Constant Leaking and Burns: Seeking Solutions for Ileostomy Bag

I have an ileostomy, so leaking is going to happen at times from the stoma shrinking to its final size. I've completely changed my two-part bag three times in the span of 4 days due to it leaking. It's not leaking outside the bag, only where the body sticker plate that is cut around my stoma to the perfect size. It's just next to and around the stoma inside the bag. When it was time to change it, my skin under that adhesive was so badly burned. A red ring was made right around the stoma, and it was extremely painful to get that treated. Now the first two changes were by a nurse. They didn't do anything wrong, it's just that my stoma seems to be shrinking in days rather than the prediction of weekly. I was told I'd need to resize once a week because the surgery makes the stoma swollen, and that swelling will slowly go away. Now, of course, my body is different. I'm a very small person, 123 lbs, 5'6", and I wear a small in every clothing department. I'm also very young, so my body heals faster, I guess. I'm only barely a week in after waking from the surgery. I don't know how well I can stand this if it becomes a daily thing. It hurts, it's exhausting, and I want to be able to sleep without waking up in extreme itching and pain.

My question is, does anyone else have this issue, and how did you deal with the constant chemical/enzyme burns, leaks, and pain? Is there something I can do to prevent more leaking? Is there something I'm doing wrong? Should I go to the ER or Urgent Care?

I do have an appointment today with a nurse for supplies. I might be able to get some advice there too, but it's not the hospital I got that surgery at, so I don't know if I trust anyone else but my own surgeon and fellow ostomates with this issue.

A good ostomy nurse will be much more a fund of help and information than your surgeon.  You haven't stated what ostomy equipment you're using, but it sounds like it's not working right.  With a correctly fit faceplate, you shouldn't have the leakage you're describing.  You ought not have to re-invent the wheel.  It sounds as if someone has gotten you off on the wrong track.  Get an ostomy nurse to walk you through the process.

Do you use a ring? They are made so that you can get a seal right to the stoma. I also use a skin prep to get a better stick from the flange. To clear things up, try calamine lotion, stoma powder, diaper rash cream, and make sure the area is dry. Hope this helps.

As it has been suggested, an ostomy nurse would be a great help. There is a place on here with a lot of advice. Go to Collections at the top of the page, click on that, then click on "Premium Content". Under "General Knowledge", there you will see "Prevent Leakage". Hope this helps.

I knew someone who had a lot of trouble with leaks and she had an ileostomy. Her trouble was due to having had a number of operations before, and the area around the stoma was uneven. So, she used a paste around the stoma, then fitted her pouch. This prevented her leaks, but the paste, for a short while, stung. She had her leak problems sorted out by a good stoma nurse after leaving the hospital. As others have said, get a proper stoma nurse. God bless. Patrick.

Hi Max, it does sound like you are going through a pretty tough time, but it is early days, and what you describe is not that unusual. You may have to try many different products to find the one or ones that work for you, but you will. As suggested by others here, I have found that a good ostomy nurse can be more helpful than a doctor, as that is their very specific area of expertise. The companies that make ostomy supplies are always happy to send out free samples of their product, so don't be shy about asking them. Try barrier rings or paste around your stoma before fitting the pouch on. Also, products like stoma powder and no-sting skin prep can be very helpful in helping to heal your damaged skin. There are so many options and good products out there and it may take some time and a lot of patience, including some mishaps!, but you will get there. Don't be discouraged, it is a journey!

All the best,

Terry

Hi Max.

I have had four different stomas now for various reasons. My experience is that for about two weeks after each one, I have the same troubles you speak of until I get a handle on the process. You are only one week in, and I would expect you to be having these issues. I also believe the skin around the stoma will toughen up a little in due course as well. Get back to see your nurse as practice makes perfect. Actually, as I write this, I am having flashbacks about having exactly the difficulties you speak of with my first stoma. As I said, get back to the nurse. They are there for you. Before you know it, the leaking and burning will cease, and you will be good. You'll see.

Axl

Hi Max, someone mentioned a "ring". I use a 4-inch Eakin Seal to get more wear time out of each baggie. One that might help you is a two-inch Eakin Seal. These are much better than the paste which I found dissolves pretty fast due to acidic liquid output. The Eakin is like a 2-inch washer with a doughnut hole. The Eakin is soft enough to mold around the stoma. As the shape of the stoma changes, you can change the shape of the seal. Very important also is the wafer for a two-piece. I use a one-piece Hollister bag. The wafer/flange that sticks directly to your belly has a firm plastic wafer with the sticky stuff on top of the plastic. The most important feature is that the plastic flange dips inward so it is convex. The edge of the hole surrounding your stoma pushes the rim of the flange tight down onto the rim of the stoma and the tight fit helps to seal the edge of the stoma where liquid would be likely to seep under and burn your skin. My stoma sometimes looks like it is being pulled inward, so sometimes I might use a 4-inch Eakin Seal but use a 2-inch around the stoma first directly on top of the stoma, the hole is about an inch but you can warm and reshape the 2-inch to fit and fill any gap around the edge. Then use the 4-inch Eakin Seal on top of that followed by the baggie flange. If the stoma is "dipping inward around the edge I use both 2-inch and 4-inch but normally just use the 4-inch.

I hope that was not too confusing!! I have a pic of the two seals in my photos and one of the convex one-piece Hollister baggie with the plastic reinforced flange.

The seals are the same material used to heal diabetic ulcers so it repairs the raw, weepy skin around the stoma. Last time I left my baggie on a bit too long and the edge was actually bleeding a little and red raw around the stoma. One day after using the seals the skin was repaired and no longer weepy, really good stuff. A skinny person has a better chance at getting a good seal. During the extended lockdown, I gained a few pounds in the belly, maybe 5 pounds, even that bit extra flabby bit causes the stoma to dip a bit around the edges. I'm normally no more than 125 pounds but if I go to 130 I really notice it. I just snack two or three days a week instead of full meals until the dippy stoma is flat again.

Good luck

I had a lot of leaking issues the first few months after my surgery. For me, it was switching to a convex barrier instead of a flat wafer. It ended up being a total game changer. They are mostly used when the area around your stoma is higher than your actual stoma.

Update! Thank you everyone so much for replying and giving me advice. I ended up trying the barrier ring directly on my skin before putting on the wafer and it worked! No leaks so far and a comfortable fit... just super itchy but that's okay. Again, thank you everyone!!

Great news Max!

The itching might be a reaction to the brands you're using.

Get some samples of different brand rings, wipes, and adhesive removers. Now that the leaking issue is resolved by process of elimination, you can find out if the itching is an allergic reaction.

Congratulations and good luck!

E I

Nice to hear it worked. I get a little itching if the skin around the stoma is a bit raw. The Eakin ring heals the skin very fast and my itching only lasts a few hours. New good skin appears in 2 days. Amazing stuff.

Good luck.

T

Switching to convex helped me!

Jo

Hi, first time here. I am so sorry, I can relate as I have had my ileostomy for 2 months and am still having issues with leakage. It took about 6 different bags to finally get the right one! I am in the middle of testing out cohesive seals and different thicknesses. Now trying putty, one day I think it's working, 2 days later it isn't. Putty is hard to get off skin. I have changed my brands of extenders, adhesive remover, and barrier wipes. I have seen the local stoma nurse and tried her suggestions. Some work some of the time. It has got me down as well. I'm not sure how I'll cope for the next 4 months before I hope a reversal is possible. I had a volcanic type of colostomy for 4 years due to bowel cancer, but somehow it didn't happen that often. It's a regular occurrence now with yes, the burning, itching, and scratching. Sorry, I probably wasn't that helpful. I truly understand and hope you get the help you need and deserve.

All the best, keep safe from Australia

Hi Maxxe

Thankfully you got the leaking under control! The itchiness could be allergies or fungus!

Good luck!

E I

Is putty the same as the paste that can be used around the stoma to get a good level surface for the pouch to stick to? In the past, I assisted someone with an ileostomy who had leaking problems because of an uneven surface due to previous operations, and the paste solved the problem. The only drawback was some stinging for a short time. I suggest you check if there is another product beside this putty you are using that could solve the problem. Other than that, make sure your pouch is warm before applying so the adhesive is activated. I give mine a quick blast with a hairdryer, not too much, CAREFULLY. Best wishes, Patrick.