The Perfect Stoma Solution: CliniMed Ultraframes Review and Experience

Replies
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1254
PaulG666
Apr 12, 2024 9:53 am

Edit: Seeing some of your replies, I want to point out a few key facts; I am based in the UK, so this may be different or not possible to get this product in your country (I didn't know this until seeing the responses, and I feel so bad for any ostomates/country you cannot get this product from). The product is from a company called "CliniMed" and not Coloplast (again, I want to be 100% clear on this). Thanks for all your great responses. I will reply in turn.

I also checked with the site management to see if I could post a YouTube video I did on this, and they approved me to go ahead, so link below. To be clear, no affiliate links and no money has or will ever change hands. It is purely my own thoughts on some helpful products to help all the ostomates out there. 

The Perfect Stoma Solution (YouTube Video)

https://youtu.be/P6R7yLWd-tQ?si=dSmjmg-MGzU_KKVa

All, 

I wanted to pass on an experience with a specific product I think will benefit absolutely anyone with a stoma/ileostomy/ostomy. 

I had many leaks in my first year, which destroyed my confidence, created a huge amount of anxiety, and I didn't want to go out and slept on the sofa for a number of months worried I would leak in bed with my wife lying next to me. I will leave it there but just to paint the picture. 

I looked around for all sorts of products and tested quite a few different bags, made sure the measurement was snug, etc., but still issues when the bag was full of air during the night. Then I found the CliniMed Ultraframes. They go around the bag on the edges, and I can't describe this in words, but they are SO thin you don't even see them, let alone feel them on your skin. I was very skeptical they would work initially. 

Then a miracle happened, no leaks. No matter how much gas had built up (think Zeppelin) overnight, these outer protectors would NOT give in. It has been over 18 months now, and I still haven't had a SINGLE leak. I have used the banana strips from Coloplast, which are the same shape but a lot thicker, and they did NOT work; they were not stable or strong enough. 

One tip: Put them on side to side, not top and bottom. 

Anyway, I can't recommend these enough. 

 

Thanks,

Paul.

Caz67
Apr 12, 2024 11:58 am

Great advice, glad to hear no more leaks. xx

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Morning glory
Apr 12, 2024 10:55 pm

Thank you, Paul. I am happy you are not having any more leaks.

w30bob
Apr 13, 2024 12:16 am

Glad to hear you found something that works, Paul, but unfortunately, you guys over there get all the cool stuff. Can't get them here in the US, as usual. Boo-hoo!

;O)

warrior
Apr 13, 2024 3:31 am
Reply to w30bob

I call my zeppelin a Nerf football. But then it ends up like the zeppelin in Lakehurst, NJ, on that historic day. 🤦

 
Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
w30bob
Apr 13, 2024 4:34 am
Reply to warrior

Uhhh... let's hope not. That one burned to the ground.

I did a lot of work at Lakehurst. I think I still have a piece of the old "Hindy" in my desk somewhere. Looks nothing like a blown ostomy bag. Thank goodness.

;O)

moonshine
Apr 13, 2024 7:03 pm

You're funny… I have found if I limit my carbs, eat early, I don't get the belly gas in the bag that I compare to a Mylar balloon fully inflated.

Ianswife
Apr 13, 2024 7:07 pm

Hi, we were just signed up to Coloplast by our stoma nurse team. What do I need to do to get products from an alternative provider? I see from their website I can get samples for Ian, but if we like them, how would we get them on an ongoing basis? So new to this, we are just finding out things as we go along.

AllieKIM
Apr 13, 2024 11:30 pm
Reply to w30bob

I know! I was excited to hear about this product, but when I saw you're from the UK, my heart sunk. I suffer from leaks.

Francie USA

nokeyblokey
Apr 14, 2024 12:20 am
Reply to Ianswife

@Ianswife, I have found that simply phoning my stoma nurse team and telling them that I have found an alternative provider usually works. They will just check the status of that provider, and as long as they are up to the NHS standard required, your team should accommodate your wishes. I suppose if there is a huge difference in cost for little improvement, then they might advise against the change, but it might be that they have simply not dealt with them before. My supplies include Dansac, Coloplast, Hollister, and Salts, and I think this varies across different areas. When I was in Portsmouth hospital, they supplied Salts products, but when I got home, they reverted to Dansac colostomy pouches and Hollister urostomy pouches. Of course, different regions will have different regular suppliers and providers. All my various products come from Fittleworth Ltd, and they can advise on the availability of specific products for specific preferences, like transparent instead of opaque, or convex instead of flat, etc. You can but ask!

Caz67
Apr 14, 2024 7:03 am

As previously mentioned, you can either contact your stoma nurse or take a leaflet from the box and take it to see the GP (not reception). Xx

PaulG666
Apr 14, 2024 7:23 am
Reply to w30bob

I am shocked that in the US, of all places, you can't get hold of additional products that would work better for you. :( I didn't realize how lucky we seem to be in the UK. Surely there must be a way of getting this changed, as you are not the only person who has replied with this challenge. It seems France also has this problem.

Let's hope it changes!

PaulG666
Apr 14, 2024 7:26 am
Reply to AllieKIM

I have seen a few replies from people in the US to this post, Francie, and I am so sorry to hear you can't get this product in the US. There must be some way around it, as if you do suffer from leaks, this is a game changer. I honestly can't stress this enough (for me anyway). I wonder if there is any way your main supplier could source the CliniMed Ultra Frames somehow? I will see if I can look into it for you, and if I find any way, I will let you know, Francie.

Thanks.

Paul.

PaulG666
Apr 14, 2024 7:32 am
Reply to Ianswife

Ok, so I can help here. Coloplast is the default company you get assigned to. There are other suppliers in the UK who can not only source Coloplast products, but also products from other manufacturers. I didn't find that out until 2 years in! I thought it was Coloplast regardless, but oh no. They just keep that quiet. I found CliniMed while I was looking for black ostomy bags and did a trial with them. When I realized they had three or four great products I loved, I was told I could switch to them as a supplier and they would continue to source the Coloplast items I was wanting to keep. I got the best of both worlds and have items from two companies that cover everything I need. It astounds me that no one tells you this; you kind of have to find it out for yourself!

So in short, contact CliniMed, tell them what products you like so far from Coloplast, add any you want from CliniMed (they can send you trials before you commit, which I recommend), then they just take over the supplying of your products after gaining approval from your doctor. It is so simple it's crazy, and I spent over 2 years suffering with what I would consider substandard products.

Hope that helps and good luck! You don't have to commit; do the trial of the products first from CliniMed is my advice :) I did a YouTube video covering all of this, but I'm not sure if I can post it on this site as I am fairly new.

PaulG666
Apr 14, 2024 7:35 am
Reply to warrior

That brought a smile to my face this morning!! Thanks :) Nerf football for sure!!!!

PaulG666
Apr 14, 2024 7:37 am
Reply to w30bob

This sucks!! I always thought the US had everything, so I'm really unhappy to hear you can't get these. I had three other similar responses about the US, so I will do some research and see if anything is possible and will come back to you if I get any luck.

PaulG666
Apr 14, 2024 7:39 am
Reply to w30bob

More the shape than the type of explosion, and something tells me you really do have a piece in your desk somewhere! Fascinating people on this forum.

PaulG666
Apr 14, 2024 7:42 am
Reply to nokeyblokey

I also replied with a similar comment. I think what surprises me is no one really tells you that you can have different suppliers for different products through one portal like CliniMed or even Coloplast, who can also provide other products from other companies, I believe. It's the fact you have to stumble across this information rather than have it explained to you. Well, that was my case anyway :) Salts products I liked in some areas but not all, Coloplast the same. I think having that ability to pick and choose after trialing each product first is great. Again, no one really tells you this when you leave the hospital.

Abdulqadir
Apr 14, 2024 11:00 am
Reply to PaulG666

Thank you for your great product recommendations. Could you please send me the product link so I could order it if they ship it to my country?

Regards

ShellyK
Apr 14, 2024 12:25 pm

Thanks for the information. I will check this product out.

SaharaToo
Apr 14, 2024 1:44 pm
Reply to Ianswife

You can get other products via Coloplast. I now get Rhodes Stocare, Eakin Freeseal, and Brava products. I had a problem with my skin under the stoma bag plate at one time, which is a difficult place to heal. I experimented and found a Stocare product works well for me. I came up against some resistance from one of the (not so nice) stoma nurses at one point, but I knew it was essential for my skin health, so I stood my ground.
One time I made an order that included one of each of the products I use, and it must have come to a high total as the (nice) stoma nurse changed the brand of my adhesive remover. The new brand burned my skin, so I now have the good one with no problems. I run out of products in between bag orders. Make orders for the products so you don't end up with a full shopping list that might exceed your monthly allowance.
Send for samples of products you'd like to try, and if they work well, ask your stoma nurse to have these supplied along with your bags via Coloplast.
The way my orders work is that the supplier is Charter, and they send me the stoma bags (pre-cut) and the products. I was initially signed up with a different company for deliveries, but they were unreliable, and Charter was recommended (on Facebook groups).
You get to choose. If there's any resistance to this, ask the stoma nurses why.
The only product I haven't tried samples of are stoma bags. That's just a scary area for me because, in the early days, my bag detached and leaked all over my bed 10 nights out of 14. And I haven't ever cut to size for myself. One day, I will try a different bag.
With UK Facebook groups, some are good for information, but then all the posts are about problems and negative stuff that will, hopefully, never happen to Ian. An antidote is the Ostomy Lifestyle Athletes FB group. They achieve stuff that's likely to be beyond me forever, but it's good to see people whose lives have not been limited. (I think they were mainly athletes with six-packs before surgery).

 

gentlejohn
Apr 14, 2024 3:04 pm

Thank you for sharing your story!

w30bob
Apr 14, 2024 4:25 pm
Reply to AllieKIM

Hi Francie,

I hear you, but be careful. As I explained above, this product isn't designed to prevent leaks. It's to seal the adhesive edge of your barrier to your skin, so it doesn't lift from perspiration or being in the water. If these edge tapes are stopping output from "leaking" past the edge of the bandage... you have a leak under your barrier, no ifs, ands, or buts... it's just not getting out and making a mess. And you don't want your output on your skin under your barrier. So if you use this product and find output being contained by it, you're creating a much bigger problem that your skin will not appreciate.

As for it not being available here in the US... it's a catch-22 of sorts. The rules and regulations regarding medical equipment imported into the US are supposed to help filter out the bad crap from the good, but also make it expensive/hard for importers of legitimately helpful products to certify their products to our medical standards. And like every other time you regulate and limit things... you sometimes tend to throw the baby out with the bathwater. We also tend to focus on what we want but can't get, but the flipside is there's a lot of medical crap that could harm you that's also being blocked (as it should). We just need to make friends with some ostomates in England who'd toss some stuff in a box and ship it to us.

Uhhh... I didn't just say that in case Big Brother is watching. I swear I didn't (wink, wink).

;O)

BobbiesZoo
Apr 15, 2024 7:12 pm
Reply to Ianswife

Hello, Ianswife,

I'm in the US, so not sure if this would be different for you, but here goes.

I'm fairly new to this as well. In the hospital, I had a wound care nurse show me how to change my bag and gave me some supplies. That's all the support I got. I have no idea what a stoma nurse is! 😳

I got my supplies (same as my samples) from a medical supply store (Norco) but got online and sent for some free samples from a couple of companies, Coloplast included.

If they will ship you samples, you should be able to order whatever you want directly from them. Or, if you have medical supply stores over there, they should be able to get you different brands, though that did initially require a prescription from the doctor.

Good luck finding what works for you. I ended up sticking with the ones I was given in the hospital, but gotta say the samples I got from Coloplast came with some excellent customer service.

Morning glory
Apr 15, 2024 9:15 pm
Reply to BobbiesZoo

Hi, a stoma nurse is a wound care nurse.

almelia
Apr 22, 2024 5:33 pm

I've been using these for a few years now - I actually cut them in half, only needing that much where the flange crosses the scar of my midline incision. I had surgery 3 months ago to switch my ileo from RHS to left and repair hernias, etc. Post-op, I used them right around as I had a few leaks until swelling subsided and wounds healed. Back to just needing half on midline as that is the edge that always 'pops' for me!

PS: I used them as an emergency burn dressing also - perfect!

PaulG666
Apr 24, 2024 1:50 pm
Reply to moonshine

Good advice! I will try that, as I have been alternating my diet to see what causes it, and I have got it down to a good system at the moment with minimal carbs, but I still have some in there. Maybe time to remove carbs and see if this cures it completely! Thanks for the tip. Appreciated.

PaulG666
Apr 24, 2024 1:51 pm
Reply to Abdulqadir

Here is my YouTube video which shows you the product and the links are in the description. Hope it helps! Let me know how you get on. Thanks.

https://youtu.be/P6R7yLWd-tQ?si=dSmjmg-MGzU_KKVa

PaulG666
Apr 24, 2024 1:53 pm
Reply to w30bob

That is a very good point, as I wasn't aware it was not designed to prevent leaks. This is what was recommended to me, and for whatever reason, it works and gave me my life back. I change my bag frequently (daily unless I have a small leak due to coughing or something like my three-year-old kicking me there!!) so I tend not to worry if I have had a leak, and if I do, it's small and I change the bag there and then. Totally appreciate your point, and it's good for everyone to know this (including me) so thanks for taking the time to respond! And hush hush I won't say a word as you never know who is watching :)

PaulG666
Apr 24, 2024 1:56 pm
Reply to SaharaToo

Great advice for me also. I am in the process of trying a number of products to heal the nasty sore piece of skin I have, so I appreciate the information. To me, it's the trick of finding something "sticky" that also heals at the same time. Most of the creams, no matter what they tell me, just come away from the bag and although they protect the skin a little, they still cause issues. Thanks again!