New to the Ileostomy world: Any tips?

I’m so glad he has you to help him recover.

As for diet, I would get a hold of a dietitian that specializes in shortgut syndrome. You can probably get a referral for one from his surgeon or primary care physician.

As for additional medication or things to help with the loose stool, banana flakes work well for some people.

As for irritation around the stoma, besides the stomahesive powder, skin prep wipes dabbed over the powder may help. Some people use ultra thin DuoDERM on the skin around the stoma first and then they apply the appliance.

When I go out in the world, I usually don’t bring any supplies, but I’ve had my stoma for many many years and I rarely have a leak (knock on wood). And if I did happen to have one, I would just go back home.

Going on trips far away from home is different. In that case, I take a little bit of everything… Wafers that I have already pre-cut, extra pouches, skin prep… basically everything that I use for a bag change I take 2 to 3 of.

I hope this helps. Please take care, and God bless.

Hello, I had my ileostomy for 3 months now after my cancer surgery. I am still learning, but banana powder, marshmallows and imodium is what I use to slow down my output. A specialized dietician is good to have. My biggest worry is ileostomy blockage so I am conservative in what I eat and how I add new things to my diet. Hope this helps.

I've had an Ileostomy for 15 years. I carry a fanny pack with:
1. a collapsible water bottle. Platypus makes a good one and Amazon carries some cheaper Chinese made ones. It's for cleaning the pouch when you have to empty away from home.
2. A spare pouch and the usual supplies needed for a change in case of a major leak. Major leaks are rare but they do happen.

As far as irritation around the stoma I would start by trying as many different pouches as you can. Most pouch manufacturers will send you free samples. Everyone is different and you have to find what's best for you. I ended up using a Coloplast Mio Deep Convex but Convatec and Hollister also were good. Search online for Ostomy pouch manufacturers and get as many samples as you can.

As others have pointed out stomahesive powder helps protect the skin. I prefer to use a pump spray protective barrier rather than a wipe

Be sure you have a Stoma Nurse that you can see promptly should the redness gets worse and you need help. If you do not have Stoma Nurses available in your area find a Wound Care Clinic which is located at most Hospitals.
The Stoma Powder never worked for me. I use Hollister Stoma Paste on my barrier ring and after two changes the redness improved and then went away.

I've had an illeostomy since Mar 23 and I eat anything I want with no problems. Just be sure and chew well.

@lmiller116, welcome. You're asking great questions. I hope you saw the helpful tips from fellow ostomates like @harrison221 @fbt217 and @ravna.

I also offer these discussion related to your questions:
- Temporary ileostomy diet https://connect.mayoclinic.org/discussion/temporary-ileostomy-diet/
- Diet and Nutrition after urostomy, Re-introducing regular foods https://connect.mayoclinic.org/discussion/diet-and-nutrition-after-urostomy-re-introducing-regular-foods/
- How do you deal with diarrhea & constipation with an ostomy https://connect.mayoclinic.org/discussion/how-do-you-treat-diarrhea-constipation/
- Wafer-related discussions https://connect.mayoclinic.org/group/ostomy/?search=wafer&index=discussions

Good question about carrying supplies with you. What to have on hand and what to carry it in. Would your husband be comfortable carrying things in a fanny pack as @fbt217 does? Or perhaps a backpack?

@florip, great tips for a fellow newbie @lmiller116. Access to a specialized dietician is really helpful. Do you have regular consults?

Hi Colleen, yes we are working with a dietician (weekly) and a doctor specializing in Short Bowel Syndrome (all through the Mayo) as his ileostomy is very high up in the small intestine and he is also on TPN nightly. It is difficult to balance his output (which continues to be 2.5 - 3 liters a day) and his overall hunger. I am currently monitoring what he eats, when, and output times. For example, he ate a plate of French fries and his output was high and quick - so no more fried foods ( yeah it was not on his diet to begin with but he wanted to try). He is a picky eater. Most of the foods that are not recommended post-Ileostomy he did not like already - so it is not him missing certain foods.
We read that someone who plays golf knows to limit food intake before going to the golf course (one of our goals is to get back to golf soon); that was extremely helpful. My husband now limits meals or snacks around outings before leaving the house.
With only 5 weeks post-op we are still on the learning curve and I appreciate all the tips we are getting as we navigate our new normal.

We do have a Stoma nurse. I may have been the problem 🙁 My role was to measure and cut (his stoma is still changing in size) and I was cutting it too big because I was afraid of making it too tight around the stoma. This was causing leakage. Now I know better and we are temporarily increasing the changing frequency (every 2-3 days) since it is shrinking rapidly.
Good to know about the paste - I didn't know there were other options beyond the powder.

Love the collapsible water bottle (and I love shopping on Amazon). thank you