Questions about ileostomy bag/diet: Volume per meal? Caffeine? Gas management?

Hi, don't have a bag yet but we are in the process of scheduling a colonoscopy before surgery to do ileostomy and probably total colectomy. I have been on a fairly restricted diet due to motility issues, so a lot of what I've read about easing in after surgery is what I'm doing now. The biggest change will be volume, drinking before and after meals, etc. My dietitian that I met with once said 1 - 1 1/2 cups per portion of 6 meals a day - don't always do that and certainly do more with liquids. After surgery - and later - is there a suggested volume to consume per meal? And do you really have to give up caffeine? I have a hundred questions but one from my husband - what do you have to do to deal with gas - does the bag inflate and risk leakage, is the smell confined to the bag or shared with all? Lots to learn, want to prepare all I can. So thankful to find this group - thanks in advance for any suggestions you can give to an almost newbie.

I don't have an ileostomy so I'm not much help with the fluids or food, but once you get your bag, all you have to say to your husband is...."Would you like me to burp my bag right here?" He'll never bother you again. Good luck with surgery and ask for your stoma to stick out a bit. Having a bag isn't really that bad unless you want it to be.

Hi!

I've had a colostomy for 13 years. I was very afraid before the surgery of the 'unknown'. I remember thinking, how is this going to change my life? What am I going to wear? Is everyone going to know I have this?

I can honestly say it's made my life easier. No one knows that I have it, unless I tell them and they are always surprised when I do tell them.

The smell is contained in the bag and is only released when you choose to release it. In the form of letting the air out, (burping the bag) or changing the appliance. I have found a bag with a filter is the best for me. I'm able to keep a sticker over the filter and when I need to let some air out, I can just lift the sticker and the air goes through the carbon filter with no smell!

You'll do great I'm sure! Good luck with your surgery and just take it one day at a time. If you have any issues, make sure to reach out to your stoma nurses, they have so much knowledge and tricks to help with all sorts of problems.

Hi Gardengirl, first of all, welcome to the site. You can expect a steep learning curve, but as long as you stay positive, you will be fine. My life is actually much better now, and easier, since my surgery. I have had my ileostomy for just over a year and a half. You will hear some conflicting advice and information, essentially because everyone's experience is different. Some of it depends on why you are having the surgery. People who had Crohn's or ulcerative colitis can develop a lot of scar tissue which can affect how easily output passes through their small bowel. They may have more difficulty with certain foods and have to adjust their diets. Some though, like me, don't have any issues at all and can eat anything. You don't say why you are having the surgery but you mention motility issues. My life was one big motility issue! I had severe constipation most of my adult life and that is why I eventually ended up with a ruptured bowel and my ileostomy. I do have to drink lots of water and/or other liquids, but it's something you get used to. I haven't really measured how much I drink, but it is a lot. I fill up a big jug of water every day and add a little salt to it as you can end up depleting yourself of sodium. I also have a smaller water bottle, maybe 20 ounces, which I refill a couple of times throughout the day. I drink a big glass of water after every meal, and I eat three regular meals, plus a couple of snacks throughout the day. I have never heard anyone say anything about giving up caffeine! I don't know where you heard that. I don't use it myself, but know that lots of ostomates do. The only thing I've heard is that caffeine might cause your stool to be looser. You will have lots of questions going forward, and we will be here for you, so don't hesitate to reach out!

As far as diet goes, right at the beginning, you should take it easy until you know how well you can handle foods. Anything that is hard to break down, like things with skins or seeds, nuts, very high fiber foods, start slow, small amounts to see how you tolerate it. Chew really really well (important) and keep well hydrated. There is nothing that is off limits for me, and hopefully you will be the same. Good luck!

Terry

I've had my ileostomy for almost 2 years now and wanted to share with you a couple of my experiences.
First - I was so happy to find this website - it took me over a year to find it and you are lucky you found it now. Everyone here is friendly, helpful, and most of all understanding of your situation.

Second - I gave up my coffee for several months thinking it was a bad thing - not so - in my case and I was told by a drug monitor for the drug "Brilinta" to go ahead and have some coffee - so I did and there was nothing like that morning cup of coffee to make me feel more "normal" again! And that is always my goal! Now a dietitian may not agree. But here is my thing - dietitians, doctors, lawyers, politicians - I don't always agree with them either; know your own body and pay close attention.

Third - gas ....I have not found it to be any issue at all - I wear a one-piece bag with no exhaust system. If I drink real milk, which I love and rarely drink - my bag will inflate - my happy hour adult beverage with Diet Coke can have the same effect but at my age I don't really give a flying flip. I merely disappear to the loo and release it- I look at this as a huge benefit - a controlled fart - how lucky is that at my age?!

Not to worry too much - it all takes a little time but you will be fine - just remember to try and keep a good sense of humor and when you have an attitude choice to choose good or choose bad - always choose good :)

My very best wishes to you for an easy journey and good health soon and a virtual HUG. JB

A controlled fart.

Thanks so much for your very helpful response! BTW, I haven't lived in Massachusetts since 1985, but I was born and raised in Natick. I still have one sister in Grafton, but the other two siblings are in New York and Maine. We all have autoimmune disease, but I, the youngest, am the sickest. I have had Crohn's and Autoimmune Hepatitis for over 20 years, and then kept adding to the list with new diagnoses, but probably they were just hidden, not really new (listed on profile). I have been blessed in surviving this long, now with Primary Biliary Cholangitis (autoimmune liver disease #2) and liver disease #1 being resistant to treatment. I am on 6 mg of Tacrolimus in addition to 20mg Prednisone and Entyvio for the Crohn's, and today just had likely squamous cell removed from my arm that is growing fast. We are dealing with stool leakage and bladder too, but it takes a pound of dynamite to move anything, still very constipated. Testing showed the problem is mostly from the colon down, so with increased cancer risk (always have pseudo polyps), I sought a doctor who could give a new plan than where I am. Anyway, thanks again for the support!

Good advice from all. You can assure your husband that with an ileostomy there will be days when you can actually say your shit don't stink! Guaranteed he will reek way more than you in the bathroom. Any output usually just smells like a funkier version of what I've eaten. The only time I've been aware of a strong odor when emptying is when I've eaten fish/seafood, and as I rarely eat these I usually come up smelling like roses (well, sort of).

Definitely don't need to give up coffee, perhaps not straight after surgery, although I did as on my surgeon's advice, "eat and drink everything you fancy", as I was severely underweight and having had Crohn's disease for several years before the op, the return of an appetite was a wonderful thing, I basically lived to eat. 14 years later I have the opposite problem now but strangely enough the only times I've been healthy in my life is when I'm a heifer!

I can eat all the foods "apparently" an ileo should avoid, everything in moderation is fine by me.

Good questions and you came to the right place for answers. You will get plenty of feedback here! Me, I have had an ileostomy for 28 years with very little restrictions or limits, and I eat plenty sometimes. As far as gas, it's controlled release. Find a product called Ostyo EZ Vents, it helps a lot.

Good luck.

I will be praying for you.

Cplumber

Welcome to the site. Best wishes for the upcoming surgery.

Plumber gave advice a little while back about emptying your bag. He said to flush the toilet and then empty as the toilet water starts going down. I finally tried it. It is the best way to empty, especially if you have liquidy output.

Welcome Gardengirl.

I have had my colostomy for 2 years now. I drink 1-2 cups of coffee (with caffeine) in the morning. Then I make a big pot of very weak tea and sip on that all day. That way I get all my liquids needed every day. I limit my diet so I have very little gas. But if I do, I just go in the bathroom and let the air out. I do use pouches with a filter but I cover the filter up because of pancaking. Good luck with everything. Keep asking questions. This is a wonderful, helpful group of folks.

Hi Gardengirl, welcome to the site. I've had my ileostomy for 30 some years due to Crohn's, and what others said is all good advice. The part about having a stoma that sticks out a bit is one of the most important things to discuss with the surgeon, and also the location as you don't want it in a crease as you won't get a good seal and leaks will be a problem. As for fluids, I don't limit myself to any one thing. I drink a variety every day, but like others said, carbonated drinks will fill your pouch with gas, but that's easily burped out. Keep asking questions; someone on here will have an answer. There is another site, uoaa.org, that has a lot of info on it. Good luck.

I have an ileostomy for two years now. I too was scared at first, but now it's a part of me. The only problem I'm having is my dog won't sit on my lap anymore!

Hi MD, I have the opposite problem as my dog. A 30lb. Staffy mix jumps on my lap and plops down on me, usually before I can put my hand over my stoma.

I got a 93lb snow leopard that will lay right on top of me. I have no idea why pics on here flip sideways sometimes. ‍

Hi Gardengirl,

I've had an ileostomy for 14 years and getting it was one of the best decisions I ever made. I had a proctocolectomy, so I have no colon or rectum. With my Crohn's Disease, I had no mobility issues, so I don't know that my experience will be the same as for you. One of the shocking things for me was the odor, so be prepared with odor control. I used hydrogen peroxide for years and am now using M9 Odor Eliminator. It does a great job and doesn't cause as much gas as the hydrogen peroxide did.

Finding the right bag system will make a difference. I use a 2-piece system with a barrier ring. I change it about every 4 days. You will occasionally have leaking issues no matter what you use. It just happens. You may not snap the system in well or you'll eat too much hard-to-digest food at once. I keep spare supplies in both of our cars for emergencies.

As far as my diet, the only things I avoid are raw veggies like broccoli, carrots, etc. I can eat them in small amounts, but I chew and chew and drink lots of water. I also limit the amount of beans I eat. I love them, but too many make me very uncomfortable. I drink a lot of water, but I don't measure it. If I feel like I'm starting to get a UTI, I know I haven't had enough to drink (I have no idea if this is unique to me, but it's something I've noticed over the years and happens rarely). I drink caffeine and alcohol with no issues. I've never noticed an issue with drinking carbonated beverages either.

I had a blockage only one time and that was after scarfing jumbo shrimp cocktail. I didn't know it was hard to digest. Fortunately, the stuff they gave me to drink for an endoscopy at the hospital helped unplug me, but I keep calcium citrate on hand just in case, after I read another ileostomate used it when needed. That is NOT doctor-approved, but it works in a pinch and has saved me 2 other times when I had issues with no output. Proceed with caution as it can dehydrate you which is why they don't recommend it.

I also recommend tummy control high-waisted underwear. It's not the sexiest underwear, but it really helps keep the profile of the bag low. It gives me the confidence to wear shirts tucked in when I wear them. I also use smaller bags when I'm swimming or at the beach. This too helps keep the profile low.

I hope this helps! Good luck to you!

Hi Melhourton16!! Reading this feedback gave me much hope. Due to a severe infection of CDIFF where I almost died, I ended up with an ileostomy. I'm really struggling to feel "normal" again and find clothes that I can wear that hide my bag. I want so desperately to get back into my jeans, but it's only been 5 weeks since my surgery. I'm still trying to figure out what foods are best for me and won't cause a negative impact on my body / stoma. I pray that this gets easier and I start to feel better about leaving the house. Right now, I feel extreme anxiety when I leave the house; constantly thinking about the potential of my bag filling and/or leaking while I'm out.

I appreciate any information / feedback that you have to help me with this journey. My doctor tells me that they will "eventually" reattach my small intestine, but due to the severity of my infection, it will most likely be 6 months before they can do that.

Thanks in advance for any feedback you can provide.

Tammy

Hi, I'm Marsha, and I've had my ileostomy for over 55 years since I was a kid of 15. That was back in the dark ages regarding supplies, assistance, and guidance... there were no stoma nurses, and surgeons, and even gastro doctors weren't familiar with maintenance issues... It was others with ostomies who visited patients and shared support. The ostomy Assoc... has local meetings and they were very helpful... But as time went on, I became as familiar with the procedures, and even did visiting, especially with other "kids"... Eventually, I married a guy with an ostomy, but that wasn't enough to keep us together.... and eventually we divorced. But we did have two sons who inherited his Crohn's and my UC. But they are maintained by medication and haven't needed surgery. As for your questions.....which are all quite important and normal... But it's like "how do you take care of a new pet or newborn baby"... You may know the "rules"/ current thought, but remember to adapt them for yourself. Output with an ileostomy is more liquid than with a colostomy. If you have no large colon, you need to replace liquid more frequently, especially in summer... I've always dehydrated easily, so I always drank a lot of water... If doctors recommend 8 glasses a day......do that or more. Caffeine? That's your decision... It never bothered me until recently....(more to do with age and anxiety than with ostomy function). Personally, I had trouble with some raw foods (celery, cabbage, some nuts, not others, carrots....and poppy seeds (pastry caused a blockage)... Hold off on those and test taste.....food you're not sure of... A stoma therapist or dietician will have specific ideas, but your digestive system is "yours".. So although I could eat corn on the cob.....I didn't do well with apple skin... Not a real problem, just some discomfort when the skins balled and had trouble getting out... The best advice I can give you.....is develop the confidence to test foods and assess what feels good.....and what causes upset.. You will know soon enough, without a need to second guess.. And you can always write to people on this site.....They are wonderfully helpful... Best of luck to you.. Marsha...

I've had mine 11 months and so far I'm never comfortable. When I first got my ileostomy, my bag would occasionally inflate. But I've changed to a different bag and it almost never inflates anymore. Can't seem to find comfortable clothing either. I don't eat any salads anymore. I stick to mostly proteins and easy-to-digest foods. No raw veggies either.