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Unbearable painful stoma

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Posted 10/19/2015 2:54 PM (GMT 0)
I had an ileostomy (Jan 2015) and everything was going well until recently. I'm having a rough time now with a absolute sensitive stoma that is so painful I can bearly touch it. It is very very sensitive and also bleeding. This makes cleaning it so difficult. I was told that the stoma does not have nerve endings and cannot cause pain. My stoma is flat and almost level with my skin. I'm using eakin seals with a sensura click ostomy base plate on top of that and a sensura ostomy bag. I don't sleep well at night, when fluids are coming out of my stoma it burns like hell. Also having a hard time during the day. I am drinking lots of water in the hope that fluids wont burn me. I dont take spices or any hot stuff in my food. I could previously use a bag for 4 days before changing it. Lately I have to change it daily and that does not even help. I went to the stoma department at the chemist, they have nothing that I can put on my stoma. I'v tried stoma powder but it does not help at all. Why is my stoma so painful if they say that the ileum does not have nerves and any feeling? confused
Posted 10/19/2015 3:58 PM (GMT 0)
I'd call your surgeon ASAP- you should not feel anything on your stoma directly- it really does have no nerve endings. It may bleed, but not much. I think it's the skin around it- is it a permenent end ileo? I have no clue why surgeons seem to make short stomas... Have you tried the convex wafers? They may help. But if it's a permanent ileo- I'd demand a stoma revision! They also make these sheets, barrier sheets- you could try those, I'm not exactly sure how well they work.
Posted 10/19/2015 4:29 PM (GMT 0)
I have pain too, but it's not the stoma, it's around the stoma. I have a really short stoma, almost recessed. Worse than that, it points down so I have to fight to get it not to spout output under the wafer.

Are you using convex? If I tried to wear flat, I would be miserable. I never liked sensura, I really like hollister wafers. I have to change daily and the coloplast and convatec are really rough for me to remove often. I had to change 2x yesterday due to burning and leaking. I have been trying a variety of rings and wafers and I haven't found any miracle solution. I really have to try to get the wafer lined up perfectly. I have to cut it exactly right so nothing is exposed and I have to try to position it under so the spout isn't below. Even then, I am lucky to get a full 24 hours. THe rings and things might just complicate my situation more I feel like. I got some strips I am going to try. Maybe I can prop things up a little :(

The pointing down this is the worst - it practically points under the wafer. Even with convex, it will get under there. I didn't sleep because of burning a few nights and what I've learned is, have a lot of extra supplies on hand and change when it burns. You will feel so much better.

Eva, I wonder why mine is short too. I figured it was my anatomy. My friend who went to the same surgeon has a normal length stoma so I know it's not him desiring to make it short. shakehead
Posted 10/19/2015 10:58 PM (GMT 0)
Dolphin
I agree that the pain you have is probably from open skin around your stoma. My stoma is sometimes out and often retracted. I rarely have any irritation around my stoma, even when it is retracted. I owe it to Benzoin Compound Tincture.
Dan

Post Edited (polishdan) : 10/19/2015 5:01:38 PM (GMT-6)

Posted 10/20/2015 7:33 AM (GMT 0)
Eva Lou,
It is a permanent end ileo. My colon was totally removed and due to previous radiation permanent damage was done to the small intestines. During removal of the colon the small intestines actually broke and I was in ICU for quite some time. Was also kept in a medical coma and on a respirator. My stoma sister did not tell me about the wafers, will follow up on that. Thank you.
Posted 10/20/2015 7:44 AM (GMT 0)
notsosicklygirl,

Thanks for your feedback. I am not using the convex so yes, mine is flat. I contacted my stoma sister and she is now going to order it for me. I hope to find relieve. My stoma is so short because of the damage done by previous radiation, the surgeon could not stretch the small intestine any further to make a proper stoma. So mine is level with the skin. I suppose that is why is is leaking so often.
Posted 10/20/2015 7:49 AM (GMT 0)
Polishdan,

I am definetaly going to find out more about Benzoin Compound Tincture. Thank you for sharing that. Will keep you posted.
Posted 10/20/2015 11:07 AM (GMT 0)
I just got my stoma moved to the other side a few months ago due to a hernia. My new stoma is short -- also I've learned because there wasn't enough intestine to make a longer one on the other side. I used to use the sensura click w/my old stoma (convex) and I couldn't get them to work w/the new stoma -- just not a solid enough wafer -- and the flat ones are much flimsier.

I switched to the convatec durahesive pre-cut and it's made a huge difference. I have a problem w/the tape, so I've been cutting it off and using the brava strips instead. I use the Benzoin Compound Tincture and an adapt ring.

You definitely need convex -- and if the first one doesn't work, try one w/more convexity. It's very likely the key to getting a better system (and you need to heal the skin too). Best of luck.
Posted 10/20/2015 4:43 PM (GMT 0)
Dolphin
What do you want to know about BCT?

Dan
Posted 10/21/2015 8:57 AM (GMT 0)
Dan,

I've done a search on google yesterday to find out more about the procuct and how to use it. I am in SA and according to related articles BCT is similar to a local product "Turlington" or "Fryer's balsem whick makes the skin sticky. I'm going to try it out, hopefully the eakin seal will have better sticking ability.
Posted 10/21/2015 1:34 PM (GMT 0)
Dolphin
Friars Balsam Compound Benzoin Tincture is what I started with. Cannot get it in the US any more. Try the Tincture without the Eakin seal. Leaves no residue to get off.
Dan
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