Leakage

[ritucci1]

I have been experiencing leakage on a daily basis for approximately 4 weeks. I've tried different rings and nothing is working anymore. I had my ileostomy surgery in 2016 and this is the first time this has happened. Naturally, I've had leakage before, but never everyday for so long. I have gained some weight, approximately 20 pounds since my surgery I have a belly now. However, I was only 104 lbs and needed to gain weight. I'm about 122 lbs now. The after surgery literature said not to gain more than 6 lbs. Is the weight gain a factor? Could my skin have become resistant to the barriers? I am at a loss.

[ileo73]

A couple of things you might try

Changing to light/soft convexity

Cutting a larger hole

[Danh]

When I had major issues like this I had also gained weight and with that my belly shape changed. After a visit to my ostomy nurse they recommended that I switch to convex (I had a 2 piece system) flange instead of flat. That one change mostly solved the leakage for me and I had endured a lot of pain and discomfort with skin irritation, itching, blowouts etc. etc. I think your belly has changed shape from the weight gain and it's worth asking your supplier for some samples. If you already have this in place, then its worth checking the size of your stoma. It may well be the opening might need to be modified for similar reasons of the stoma's size. I really do envy those who seem to just sail through having an ostomy with no skin issues!

Hope you find a long-term solution!

[Diane C]

Haven't been here for a while. Also wanted to address leakage.

Yes, agree that a substantial weight gain can necessitate a change in product or pouching system. Can you check with an ostomy clinic near you -- or a wound care clinic?

I switched from my colostomy to an ileostomy in 2015. Almost daily leakage on the side of the barrier and underneath is SO exasperating. I now need to change my Convatec high-output 2-piece system every other day. The surgeon placed my stoma on top of a (MACE) scar for the abdominal skin dips there. I fill the crevice with pieces of Convatec Stomahesive strips or Brava paste strips. Then use a Brava round seal (or another brand) around my stoma. I secure all this with curved Brava strips and sometimes add Hy-pink tape-- and over everything use a medium Sure Seal.

I also have Exocrine Pancreatic Insufficiency (EPI) now so take enzymes to help with absorption AND take diphenoxylate a few times a day -- stronger than Imodium. I visited a stoma nurse recently who suggested some ways to thicken the output but that will still leak. She showed me 2 different "barriers sheets" -- large square shaped flat barrier sheets to put over everything (except the pouch) but I'm guessing I'll leak below it but will try. Anyone use this?

ALSO, I now order a support belt through Nu-Hope which is custom-made. You pull the pouch through a hole and the belt closes tightly with velcro. This was to "hold everything together" and improve my posture. I ended up leaking on the belt which is washable. Oh, well!

Are there ANY new products out there? I'll check The Phoenix but I don't think so. Maybe the width of the seal around my stoma (which protrudes the correct amount) is wrong.

I saw that Hollister did a study and many ileostomates don't get enough sleep due to fear of leakage or actual leakage -- and that includes me.

Any new ideas out there? The leakage usually occurs after pancaking around the stoma. Inserting Brava deo or an oily substance inside the pouch hasn't helped. I'm trying to eat less at one sitting and not before bed -- and cut out dairy. Really perplexed! Wish I could help others with leakage but searching for answers, too!

[fapope]

Ileostomies leak more than a colostomy. Well mine did. This is what assisted me. Use a drainable bag and empty more often, try to keep output below the level of the stoma. When you drain the bag you might also flush it with a little water. Consider making a template for an exact fit around your stoma and cutting your own bags. I take it you are already using a convex bag which puts a little more pressure around the seal. Ie a Hollister convex ceraplus. They also have a second adhesive barrier in case of leaks. Sweat and oil can reduce adhesion. Can you wash the skin any better? Such as showering without a bag. Try a stoma adhesive paste. You will enhance adhesion by using a hair dryer to warm the bag and your skin before they are joined (This is quite important). You need to stretch out when applying the bag. Not crouched over. So there is less tension on the bag to skin barrier when standing. Lie down after putting on a new warm bag on and use a stoma belt for 10-15 minutes. The glue absolutely need time to cure against the skin for a better seal.

[Shamrock4806]

Hi,

New to the boards and have an illeostomy for about 6 months now.

Despite visiting many "experts" none have successfully solved or put on my otosmy bag without some sort of issue.

By trial and error I've come up with this system. I'm using a Coloplast one piece with about a 1/4 inch covex. I like their product because of the otosmy belt having four hooks and wider that Holister or Coventec which only has two hooks which twist off.

My procedure is as follows:

Remove and clean area with water only. Soap will dry skin of oils and itch. Dry thoroughly.

Prepare bag cutting 1" hole, (measure yours with the guide provided) fold up bottom to seal. Pre-prepare is best.

If bleeding is active, then use StopBleed powder in small amounts as not to build up too high.

Use Medline Marathon if skin is broken and on top of StopBleed if applied. Ensure skin right next to stoma is covered, may have to stretch area to get it all. IMPORTANT!

Allow previous products (if applied) to dry thoroughly.

Next open Skin Barrier bottle and fill lightly stoma area surrounding with fluid to fill cracks and smear around on adhesive area clean skin to cover. Clear any fluid on stoma exit area, allow to dry thoroughly 30 seconds.

If the skin around stoma is rough, then use otosmy paste pressed into cracks and crevices around stoma and filled right next to stoma. IMPORTANT! Smooth so leveled.

If skin is clean and smooth around stoma, then using the rings is possible provided it's opened to exactly fit around stoma and leaving no gaps of bare skin or else it will be burned by the acid. Thick rings take longer to melt than the thin ones, if I can I'll use two thin rings on top of each other, pressing the first one firmly against the skin, then applying second thin ring.

I do like the hair dryer suggestion given by a previous poster, will try this.

Apply the pouch system to the rings or paste and evenly press around the inner area next to the stoma to seal skin, sealant and pouch together. Several minutes of heavy pressure required to get things to melt and fuse.

Apply external reinforcement strips if necessary. Conditions of high humidity and sweat usually require.

Wait for sealant to set up and harden, to bind properly. Then apply otosmy belt and wait if possible.

First sign of burning, go ahead and change the bag rather than suffering as the skin is just going to get more damaged and even bleed.

If damaged skin it will take more frequent changes to keep on top of the scabbing and applying to the fresh new skin.

Far as meals, I eat early in the morning and all day, stopping about 5 pm and only drinks like a small bit of milk as to not have blow outs and constant bathroom visits in the middle of the night. I find having something under my legs keeps me happy laying on my back all night.

My bag change frequency is usually every 3-4 days with an occasional 2 day or 5 day. Seems any "professional" who does it doesn't seem to last a day, once or twice just 20 or 30 minutes.

It's been a painful trial and error process but I've found Coloplast to be the most helpful and smarter about their product design. Their two parts don't come apart on their own like the others do, had to super glue them together.

I've found brown rice mixed with food tends to thicken the output. (Prediabetic friendly) Also staying away from salads (creates liquid), nuts (clogs!) and other tough things. Meats seem to digest well and insulin booster, good as I'm prediabetic.

I've installed a bidet on my toilet and use that to rinse the one part from the bottom. Be sure to seal over before releasing into toilet or it shoots out all over.

A water bottle could suffice as a portable bidet on trips to keep the smell down. I do use the order lubricant but only if necessary.

My biggest problem is currently curing the skin right next to the stoma, about a hairline crack where the acid first hits. This has been most difficult area to protect.

Hope this helps.

[Diane C]

Wow, Shamrock, you have quite a routine! I'm sorry your skin seems to get so excoriated and burns. I had to look up Medline Marathon. Your output is more acidic than mine although what and how much I eat affects mine.

I do have quite a bit of output no matter how much I eat. I also eat rice or oatmeal to thicken it. Bananas don't work well for me. However, when very thick, pancaking occurs and if at night, that will leak. It's great that you're so consistent about not eating after 5 pm. That would help me a lot but is very hard!

It's been difficult to know when the output will be watery or not. Yesterday, I consumed a liter of water -- which isn't THAT much. I usually avoid carbonation and this was lightly sparkling. That was a disaster and caused diarrhea-like symptoms for hours. I returned to "still" water and definitely don't need the gas!

I had forgotten about lying down when applying the 2-piece system -- and then using the customized belt I ordered through Nu-Hope. I don't think I wait long enough. I used to use a hair dryer and will also go back to using that. So thank you for the reminders about this. It'd be super if I could find a solution to pancaking on the wafter. One solution is to eat much less after 5 pm.

[Diane C]

PS I've gone to see an ostomy nurse several times. I DO have a belly now -- and esp when I'm gassy. They didn't recommend appliances with convexity but did encourage me to use the Nu-Hope belt which is customized by size. My stoma sticks out pretty well. The last ostomy nurse DID suggest various ways to add "fiber" to my food plan. NOT Benefiber or metamucil or anything like that. I've been concerned about doing this because more bulk seems to add to pancaking on the wafer but I can try. She recommended this probiotic: Visbiome. Years ago, I (and some of of you) took the costly probiotic VSL DS (powdered and refrigerated). This is the same and does contain a small amount of lactose-free dairy. She mentioned it as an option, esp because I have Exocrine Pancreatic Insufficiency. Do the rest of you take probiotics on a regular basis? Also many years ago, my GI specialist suggested "Align" but a nutritionist was against it.

These were the kinds of GI-friendly fiber she suggested -- to use ONE of them -- starting with a LOW dose with meals and slowly adding to it:
--Ground flax seed powder (I tried this -- led to much gas -- and flax is an estrogenic which I usually avoid because of breast cancer and avoiding estrogen where I can)
--Just Better Fiber (Corn husk)
--Heather's Tummy Fiber (acacia)
--Sun Fiber (from corn)

Do any of you add fiber to your diets?????

I take diphenoxylate atropine instead of Imodium for diarrhea. It used to work well but I seem to need more as some years have passed and it can lead to sleepiness. She advised me to ask my GI doctor if I can use this Rx off label for diarrhea: Cholestyramine. It can help remove bile acids from your intestines. For those with acidic, burning output, it may help.

Thanks and good luck!

[Shamrock4806]

I've been monitoring my diet and output following this guide

https://sirona-cic.org.uk/wp-content/up ... -bleed.pdf

if too liquid like too much then snacking on soda crackers and dried apricots to thicken. Bananas seem to clog more and peanut butter leaves my skin greasy and oily (use as needed to oil skin)

Naturally if the flow is more liquid I find less instances of pancaking the wafer. I do sleep on my right side (where my otosmy is) and my back, so this may be reducing pancaking.

If I notice pancaking starting to occur (usually when laying flat), l'll stand or sit up to get the contents away and down further. I guess the object is not to get the flow to thicken too much.

Drinking lots of water, if not urinating or if so and dark, not good need more water.

So my approach is to be runny and then adjust to thicken a wee bit so the flow isn't too much that I can't put a bag back on.

My problem now is healing irritated red bumpy skin around recessed stoma. I attach bag when flat so I can stand and walk but sitting for awhile like driving puts strain on my convex and skin causing detachment and leaks

I'm fine in car most of the time as I can recline some, but more straight back seating causes issues.


Update: Found out the problem. Granulomas.

They bleed and thus loosen the adhesion between paste and skin causing more irritation from flow acid.

https://www.oakmed.co.uk/help-advice/ad ... uses-them/

Also I'm back to drowning the area around stoma with skin barrier after applying Medline Marathon as this approach was reducing the granulomas.

Jesus, what a learning curve.