmeal again... well, it's 1 am and I have chemo in the morning and hospital in the afternoon as my PICC line finally died and I'm scared and hope it's not caused by a clot, as I am filled with embolisms caused, I was told, by the breakdown of the leukemia cancer cells. Very odd. Wish me well. Grandson coming for a sleepover this weekend. Any procedure they want to do will have to be done next week. I have canceled on this 6-year-old boy so many times that this is not going to happen again. I've got the army guys all set up!! 😁😁❤️❤️❤️🦄

You are absolutely right; however, slim pickings are around here, although I just found a really great pulmonologist. 😁❤️ I would have to travel over three hours to get into NYC during peak traffic periods. The pulmonologist explained that it is not a good idea, to which I heartily agreed, so I continue my search out here.