Hi everyone, this is my 1st post, and I am hoping one of you out there may have some experiences you are up for sharing that are related to my issues, as net searches have turned up little. The Stoma Nurses are great, but collectively you are a treasure trove of information, and what you have to say is backed up by personal experience, which makes it all the more valuable.
My Stoma (‘Beastie') is a shape-shifter, and throughout the day and night will fluctuate in diameter and length. It can be retracted just below skin level with a diameter of 33 mm or prolapse out to about 6 or 7 cm on average with a diameter of as much as 42 mm.
My ‘output' is wet or, at best, porridgy in consistency, and as I cannot eat any starch, I am limited in how I can thicken it, so you will appreciate that keeping acidic ‘output' off my skin is a constant challenge. (Adding pork and chicken gelatine to food helps a bit, but results are unpredictable).
I am using Dansac or Eakins Barrier rings cut and shaped around the stoma base, whatever diameter it happens to be, with a Convatec Esteem 35 mm soft convex drainable bag or a Coloplast Charter high-output soft convex bag with the stopper to drain. I cut the aperture to 40 mm and feather the rim to allow further expansion. So when I apply the pouch, the Barrier Ring is filling the expansion gap. Both are one pieces, and I use the pouch belts and a support belt of varying levels depending on whether I am active and lifting or resting.
It's rare for me to wear a bag as long as 2 days; one is more usual, and sometimes I will change it twice in 24 hours due to output getting under the seal and stinging.
I have tried water washouts with the flat drainable and adding a pinch of bi-carb to try to deal with the sting and prolong a bag's life.
Output is high as I eat volume, ‘clean' food, but stuff ostomates seem advised not to (non-starchy fruit and veg in quantity) as well as nuts, eggs, meat, and fish. Five empties a day is average.
I think the shape-shifting is related to it being transverse. Although my transverse colon is so long it looped and dropped down into my pelvis, so it comes out on my left side below the navel.
So I have 3 main questions if anyone can help🤔
1) Are there any convex pouches, preferably high output, with seals that might adapt to the fluctuating stoma diameter? So that I don't get leaks behind the barrier ring.
Or any other way of avoiding skin exposure to output? Any benefits to a 2 piece?
2) Today I realized my stoma has separated from the peri-stomal skin for about 2/5 of its diameter underneath. (Last night I was pressing through a fresh pouch to ensure the barrier ring was well stuck, and my finger felt like it went into a hole beside the stoma!) Pouch change, and I can see it's not inflamed or anything and looks healed, so I think that suggests it's been like this a while. It is not easily visible; the skin fits snugly up to the stoma, so I had to gently push it back to see the separation. I am not panicking but have emailed the Stoma Nurse and Surgeon, though they won't be around as it's the weekend.
Has this happened to anyone, and how was it dealt with? Holding strategy, or if surgery, what did they do?
3) Anyone else with an ostomy from the transverse colon? If so, how does your stoma behave, and have there been any particular issues? The surgeon says the shape-shifting is normal peristalsis.
I feel I am a bit greedy with the requests for info (sorry) and could fill a page with queries, so I shall leave it here.
…..As this is my 1st post, I have to tell you, even with these challenges, I don't regret having the colostomy. My strategies for managing my gut's inertia were exhausted. Caput. My digestion is now good; I have managed to put on a bit of weight, which was a struggle before, and despite other health issues, I actually feel better in my body than ever before.
🤣 If the Beastie could just decide to stick at a couple of cm out and stay like that, I would be very content with it.
Now I shall return to read more topics.
