Not coping with ileo

[cathy123]

Do you have a stoma nurse coming to your house? Or one you can visit? They really helped me find the right product.

[Lydia666]

Do you have a stoma nurse coming to your house? Or one you can visit? They really helped me find the right product.

One came today and she redid the whole thing. It leaked again a few hours later. Discouraged to say the least! Plus i had no idea the products are so expensive!! I ll be ruined! I paid 100$ for 10 wafers and bags, so if i have to do one a day, it's impossible financially.

[cathy123]

Do you have a stoma nurse coming to your house? Or one you can visit? They really helped me find the right product.

One came today and she redid the whole thing. It leaked again a few hours later. Discouraged to say the least! Plus i had no idea the products are so expensive!! I ll be ruined! I paid 100$ for 10 wafers and bags, so if i have to do one a day, it's impossible financially.

That really stinks. How often does she come? Can you call her and tell her it started leaking? I don't know if it is different in Canada, but my nurse called the big suppliers (Coloplast, Convatec, Hollister) and got me a bunch of samples to try. Is the nurse showing you different rings and pastes as well? There are lots of tricks you can try. The thing that ended up really helping me was a convex wafer - my hole was pretty close to skin level so it kept leaking out, but the convex wafer kind of makes the stoma pop up and I really had no leak problems after that.

One other thing - there are home nurses who also deal with ostomies, and then there are ostomy nurses where that is all they do. I had the ostomy nurse come a few times, and then after that the home nurse kind of consulted with her. The ostomy nurse was the one who was really helpful.

That is a crazy amount of money! Are supplies not covered by insurance? Hopefully a fellow Canadian can step in, but $10/bag certainly does not sound reasonable. I have no idea how much my insurance paid, but I was allowed 20 wafer/bag sets per month and had a minimal co-pay.

[Lydia666]

Doing better, no leakage for the past 48 hours. Not much help though. The nurse who came did it for me and it leaked. The stoma nurse said she will see me at our booked appointment next Tuesday. When it was leaking, it was towards the belly button and i told her that in addition, when i sleep, the most painless position is on the left side which does not help with leakage. She said : try to sleep in the uncomfortable position till Tuesday. It made me laugh!! Wow! Big help!

Our insurance will pay the products up to 75% so that's great.

Still this part of my life is the most difficult. When i empty the bag, i gag every time. Horrible experience.

[Mister Wu]

Lydia,

With all that Señora went through, the radiation, chemo, surgeries... She would tell you that dealing with her ostomy was the worst.

But she got through it. And you will as well. For your kids.

Be strong.

Wu

[Lydia666]

I just wanted to update that i still hate my ileo and find just as gross but i am used to it. I still have raw flesh around it and no powder or spray seem to heal it. I use a wafer plus bag for about 48 hours tops. Even to do that, i have to sleep only on the right side so that it doesn't leak through the left side towards the belly button. After 48 hours i take it out and shower properly. Very hard to shower with the bag on. I'd have to put a plastic bag over it and seal it. Sometimes it stinks even if it does not seem to have leaked. I guess gas still comes out. Sometimes i worry others smell the awful smell. It's ok if i am at home but it's not always the case and i am embarrassed. So that's my life with the ileo- just a vent! can't wait to be liberated, but i have another 7 months or so ahead!!

[Steph20021]

I am counting down too Lydia, 5 more months for me. However, since this is my second temporary ileostomy I have learned to not get too hung up on the idea of having it removed. This is my life NOW, and I am not giving the ostomy so much power. One just never knows what the future holds. I may end up with it again for a third time, and maybe permanent. Or perhaps something medical will happen that will prevent me from having it reversed again. For me, it is easier to just accept it and act as if its permanent, rather than be disappointed again down the road.

[Daisymae]

Ostomy sucked for me.cicknow others are grateful for it but I never felt that way. Everyone is so different. I was told I had a 5 percent chance of ending up with one and of course I did - but it was temporary. I also had a 1 year old at the time. I didn't adjust well. I had skin reactions to the adhesions, I thought the bag stunk, I hated waking up in the mornings feeling like it was about to explode from air, looking for clothes that would cover it, fearing to go out because it may leak. It was a shock mentally. But as everyone has said, it gets easier with time. You care less because life has to go on. Then I got it reversed and that was a whole new chapter of emotions - pooping myself, always on lookout for bathroom, trying to manage immodium and metamucil. Then that got better and there's the worry about what's next.... I guess my point is I hear ya. It's okay to say it sucks sometimes because it does. But I know it will get better for you - it takes time to adjust. Praying for better days ahead. Hang in there.

[JudeD59]

Lydia, I still hate mine, too. At first, I was really nervous that I would do something wrong. I'm not nervous anymore, but it's still gross and it still pulls at my skin and I can't seem to ever drink enough. I can't wait to be rid of it and think sometimes how strange it will be when I wake up from surgery and it's gone. I'm a pretty low-maintanence person and can't be bothered with regular manicures or five-step facial cleansing routines, so the amount of maintenance involved with the ileostomy drives me batty. I do the same as you--wear a wafer and bag for two days and then take it off to shower before starting with a fresh one. I've tried to go longer, but it just doesn't work well for me. I still put a light coat of stoma powder just right around the stoma where the sore skin is, then spray on the Cavillon barrier spray, then blow it dry with a blow dryer on low warm before repeating the application of the powder and Cavillon again. Then I put the wafer and bag on. If stoma paste or Eakin seals don't work for the gap by your belly button, you could try Hy-tape. They sell it on Amazon. It's pink, waterproof and works well for me. When I have an area that is giving me problems, I stick a strip of the Hy-tape down on that area of the wafer and it creates a good seal. The stoma nurse actually recommended I use it in the very area that is giving you problems so that if I had a leak in the night, the output wouldn't run into my open incision and possibly cause infection. And I've never had a leak through the Hy-tape.

Unless I have a leak, two days works pretty well for me. When I try to go longer, I guess the wafer breaks down a bit because I start to get the burning on my skin from the stomach acids and I need to change it right away before it gets too sore. I use the Durahesive wafers which are supposed to be for longer wear time, but I still only average about two days. If my reversal doesn't work out, I would ask for a colonoscopy instead of an ileostomy. I know there are still problems to deal with when you have a colonoscopy, but I think the liquid output with the ileostomy makes it harder to deal with and harder to keep hydrated. But that's just my feelings.

Another thing that drove me batty was coming out of the shower and needing to hold gauze over my stoma just in case some output came out. I couldn't dry or dress myself properly with one hand. I like to dry off, put some clothes on so I'm not freezing, and then lay on the bed to apply the powder, spray, and eventually the bag itself. So what I found was stoma caps, which are used by people who irrigate. They are just small coverings that look like a shower cap for a little doll. They have the same rubbery adhesive seal as a wafer, but smaller. Before I step out of the shower, I dry the area around my stoma, pop a stoma cap on, and then I know I'll have no leakage while I dry off and get dressed. When I'm ready to put my wafer and bag on, I peel the stoma cap off catching any drips with some gauze and I'm good to go. You can't wear it for long because it doesn't hold much output and you have to make very sure your skin is dry before you put it on. I usually put a strip of tape across the bottom of the cap just for extra protection. It's not the answer for everyone, but it's what works for me and it's made taking a shower a lot easier and less messy. It is another added expense that some people might not feel is worth it when you are only using it for 15 minutes or so, but it's worth it to me to be more independent and to be able to dry off and dress properly without help. Just a tip I thought I would share.

I'm glad you are adjusting somewhat to your ileostomy. We are never going to love it, but just learning to live with it is a big step. I have a very strong sense of smell and I rarely smell mine. The few times I have smelled it when it wasn't leaking was when I ate something particularly strong smelling-yuck. I ask my family all the time if it smells and they have never smelled anything. I do use the Adapt lubricant/deodorizer and I do think it helps not only with the smell, but in allowing the output to slide out so it's easier to clean the opening.

Hang in there. I'll be thinking of you.

Judy

[MissMolly]

Lydia: Life with an ileostomy is no picnic . . . and life with a loop ileostomy is particularly challenging owing to the highly liquid nature of the output with highly caustic digestive enzymes.

I have a permanent ileostomy. It was never on my radar of possibilities that might be in my life. But I adapt and adjust, as we all do.

A few thoughts:
• If you feel that you "smell" you may want to try (again) a different manufacturer brand. Unless you have an actual leak or compromise of the wafer, an ostomy system is designed to be air and water proof and should emit no odor. Of course, the operative word is "should" emit no odor.

But not all brands suit all people. For example: I cannot use the Hollister brand. For whatever reason, I emit a smell and odor when I wear a Hollister pouch. Many, many people use Hollister without an odor issue. Not me. Simply put, I smell when I wear a Hollister pouch. It really does point to the uniqueness of each of us and the uniqueness of each manufacturer's branding. The learning: Try another manufacture's brand.

For me, Coloplast and CyMed are both brands that fit my needs to a T. Never do I emit a smell. Rarely do I have a leak.

Available ostomy brands in the US and Canada: Hollister, Coloplast, ConvaTech, CyMed, Marlan, Stomacure, Salts.

Some of the lesser well-known brands can be great. I like Marlan and StomaCure a great deal. Both have low-profile systems with wafers that I like. Sometimes it is good to branch out and try one of the other brands.

• If your skin continues to be irritated and raw, Cavilon No-Sting Barrier Spray remains the best option to use. It is a staple item for almost anyone with a highly liquid ileostomy. I have mentioned Marathon Skin Protectant in an earlier post. It is designed specifically to heal skin exoriated from exposure to feces and urine. It is available without a prescription on Amazon.com. Metaplex Honey is yet another treatment option.

• If you would like to visit the United Ostomy Association of America web-site (UOAA) and visit the on-line forum, you will find a group of at the ready to provide support, care, and practical ideas on living your best life with a stoma. Making the best of a less than ideal situation. http://www.uoaa.org

• You might also find soothing relief applying witch hazel to the skin surrounding the stoma. It will sting (sharply) at first, but witch hazel has soothing skin properties. You can also apply aloe vera. Aloe vera has known skin healing properties and is readily available at stores such as Whole Foods and Natures and other naturalistic pharmacies. Aloe vera is available as an ointment/cream that you can place on the parastomal skin, then apply a layer of duroderm, then place the wafer/flange.

I hope for you the best that the day can be,
- Karen -

[Lydia666]

Thank you , Karen and Judy, for taking the time to write all this useful info. I will certainly look into all those tips.

[TracieLynn]

Lydia,

Miss molly and others gave you great advice. I have had temp ileo for 6 months and the first 6-8 weeks were hardest. Now it's a breeze and I never get leaks. For me it was a lot of trial and error-changing every part of solution that didn't work. I wear two wafers (one slim and one normal). Also-I use precut flange larger than my stoma and it works perfectly!! I am getting reversed 12/28/15 but am more worried about my new normal!

I'd be happy to answer any other questions. I'm on the FB group too.

[JudeD59]

Hi, Miss Molly!! (Waves happily) Good to hear from you again.

Lydia, Miss Molly gives great advice. She helped me so much when I was having major problems with my ileostomy. I'm sure if you have any specific problems or questions, she would try her best to address them.

One thing I will say is that even though I still hate my ileostomy and I still have issues because of my super-thin skin, it has gotten easier to deal with over time. I know what works for me and what doesn't and I have everything organized and ready to go. I keep a bag in the car at all times with extra clothes, wafers, bags, wipes, gauze, powder, spray, etc. in case I have a problem while out. And I have all my stuff organized in one of those Rubbermaid three drawer organizers so I don't have to fumble around looking for what I need or realize at the last minute that I am out of something I need. I still have the occasional leak, but only at night, and weirdly, my body has now programmed itself to wake me up when the bag is puffed up in the night and in need of changing. It's pretty rare that I sleep until there is actually a leak and even then, it's always when the leak has just started so it's not too bad. I think I feel the wafer pulling away from my skin from the fullness of the bag and it wakes me up so I have time to let some air out and then go empty the whole thing. It's been quite a while since I had a full-on blowout mess, thankfully. One evening, I was feeling a bit better and decided I would eat some Cheetos. Well, fake cheese has almost a vomit smell, so when the bag blew out at 6 in the morning, it smelled like I was covered in throw-up. I would say that was one of my most unpleasant experiences with my ileostomy so far. I couldn't stop gagging. But those fun times have become rarer and rarer.

I don't think I will ever be a person whose skin toughens up and adjusts to the ileostomy. It still pulls and burns and it's still always reddish purple around the stoma. I also get sore spots where the adhesive bandage part of the wafer takes a little skin off on removal. And I don't know if everyone gets this, but sometimes when I eat something that comes out more solid than liquid, it feels like I'm passing gravel out both the hole in the top and especially the smaller hole in the side. That is unpleasant. But I've found that massaging the area around the stoma can help when that happens. The output isn't even hard, just firmer than usual, but it feels like rocks as it comes out sometimes. And my nurse recommended drinking fruit smoothies to try to get some nutrition in and I've had no problem when I make my own at home with fresh fruit, but my daughter picked one up for me at a convenience store to try to be helpful and I guess they make theirs with artificial coloring or something, but it was strawberry and my bag looked like it was full of blood every time I emptied it for the rest of the day. It scared the living daylights out of me at first, but I quickly realized what was causing it and calmed down. Beets can do the same thing, so just be warned and don't panic.

We can get through this together and we'll get through our reversals and whatever problems they bring us together, too. Just taking it one day at a time, right? And trying to keep a sense of humor about the whole thing helps a lot, too. Some days the only choice is to laugh about the absurdity of what we are dealing with or cry and while I don't always succeed, I do try to laugh about it.

Always here if you need me,

Judy

[MissMolly]

Hi Lydia and Judy (waves happily back at' ya):
Judy, you are to be commended for paying-it-forward. Reaching out and helping Lydia as you are, new to an ostomy as you are. Kudos to you.

Living with an ileostomy, especially an loop ileostomy, deserves an anointing with a badge of Courage (with a capital C). No doubt, the highly liquid output and highly caustic digestive enzymes are difficult to manage for even the most seasoned ostomy veteran.

I have been sharing space on my abdomen with my ileostomy for 3 years. I named my stoma Button, because it looks the button on a shirt sleeve . Overall, my stoma is well-behaved. But that was not always so. For the first several months, it was like living with a newborn infant - constantly needing care and attention. Now my stoma and I live together in a (sort of) balanced harmony. I continue to adjust and adapt, as we all do. I consider it an ongoing process.

Having a permanent ostomy myself, I make it a point to learn and stay informed about new ostomy products and accessories. I serve on Coloplast's patient advisory committee, and have the privilege of reviewing many of their products that are in development. It has been an eye-opening adventure. Trying to neatly contain and package the ever flowing discharge of the digestive system is an architectural challenge . . . the varied folds, grooves, and crevices of each person's abdominal topography; differences in skin sensitivities; poorly healing wounds and fistulas. I appreciate that the products available today are so much better than those of even 25 years ago.

The bottom line: Do not be hesitant to explore other manufacture's ostomy products and accessories. There is a bomb-proof system for you. Sometimes it just takes a little detective work to find it + helping support of others with an ostomy who walk a similar pathway.

I am here for you, to help in anyway, to help make your experience with a stoma a tad easier.
- Karen -