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Changing ileostomy appliance

Posted by judgelori, on Mon Jul 08, 2019 11:46 pm

Hi everyone! Im new here.  A quick recap of my life.  About 22 years ago, i was diagnosed with UC.  I was treated with meds for 3 years but it was quite aggressive, so i had my colon removed and j-pouch surgery in 2000.  All went well (temp ileostomy for 3 months, takedown surgery, then, well, life went back to normal...or new normal). Then Thanksgiving 2018 i started feeling bad.  I thought it was pouchitis.  And it was.  But after a round of flagyl and cipro, i wasnt better.  For 2 months, i went back and forth with my colorectal surgeon that something just wasnt right.  I had 2 flexsigs, 1 CT scan and multiple biopsies all saying nothing was wrong.  But i knew different.  I ended up in the hospital Feb19 and after several more tests, it was determined that i had an abcess and my j-pouch had ruptured away from the rectal cuff.  So, surgery was scheduled to removed my j-pouch and get my permanent ileostomy.   Well, after surgery,  pathology reports showed stage 2 rectal cancer.  So, i am almost 5 months post surgery and feeling pretty good.  Chemo is almost over and side effects have been minimal.  I have adjusted pretty well to the ileostomy again.  Products have greatly improved since 2000....trust me!!! Lol.  Anyway, thats the short version of my life recently.  My question here is about how often people change there appliances.  Im using a 2 piece mio sensure product, because the hollister ones made me itch.  At first, i was trying to get as many days out of a bag as possible.   I once got 5 days!! Now, i usually start to spring a leak around the 3rd or 4th day.  Id like to try changing every other day, just because i think it would feel cleaner.  But im not sure if it would be too harsh on my skin to change every other day.  My skin was very inflammed initially but it has has finally settled down so i dont want to make it angry again.  So, any input about how often yall change your appliances, i would really appreciate it! Thanks!! Lori. 😎😎

Reply by Mark1070, on Tue Jul 09, 2019 4:03 am

Welcome to the site, Lori. I'm glad to hear you're starting to feel better. I also have an ileostomy. Regarding wear time, people will tell you anywhere from 3 times a day for the cheaper one-pieces...to once every two or three weeks. It really depends on prep during changes and the brand and type of appliance. 

If you want more wear time or to feel more secure, here's what i do to get two or three weeks out of my hollister two-piece.  I needed to improve adhesion because I'm active...backpacking, sailing, etc. Over the years, I've learned how to keep a bag on for weeks even lugging a 35 pound backpack with a hip belt right across my stoma...no issues. Process: after shower, dry skin with hair dryer, apply barrier wipe, stoma powder, thin layer of Torbot bonding cement on wafer adhesive and skin, partially dry Torbot on skin and wafer using hair dryer, apply ring around stoma, apply wafer, tape around wafer with Leukotape, hold firmly in place with hernia belt until completely set secure.

I use a hernia belt most of the time. It's a bit of a process but only takes an extra minute. I'm not changing nearly as often and this system is bulletproof so i don't worry about leaks or smells anymore. Use adhesive remover to take it off. The torbot is very strong. 

How much of this process you decide to incorporate pretty much depends on your needs. 

Btw-I do like the sensura mio's because the rubbery wafers are waterproof and thus protect the adhesive, unless you have perspiration buildup underneath. Then i find the fabric-type wafers to be better because they breath and allow drying. I also find the fabric a little more comfortable. 

 

I hope this helps. Let me know if you have any questions. Take care. 

 

Reply by Bill, on Tue Jul 09, 2019 4:33 am

Hello judgelori. Thankyou for an interesting post which raises issues that have been aired before. I can normally trawl through past posts in 'Collections'  to find some useful replies, but on this occasion they seem to have eluded me. I have a colostomy which raises some different issues to those of an ileostomy. However, the problems associated with wafer-adhesion are much the same as we often use the same or similar appliances. I tried every appliance available along with pastes, powders, rings etc and and could not seem to get them to stick satisfactorily. Out of necessity, I began experimenting with making my own baseplates which I stuck the manufacturesrs appliances onto. After a few minor adjustments I found that the best baseplate for my purposes was one that had two belts (top and bottom) which give the right amount of tension to different parts of the abdomen. the manufacturer's wafers stuck to the baseplate without any problem and would stay on therre indefinitely. My own baseplate is secured at the stoma site by a very small spray of medical adhesive. (There are pictures of my devices on my profile). I have different baseplates for differing occasions and have not had any leaks or mishaps since using my own baseplates. I know that not everyone has the skill or inclination to make their own stuff, but sometimes the 'one-size-fits all' approach of manufacturers simply doesn't work for every individual. 

Mark's post seems a sensible approach to the problem and appears to work for him - so it might be worth a try. However, I would urge you to continue experimenting with everything that's available to see if you can find something to suit your needs. 

It might be useful to know that, whist I was having problems with wafers coming off, I shared my concerns with one of the companies. They were very helpful and sent me a 'special order'. Unfortunately, the new wafers stuck so well I could not get them off, even with the remover spays. When they were finally removed, I had a sore area around the stoma for about a fortnight after. I decided that it was time I sorted the problem for myself!

I do hope you get some more replies from people who have found solutions to these problems.

Best wishes

Bill 

 

Reply by judgelori, on Tue Jul 09, 2019 9:03 am

Thanks Mark and Bill! Im still learning...its definitely a process!! Lol

Does your skin "toughen up" over time, allowing more frequent changes without hurting the skin?   I just got my skin cleared up and really dont want to have to go through that again.  The hospital gave me these flat 1 piece bags by hollister and by the time i got home, i was having all kinds of trouble keeping them on.  Now that i gave found the convex mios, i love them.  They work great for me.  My insurance supplies me with 20 per month...meaning i could almost change every day or at least every other day.  I just didnt know if that would hurt my skin again to change that often.  All i use is the wafer, bag and the waxy barrier ring.  No other products.  Having good luck so far.  

Thanks for your replies already.  Im looking forward to just getting used to this so its a 'non-issue' in my life!!

 

Lori

Reply by vdahl, on Tue Jul 09, 2019 12:09 pm

Hi Lori,

I too love the convex mios and you're right, the hollister flat appliance that was supplied at the hospital was nothing but problems. One of the odd reasons I like the coloplast bags has to do with the fabric - it's so easy to dry and shower with. I have only been able to push my wear time to 4 days without any leaks but the skin around my stoma is irritated with itching. I DO like changing every other day and have far less issue with the sensitive skin than the longer wear time. I feel clean and fresh. At the very least I will change the bag without a complete appliance change.

This is only MY experience and I know tons of people would point out how I should not change so often but I am happy with my routine. I rock a change within minutes and can forget that I even have the ileostomy because it's so comfortable.

You've got this! Vicki

 

Reply by judgelori, on Tue Jul 09, 2019 12:40 pm

Thanks, Vicki!!  I do seem to feel more confident when I change the bag before it leaks.  I can't seem to hone into how long a bag will last, so I have been waiting until I see seepage but before it actually leaks from the wafer. (unless it does it overnight, which, whew, it NOT fun!!!) lol 

I just get nervous if I go to work on a 3rd day and I don't see any seepage before I go to work...but I worry all day...what if this bag doesn't make it all day?? 

I don't have a real routine just yet, so that's what I'm trying to figure out.  Should I just change it every 2nd or 3rd day, regardless of if I see seepage or wait?  What's the normal thing that most people do?  I guess I just feel terrible taking off a perfectly sticking appliance with no seepage just becuase it's a certain day.  But maybe that's the way it's supposed to be done...IDK...lol

 

Any advice is greatly appreciated.

Thanks, again, Vicki.  Nice to meet you!

Lori

Reply by newyorktorque, on Tue Jul 09, 2019 9:35 pm

Hi Lori glad to hear youre improving.  When I first had surgery I was on a quest to have a bag last as long as possible since in the beginning, having a bag stay just for a day was a huge feat.  I wear a one piece by coloplast.  I had the same problem as you with hollister.  So I have had a bag last 5 days but I wont go past that amount of time. I used the crusting method with 2 layers of barrier spray, powder, and on the last layer I used a barrier wipe instead of spray.  This worked well and kept my bag on.  Three years forward and I now have problems with reocurring infections, so I change bags after 2 full days (or on the 3rd day) but I dont do the crusting method, just a bag and 2 barrier rings.  I thought the frequent change would do more damage than good but I was wrong.  Since the current regime is working and helping reduce those infections I'm sticking with this for now.  Its all about what works for you.  Good luck.

Reply by judgelori, on Tue Jul 09, 2019 9:57 pm

Thanks for your input/advice.  Im gonna try changing on a regular basis every 2nd or 3rd day for a while and see how it goes.  I like the bags i use...i couldnt use the flat ones because they didnt fit secure...and the hollister ones really made my skin itch.  So, im happy with my products.  I just wasnt sure whats a normal wear time for people.  

Its definitely a learning process...lol

Thanks again....Lori

Reply by Mark1070, on Tue Jul 09, 2019 10:53 pm

You'll get it dialed in, Lori. I believe the peristomal skin indeed does toughen over time. I'm 10 years post-op and, while it's not entirely bomb proof, i certainly do get away with more now than when the stoma was brand new. All good advice, above. Try different products and systems. Combining different products seems to benefit many.  On the topic of irritation using hollister product...some people can be allergic to certain adhesives or even develop new allergies over time. Candida/yeast infections can also be challenging. If your skin weeps, there are products that can help dry it up and heal the skin. Take care. 

Reply by ron in mich, on Wed Jul 10, 2019 10:18 am
Hi Lori I change my 2pc. convatec system every 4th. day, I,ve tried all kinds of samples and come back to convatec each time, I,ve had my ileo. for 34yrs.
Reply by judgelori, on Wed Jul 10, 2019 3:05 pm

Hey, Ron...thanks for your input.  I'm still trying to figure all of this out.  I just had my j-pouch removed and my ileostomy done Feb 26.  And the pathology report came back to show I had stage 2 rectal cancer.  So, I have been so focused on chemo and getting through that part, I haven't spent a lot of time trying different products or different routines.  I basically just put a pouch on and wear it until it starts to leak.  But I would like to get ahead of the leaks, if possible...mainly because when it leaks, it irritates my skin and I've had a hard time keeping my skin healthly since all of this.  When I left the hospital, they had me in a flat one piece hollister bag.  Well, the thing itched and the flat part just didn't fit right and i kept having leaks.  One day i changed my bag like 3 or 4 times, because it kept leaking.  And all of that leaking just messed up my skin.  It took about 6 weeks to get my skin healed up.  So, I'd like to try changing every other day.  I just don't know if that will irritate my skin again.  I guess I'm just going to have to try it to see.  I have found that ostomy questions are very much like cancer questions...the answer you always get is "it's different for everyone."  lol...seems like every time I ask my oncologist a question, she will say, "maybe...it could happen that way...it's different for everyone...we will just have to  see how it is for you."  aaauuuggghhh!!!  that's so frustrating...lol...but, I have to learn to laugh at it all...and figure out how to deal with it.  I can't let cancer, chemo or an ileostomy define who I am.  I am so much more that this.  Sorry, I'm rambling.  Thanks again for your comment. 

I do have one question for you, since you've had your ileostomy for so long...does your skin eventually get "tougher?"  Not necessarily calloused, like guitar fingers...but it does learn to not overreact to leakage and adhesives???    :o)   Thanks.

Reply by Puppyluv56, on Wed Jul 10, 2019 11:22 pm

Hi Lori, 

Everyone is so different! Skin types vary as do products. At first, I sometimes used 3 pouches in a day but quickly changed that product. I have evolved to a two piece appliance and go back and forth between the coloplast Mio sensure fit and the Convetec. Both have goods and bads but I have worn a flange for as long as I could and got 18 days from it! I typically don’t Go 18 days even though I could some of the time. I do try to change the flange and pouch every 10 days. Gets a little ratty looking after that long! I have a pool and am in it every day so the 10 days has been the happy medium. Not saying there has not been a few three and five day changes! Not often though. I have no skin issue and use no additional products except adhesive remover wipes. I tried all the stuff thinking more was better but found it not to be .

hope you find what works the best for you! 

Puppyluv

Reply by dadnabbit, on Thu Jul 11, 2019 12:20 am

judgelori,

I shower naked daily and so I change my mio sen sura one piece daily.  I have NO skin issues due to frequent changing, and yes, I know that I DO feel cleaner.  The added expense is the biggest problems as insurance only covers 20 bags (and additional needed supplies) for each month. So the extra box of 10 sen sura mio pouches costs $148 each and every month.  I don't use much else, only a barrier wipe to protect the skin, and some cloth medipore tape if there is high humidity and I'm going out for a while.  The few times I've experienced ski irritation I found anacept by anacapa technologies which is a wound gel, and I apply it after showering around the stoma, allow it to absorb and then wipe the area dry, then use a barrier wipe before applying the mio.  Many folks claim to get 5-7 days with their appliance.  Different strokes.....I'll continue to change daily until it becomes a financial hardship.  Personally, I think the insurance allowance of 20 days of supplies monthly is disgusting.  I wonder how often those powers that be change THEIR underware, especially if they have an accident !!  :-)

Peace

Dadnabbit

Reply by ron in mich, on Thu Jul 11, 2019 9:26 am
judgelori wrote:

Hey, Ron...thanks for your input.  I'm still trying to figure all of this out.  I just had my j-pouch removed and my ileostomy done Feb 26.  And the pathology report came back to show I had stage 2 rectal cancer.  So, I have been so focused on chemo and getting through that part, I haven't spent a lot of time trying different products or different routines.  I basically just put a pouch on and wear it until it starts to leak.  But I would like to get ahead of the leaks, if possible...mainly because when it leaks, it irritates my skin and I've had a hard time keeping my skin healthly since all of this.  When I left the hospital, they had me in a flat one piece hollister bag.  Well, the thing itched and the flat part just didn't fit right and i kept having leaks.  One day i changed my bag like 3 or 4 times, because it kept leaking.  And all of that leaking just messed up my skin.  It took about 6 weeks to get my skin healed up.  So, I'd like to try changing every other day.  I just don't know if that will irritate my skin again.  I guess I'm just going to have to try it to see.  I have found that ostomy questions are very much like cancer questions...the answer you always get is "it's different for everyone."  lol...seems like every time I ask my oncologist a question, she will say, "maybe...it could happen that way...it's different for everyone...we will just have to  see how it is for you."  aaauuuggghhh!!!  that's so frustrating...lol...but, I have to learn to laugh at it all...and figure out how to deal with it.  I can't let cancer, chemo or an ileostomy define who I am.  I am so much more that this.  Sorry, I'm rambling.  Thanks again for your comment. 

I do have one question for you, since you've had your ileostomy for so long...does your skin eventually get "tougher?"  Not necessarily calloused, like guitar fingers...but it does learn to not overreact to leakage and adhesives???    :o)   Thanks.


Hi Lori i wouldnt say my skin got tougher but improved or less sensitive as i figured out what worked for me, which is i use the flat pectin based wafers not the tape style as the adhesive irritates my skin, i use the cut to fit wafers and cut the hole so that it fits snuggly around my stoma, i also use a piece of an eakin ring around the opening of the wafer then i dry the skin around my stoma and apply the wafer and then the pouch.

Reply by Lt. Dan, on Thu Jul 11, 2019 12:36 pm
judgelori wrote:

Hi everyone! Im new here.  A quick recap of my life.  About 22 years ago, i was diagnosed with UC.  I was treated with meds for 3 years but it was quite aggressive, so i had my colon removed and j-pouch surgery in 2000.  All went well (temp ileostomy for 3 months, takedown surgery, then, well, life went back to normal...or new normal). Then Thanksgiving 2018 i started feeling bad.  I thought it was pouchitis.  And it was.  But after a round of flagyl and cipro, i wasnt better.  For 2 months, i went back and forth with my colorectal surgeon that something just wasnt right.  I had 2 flexsigs, 1 CT scan and multiple biopsies all saying nothing was wrong.  But i knew different.  I ended up in the hospital Feb19 and after several more tests, it was determined that i had an abcess and my j-pouch had ruptured away from the rectal cuff.  So, surgery was scheduled to removed my j-pouch and get my permanent ileostomy.   Well, after surgery,  pathology reports showed stage 2 rectal cancer.  So, i am almost 5 months post surgery and feeling pretty good.  Chemo is almost over and side effects have been minimal.  I have adjusted pretty well to the ileostomy again.  Products have greatly improved since 2000....trust me!!! Lol.  Anyway, thats the short version of my life recently.  My question here is about how often people change there appliances.  Im using a 2 piece mio sensure product, because the hollister ones made me itch.  At first, i was trying to get as many days out of a bag as possible.   I once got 5 days!! Now, i usually start to spring a leak around the 3rd or 4th day.  Id like to try changing every other day, just because i think it would feel cleaner.  But im not sure if it would be too harsh on my skin to change every other day.  My skin was very inflammed initially but it has has finally settled down so i dont want to make it angry again.  So, any input about how often yall change your appliances, i would really appreciate it! Thanks!! Lori. 😎😎


Hi Lori;

So sorry to here about everything you been through. I have had an ileostomy for 11 years now and i use the same Sensura mio product as you. I have switched to the two piece from the one for better fit application. i find the one piece to be slimmer on the body but the two piece feels more secure. Any how, i usually get 7 days out of it! Sometimes 8 in the colder months. I average usually 6 days in the warmer months. Hope this helps.

Have a good day

 

Dan

 

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