For the ileostomates :)

[Thunderstruck]

Hello all. So the time has come where I need to consider changing appliances. I currently use the convatec natura hydrocolloid barriers and bags. However, I notice they're not lasting too long without irritation. Also, it seems they're not conforming as well to the stoma (you don't cut these, they mold to the stoma) It's been 4 years now, and I think it's time for a change. I have issues with barrier wipes and powders. They really irritate my skin. I stoma does stick out, so I can't use convexity. I have more of a liquid output as well. I only clean with warm water and apple cider vinegar and gentain violet as needed when irritated.

So what do you use? How long do you get out of a barrier? I only get 2 days at most now. Just would like some input from the fellow ostomates before I order samples Thanks

 

[Crohn'sFor Life]

I too have an ileostomy with frequent watery output. I use a Cymed drainable one-piece and a Cymed seal(washer).

I normally get 4-5 days of use. I swim, lift weights and sit in hot tubs frequently.

I tried practically every type of bag before settling on Cymed.

 

[DJW]

I use convatec with an Eakin seal. The seal is great for watery out put. I get about 7 days of wear.

 

[annawato]

I use welland flair active convex, but they come in non convex too. I get two days but they would probably last longer if I was willing to risk it. I have very watery output too and pretty high volume. I use paste around my stoma and also wear a belt for added security. I do get irritation around my stoma and think its just something i have to out up with as nothing seems to help. I've tried loads of different bags and these just seem to work for me. I also like that there is a slit in the fabric covering so you can see whats going on under there and also they have a tab that helps open the spout for emptying. I jsut clean with warm water and then use a welland barrier wipe. I also often use the brava strip to cover the edges and give even more security.
Bags are such a personal choice and different ones suit different people. I think the only way to find another is call all the suppliers and get them to send out samples so you can try them. All the best for finding a new friend for your stoma.

 

[Thunderstruck]

Thank you all for the responses I called my company today, and they're sending me some Eakins and Cavillon spray. I have to say, I'm nervous to switch products after four years! But that's a good idea to get samples!

 

[DJW]

Glad you're getting samples. I've changed products many times over the years. You would not believe what I started with. A one piece with a wax ring and tape. Thankfully they are always improving.

 

[2thFairy]

I use Coloplast Sensura one-piece nonconvex with the Brava strip paste rather than a ring or traditional paste. Just last week I had to change to a different skin barrier, as the brand I have been using for the last year changed their formula and I am having a reaction to it. I'm now using Cavilon wipes and they agree with me so far. I can now go 3-4 days without the base deteriorating around the stoma. I thought I would never get more than 2 days without needing to change gear, but things finally changed for me in the last few months....no clue as to why, as the output is still liquid.

 

[annawato]

Thunderstruck I was curious why you use the apple cider vinegar and wondered if that may be causing skin irritation? Do you rinse it off after using? Is it a magical old wives (or old nurses who are usually the best) tale that we should all be following?
I know the old tried and true methods are often the best. My community nurse mentioned mercurochrome for weeping skin and gentian violet for thrush - both worked a treat though fairly colourful!

Note:
For anyone thinking of using these two methods, and I didn't use them together, the gentian violet was a very weak solution, just tinged with purple and mercurochrome should be used sparingly cos of the mercury in it.

 

[nogutsnoglory]

Question from a soon to be joining the club. Do I order these before my surgery or will I get a few bags from the hospital to go home with?

I'm not sure what I need to purchase and where to begin besides looking at your reviews on here.

 

[Marx]

I don't know how it is in America but here in the UK, they give you like 2 supply from the hospital when you have your op and order your first batch for you to be delivered to your home which should keep you for at least a month and from then on you order them yourself. But I'm sure you'll have a stoma nurse who'll explain everything you need to know. Good luck!

 

[2thFairy]

Question from a soon to be joining the club. Do I order these before my surgery or will I get a few bags from the hospital to go home with?

I'm not sure what I need to purchase and where to begin besides looking at your reviews on here.

The hospital will send you home with about a week's worth of supplies. They will also give you a list of supply companies that you can call and start having deliveries made to your house. Your stoma nurse, however, is a better person to talk to about all of this. The hospital wound care department (which are the ones designated to deal with stomas) generally just have basic information that a lot of the time is outdated. Look at the list of companies we have as a sticky in this forum. All of these companies will send you free samples if you call and request them. As for actually ordering supplies, you will need a doctor's prescription if insurance is to pay and you will want insurance as all supplies are expensive. If you have a compounding pharmacy nearby, stop in there and see what ostomy supplies they carry. There probably won't be a whole lot, but you will be familiar with what they have if you have an emergency situation and can't wait for the supplies to arrive. Regular pharmacies don't carry ostomy supplies, just compounding pharmacy.

 

[2thFairy]

As for the stoma nurse we keep mentioning, your surgeon will, or SHOULD, be hooking you up with a stoma nurse about a week or so before your surgery. You will meet with that nurse prior to surgery to select the best spot on your abdomen for stoma placement and to answer questions. You will be in communication with that same nurse for awhile after surgery to monitor how you are doing and to assist in learning how to manage everything. The stoma nurse (in the US) is separate from Home Health services you will most likely also be receiving after leaving the hospital.

Once you meet with your stoma nurse, ask them for samples of bags to take home and practice with. I tried out many bags before surgery and discovered that I am allergic to a few, so was able to eliminate those before it became a serious problem. While experimenting with supplies (before surgery), I also filled the bags with water to see how it felt to walk around with it full and then to practice emptying it. It will help build your confidence.

 

[nogutsnoglory]

All of this information is so helpful. I feel less blind walking into this situation. I haven't been connected with a nurse yet but hope that will happen before surgery. I want to be prepared and not wake up with a bag and a million questions. How can you sample the bags before you have a stoma? Just fill with water and hold there? Should I call for samples now before surgery so they are here? It's a bit strange if the hospital sets you up to order a brand before you get to try a few out.

 

[2thFairy]

The basic bags all have adhesive on them, so just peel and stick. At one point, I had 4 different bags stuck on me all at one time because I was running out of time before surgery and was trying to determine which ones to avoid because of my sensitivity to adhesive. You can call for samples now, but some companies won't want to send you any until you have already had the surgery, as they perceive this to be wasted money. (Each bag costs approximately $3-$4 in the US.) Most hospitals will send you home with Hollister bags. They are the least expensive and I imagine they get a good monetary deal with them nationwide with the larger hospital chains. Some people have great success with Hollister, but the general consensus is they are the least favored.

 

[nogutsnoglory]

So you recommend I put the adhesive and try them before or just after and fill with stool to see how long they last? I was looking into Cymed and Convatec as they seem to last longer.

 

[2thFairy]

Everyone reacts differently to each brand. Your output may be pure liquid, which will require more frequent bag changes, your skin pH might be such that the adhesive just doesn't want to stick as long as someone else, the normal secretions may eat through the baseplate more quickly than someone else, etc., and these all vary from one brand to the other. For almost the entire first year, I had to change every other day because normal secretions from the stoma (not the fecal output) was making the baseplate melt quickly and so I tried different brands and found that Coloplast works for me, but not necessarily for someone else. Now I can go 3-4 days before needing to change and am still using the same Coloplast bags as before. Don't know what changed in my body's makeup, but something did. You never really know... you just have to do trial and error.

 

[Thunderstruck]

Thank you all for responding!
@nogutsnoglory, I wish you well on your journey to becoming an ostamate! My ileo was an emergency, so I definitely was blind sighted. My ostomy nurse was awful to say the least, but luckily I worked in a hospital so I was able to get some help from coworkers. 2thFairy is on point with all of that info. Everyone is different. I have high liquid, but I have some patients with an ostomy in the same spot and they have thicker output. I guess it boils down to how much you have remaining, and disease status.
@annawato, it's funny how I discovered ACV. I have scalp psoriasis, and I do not like using Rx shampoos or steroids, I feel like I should stick to my Remicade and try to avoid other meds as we're trying to conceive. Anyways, I started rinsing with ACV at the end of my shower, and over time I noticed my skin was improving. I ran out of ACV, and my scalp and peristomal skin got all sorts of irritated again! So I dilute it 50/50 with water, and just rinse with it at the end of my shower. I thoroughly rinse the skin. I LOVE Gentain Violet as well. I feel like changing my bag every few days really helps, so Im just sticking to that routine. I got some rings delivered yesterday, as I feel as though the high liquid output eats the paste and the barrier. It can get a little frustrating, and as much as I want to ask my GI pateints what they use, I have to keep a level of professionalism. Also, most of the patients I see are post-op, and either in shock about their ostomy or still adjusting. Thought I'd get an excellent response and ideas here, and I did!

 

[nogutsnoglory]

Went to a surgical store today to see some of their bags but of course they are by bulk and I'm not buying before I know what I want/need. I was hoping to get one and see but no such luck. I suppose I will go the sample route because it sounds like the hospital just gives one brand and not multiple to try.

 

[2thFairy]

Your stoma nurse should have different samples for you to try as well, but that won't help you today.

 

[annawato]

2thy I never realised that secretions from the actual stoma may be eating the base plate (and paste) but that makes sense. I get a little ring around my stoma and thought it was output leaking onto it. Sometimes it is and I know cos its coloured, but other times the paste and bottom of the flange have just disappeared. You learn something new every day.
Thunderstruck, ACV sounds like a great product. I know I have a booklet somewhere in my house that tells of all its benefits so I must look it out. My husbands father used to drink it every day swearing to its health benefits. Though come to think of it he died from stomach cancer....... I'm sure its not connected though.
And actually googling ACV will be a lot easier than searching through my messy house.

 

[2thFairy]

I was 3 weeks out of surgery and having skin trouble after just half a day with each bag change. My stoma nurse took the bag off and looked at the back of the baseplate and showed me where there was nothing left on it but plastic. Her words "Just as I suspected. It has melted off." All of the adhesive and other magical things they are made up of were completely missing. Then she explained how my stoma was a particularly wet stoma and that some just are. A different brand of bag and other gear made things better. I've run into a few other people who have also gone through this sort of thing, so I know I'm not alone. It really is interesting!

 

[PsychoJane]

I am a little late in this conversation... Still in Scotland in a hostel between two campgrounds so I have the internet. I too use the coloplast ensure but the two piece version. I am really satisfied with that product as I manage getting 5-7 days out of them even while hiking daily or swimming. I've tried Hollister and convatec but my stoma did not cooperate well with these. It is really different for everyone but this system has the best performance according to me. I have yet to try the salt products. It worth asking them for sample, their customer service is pretty much unbelievebale so far. They seem great and ressemble to coloplast. I'll soon know if they are good