Elective Ileostomy Surgery

Hi All,

First post on here :)

Brief background on me. Diagnosed with UC in 2018. Been on medication since.

At this moment, I have two medications left. However, I'm heavily considering elective surgery later on this year. I see surgery as a when not an if, and would rather be fit and well when I have surgery rather than in a serious flare-up.

In terms of the ileostomy, I have two main queries:

Daily maintenance - how many times do you empty an ileostomy / how long does it take for the bag to fill / are there foods I should avoid / should I eat smaller meals more frequently or are fewer larger meals better / will meal timing make a large difference (not eating past 6 pm)

2. Hernias - Sports and the gym have been a big part of my life, and I'd love to continue them. I'm not looking to participate in contact sports anymore, but I'd like to take up cycling / light gym work (bodyweight exercises). As I have around 6 months before surgery, what can I do now / after surgery to reduce my risk of a hernia? I'm training my core quite frequently; however, is there anything more I can do?

Thank you for any responses, Stay Strong :)

Welcome StonedRoses,

I have a colostomy so no help but just wanted to welcome you. I'm sure lots of folks will be able to help. 🤗

Much of what you ask is dependent upon your personal system (we're all different) and circumstances.  How long it takes for a bag to fill & how often you have to empty are obviously related questions.  The answer is:  it depends upon what, how much, and how often you eat.  I've noticed that some people on here say they empty a lot less than I do, which is about ten or twelve times a day, and a couple of times during the night.  But I'm a snacker.  If I cut that out, I'd expect to fill up less frequently.  I'm retired, so I can get away with it.  Some foods will cause your output to be more liquidy and ergo lead to more frequent emptying; some don't.  You'll have to pay attention as you go along re how certain things impact your system and react accordingly.  For an obvious variety of reasons, irrespective of your ileostomy, smaller meals ought to trump larger meals, but the most important thing to remember:  CHEW YOUR FOOD GOOD.  Timing can be important.  I have an ironclad rule:  I never eat after 6 PM.  Sometimes I quit even earlier.  This helps get you through the night and is also key the day prior to changing your appliance.  Another rule:  drink lots of water because an ostomy robs a lot of moisture from your system.  RE your exercise regimen:  you ought to limited by how you see your personal abilities more than by the ileostomy.  Over the years, I have jogged regularly, worked out at the gym (until the coronavirus struck), and generally kept active.  You sound like you'll be fine.  Most of us didn't get to plan ahead...  

Henry is right Some people have high out put. The most frustrating thing for me was hearing everyone is different and and depends on what you eat.Over time you'll figute it out.For me if I have lunchmeat, cucumbers without the skin or pasta it comes out just like water or if its too much fat .Sometimes right away or up to 30 mins.They say up to 5cups a day is normal.If you notice more than that talk to your doctor.My advice is add things slowly to see how you handel it.I was scared to eat certain things and I can eat popcorn without problems and berries with seeds.Just make sure you drink plenty of fluids  sometimes 64oz isn't enough and can stress the kidneys Unfortunately I learned the this the hard way.Not to scare you talk to your doctor just to make sure and check vitamin B12 and D3. It will become easier I promise. ALSO if you have problems with leaks make sure you talk to your ostomy nurse.I had so many issues at 1st and IF I knew things in the beginning It would've made life alot easier. BUT this is the right place to talk about everything  and at times have a good laugh.Hope this will help!!!

5 cups/day? Holy sh_t! 😁 And I thought having to empty maybe 3 times/day was a lot. Pasta and lunch meat for me too. Oh, and oatmeal raisin cookies but might of been from having a lot of them in a short amount of time. 🤷‍♂️😂

I wish it was 3.Since I have to drink 100oz of water and eat every 2 to 3 hrs to get enough calories in(can't eat alot at once and have diabetes due to pancreatitis) Its at least 8xs a day.🤨

Oh my gosh you poor thing. 😟

Sorry you(or anyone) have to go thru all of that. 😘

I tend to have quite a high output stoma atm (but I'm only a new ostomate with this stoma, I had my op 3rd March this year). I'll empty anywhere between every 1-4 hours. And because everybody is different, and everyone's body is different, you might react to certain foods differently to how I react to them. I'm afraid it's just trial and error once you've had your op, see what works and what doesn't. And once you have had your op, you will probably be told to be low fibre for 6-8 weeks. If you have no idea how to be low fibre, you can ask your doctors and/or nurses to refer you to a dietician. I've also got a cheat sheet downloaded onto my phone and iPad from the Coloplast website called “Dietary Advice for Ostomates”. Just in case you're unaware, Coloplast is one of the many companies who make stoma bags.

Hi StonedRoses,  You've received lots of good advice here re maintenance and diet, so I will restrict my answer to the hernia/working out part of your questions.  Prior to my first surgery (an emergency colostomy)  I was a bit of a gym rat.  I was in pretty good shape and worked my core and abdominal muscles regularly.  My surgeon told me that this probably helped protect me from possible hernia going forward, but I still had to be really careful.  I lived with the colostomy for about a year before having ileostomy surgery.  This year was spent during Covid, so the gyms were closed.  I did do some gentle abdominal exercises that were meant specifically for people after this type of surgery, but was very cautious.  The hole in your gut from a colostomy is bigger, hence, bigger risk of hernia.  After my ileo surgery, and the closing up of my colostomy site, with plenty of healing time, I started core and abdominals again, planks, gentle leg lifts, no crunches.  I'm working my way towards a stronger core and more firm abdominals, but I know I won't ever be where I once was, and that's OK.  The hole for the ileostomy is smaller and you won't have as much hernia risk, but it's still there, and you really want to avoid that!  I do all my other gym exercises as before, it's just the abdominals you need to be careful with. 

Also, be sure to give yourself plenty of time to heal before even starting, six to eight weeks, at least, and start slowly.  Otherwise, go for it!

Terry

Thank you for all the responses they're all greatly appreciated ❤️

I have colon cancer metastatic with spread into the perineum… when I was told that the cancer was back at the anastomosis site  and had spread, the oncologist told me that the cancer would eventually occlude the ilium and require my ostomy to be re put in.  (I had had an ileostomy for 6 months, had it taken down then diagnosed with the colon cancer re occurance.). I  told the oncologist to put it back in while I was in as good health as I would ever be in rather than waiting until it became an emergency. That was almost a year ago and I am so glad I made  that decision.  I don't enjoy having the ileostomy but I don't dread having it put back either…that is just my experience…

I had my ileostomy back in 1983 so I have had time to work out ways that work for me. I empty mine maybe 4 or 5 times over 24 hours.  Depends what I eat and how much. I don't really avoid any foods but I take beano to reduce gas. I try to remember to chew well and I adjust the quantity I eat if I need to adjust my output. I change my water every 5-7 days.   I have been very lucky with mine, no major problems.
As for sports and activities, i am on the lucky side there as well. I do all sorts of activities. I bike regularly, both mountain biking and road biking. I do some weight lifting.  I took up surfing a few years ago and that has been fun, I am not good at it but I enjoy it. I love the ocean and also kayak and paddle board. I hike a lot and backpack sometimes. I have done many other activities in the past after my surgery, scuba diving, whitewater kayaking, flying light aircraft, martial arts, travel. My surgery definitely changed my life in some ways but has not stopped me from doing many things. It takes planning and putting up with some inconvenience.  I actually don't have much memory of not having an ostomy, it had been so long. I had UC and it all happened very quickly. I was in college at the time. 
everyone is different and I hope you find ways to live your best life. 

I have had my ileostomy 55 years…I was 10 :) Anyway, good answers from all, but left out an important one: frequency of emptying also dependent on what you are wearing, at least for me! Some clothing just shows a full bag more than others.

Helo SR, While I agree with all the others, I would just like to add one important aspect to your question of how many times do we empty. It depends on how much of your small bowel has to be removed. When I had my first and second surgery only a moderate amount of small bowel was removed therefore my output wasn't high and I emptied approx 4-5 times /day. Fast forward to my 3rd surgery.Now I have what is called short bowel syndrome where more than half of my small bowel is gone resulting in high output and the necessity to empty 10 times from early wake up to bedtime. I take liquid vitamins,try to stay hydrated,and give myself monthly B-12 injections for inadequate absorption.The most problematic foods for me are high fiber. 

10 times in 24 hours. Usually  4 at night. Set an alarm. Quiet all afternoon. I eat lots of anything. Eating triggers output. So far I have very little pain so I really like it. I dreaded the pain in the ass and sitting on a toilet all day. Hernia belt recommended right away. Don't stress stomach for several months after surgery. Good luck.