Second Night Home with a New Stoma: A Painful Experience

So, since my stoma is now much closer to my stomach, its output is really, really acidic. Like, REALLY acidic.



I spent the night in agony trying to put Sudocream on the skin around it that had been burnt so badly skin was peeling off. My dad's girlfriend (who works in a hospital and knows a lot about these things) happened to have an anesthetic that goes on skin, we put on some of it and it burned even worse. It was meant to be totally numb afterward but it didn't seem to do anything. Eventually, I had to give up and just put on a new bag, my dad gave me some strong sleeping pills and my painkillers from the hospital. I wasn't able to turn on my side because then it would burn more, but eventually, I got to sleep.



Today my stoma nurse came and gave me some powder and paste that should help over a few days. Fingers crossed!



xx



Noodlepip

Hope you feel better soon, Noodle; but something's missing from the picture you present. You are in agony and your caregivers are your dad's girlfriend and the stoma nurse??? Where's your surgeon in all of this? You should not have been allowed to leave the hospital without proper meds (or even powder or paste) for easily anticipated problems. Also, why is your output so acidic? Did you get any dietary guidance from the hospital nutritionist or from the stoma nurse? I think you deserve better care than what I see you're getting. You need to be your own best advocate and hold your providers more accountable. I have been around too long to settle for anything less than responsible and effective medical treatment that inspires reasonable confidence instead of crossed fingers. Best wishes!

Awww hi Pip, I'm so sorry you're in so much pain. I've been through this myself, having such sore skin, to the point of a burning sensation from the acid that comes from the stool. The powder should work, but I can make a suggestion: try lavender osteoguard wipes. They are very gentle on sore skin and will heal and soothe, and your bag will stick on okay. I use these all the time as my skin was really bad, but now it is healed and staying that way. If you mention these to your stoma nurse, she may be able to let you try them. Hope things start to ease off for you soon. Thinking of you. Take care, Ambies..x

It sounds to me like your problem is that you're not getting a good seal around the stoma and the output is irritating the skin. I've had my ileostomy for 32 years (way before you were born... OMG) and I've never had a problem. Try this: clean and dry the skin well. Soap and water is all I use, followed by a quick drying with a small hair dryer. If you have time, keep the appliance off for a little while and let the skin get some air. Then I take some 2 Stomahesive strips and I cut four 2-inch pieces and place them on the skin around the base of the stoma as close as I can get it to the stoma. It's like a small picture frame. I put the Convatec face plate over that and finally I take another Stomahesive strip (about 3 inches), fold it in half the long way, and then wrap it around the stoma over the face plate. So now I have three layers of protection and absolutely no skin is exposed to the output. The Stomahesive strips are about 5 inches long, so I use 2 for each change. One I cut into 3 pieces of equal length and the second one I cut off one more small piece for the picture frame, leaving the remaining length to fold and wrap around the stoma. My experience was not to expect too much management advice from my surgeon. He did the cutting and then left me in the hands of the nurses and the enterostomal therapist. Good luck and keep us posted!

Gosh, I feel your pain! I have had so many problems since I had my surgery almost three years ago. There was a point when I was having so much leakage that my skin was raw like hamburger meat, and I had formed an ulcer under my site which started to grow quite large, but I still had to adhere my ostomy bag regardless; it was really hard. I fortunately had really good medical care, which is key, and was going to the wound center twice a week for a while, and I did everything they told me to do to take care of myself. The hair dryer is a really good idea. I used medicine on the wounded skin and let it air dry. I know it's time-consuming, but it works. My skin around the site was weeping, so I let it scab over as much as possible and then put on the wafer and repeated the regimen as needed. I also changed my diet so it wasn't so liquidy and changed my ostomy products, which has helped me immensely, and I have not had to return to the wound center in five months! ;-) Just hang in there, sweetie, and be strong!!! Santabelle

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I had exactly the same problem for 16 months, tried different things but nothing worked. Then, by chance, I saw a different nurse, only to find out that my nurse had me using closed bags instead of drainable. I was changing it so many times a day my skin was really sore and had open wounds. I started using drainable bags 2 weeks ago with stoma powder and creams, and my skin is healing and so much better already. I can't believe how the stinging has eased. All that pain and misery because a nurse didn't provide the right bags and I didn't know any different.

You must have an ileostomy now. The small intestine is filled with acids to break down protein before entering the colon, so if you leak in just a short time, you will have skin breakdown, which is very painful, I know! Rings worked for me. Whatever ostomy company you use should have them. I use Adapt rings from Hollister; you may want to give them a try. Good luck, Eddie.

P.S. Just noticed in my last post, apparently the quotes sign I was using to denote inches did not appear. Oh my! So wherever I typed a number, I meant inches... 2 inches, 3 inches, etc.

Are you in the UK? Coloplast barrier spray is brilliant. My DH had what looked like raw meat around the stoma, and the barrier spray sealed it without any soreness, and it healed dramatically quickly.

Hi Noodlepip (love that name), I hope this doesn't sound too obvious, but have you or your stoma nurse checked the size of the stoma recently to be sure the pouch hole is the right size? When I first went home from hospital with my new ileostomy stoma it was 40mm diameter but within a week it was nearer 30 and now - 3 years on - it's a steady 20. I learned the hard way that it's essential to have a snug fit of the wafer round it so there's no skin around it to be burned by all that nasty acidy waste. Maybe I've just been lucky, but all I do when changing is clean the stoma with water, wipe the surrounding area with a SkinSafe wipe and stick on the new bag. The only problem now is the horrible yucky new closing that Hollister have introduced - but that's another subject. I do hope you've managed to find a solution to your problem and that things are getting better.

I use Adapt Stoma Powder from Hollister; it helps a lot with skin burn around the stoma area. It doesn't bother me much when I had my colostomy. I am struggling with handling my new ileostomy, which is 8 weeks old. I got up a couple of times at night to empty it, which is making me tired. Good luck.

If your stoma is flush or recessed, you need Convex Fit. This pushes the skin around the stoma so the stoma protrudes. All manufacturers have them. Request a sample. Good luck.