Any help APPRECIATED!!

[ladydyana7]

I work for a disabled adult group home. Our client Mary, IS mentalLy handicapped, non verbal, and had ileostomy surgery in November. This is our first exposure EVER to ostomy care. We have had a lot of trouble with gas and leakage. She rolls over to sleep on her pouch all night long, which does lead to blowouts if we don't catch it in time. During the day, we catch her playing with the pouch- squishing it with her fingers, and resting her elbow on it. She has been known to rip them off, as well. We notice filters do not work. She also swallows a lot of air, so gas is a constant. We check her pouch every hour, day and night, for excessive air and any leakage. Any advice? We are burning through pouches! Prescription gas aids we can ask her Dr. about? Pouches to try? She has used Coloplast- Sensura Mio, and Hollister Premier.

[To Dream a Dream]

I am so sorry to learn of your client's problems. I use over the counter gas aids (GasX. etc.) which her Dr. might be asked about. Have you a certified WOCN (specialized ostomy nurse) in your area? https://www.wocn.org/page/Nurse_Referral Here is a link for the WOCN Society's referral page which might help you.
The major manufacturers of the products mentioned above also may have experienced nurse specialists available to talk with you. The UOAA website also contains a wealth of information including that of local support groups.
Thank you for becoming a member of our discussion board & hopefully you will find the help you need for your client. God bless.

[Diane C]

I wish I had more time. Recently had surgery. But -- try high-output pouches. Many manufacturers carry them. When I use one, I keep the spout on although it can be cut off. It makes emptying easier for me. I used dto have a colostomy and switched to an ileostomy. When I was a colostomate, I used an irrigation sleeve which is long enough to reach the toilet from a standing position. An irrigation sleeve CAN get filled with gas, too, but after I got an ileostomy I often wore one under my slacks until I felt comfortable with the higher amount of output. No filter is on an irrigation sleeve -- and I think filters are useless for ileostomates. I agree re Gas-X. If okay with her doctor, she probably can take Immodium to decrease the output. I prefer caplets but gel caps work (they can burn going down) or the liquid. Just ensure that constipation does not ensue. I've never become constipated and generally take 2 caplets in the morning and more depending on what I'm doing during the rest of the day or evening. It really helps to use Immodium before changing an appliance to minimize the output.

Why is she swallowing air? Carbonated beverages, using a straw, gum chewing, and sucking on candy can be culprits. You may want to nix those asap.

A GI doctor may be able to figure out the reasons for gas. I suffer from it also and reasons can be numerous. Reaction to dairy? Soy? Other foods?

Wishing you luck in finding the answers. Do try the Immodium soon.

[ileo73]

Filters tend not to work for ileos. That's what I've experienced and remember reading on the board.

Perhaps put some pink tape (Hy-Tape or drugstore stuff) on the edges of the wafer. Give her something to get through before pulling it off. Alternatively, try her on a different system -- she may be peeling it off because it's uncomfortable!

What's her diet like? It can be tricky. For example, I have to have carbs (rice, bread, etc) with eggs or fish or I get a lot of liquid output.

[Diane C]

Good points, Ileo73. I now find filters a waste of time with an ileostomy.

Diet really does matter and we're all different. When I'm gassy -- and often am -- although I don't like to eat gluten-filled bread, I've lately found that plain sourdough bread can help. Maybe plain crackers. Saltines don't have the best ingredients but may assist. I agree about rice. Also oatmeal helps me. Eggs always are ez for me to digest and great for protein if high cholesterol poses no problem. Chicken and fish help -- but not fatty foods. Grilled, broiled, etc. I stick to lactose-free milk, yogurt, and cottage cheese and may gear up to avoid all dairy which I do love. My GI doc told me I can't overdose on Lactaid and to take the tablets with all dairy food -- even a tiny amount of half n half. If I go long periods without eating, I also get filled with gas so there's a balance. Some fruit juices can cause a lot of gas -- due to the fructose. I don't do so well with apple juice and tend to avoid acidic juices although I'm fine with grapefruit juice -- refrigerated. No added sugar. When it comes to veggies, make sure they're cooked well. Often it can depend on the day and other factors. I'm looking into the FODMAP food plan which can help with gas and indigestion. It's complex and not easy but you may want to take a look. There are even FODMAP groups on Facebook -- but again, we are all different and have different reactions. https://www.medicinenet.com/low_fodmap_ ... rticle.htm

Hope some of this info is helping!

[nickolas]

Filters tend not to work for ileos. That's what I've experienced and remember reading on the board.

What's her diet like? It can be tricky. For example, I have to have carbs (rice, bread, etc) with eggs or fish or I get a lot of liquid output.

The new Hollister filters do not work for me either. Coloplast does have blue films you can put over the filter. Yes check diet. certain foods like salad green give me LOTS of liquid output. There is a BRAT diet that has helped many people. Bananas, Rice, Apple, Toast.

Maybe daily irrigation might be a better solution for her than the bag.

good luck, Nickolas

[ot dave]

Hi Ladydyana,
With intellectually disabled clients, ostomy care can be tricky. Especially when they are non-verbal. I work in a residential facility that houses 50 severe/profound clients, and we have several clients that have different ostomies, including ileostomies. I'll give you some of the things that work at our facility.
For leaks, especially with the ileostomies, the filters in the pouches are pretty inefficient as they really quit working when they get wet. You might try using these: https://www.shopostomysupplies.com/p-ke ... gLPuPD_BwE
You can do further google searches to find pricing that works best for your client. Swallowing air as you know is a big culprit for gas production. The best tip I have for that is to remove straws from her environment, but I don't know if that is possible based on your description of the client, they may have some feeding issues that require the use of a straw....

In regards to your client molesting the pouch throughout the day, we have found that abdominal binders have done well with keeping hands away from the the appliance. I actually use an abdominal binder myself due to a parastomal hernia. This is one link to the brand that I use: https://www.healthproductsforyou.com/p- ... gLDmvD_BwE
They don't have to be put on so tight that output can't flow into the bag, but snug enough to keep hands away. You could even put it on to where the closure is in the back so that they have a harder time being able to remove it independently. You could also use a compression shirt over the binder in order to add another layer of "protection". Compression shirts adjust well to the addition of output in the pouch.

As for sleeping on the pouch, you may have the hardest time with this... It will be difficult to keep them off of their stomach if that is what they are used to doing. You might try placing body pillows on each side to make it more difficult to roll over. You could also raise the head of the bed, making it a little more uncomfortable to sleep in a prone position.

Leaks can be caused by a number different issues. If the stoma is flush or below the skin, then you would want to try a convex flange. If the stoma is above the skin line, then you have to look for dips and divots caused be anatomy or surgery/scars. In this case it would be good to try a barrier ring around the stoma before applying the flange. They act like an "o-ring" in your garden hose and prevent output from getting under the flange. There are a multitude of different things that could cause leaks. If you can find what/where the leaks are forming, we could definitely help you problem solve. Keeping hands away, will also increase the length of wear time as well.

Hope this helps some.

David

[jstl]

Another consideration is that this person has only had the ileostomy for four months. Anyone, intellectual disability or not, would still be adjusting. Is it possible that she is just trying to explore the pouch and changes to her body? Or is she reacting to discomfort? Behavior is a form of communication. I had a similar patient (cognitively impaired, non-verbal, new ileostomy, playing with pouch) and found it helpful to take time over several days to help her explore the pouching system safely,calmly,even playfully, until it became familiar. We also made sure she was engaged in activities through the day as much as possible. She played with it much less after guided exploration.
Stoma size can change after surgery so she may need a different sized flange and opening to avoid leaks. Check with an ostomy nurse.
Leaks, as they are just beginning, can cause incredible itching. A caregiver wouldn't be able to detect the initial leak by inspecting the pouch as it occurs near the stoma. She might be touching the pouch because she itches - OR because there's some other form of discomfort. When I'm uncomfortable from itching or irritation, I take my pouch off, just like your client does. Behavior is communication.
This is one reason I'm not in favor of restricting access to the body or part(in this case the pouched stoma) with an abdominal binder or neoprene wrap as a first choice (another reason is I don't like how they feel on myself- my ileo sometimes gushes and the wraps and binders actually cause leaks in those cases). Imagine if you had a tiny bug crawling on your cheek and someone put a barrier between your hand and your face so you couldn't brush it away.
I do understand that sometimes we have to control the persons' actions to protect them and it may be the case with your client. We also need to do our best to understand why the behavior is occurring and mitigate that reason even as we use other means to stop the behavior immediately for the person's protection. It's obvious you're trying to do that, in part, by asking questions here. Thanks for looking out for your client.

[ladydyana7]

It has been an adventure for sure, but we all love her to pieces, so we want her to be as comfortable as possible. I am going to look into high output pouches for sure, Diane C.! She swallows air, because she chews with her mouth open, and has to use straws, because she has palsy, and shakes so much that a regular drinking glass would just be a big mess.
Her diet has been cut back quite a bit Ilio73, to help prevent gas (no corn, rice, raw vegetables, foods with skin like grapes and whole beans...), and we switched her to almond milk, but it really hasn't helped. Gas X takes a long time to work, and she uses it almost daily. We were hoping for a prescription gas aid we can add to her morning and/or evening medication, that would help cut down the severity of her air output.
We have recently purchased vents for burping, and they are wonderful! I am afraid however, that an abdominal binder would not work for us in this case, as she would be blowing up pouches daily. She has been known to fill a pouch with air in 5 minutes or less! And yes, bedtime has been a challenge with or without a wedge and extra pillows, as she has decided that laying on her bag is her new favorite position! Thank you OT Dave for the suggestions!
As for her messing with her bag, she fiddles with everything. She uses it as an armrest, and now it's fun to poke it when it has something in it.

THANK YOU ALL SO MUCH FOR YOUR VALUABLE INFO!!

[ot dave]

It sounds like you're doing everything you can think of...
Sometimes it is fun to poke at pouches that are full of air!
An alternative to a binder are compression shirts. I use Under Armor compression shirts over my abdominal binder. But even without the binder, the compression shirt helps keep the pouch close to my body, preventing it from moving around and "getting my attention". It allows for the tail to be below the shirt so that the pouch could still fill up with air/output without any issues. Plus, the compression shirts are very forgiving and would allow output to flow without impacting the adhesion of the flange. I get my compression shirts 2 sizes smaller than my normal shirt size for the compression that I desire, but you wouldn't necessarily have to go that small. The compression shirts actually feel pretty comfortable as they help keep my hernia in check throughout the day.
As JimBob says, necessity is the mother of invention, so hopefully you'll find some more help/ideas that will help.

David

[Arlington]

Have you tried gas-x, Simethicone? Works well for me, most nights no gas at all.

[Diane C]

ladydyana7,

Thank goodness people like you are around to help others! You're doing so much that is right. I see a GI doctor and he told me Gas-X is fine BUT to avoid peppermint. In some folks, esp with reflux, peppermint can ADD to gas. (Seems like a corporate money-making scheme!) Choose cherry or lemon flavors. Has your client tried Immodium? I take 2 in the AM and more later, esp if I need to change my system or go out (not much these days...). The gel caps work best but I find they burn going down. The ingredients must be strong. Try the caplets. The liquid may be hard for her to swallow and sometimes I find it just comes straight out of my stoma! I never see sales for Immodium and rarely coupons. There are drugstore and OTC brands that may be the same. Loperamide is the generic name. I'd be curious if anyone has found a generic form that works as well as Immodium.

When my pouch fills with air, it's very uncomfortable so that'd cause me to play around with it. There are men's underwear (mentioned above?) that are stretchy (think the sleeveless underwear worn by Marlon Brando or Paul Newman!) and can cause a slight binding over the stoma. Others suggest bandeaux that go around the waist and can be pretty but I didn't have a whole lot of luck with them. I tend to wear loose clothing now, expect some staining, am delighted if there's no tell-tale mark, and do a lot of laundry.

I recently ordered the Hollister high-out system. I'll probably return to the Coloplast mio sensura one. I found that the Hollister pouches didn't maintain integrity and got filled with air very fast. Coloplast kept its shape far better. I spoke to a rep at Coloplast who'll send me samples of different sizes. I used to dislike the clicking mechanism -- a lock -- with Coloplast. I didn't like the high profile then but I don't care as much now. It's not that easy to unlock it at times and this may be an answer for you. Coloplast's system DOES have a filter on all pouches which is now useless to me. Inside is a dark material that tries to keep "debris" from the filter. I'm not thrilled with that flap of material but can live with it. I'd like to explore Convatec's high-output system again. I do NOT cut off the rubber spout at the bottom of the pouch. I find it easier to empty through that. That spout MIGHT be another thing to play with. You may have to tape it closed.

Good luck and keep trying!