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    • Trekkie Monster

      Check all advice with your medical team! Plus, quoting medical sources (HON code requirement)   08/25/2015

      Here at Ostomyland we are a patient run community - meaning we have learnt what we know as a result of being the patient and 99% of our members have got no medical qualifications whatsoever, and so any support replies are usually based on personal experience or friends/family-members personal experience. As a result Ostomyland strongly recommend that all members should check the accuracy of any support/health advice they have been given here with a member of their own medical team (GP, ET/Stoma Nurse/ Surgeon etc) BEFORE acting on it. This is for your own safety, as all our bodies are very different, and what works for one might not for the other, and for another it might even be dangerous! Ostomyland is not responsible for the content of the posts made, each member is responsible for their own posts. So if you ever did get any duff advice (unlikely, but could happen one day....) then blame the person who posted the message, and not Ostomyland. We are proud to be HON code certified and work very hard to meet the requirements of their principles. As such, and as requested under principle 4 of the HON code guidelines we must ask that members of the forums please quote sources for any medical information they give which is not based on personal experience.   Thanks.
Closesu

Illiostomy hell

24 posts in this topic

Hi. I'm brand new to the forum. Shortly, June of last year I got diverticulitis and had to have bag. Ended up with that till this June when they removed my stignoid colon and reverse bag. I lasted 3 days in hospital and 2 at home with uncontrollable diahreeha and intense abdominal pain. Ended up in ER. Had perforated colon in many areas so they had to take my colon out. Now I have permanant illiostomy. Things went ok. I was in hospital a month and nursing home for month but bag was ok. Was using very top of the line bags. Well, several weeks ago all went down and I started getting leaks in the morning even with the good bags. I use different bag now for cost issues but still good bags. I'm on pchy meds that are very sedating so it's tough for me to empty at night. I even set an alarm but lately I've been sleeping thru the alarm and wake up covered. I've looked into foods that slow output and take a little immodium before bed. This morning it was full but no leak and when I got to bathroom it just came loose at bottom and stuff everywhere. I'm very disheartened. Not only do I have this thing forever and I want to get married and things but just the messes every day!! My tech is good changing them. I use warm water and then a skin prep and heat skin up with blow dryer and put bag on and hold it for a minute. Usually no problems during the day. Was wondering if anyone had any tips I could use to lessen my burden. Thank you

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I don't know if you have been on youtube and entered "ostomy", but if you haven't yet, do so.  There are a lot of good videos there about all sorts of products and methods that are done by ostomates, company reps. and medicos.  There are plenty of products and ways to solve problems.  Here's one of the very first things that I used, in fact it was a part of the old fashioned equipment.  I don't know if it's going to post but it is and appliance belt that hooks to the pouch of a two piece and holds things against you body.  Also make sure there is no oil type products as the last prep before applying a new flange. I tried to post a picture of the type of belt I was talking about but it's on a tiff file and this would not let me copy and paste.

 

Edited by Clare Bryant
Picture wouldn't paste.

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Thank you for your post and advice. I have been on YouTube and that was at the beginning so I should go back thru. I have a belt but wear a one piece. That could be an option for me even though I don't like two piece. Right now what I have is working but my problem is it gets so full at night and just looses the adhesives and breaks thru and leaks. Also it's my sleep which is a different issue but I set alarms to get up and empty bag but haven't been hearing the alarms. Leaked at 6 this morning. Not only does it suck to have to change it but I go thru bags, which aren't cheap. It's been almost 3 weeks since I went two or more days with same bag. So, I'm struggling. Calling my ostomy nurse tomorrow and go in and see what she thinks. Couldn't hurt. Again, I thank you for your advice. Take care

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See if you can find the largest bags you can.  I wear a two piece with a 16" pouch which bottoms out about the bottom of my pants pockets, but there's plenty of storage and if I let it get over full I can't blame anything but pushing my luck and not taking care of business.  I've been 40 years with an ileostomy so I've had plenty of time to learn the lessons.  One thing about this outfit, when the dues come due you pay them one way or the other.  Good luck finding a solution and hang in there.

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Hi. That's a really good idea. 16" sounds good. Like I said I wear one piece but I have worn two piece before. That would give me extra room at night when I need it. Changed my bag 3 times today. First being at 6am and two daytime leaks which are uncommon. I'm calling my ostomy nurse tomorrow and prob go see her this week. You're right about the dues. Wow, 40 yrs. I can't imagine. I may have for 40 yrs. I'm 40 now but I don't think I'll make it to 80. Call it a hunch. Why did you have to get your bag? Mine was diverticulitis. One hole in stignoid section at first and by the time they reconnected me I had 7 holes throughout my colon. Sucks. My bathroom is ruined. There's stuff I just can't get it up and I put plastic down when I change bags in cause I have output which today I have. I don't understand. I got out of nursing home in early August and next 2 months went great. Going 7 days without a leak and stuff. Then sometime in October things changed and I started having leaks at night. I have to wake up at midnight and 4 to take meds so perfect opportunity to empty bag. Then about a month ago I stopped hearing my alarm, any alarm. It builds up and I wake up covered. Going to neurologist about sleep this month. My pcp seems to think I have narcolepsy. My first sleep study years ago said possible narcolepsy but nothing was done. I already said I think that I take pchy meds which make me very groggy and hard to get up. So a bigger bag sounds brilliant. I can even wear the belt, even if it's just while I'm sleeping. Thank you again for your advice. I never thought of that. Appreciate it!

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My ileo is from having ulcerative colitis in my twenties, and I had to have my colon removed in an emergency surgery.  The products that are available now are far more varied than anything I was aware of back it the 70's.  It takes a while to find your personal system but after a while a person figures it out.  I use eakin barrier sheets to mold filler material to go on the back of my wafer.  It's a convatec product, I use Hollister wafers and pouches.  Call around for free samples from the manufacturers and suppliers.  They are more than happy to send a few samples to potential customers.  

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I see. What are wafers? I had little mold rings that I could cut in half and form like play doh around the hole of bag then press onto body. I really don't see a difference cause I still get leaks. This morning I was up at 5 and emptied and went back to sleep and woke up at 9 and it was everywhere! I got up and some plopped on rug. I just don't understand. August and sept I was doing so well. I went thru this box of bags in 8 days. Just like last year all over again. I think a bigger bag will help. I use a skin prep thing. It's like an alcohol swab but I run that around my stoma and wait 3 min and my skin is nice and sticky. But even with that I leak every morning and have to start my day in poop. Explain to me what wafers are. You seem to have a good set up but I don't understand it. I've tried two piece bags and they leaked too. Even though I've lost a lot of weight, 80lbs this year it's still very oddly shaped body where stoma is. I used to have a gut. Well that's gone but still is not flat where my stoma is. That could be why bags are not hanging in there. I never leak during the day except yesterday usually it's fine when I'm up and moving around. I sleep upright on couch to make sure waste is moving down instead of laying flat and have it build up around my stoma. I do everything I know how to do and it was working great for awhile and I don't know what happened to get to where I'm at now. Yeah, explain the wafer thing and your set up. I've used hollister in the past and I like their adhesive coverage but they leak too and more expensive. I order from edge park. My Medicare helps but still expensive especially when you start going thru bags like I am. Thanks for your help!!

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Wafer is just another term for flange, the waxy like substance that adheres to your skin next to the stoma.  I haven't used a one piece since being released from the hospital after surgery, when they showed me the two piece durable rubber flange and liquid adhesive that was the system they knew about then where I was.  The barrier sheets are the same material as the eakin rings they are just in a 4x4 or larger squares.  I cut them up in strips and roll them in to worms like play doo and then stick them to the back of the flange in a shape that will mirror the wrinkles and folds in my belly. Here's a three pictures of what I do.  Some of this barrier material is almost and 1/2 inch high by the time I get done.  I hope this helps.  I also warm this up with a hair dryer to taper the barrier material down to the wafer out the outside edges towards the tape.  And I heat the this up before I put it on, just so it's good and warm to the touch in both cases. After I have put on the appliance and press it down for a minute or so, I use karaya paste between the edge of the hole in the appliance and the stoma to protect the skin right next to the stoma. That's why I like the two piece, and I can renew the karaya paste everyday when I start my day.  This is Hollister karaya paste and not the sticky stuff from coloplast.  I realize this can't be done with a one piece.  After figuring all this out in the early months,  I now go a week between changing the flange,  I don't remember the last time I had a flange leak, and I've only had about 3 tupperware seal failures in the last year and usually less than that.  I think I wasn't careful when I rolled over in bed on those occasions.  I hope this helps.  Glad to help anyway I can.

w:f.jpg

w:f2.jpg

w:f3.jpg

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Wow, that looks like 40 yrs of experience!! I kind of understand but not fully. I use similar rope adhesive that I adhere to the flange and heat skin then press on and wait one minute. I don't think the rope stuff makes that big difference. I don't have one on now and it's holding up fine. I'll prob look into a 2 piece next time I order. I never know what this thing is gonna do but if I keep it empty it def cooperates better. I'm def gonna get the bigger bags. I could use the room. I only eat once a day at evening so I don't have a lot of output till nighttime. Thanks for the pics and the advice!!           -Mike

Clare Bryant likes this

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Mike,

Eating only once a day and in the evening to boot -  Is that the best idea given your condition?  Perhaps you should ask your doctor about that?

Good Luck, Laurence.

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Probably not but I'm just not hungry. I started eating breakfast yesterday. Just cereal but it's something. Thanks

By the way I love your profile pic. He's my favorite!!!! Good one

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What bags would y'all reccomend for me. These colon last bags I have now are terrible. Adhesive comes off every night. 2peice or something? Thanks

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I use the Hollister centerpoint lock system.  It's a little larger and bulkier than other setups.  By larger and bulkier I mean the ring of the two piece tupperware ring is not as discreet as other setups.  I also use a latex adhesive that is a "brush on" type that comes in a can.  I put this on around the stoma, it has to dry for 4 or 5 minutes.  I find it really bonds and protects the skin, but it's not for everyone.  It was the stuff I was given way back when, and have tried the out of the box wafers and I like the combination of products for my personal preference.  One really important thing is to get the area around the stoma really free of oily residue.  The last wipe and dry that I do is with isopropyl alcohol and a dry cloth.  It's a hard learning curve at first.  There are a lot of failures but pretty soon you will fail better until you succeed.    Good luck.

Edited by Clare Bryant

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Hi Mike and welcome to the forum. Sounds like Clare and Laurence are giving you great advice. As far as bags go how about calling the manufactures and asking them to send you some samples. They are great to try and see if one will work better. I've also heard of a stoma collar that I'm calling about this week with my new order to see if it helps with leaks. I don't get them to often but it's a product that interest me so maybe it will be something I would like.

Best wishes.

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Hello all. I have been using the crappy Coloplast standard wear bags right now. Their my backups till i can make an order. Im gonna try some stoma paste. It says optimum fit and stops leaks. Well see. These standard wear bags are terrible. They fall apart quick. If i dont have a leak they have about 3 days in them. Im stumped on bags. When i call im gonna see if the bags they had me in in the hospital can be special ordered cause they are not in the catolouge. I was gonna order some hollister 16 inch bags so they hold more at night but they have no filter so im apprehensive. The Coloplast extended wear i ordered i blew thru. Leak after leak. These bags have been holding ok cause i started using the rubbing alcohol around stoma then i heat my skin AND the bag. The heat on heat seems to work better. These standard wear are actually sticking better than extended wear but they really take a beating and outlet rips a lot. Im already on opiates that are constipating and ive been taking 2 immodium after i eat. Been eating lots of bananas and peanut butter and i still get a lot of output. Last year it was always watery but now its good. It must be the Protonix i take. Im still new and its so gross. Theres something about the smell thats different than conventional way. I think im just gonna try a regular hollister bag. I used to have success with them. I need a filter causevi get a lot of gas plus i dont want anything bigger. Its good it holds more but i hate people seeing my bag. I still fear going out for more than an hr bc of leaks. Maybe the paste will work. The mold rings sure dont. Anyway, any suggestions on some bags before i order? Thanks

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Mike,

You may want to look into Convatec's Moldable Durahesive offerings, available in flat and convex.   This is a two-piece extended wear system.  (You can also sanitize and reuse the pouches.)  Also, Tincture of Benzoin (available through ebay) is a good antibacterial adhesive.  I've had good results with these products.

I believe that constipation and Imodium are contraindicated.  Have you consulted anyone on your medical team about this and about your diet and eating habits?  Certain foods may be better for you than others and I've found that eating smaller meals and snacks more often works best for me in managing my ileostomy.  Remember: For us, food is medicine.

You'll eventually figure out what works for you.  Keep at it and good luck.

Laurence.

 

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Mike, I personally like the 16 inch pouch, there is plenty of room, but I have to burp it.  I've never tried the EZ vent after market vents that you can put on the bag, I think it's an option but I think it still has to be opened manually.  My pouch hangs about to the bottom of my pants pocket.  I gave up long ago trying to convince myself I didn't have an unusual bulge on my side.  When I was wearing 8 inch pouches the closure was always jabbing my right testicle.  I can honestly say I really don't miss that.

Clare.

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Thank you both. Im gonna try the 16 inch. Just one box though. Well see. I really dont care at this point if it shows as long as it sticks. I have adopted the rubbing alcohol and its a great clenser. I changed bag today but not bc it was leaking. The thing was nasty and ripped at the outlet. Tomorrow i can place my order. My output isnt really a concearn and i eat well. 2 small meals a day. Ive lost 90lbs in last year and i want to keep it off. I get full off of what i eat but i also have blood clots so i cant eat salads or greens bc of my thinners. I make it work. My only real concern is my stoma is growing. When i was in hospital this summer it was tiny and i thought i was gonna have to wear a convex bag with a belt but now its like a snake. About an inch long but still small in diameter. Maybe inch and half. Luckily the hole is at the end so its like a hose instead of my last one wherevhole was on top. It was really long today. Is this normal orvshould i contact my surgeon. Its no bog deal and doesnt hurt and really do not wanna contact him bc im scared of more procedures. You guys are the pros so you tell me. I will take pic of it if nessecery. Anyway, thanks for the input. Take care

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Is it a prolapse or does it just look longer when it contracting and the muscles are flexing (peristalsis). Mine is at least 1 1/2 inches out and has been for decades.  It's well anchored.  If yours is prolapsed you can push it back in, but if it is a permanent end ileo it should be anchored to the membrane.  If it's a loop ileo it can probably prolapse back and forth. If you don't know which you have you can call your surgeon or call the hospital and ask for a copy or the surgical transcript and it should have that info in it.  There might be a small charge for the report.  It's the dictation a surgeon gives at the conclusion of an operation.

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Hello Closesu,

Sounds like you're in a mess, nothing more demoralising than leaks. My humble suggestion is have a really good look at your stoma, standing up, sitting down, bending over, then take note of where your creases appear in the different postures. Whatever pouch you chose you've got to get it to stick. Inspect your surrounding skin, have you a hairy tum ? 

The mould rings DO work, probably you're not using them properly, their purpose is to smooth out the bumpy bits, fill in the crevices and form a tight seal.  Tear them apart, roll it round into a sausage shape, the aim being to make a collar up close to your stoma to help your pouch stick. When you know your tummy creases, fill them with the play doh too. Bear in mind when you first put on your pouch, you are not going to be in that position all day, we all move around, standing, stretching, lying down, sitting up, the pouch and  a good seal can cope with all the movement. Get the seal right and the pouch will cope with whatever output you have.

Hope this is of some help, keep your chin up.

 

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On 11/14/2015 at 7:39 PM, Closesu said:

Hi. I'm brand new to the forum. Shortly, June of last year I got diverticulitis and had to have bag. Ended up with that till this June when they removed my stignoid colon and reverse bag. I lasted 3 days in hospital and 2 at home with uncontrollable diahreeha and intense abdominal pain. Ended up in ER. Had perforated colon in many areas so they had to take my colon out. Now I have permanant illiostomy. Things went ok. I was in hospital a month and nursing home for month but bag was ok. Was using very top of the line bags. Well, several weeks ago all went down and I started getting leaks in the morning even with the good bags. I use different bag now for cost issues but still good bags. I'm on pchy meds that are very sedating so it's tough for me to empty at night. I even set an alarm but lately I've been sleeping thru the alarm and wake up covered. I've looked into foods that slow output and take a little immodium before bed. This morning it was full but no leak and when I got to bathroom it just came loose at bottom and stuff everywhere. I'm very disheartened. Not only do I have this thing forever and I want to get married and things but just the messes every day!! My tech is good changing them. I use warm water and then a skin prep and heat skin up with blow dryer and put bag on and hold it for a minute. Usually no problems during the day. Was wondering if anyone had any tips I could use to lessen my burden. Thank you

 

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I can't believe it, but here I go with my first post!  I'll be a 500 club member in no time, as soon as I learn how to navigate the site. chuckles

A nurse at my cancer clinic used to be an "ostomy nurse" and she gave me the best advice ever... After putting on a new flange and bag, lay a heating pad over your ostomy for 15-20 min. So I went out and bought one the next day. It really improved the adheisiveness--- (new words to go with the new norm), and greatly reduced my leaking incidents. I bought a rather cheap model and it only has two settings: on or off,  but more expensive models have Hi, Med, Lo.

Also, 2 months ago I used paste for the first time, (and for the life of me I can't understand why they call it paste).  It's more like play-doh, just like in the pictures Clare posted above. I think the gentle heating of the paste increased it's volume too, almost doubling or tripling it in size.  The first time I changed my apparatus after using it I was amazed.  My little shaped worm looked more like a big fat night crawler.   I've only had one leaking incident in the past 2 months!

 

 

 

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Hey Carol,

Just wanted to note that some folks use a hair dryer to add some heat to their appliance to help it adhere. Low setting of course and move the dryer about, don't leave it on one spot long b/c it could become to warm and that wouldn't be good.

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