Transitioning from Colostomy to Ileostomy: Seeking Advice and Experiences

Hello,

I currently have a colostomy that I've had for about 20 years. I had this done because of terrible constipation issues that were ruining my life. I irrigate my ostomy every morning, where everything typically evacuates, and then I'm continent the rest of the day. In the last year, the ostomy has stopped working. When I irrigate, I mostly get water back out with very little stool. I've had to use laxatives to evacuate, which is a 12-hour process and runs the risk of blowing out my bag. It's made working and living very difficult. I'm so careful about what I eat in hopes of preventing constipation (no gluten/sugar/alcohol and tons of fruits/veggies). I'm pretty much miserable all the time, backed up or cramping. I'm considering having an ileostomy placed, but I'm very worried about the lifestyle change, namely: having to wake up during the night to change bags, major diet changes that might be necessary, fear of dehydration, uncontrollable gas, blowouts/leakage, and skin ulcers. I want to make sure I'm "trading up," so to speak. Has anyone transitioned from colostomy to ileo, and what has been your experience? Was it a good choice? I want to make sure I have a better quality of life, not worse. I also travel frequently and fear the complications of that. Many thanks in advance!

Hi Bre,

Wow..........that's some change you're contemplating! Without knowing your background, I have to ask if you've thoroughly exhausted all possibilities of finding out why you're constipated? What jumped out at me is when you said you eat tons of fruits and veggies. That's because, in general, more fiber helps constipation........but not in everyone. In some, it makes it much worse. Have you experimented with fiber intake, or do you just assume more is better? Are you working with a gastroenterologist and dietitian to figure out why you're constipated? Stool sampling and imaging should shed some light on what's going on.........have you had any of that done?

I would think switching from a colostomy to an ileostomy would be your last resort. Have you exhausted all other options? One last thing to ponder is that problems with your small bowel can cause constipation. I know, most don't associate the two, but it's possible. If your motility is slowed or there are blockages, you could be constipated. It would really suck if you converted to an ileostomy only to find the problem wasn't in your colon, but rather in your small bowel. So I'd suggest you seriously consider trying to determine the cause of your constipation before you go removing body parts. If you've already done that and they still can't figure out why you're constipated.........get a second opinion at one of the larger teaching hospitals.

;O)

Yeah... what he said⬆️...

Having an ileo is no picnic...

Don't be pushed into an unprepared situation by doctors.

You have been given some great advice from Bob. I would start making some inquiries into it all.

Regards, IGGIE

I've only ever had an ileostomy and jejunostomy stoma. I had an ileostomy for 30 years. I used to drain my bag 2 or 3 times a day until 20 years ago when I had some of my small bowel removed. Since then, I can drain my bag up to 10 times a day. It has never been a problem or stopped me from doing anything or going anywhere. I rarely have to drain my bag at night; I can't even remember the last time. I've never been dehydrated and have never had a blowout in all my 30 years. I've had a few leaks; the last one must be over 20 years ago. I know I will have one again sometime; it's just part of bag life. I can eat anything except pineapple. I have adhesions, as lots of us do, so that can cause problems at times.

How to Adjust to Life with an Ostomy with Bruce | Hollister

Thank you so much for your reply. Can you explain what you mean by "adhesions?"

Hi Bob,

I appreciate your reply and thoughtful inquiry. I am a T-12 paraplegic and have been paralyzed for 27 years. I have a neurogenic bowel, and being paralyzed unfortunately takes its toll on digestive organs. Being constipated is part of the crap deal you're dealt as a paraplegic. I have tried several medications, drink Smooth Move tea every night, take high doses of magnesium, have undergone a colonoscopy, have quit taking every medication that may possibly have caused it, etc. I am currently seen at Shepherd's Center, which is the largest and best spinal cord hospital in the US. I have a GI who specializes in paraplegia. I don't have a blockage, and I have to be careful with fiber because soluble fiber can turn into concrete in your gut if you don't have enough fluids on board. I have to monitor and be careful with fluids because I'm paralyzed and also have a neurogenic bladder that's hard to control. I would really love to hear if you have any thoughts or input on managing an ileostomy and what your experience has been. As you can tell, I don't have many good options, and I'm trying to educate myself the best I can before I jump into the procedure. Many thanks for reading and caring :)

Hi there and thank you for responding. No one is pushing; I'm just coming to a point where I can't live the way I'm living anymore. Can you share what the pitfalls of an ileo have been for you? When you say "no picnic," how have you struggled?

Hi Bre,

Thanks for all that info. You are way ahead of where I thought you were. I have to run to work right now, but will continue this conversation later when I get back. Now that I know what's going on, we can have a good discussion and I understand exactly what you're asking. Talk to you soon.

;O)

Hi. Yes, I can share what it's like to have an ileo for 8 years.

I understand you are just exploring options and running out on some, and thinking an ileo might be beneficial.

The #1 issue is leakage. Getting a proper seal means the stoma has to stick out and not be recessed.

Everyone experiences this due to a recessed stoma or a well-placed stoma—bad adhesion.

The appliance adhesive can have skin effects—allergic reactions resulting in red irritation and blistering skin around the stoma. In this case, no adhesion is possible, and some use sheets with the stoma diameter cut out. It just makes a larger surface for adhesion.

Dehydration will cause kidney disease. And your output is mostly liquid, causing this to happen. However, Imodium and certain foods help slow down and bulk up output. This helps you retain nutrients—needed nutrients that will normally be flushed out of you. After 1-2 years, you will think nothing of it once you fall into a routine. Second nature. But initially, it's a trial and error thing.

Eating right.

Getting fluids right. Having a good seal—appliance. Right.

I'm sorry I didn't know your full story. Now I do. I hope this helps. Others will chime in.

We have a few members with SCI. I hope they chime in too.

Thank you so much for taking the time and giving me this info. I am very scared of making the wrong choice, but I'm also growing pretty miserable with a problem that's sliding downhill fast. It sounds like you've managed it well and have found a balance that isn't impairing your life on a daily basis. Many thanks.

Hi Breebie, I've never had a colostomy, only an ileo, so I have no comparison. Ileo output can be more liquid and more constant throughout the day. I empty several times a day, use M9 drops for odor, and am so grateful I am no longer in the pain I was in with ulcerative colitis. My leaks are very rare, although I had two periods of about a month each in the past five or so years where I did leak - no blowouts, just leaking under my barrier ring. I never found out why, but they did go away. Emotional and physical pain is a huge motivating factor in our decisions. I hear "I can't live the way I'm living anymore," and I hear that. Every decision has pros and cons. You just have to weigh yours to choose something that gives you a better life.

Thank you for sharing this information. How is dehydration and diet treating you?

I eat anything and everything except quinoa, which put me in the hospital with a total blockage. To be fair, I made it at home and probably didn't cook it long enough, so it continued to expand in my intestines. Still, enough to be a little traumatic… dehydration isn't an issue. I try to drink enough plain water and water with a splash of OJ. I'm not always successful, but it doesn't affect my gut; it just makes my head hurt more.

You are welcome.

Yes, we all adjust over time. I was trying to put myself in your shoes, and I reviewed what Brother Bob wrote earlier.

Most of us with an ileo had no choice, option, or time to decide about it.

You have some time, and note that no two people are the same.

Some love their ileo. Others hate it.

Are you able to stand and use your hands? Able to sit on the loo?

The other thing is that it sounds like your issues might be related to the small intestine. Bob knows this because he has SBS - short bowel syndrome.

If the surgeon cut off more small intestine than usual, you will have some serious issues. Bob will explain. This cut at the small intestine, or removal of it, gives you complete no control of output. It's something the doctor won't know until he gets in there, maybe. Again, Bob has this, and he's quite knowledgeable and experienced in managing that small colon. Sit tight. He will be back.

I had an emergency colostomy back in March of 2024, and the doctor did a terrible job. I couldn't get a bag to fit and hold, thinking of changing up to 6 times a day. I went in for a reversal surgery and had a surgical complication that required the new doctor to give me an ileostomy.

My ileostomy works the way it should 85% of the time, but it is constantly in movement, leading to lots of bathroom breaks. I have tried Imodium, but it only slows it down for a couple of hours. I don't have the dehydration issues that many do, but I drink a lot of water, which adds to my output.

An ileostomy is going to require more frequent emptying of your bag, and it's definitely a learning curve, but it is doable. I hope this helps.

Can you share more information about gas? I'm wondering what that's like with an ileostomy. Are you constantly passing gas, and is it loud? I don't know how different that part is from a colostomy versus an ileostomy.

Oh gosh, I am so sorry you've been through all that! How frustrating. It's a good reminder that I've got to be very selective with my surgeon!

I will chime in on the passing gas w/ and ileo question.

Gas enters the bag because of diet.

Drinks, foods, etc. will give you gas that will blow up your bag like a Goodyear blimp.

Stoma farts happen. They are noticeable. Can't say how loud though, but I'm sure someone nearby will ask, "What was that?" Or that look. I'm not sure how a stoma fart compares to a regular good old fart naturally, out the butt hole, but...

You won't smell the fart with the bag. Which is a good thing. But depending on where you "burp" your bag, you could probably empty a waiting room in no time flat.

Yeah, that's a stink bomb. 🤭😲

Yep, I do pass gas that goes right into my bag, so I am the loveliest smelling person in any group of coloned people! Not constant and typically not loud. If I sense I'm going to make noise in a quiet room, I press my hand against my stoma gently, and that works.

Breebie, you sound like an absolutely wonderful person, one who faces life's challenges with openness and courage, and I admire you for that. I had permanent ileostomy surgery six months ago. It was a long and difficult surgery, and an equally tough recovery, which my surgeon prepared me to expect. Adjusting to an ileostomy can be difficult and stressful both physically and emotionally. Six months in and I still feel most comfortable at home, although a few months post-surgery, I continued with the activities I did prior to surgery: book club, regular lunches with friends, dinner with my husband, bridge, etc. It is not easy, but it is doable and less stressful as time passes. With everything you've managed in your life so far, I have no doubt you can adjust well to an ileostomy. The mechanics of the pouch (choosing the one that's right for you, emptying, changing, etc., diet, hydration, gas, leaks, skin care, clothing, travel, etc.) can all be managed. However, I agree with earlier writers (especially Bob) and encourage you to find an excellent surgeon with the expertise you need. Find a doctor who is not only highly skilled but also able to discuss the benefits and pitfalls of your choices. As difficult as this journey has been, I am grateful for it. I can now visit my children and not be tethered to a bathroom or too sick to go out to dinner all the while trying to keep the misery of all that to myself so as not to worry everyone. An ileostomy is inconvenient, yes, but my surgery has improved my quality of life. I read something recently that made me aspire to be more like this writer. She said, “For goodness' sake, people, it's just poop, not nuclear waste.” All the best to you.

KB

Hi Breebie

I have had an ileostomy for almost 50 years. On occasion, I have had blockages from eating too much fiber at one time. Once it was from eating too many raw carrots, another having slim fast with a lot of fiber, another from eating cauliflower rice. My point is that you might still encounter a blockage or constipation. I would exhaust all options as to why you have constipation because this is a big surgery. You are correct that with an ileostomy, you may have to empty it a couple of times per night. I usually have to empty within half hour to 1 hour after eating. I use a very old fashioned type which I can get away with changing it every 6-7 days. It has an opening at the end to drain. So, my advice is to proceed with caution and find out why you are having your issue and if there is a solution before any surgery. Find a "GOOD" gastroenterologist. Best of luck!

Thank you so very much to everyone who has responded with information and personal insight. There is a lot to consider and of course, ileo is a last resort. There really is no other way to communicate with others who have an ileo or to gain their perspectives, so I genuinely appreciate everyone who posted here. It has helped me so much. All of you are fighters who endured through some sort of difficult health battle and it helps me know I'm not alone. Much gratitude to you all!

My colostomy passes gas, but I use bags with carbon filters that allow gas to leave the bag and do not omit an odor due to the filter (Hollister New Image). Is there a particular reason why these products would not be suitable for ileo?

Hii.. we ileos also have filters built into our bag, too.  however bc of our high liquid output, once the filter gets wet, it don't work. I believe there is no difference in the product line meaning ileos and colostomy folks can  exchange appliances. .

Not long ago, a topic surfaced saying Hollister filters caused leaks. Quite  a few manufacturers also had defective bags.

U speak of a  product from Hollister. I'm unfamiliar with hollister products.

I'm glad it works for you. 👍

I'm not passing gas constantly and once in a while it will make some noise. If I'm having a lot of gas, I use GasX and it really helps. It's more that it's uncomfortable why I use it. It depends what I eat.

I had a colostomy for 9 months before eventually getting an ileostomy. I was worried about the transition too, expecting leaks and having to empty all the time. And to be honest it's not that much more work. Empty more often and softer output is the only difference. With my colostomy I would only get major movement in the morning, then dribs & drabs throughout the day but never had to empty or change. With my ileostomy I have to empty 5 or 6 times a day and have never experienced a leak yet (6 months post op). I would 100% recommend the surgery if it solves your problems.