Severe Stoma Swelling and Lifestyle Impact

Replies
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143
Lynndielou
Jan 27, 2025 9:03 pm

I've posted before regarding allergy reactions to products. Thank you to those who replied. I now think my problem is bigger. I am probably living through the worst period ever with my stoma. I mentioned it retracted, but it hasn't been a problem until the last few months. I am now living the worst period of my life with the friend that saved my life. I have tried a variety of seals that all claim to be the best, but my issue is with swelling. I have gone from 7 days change to less than 12 hours. I can't leave the house, I can't remember the last time I had a decent meal. I am in pain all the time. I've used Eakin, Dansac, and Brava. Right now I'm at the end of my tether. I'm booked for refashioning in the private sector, which I'm ashamed about as a nurse in the NHS. But I'm desperate. Sorry, just need to vent. I'm so unhappy after years of a normal life.

 

 

 

 

 

 

 

TerryLT
Jan 27, 2025 9:52 pm

Hi Lynndielou,  I'm sorry you are having such a rough time.  One brand of 'seal' you don't mention is Salts.  I'm assuming you are referring to barrier rings?  The Salts brand barrier ring infused with aloe is the best I've found.  It cleared up my badly irritated and raw skin, and has kept my skin healthy since.  I have also found the seal to be extremely strong.  If you haven't already, you really should give them a try.

Terry

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Beth22
Jan 27, 2025 11:29 pm

Hi there,

So, is the skin swollen, or is your stoma swollen? And you didn't say how the skin around your stoma is; if it's raw, red, and irritated? If it is, you're going to have a hard time with anything sticking. I recommend the 3M Advanced Skin Protectant or the Marathon; it's going to actually put a protective layer over the skin and protect from output. I have been in your situation more times than not. And if you are retracted and keep leaking and nothing works, you will have to have a revision or a possible relocation.

There is also the CeraRing by Hollister, the only one I can use due to allergies, and Brava cuts off circulation to my stoma, and convex wafers. They don't give ostomates very many options, which is hard when you are in a situation like this. And nurse or no nurse, it's completely different when you're on this side.

Lynndielou
Jan 28, 2025 12:58 am
Reply to TerryLT

Hi Terry. Do you mean the Sensura? I’ve tried the bags which didn’t work but I’ll ask for the rings. Thanks for your help

Lynndielou
Jan 28, 2025 1:02 am
Reply to Beth22

Hi Beth. No, it's the rings that swell. I know they're supposed to, but they swell so much I'm getting blocked off. As a result, I'm constantly leaking and my skin is raw. I'm going in for refashioning, but it's weeks away and I'm losing weight because I'm too scared to eat.

 

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

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Beth22
Jan 28, 2025 1:53 am
Reply to Lynndielou

I understand what you mean; that's what Coloplast Bravas did to me. The only one I can use is the Cera ring from Hollister. It doesn't swell the same way. Not sure if you have tried that. And with your skin being raw, I would get the skin protectant. I have been in this situation, as I said before, more times than I can count, and I would leak within 10 minutes of putting on a new bag. The 3M Advanced Skin Protectant is the only thing that got me through a day until I could get a revision and a relocation. Have you tried the strip paste? I had to do this as my stoma was so low I couldn't even wear a ring, and my stoma sat below the wafer. I would often break a piece of strip paste and put it on the wafer, and it's moldable, or you can flatten it, which is what I did. It's not regular paste; it's strip paste. You can Google it. And you have to eat, or you will have a bigger issue, and you don't want that. Your stoma is still going to have output while drinking and have a lot of stomach acid in your output. You have to eat and drink.

IGGIE
Jan 28, 2025 2:24 am
Reply to Lynndielou

G-Day Lynndielou,

TerryLT said SALTS are made in England and are fantastic for people with skin problems. I am using them as well and they are fantastic. Don't forget the company is called SALTS. You will love them.

Regards, IGGIE

Gracie Bella
Jan 28, 2025 3:03 am

Oh Lynndielou, 🙏
I have stood in your shoes, so I understand completely. I had to have my stoma remade twice. All I can say is that it does get better. That may sound like something people tell you all the time... But I've gone through my early times of having my ileostomy for over 25 years now. I had times where my bag would come off around 5 times a day, and I'd feel like screaming, as I'd never thought life could become so frustrating.
I persevered, time and time again. I would pick myself up, with encouragement from my husband John. I've fought an enormous battle to stay alive; and when I am too tired to fight, my husband fights for me.
See your dietician and your stoma nurse, keep asking for help until you get it. As my husband likes to tell me, "It's the squeaky wheel that gets the oil."
Vent all you like. We all need to vent now and then.
We all are here for you.
And yes, I still remember when I had my normal life, only it seems so long ago now...

Praying for you,

Gracie.

Lynndielou
Jan 28, 2025 1:28 pm

Thanks everyone for your responses, you’ve been really helpful. I’ve requested samples of the Salts and the Cera. Can’t speak to my stoma nurse until next week as she is fully booked, so once again it’s a case of ‘nurse heal thyself’ and being proactive. 

Jayne
Jan 28, 2025 6:55 pm
Reply to Lynndielou

Lynndielou

 

Salts and others are recommended products - yes - also, there may be mileage in visiting a specialist who tests for allergies...

May I also make a suggestion: Zinc can be very healing - Coloplast makes a wafer/bag which includes zinc within the chemical compound of the appliance, aiding [as well as your endeavors for addressing the deep unevenness... SPEAK DIRECTLY WITH A RESEARCH CHEMIST... for even if one has a refractor - if you have developed an allergic reaction - this may need to be addressed... There are other topical applications which may be tried too [but IT IS DOWN TO WHAT IS CAUSING THE SKIN REACTIONS - as well as effluent seepage I may guess.

 

And also - YOU MUST NOT FEEL GUILTY IN ARRANGING A PRIVATE INTERVENTION - THIS IS TOTALLY UNDERSTANDABLE GIVEN NHS WAITING LISTS WITHIN THE UK - You have served and now it's your turn - so please do not feel guilty - needs must!

 

Please do not overlook the groundwork prior to having the refractor however - as you need the possible research for a sustainable appliance when your stoma/abdomen is refactored. Also, stating the obvious - the surgeon needs stable skin to sew to, and you need a stable surround to your new stoma when sustaining its management after surgery!

 

Good luck.

 

BW

 

Also, with the greatest respect, try now to dismiss the anger - for it is not good for you... proactivity is necessary and one should not resent this - I found that given my own predicament when it came to helping myself during my own clinical trial within the NHS - for had I not done so I would be in a very bad place - fate favors those who are prepared - and PREPARED TO HELP ONESELF - we are with you - so hang in and do not be too hard on yourself.

 

 

~ ~ ~ ~ ~ waves ~ ~ ~ ~ ~

Jayne

aTraveler
Jan 28, 2025 7:39 pm

One thing I haven't seen mentioned, that will help with pain and healing, is Lidocaine 2% gel. It's an inexpensive topical anesthetic — prevents pain by blocking the signals at the nerve endings in the skin. The medicine does require a Rx. You use it as follows: 
• First apply Lidocaine 2% gel to the desired treatment area during a pouch change, allow it to sit for 5 minutes to facilitate anesthesia, then wipe it off.
• The gel can be removed easily without greasy residue, so it does not interfere with appliance adhesion.
• The skin anesthesia permits thorough cleaning of the site with adhesive remover, followed by a warm water rinse.
• The skin is then dried with a low-temperature hair dryer.

It's soothing and pain relieving. It also improves your pouch adherence and consequently reduces leaking. If you contain the leaking, healing typically occurs within 3 to 7 days.

Rings can be challenging to get right. I am blessed that I am not allergic to any of them, I have other issues, Brava and Cera swell, preventing me from getting more than 4 days use out of them. Eakin leaves too much residue for me to clean up before "Yak" starts to spew effluent 😮. I have never tried Salts because my insurance company doesn't carry them and the cost for 30 is $100.45 plus $16.54 to ship from the United Kingdom to the United States — more than my ostomy co-pay. 🥺 I found that Marlen Ultraseal Barrier Rings #09500 work great for me — no swelling and no cleanup.

Wondering if you are using a convex appliance? If so does your stoma stick up above the wafer opening or is it still below the opening?

TerryLT
Jan 28, 2025 9:58 pm
Reply to Lynndielou

Iggie answered  my question.  I figured because you lived in England that you would know about them.  The one I like is a SAR (Salts aloe ring), with the number of diameter you need.  It is thinner than any other barrier ring I've used, but seems to do a better job than any of them, and is a little lower profile, which I really like.

Terry