long-term ostomy, but new painful skin probs around stoma

[carinberk]

Hello. I have had Crohn's disease for 27 years and an ileostomy for 10 years. I think of myself as pretty tough and also pretty good at dealing with my ostomy, but about six weeks ago I started having skin problems that I am really struggling with. The skin immediately underneath my stoma, where the skin and the stoma join, is broken, red, and bleeds. It is also excruciating, which sounds silly given how small an area is affected, but it is really impacting my ability to function. I have been changing my wafer daily or every other day, using barrier wipes, and have tried putting wax over the area that is affected, but it isn't healing at all. Has anyone experienced such a thing or does anyone have any suggestions? Thanks so much!

[To Dream a Dream]

Hello & thanks for joining us on our Board. Do you have a WOCN (specialized ostomy nurse) in your area? Sometimes new problems do arise that we need a little extra help with & a knowledgeable professional is often a real blessing.

[To Dream a Dream]

The UOAA website also has a list of local support groups where you might find additional information about ostomy nurses in your own area.

[Ed1948]

I agree with the previous replies. You need to have access to a Wound Care professional for this current need and any future needs. You may benefit from a simple Eakin seal added to your ostomy appliance. I use a two-piece Convatec system with an Eakin seal around the opening of the faceplate. I change my bag every three days. I can go longer but try not to. I use a calendar and mark when I change and when I should next change. Feel free to message me if you would like to talk further.

[carinberk]

Thanks very much. I'll see if I can find a WOC nurse in my area to talk to. I appreciate the support.

[ot dave]

Sometimes when I get a spot under my flange that is irritated like what you describe, I will place a piece of duoderm or tegaderm over the area. It keeps out the output that is irritating it, but it also allows it to heal. You can get sheets of either on amazon. Hope you find a solution.

David

[agichk]

Carinberk:

I have not had DX of crohns but just over 3 months ago I started getting wounds around the ileostomy done on 3/4/19 (just realized 6 months today when writing this).

I was told it was possibly Pyoderma gangrenosum but nothing has really worked, so it wasn't than it was by GI & surgeon but wound not ready to mess up tests being done and now I know they want GI to manage the meds for it also. I was told it is not a common DX and that would be about right for me as I can say.

it is getting bigger and bigger now almost too big to even fit under the barrier. It hurts like hell and bleeds. we have done hydrofera, prism, aquacel over one of those than barrier strips on top to hold in place. we put cohesive paste all around it and than put on protective seal by coloplast followed by the barrier that has a protective seal on it already plus 1 full strip paste on that to make a dam.

it has stopped the stool from getting under the barrier and leak out to than be sucked up by wound vac for about 17 days before it is now bigger.
Crohn's antibodies are weak postive with negative neutraphil count but still waiting to see when going to do the ileoscopy or what must be done before treating.

all say pyoderma is crohns and told may never get a full + test for the DX but no one wants to do the steroids yet as the clobetasol steroid cream for 10 days did not improve at all.

We are doing daily if not more often as the drainage from wounds is too much at times.

I am in tears trying to rinse out the wound that is now 2 as 1 almost 5 cm i think but quit asking now. basically until start treatment, nothing will get better.

I am reacting to tegaderm for the wound vac dressings on the outside only where near edges that are against uncovered skin that blister and itch. Never had any issues like this before and going to see dermatologist is getting scheduled as I can't wait much longer to find out what I am allergic to as anything that is rub or touches skin leaves red marks that go away but not always.

I have asked about deep convex barrier with cololpast as have light one and told may put pressure on teh wounds but at this point I don't care as I need to have some time between changes. I have the new one from colopast before they said there is now a small hernia besides one made to make ostomy but damage done as told by providers that the support belt was reason I had the sores until finally the staff looked at all the photos my husband takes to see the purple marks.

pyoderma looked like improving but in the last 6 days have noted more and more issues now to the bottom side of ostomy where it is harder to touch and more of it is turning purple so waiting for more trouble now. it has area around 9pm on left side doing this also.

I am going to wound clnic now in 20th week M-W-F that can be 2 hours each visit or more depending on what is going on. the surgery incsion is slowing healing but has mess from hernia repair in 2008 at 12 o clock and is on turtle stampede pace in my opinion.

I am working full time for now 3 months since out 173 days but this is getting to be too much despite being case manager for my occupation.

I have tried the coloplast barrier for hernia but it is not with any protection of ostomy that is now more and more like basketball in my opinion.

if anyone knows anyone who has had pyoderma near/around ostomy, please let me know as I am just having horrible luck.

Thank you.

[Side Tracked]

The area around my stoma is one huge mess and has been for months. I am living with pee pads (dog training pads), baby diapers, and paper towels to hold in the poop because my stoma area will not hold a bag for any longer than an hour.

This situation has been going on since late June 2019, and I am at my wit's end.

I had an ileostomy last October 2018 due to rectal cancer (stage 1) and had few problems with ostomy bags until I started developing a hernia directly underneath the stoma area. This is where and when the problems began with fitting and leakage. Coloplast one-piece bags were suiting my body well, I had no leakages for the first 3-4 months, then slowly they kept sliding off and I was unable to wear them due to the vinyl flange edges.

Next, I started experimenting with Convatec and because of their fabric type flange edges, they were working much better, yet slowly they began leaking. The more I tried putting stoma bags on, the more my skin was getting irritated. Long story short, it got to the point where a sort of mucus was forming around the stoma area and NO bags were able to stay in place.

Despite applying Eakin seals, paste or whatever methods - nothing was working. I was becoming bag-resistant and the pee pad situation began.

A wound/ostomy nurse stepped in whom I had consulted with from my hospital surgery stay. She tried the following:

- Asthma inhaler (steroid to get the swelling down)
- MedLine product (5 mg small powder bottle which contains silver) used to clear up the mucus

I had a stoma which was concave, so we tried a Convatec convex type of flange 2-pc. I was admitted to the hospital immediately as soon as the ostomy nurse saw how dire my stoma situation was. The area was an angry red, bleeding, and about the circular size of a CD disc., she stated I would be unable to take of this on my own. After 4 days, the swelling did go down, yet it was still difficult for any bags to stay on.

When I was discharged, I tried another product for the surrounding stoma area called Karaya 5 powder made by Hollister. This worked better than the Medline product and the inhaler. The Karaya powder soaked up the mucus, the redness began to decrease, but I repeatedly had to keep applying it after each attempt at a bag change or clean up of my feces mess. Patience was a virtue as it took many days to clear up. I was then able to apply a bag, but unfortunately with short success.

This has been a routine over the summer. I have seen the ostomy nurse three different times and even she is stumped. I have now decided to go for a reversal.

The cleanup has left me weary, frustrated and unable to leave my house. It's messy and I constantly smell.

I feel for you as it's a horrible situation to be in. Hope some of my info helps and wishing you progress and relief with your situation. Please keep in touch. Deb

[nickolas]

Wow, I am sorry for everyone who has suffered with their ileostomy or colostomy. I've had mine for 15+ years now (colostomy) and only had a few problems in the first few years. Developed a fungus under my wafer with in a few months of getting my colostomy. Now I use Coloplast Micro-Guard Powder "Antifungal Powder with Micronazole Nitrate 2%". About 2 yrs later, guess I developed an allergic reaction to my wafer. Changed product, no problems since.

I never let my wafer get wet unless I am going to change wafer after shower. I used a hand held shower head and a towel and keep my wafer dry. If I'm away from home, I stick my head under tub spout to wash hair, then take a tub bath with low water level.

One thing I have learned, the products that I use on my skin are not cheap. I use ConvaTec Sting Free Adhesive Remover. I believe it's part of there Sensi Care line. It's what my local Ostomy folks recommend. I also use Smith & Nephew No-Sting Skin Prep. This provides a protective spray over my skin. Again, this is what my Ostomy folks recommend.

I had to see an Ostomy nurse last October, I was told I was doing a great job and to keep it up. No skin issues that they could see. Had to see an Ostomy nurse because Hollister discontinued my wafer and bag last year.

I am a cancer survivor (rectal). Radiation destroyed my rectal muscles, thus I was tied to the toilet anytime I ate, for hours at a time. Getting the colostomy bag gave me my life back.

Good luck to all those that are suffering.

Nickolas