Ileostomy Adjustment: What to Expect in the Months After Surgery

I am 7 months out from surgery and still have lots of output and frequent trouble with bags coming unattached. Also, I have trouble with skin inflammation. I'm wondering if my body will ever adjust and calm down to a more predictable routine.

Hello Rosie

After seven months, I would have expected you to be in a routine by now. I am guessing you have an ileostomy, which you will be emptying maybe six to twelve times per day in some cases. For me, I think it took more than six months for my innards to get used to the new arrangement. As for irritation and appliances not sticking, you should be terrorizing your stoma nurse to obtain the best setup for you. I think we all get some skin irritation now and then, but it shouldn't be a permanent state. If you don't have a dedicated stoma nurse there, find one who can give you the assistance you need.

Best wishes

Axl

Hi Rosie, what goes in must come out, so it's what you eat and how much. Some foods transit quickly for me and my ileostomy, like soups, but if I eat a beef stew that's thicker, it takes longer. But then it also depends on what I drink with it: water, milk, Gatorade, coffee. As for bags coming off, I would suggest getting a belt that hooks onto the pouch.

Have you tried other brands as well? If not, you can call and Company's will give you free samples to try.

How many times a day are you having an empty bag? Is your output very loose or more solid? What was the reason why you needed a stoma, and did you have any of your small bowel removed? They can all make a big difference to your output. If you have access to one, I would speak to an ostomy nurse or get samples of other brands of bags. Convex bags, if you're not already using them, may help them stay on longer.

Agree with Ben38. Meet with an ostomy nurse regarding bag problems. They are experts on skin irritation. Ostomy nurses also can guide you to preferred diets. Stomas should settle down within 6 weeks.

I would inquire about what you are eating. There are a number of things in a diet that could increase output such as milk products and fiber. At this point you should be emptying your bag perhaps 6-8 times per day. The consistency should be like pudding and not watery.

Hi: Education is going to be key on this new journey of yours. I suggest you check out UOAA, United Ostomy Association of America. It's our national organization. Also, Ostomy101.com. You will learn about foods, blockages, skin care, clothing, ostomy products, travel, activities, and a whole host of other tricks of the trade. You might also want to check out a local support group near you. Just remember you are not alone on this new journey of yours. We're here for you. Best of luck.

Hi Rosie,

Simple question... not so simple answer. Will things calm down... yup. But only if what's causing them stops. You didn't say what they removed to give you your ostomy. Simply put... the more they removed... the more output you'll have. The bowels absorb what you eat and drink. If you take some of the stuff that does the absorbing away... you won't absorb as much, and what it can't just flows into your bag. Your colon absorbs most of the water you drink. If you have no colon... guess where the water goes. At the end of your small bowel, called your terminal ileum, is where all the bile that your liver and gallbladder secrete into your bowels (to dissolve the food from your stomach) gets re-absorbed. If that's missing guess where all your bile ends up. So your output is a function of what your bowels can still absorb and what they cannot. And of course if any of your existing bowel is inflamed... those parts don't do much absorption either. So you need to find out what parts of your bowels are no longer there (read your doctor's surgical report on you), what those parts absorbed (ask your Gastroenterologist), and figure out how to get that stuff into your system in another way, i.e. supplementation. That's the output part. If you just leave things as they are... you'll continue to have lots of output.

The skin irritation thing also won't go away unless you remove what's causing the irritation. Conversely, if you don't remove it... it'll continue to get worse. There could be lots of reasons for the irritation, but the two biggies are an allergic skin reaction to something in your barrier products... or your skin coming into contact with what's coming out of your stoma. Both are fixable, but you got to figure out what's going on. This is where your ostomy nurse comes in. They're supposed to have the experience under their belt to fix problems like you describe. But not all ostomy nurses are created equal. Always get two opinions and make sure they jive. If not, get a third opinion. I posted on here the sure-fire way to get rid of skin irritation fast, but you still have to remove what's making it irritated or you'll get nowhere. If you need me to post that again, just let me know.

;O)

Hi Bob, that is such a helpful reply. I had 90% of my large bowel removed recently with resulting end ileostomy. I am really struggling with balancing hydration. Too much fluid and I constantly pee. Not enough and I pee next to nothing. It gets me down big time. Any help you can offer would be great. Thanks.

Hi Bob, that is such a helpful reply. I had 90% of my large bowel removed recently with resulting end ileostomy. I am really struggling with balancing hydration. Too much fluid and I constantly pee. Not enough and I pee next to nothing. It gets me down big time. Any help you can offer would be great. Thanks.

Thanks Axl! Humor always helps, and I will take your advice about the stoma nurse.

Thanks, Ron. That is helpful.

Thank you; good advice.

I also have an ileostomy and have found after a lot of thin liquid all the time, and getting dehydrated, that I needed to eat every 2-3 hours and eat a lot of carb type foods to thicken up discharge. (Bread, English muffins, bagels, pasta, etc.) Still need to keep hydrated also.

It took me over 6-8 weeks to find out what worked for me. I'm finally retaining nutrition and hydration. Once this happened, I started feeling stronger. I also take 2 Imodium when I first get up and 1 Imodium after dinner. Everyone is different, with dosing and what works for them.

My skin was also a bit angry when removing bag and adhesive ring, and my nurse recommended nasal spray with steroids in it to spray on the area at change time and that has helped also. I'll have to get the brand name of nasal spray for you if you're interested.

Hope my experiences help and please reach out if you have any questions or need clarification.

Ostomy nurse. Ostomy nurse. Ostomy nurse. They are invaluable. It took 7 ostomy systems for me to find one that worked for my skin and some of those were the same brand different systems. The system that finally ended up working for me was a one-piece, but I wanted to try the two-piece version of it and I had a bad skin reaction to it. The nurses think it was because they probably used a different adhesive for the two-piece since it needs to be stronger. My skin is allergic to a dye Hollister uses in theirs... but they are nice and sent great samples. I was also allergic to most of the tapes used, so I had to get silicone tape.

I find that eating tomato-based foods makes my output more acidic. It can even make your bag develop a hole or get under the wafer. I used Hollister 2-piece, put a ring of calamine lotion around the stoma before applying the glue, then the barrier. Your skin must be clean and as hair-free as you can make it so the barrier sticks. Diet-wise, be extra careful with fiber and eating large meals. Try to space out your food intake; there's less room in there now.

It takes time. My stoma (her name is Bertie) took 6 months to adjust but now I'm back to all former activities.

I haven't found any consistent pattern of activity for my stoma after almost 20 years, but everyone is different. When I'm getting ready to do a barrier change, I try to limit fluid intake, hoping things will "quiet down" until I finish; many times I still get output. Tomato products in the diet seem to make output more acidic and have several times "melted" the bag in tiny holes that leak. Try different bags and barriers, your stoma is "gonna do what it's gonna do", keeping the area clean is important.