Stoma Eating Issues - Need Help with Food Intake

I'm just over 4 months out from surgery and have the new stoma just 7 weeks or so. I have a problem with food intake and need to know if anyone else suffers from this or can help me find a way to fix it... I never used to be a big eater even though I'm a big girl. Before surgery, I'd eat a bowl of soup and a bowl of cereal and that would be it for the day. Well, that's all changed. I will eat a good meal, 30 minutes later it's running in my bag, and an hour later I'm hungry. Not just hungry but usually starving!! I'm like, what's going on?? I eat snack stuff but it doesn't help. I need a meal.... Now when I get hungry and don't eat in ten minutes or so, I get sick!! I've thrown up on several occasions over this!! Is my body lacking something?? I have to take supplements for potassium, vitamin B-12, and magnesium already. Any ideas??

Hi Slow momma,
I've been checking in, on and off, to see if anyone has been able to give you some advice regarding your eating issues and your stoma. I don't have the answers for you, and I don't know why you would be throwing up, but if it's continuing you should definitely see your gastroenterologist.

As far as your bag filling quickly, have you tried foods to thicken your output? I know rice, applesauce, tapioca pudding work for me. I'm not sure if you drink coffee, but it can be like turning on a faucet after that! Make sure you aren't getting dehydrated. I'm pretty new to the world of ostomies, and not sure if this helped at all. Hope things have started to improve for you.

I am just short of 4 months out and have had every imaginable output!! I was feeling like I was in a constant feeding frenzy and I was getting sick of eating -- finally things calmed down - part of the healing process but I lost far more than just the colon -- from FAP -- so my ideas may not do the same for you - I cannot eat tapioca pudding without causing the bag to really gas up - I do steam veggies and drink/sip lots of water -- I also found sweet pickle juice really helps to calm the cravings.

I found a meal with lots of mashed potato helped a lot -- watch out for any food additives -- I eat marshmallow and peanut butter sandwiches that also help -- coffee is a disaster but I now go caffeine reduced or free and enjoy a cup once a day if I feel the desire - tea is ok but I use lots of honey and milk which makes a difference -- crackers and cheese (not processed) - another favorite is milkshakes and real fruit popsicles - I just work at it and look for ideas that taste good! I wish you the best -- it will get better... I have also been told that everyone will find different things that work --

Good luck - Ewesful

Hi Slowmomma

Does the hospital where you had your surgery have a WOCN nurse and a dietician? They should be able to give you all the answers you need. I had my surgery at Sarasota Memorial, and they were absolutely fantastic.

Bananas and oatmeal also help to thicken up the output.

Good luck!

Sandi

Hey Slowmomma!
Through trial and error, pastas, rice, crackers, bread, pretzels, peanut butter, they slow my output down some and thicken the output. I know some say these food choices are not good for you but hey, at this point in my life taking care of my "Mary" is more important. I do this all in moderation since I don't want to get a blockage either. As for liquid, it would be an understatement to say I drink 24-7. I associate that with my meds. I do drink a cup of coffee in the morning and I have never had a problem. But YOU have to find, experiment with the food and drink your 'gift' is comfortable with. Seeing a Dietician and an Enterostomal Nurse wouldn't be a bad idea....you can always make adjustments as things improve. Hope you get things straightened out! Once you do, believe me after 42 years with an ostomy, you will realize that had you not had the surgery, you could be in terrible pain or, as in my case, a statistic! You'll get it right soon......good luck.

Words of Encouragement from Ostomy Advocates I Hollister

Thank you everyone for your helpful tips. No, I don't drink coffee...I mainly drink water and sometimes a little milk and juice. I've been trying to eat potatoes and pasta type stuff yesterday and today to help fill me up and firm up my poo. Not helped too much yet. I love peanut butter, but have an allergy. I do eat applesauce and bananas.
I had part of my large bowel removed in my first surgery and then had to have most of my small intestines removed due to ischemic bowel disease and a blood clot, so I've had a lot of surgery done. I could have died twice. I prayed before surgery for no bag, that I didn't want to live if I had one, but I lived and have a bag. Just not sure why things are working out this way. I'm not good at coping with all this and most days I've had enough and keep saying, I hate this bag, I hate this bag, I hate this bag...I'm hoping that things do settle down for me since it has been four months now...
My ostomy nurse comes tomorrow and I'm going to have her sit down and try to help me figure all this out... I hope she has some answers..
My big wound has been hurting this week too for some reason. It hadn't been at all for awhile..(it's big/deep enough you can put 2 baseballs down in it) so trying to deal with that too..ugh..
It's amazing how your life can change in a day.
I looked online today to find out just what "normal daily output" was for an ileostomy person and it said 500 to 1000ml which is about 28 to 35 ounces.. Well that's not good for me as after 9 hours I was already at 46 ounces. And we're supposed to have 3 1/2 quarts of liquid to drink daily...that's about a gallon. I talked to my surgeon today and he knows my output is high and wanted me to measure it for 24 hours and let him know. I called his office to ask the nurse about my low B12 and the lady let me talk to my doctor cause he was just walking past the reception area so that was a shock lol..
I'm going to get some Pepto Bismol and see if that will slow the runs and help coat my sick tummy too. I've tried about everything else...

Hi Slow momma,
I'm glad to hear that your ostomy nurse will be seeing you. Just wondering about your wound, and what's being done to heal it. Does it require packing, or is there a woundvac on it?

Yes, Newhorizons, I do pack my wound. They used a wound vac on me the first month, but it never worked well. It was clogging up a lot and when they would change the stuff in it, it smelled so bad it about made me sick, so they changed it to dry pack. It was about 4 baseballs big at that time. So pretty much what I eat goes to healing my wound. My hair suffers from it. Lol...when I brush it, I get globs. But it's just hair and it will grow back better when the wound closes in a few months.
My ostomy nurse said to not worry so much, it will get better. I have a lot of healing to do yet. She said to give it time. I'm not a patient person and all this is hard on me!

I just spoke with someone today about the same subject. For me, really processed food, like ham, tons of preservatives, it makes me go with such acid, I need ice on my skin. Sorbitol, sugar-free stuff - Crystal Light, I'm a watery mess.
Try Stoma Seal and an Eakin for skin.

I have always been told to eat small meals throughout the day. Be sure to eat things that might bulk you up but not plug you up either. Drink plenty of water. I have a urostomy and have short bowel syndrome. I have to learn to eat a different way because I know my body has changed. I have had my urostomy for 52 years now. If you aren't sure, always contact the doctor. Hope this helps a little!

Hi Slow Momma,

I'll join with everyone else to tell you that it's trial and error for the first few months or longer. I have had my ostomy for more than 50 years and was only 15 when my "adventure started". First and foremost, what I did learn is that "what you say to yourself really does matter".

If you "hate" hate, hate... the bag, or the ostomy... and tell that to yourself often enough, it will be self-defeating. As a teen, I came to understand that my ostomy and all the paraphernalia were my "badges of survival...

For the last 10 years or so, my "digestion" changed, or so I thought, and I was fighting off the runs and dehydration regularly... It turns out to be sensitivity to dairy... and as much as I love cheese, dairy, ice cream, etc... no dairy = no runs for me... I do indulge a bit on occasion... but don't like the outcome... or increased output, or the inevitable dehydration.
So... I drink lots of water... now eat whole grain bread, etc... oatmeal for breakfast to get the day off to a good start... I'm just 65 and am discovering a "new" way of eating... more vegetarian/vegan-based... using healthy oils and new cooking methods. I've been made aware of diets for people with autoimmune issues (I had ulcerative colitis) and although the diseased colon is out... other areas of the body can get "inflamed". It's a systemic condition... as is Crohn's. I wish you well... as you discover a healthier future...

Marsha

Hello Slowmamma: I too, am a newbie. I am 13 weeks post-surgery. I had been very sick before I had my ileostomy and had lost over 40 pounds. So it is taking me a long time to gain any weight, and everything I ate would exit within an hour or so, and was all liquid. Two weeks ago, I bought a Nutribullet and have been drinking smoothies every morning. I have gained 4 more pounds. So as of today, I have only gained a total of ten pounds since surgery. My stools have been more bulky. I also take Metamucil in pill form twice a day and a probiotic I purchased at GNC. I also eat jelly beans, gummy bears, and gummy life savers. It seems to be working. I was never a big eater either. I have a Pepsi in the morning because I do not drink coffee but need the caffeine. Then I have a smoothie and a little breakfast; maybe an English muffin with peanut butter and butter. Then for lunch, I like Chicken Ramen and have 2 packages, and that has a lot of calories and protein. Dinner is almost anything, but I try to have pasta and a little meat. We need the protein for our muscles. I had been so weak and feel a little stronger now.
With my smoothies, I have been putting spinach, blueberries, strawberries, and a banana with flaxseed. That will stay with me about 4-5 hours and really thickens my stool. This machine pulverizes everything, so I don't have to worry about blockage. I miss my lettuce, and the surgeon told me I could eat it if I chew well. I try to eat a hard-boiled egg with my salads and skin my tomato and pick out seeds. Load it with cheese, I love Gorgonzola, and cream dressings. I used to love milk, but it seems to go right through me. I have never eaten as much as I have been eating lately, and I do feel like vomiting too, although I haven't had to. It seems I get very hungry about bedtime. So I have an ice cream bar or any ice cream with hot fudge topping. All dairy doesn't seem to bother me, just plain old milk. I am gearing up for surgery #2, which will be a hysterectomy. I am 55 years old. But they tell me my uterus is like stuck to my colon. If I am lucky, I will have that removed and have my reversal. If not, my third surgery will be at the end of December. I have to go see an OB-GYN specialist next Monday and see if they can do all this at the same time. I need to have about 8-10 inches removed from my lower colon due to narrowing. I'm still confused as to how this happened because I have never had problems with my GI system.
If you decide to add the supplements that I have mentioned, take them after a meal, as I have had whole pills come out of my stoma. Also, I have added a daily yogurt. I was getting really tired of practically living in the bathroom emptying my friggin' bag. Now, I have a little more confidence when I go out. Hope this helps because, as several other ostomates have stated, it is all trial and error. Stay away from spicy food. Imodium is good to have on hand; it will slow your stool down too.

It takes more than 7-8 weeks for your system to adjust. As my doctor always said, it takes time. I know that is soooo open-ended, but it's true. You just have to try and balance it out and slowly but surely, you will have a balanced appetite. When I was at 7-8 weeks, I was having these crazy urges. I would go on a raw clam binge, like 3-4 dozen a day, for a week or two. Then it was hot pepper salad and fresh squeezed lemonade. It's all I wanted and "In time" that all settled down. Keep smiling!

I can relate to all of those crazy food urges -- things have settled down now - this week has been almost "normal" and it has been 16 weeks!! A lot of this is attributed to the Whipple surgery - it even affects the taste of water for a couple weeks.

Ewesful

Well, slow momma, it's going to take a while to get used to the raging hunger and the disappointing nausea. But peppermint and/or ginger teas helped me. Also, peppermint and/or ginger candy helps too. Bananas are good for thickening the output. But stay hydrated if you drink coffee. Sometimes I drink Pedialyte throughout the day, and that helps with hydration besides Powerade or Gatorade.

Hey slow momma, I hear what you are saying that it's only new. It really is building a routine of eating well and eating healthy foods. I've tried eating the marshmallows to thicken my stool, it really helps/works, only you'll be eating a lot of marshmallows hee hee.

Don't forget to stay hydrated!

Thanks everyone for all your replies. It's been very helpful to me. I'm still struggling with foods/drinks/and liquid-filled bags. The stoma nurse wasn't much help I used to have. With all the big cities around here, you'd think someone would have ostomy nurses... sheesh... Now that my wound is healing better and I'm starting to get stronger, I'm going to attend my first Ostomy meeting this coming Sunday. Maybe they can offer some suggestions to help me. I'm so tired of the liquid stools no matter what I eat. I'm PI-1 positive and had an ischemic bowel and am on blood thinners, so I can't really have any greens. Between that and this stupid bag, I'm limited to what I can have. I'm allergic to nuts and eggs, so that cuts more out... Am I a mess or what???? Have a beautiful day all...
Barbara

Hey, Slow moma I had my colostomy in 2008. Last year I came down with leukemia. During my chemo, I would get dehydrated. The doctor told me to drink Gatorade. He said it was almost like getting a transfusion. Also, if you watch any football, you will see the football players drinking pickle juice for dehydration. Also, go to a health food store and get liquid vitamins. Our bodies will absorb them better than pills.
Also, rice will help the stool become more solid.

If you eat three full meals a day, you might be better off. Maybe you wouldn't be hungry so much of the time. Another idea is to eat snacks rich in protein, not just empty calories. I was not a big eater either before my ostomy (even though, like you, I am a big girl). After my ostomy, I started eating regularly and including (at first 3) 2 snacks that are low calorie high protein snacks. This solved the hunger for me. I am rarely hungry anymore. I have a light breakfast, a standard size lunch, an afternoon snack, a standard size dinner, and a snack at 8:30pm. It seems like a lot of food to me sometimes, and I do skip my afternoon snack sometimes, but it keeps things even. It keeps my stoma working, keeps me from being hungry, and provides the nutrition that I need. (I too take potassium, magnesium, and B-12). Before my surgery, I would often be anemic from the little food intake that I would have. I used to have to take iron every day a couple of times a day. Since regulating my food, even planning what I am going to have for the day the night before, eating has just become a routine for me. Something I know I have to do for my health. Beyond planning meals and snacks in my food journal, I find I don't even have to give it much thought. Just stick to the plan. You might want to try doing this if you think you can. Lee