After having a J-pouch for 18 years I have recently had it bypassed and have a temporary ostomy bag, 1/12 weeks out from surgery. The underside of this stoma has gone concave (in) and the top part is even with the flesh. This is recking havoc with a good seal. A convex seal will not seat because the upper part of the seal holds it up. The result is that the enzymes in the stole are eating my flesh alive. Anyone out there experience this, have answers.

Thank you

Brian

Original Post

I have a similar stoma, and I am also 2 weeks out from a fresh j-pouch surgery (step 2 of 3). They put me on Imodium and Metamucil, which thickened the output, which in turn decreased both the frequency and the acidity (I mean the enzymes) of the effluent. I can go with only one bag change in 24 hours now, before it was every 12 hrs. I believe this will improve even more as the swelling around the stoma will get less, so the concavity will get less.

I think since the underside of the stoma is more fragile due to gravity, you should use a convex to address the problem there. I had success with convex wafers that are only slightly larger than the stoma. Larger convex wafers tended to hurt me, and also did not work as well; they were not convex around the stoma, but further away from the stoma.

Coloplast sensura mio convex has deep and light convexity, and light convex might work better in your case. Hollister convex was softer than sensura mio, which was not enough to press down the concavity of the underside. The skin and the wafer barely touch sometimes with Hollister convex under the stoma. Even with a ring.

Finally, I am constantly using a tight belt. My loop stoma has the opening facing the underside, not to the front, so the effluent directly shoots into the concavity you mentioned. Unless I wear a tight belt, I cannot close the gap between the skin and the water tight enough to keep the effluent out of there.

Thank you Elif, sounds like good info. Have you tried the paste instead of the wafer. I'm thinking about trying that tomorrow AM. Maybe just build the paste up around the bottom. I surely cannot go on with my flesh burning. Just another note. I'm on schedule to change the bag every 3 days, but you change yours every 24 hours, possible some difference?? I never had to go through the stages. They were able to remove the colon and create the J-Pouch in one shot. Now I'm finding out how lucky I was.

Brian

 

I would wait up to 3 days if I could, but it starts burning or hurting, or both, so I have to change it.

With an end ileostomy, life was good. It was perfectly flat, 1 inch tall above the skin, the hole was facing the front. This loop ileostomy I have now has a very odd shape. Plus the fluid output. Some days I need to change more than twice!

 

if it burns, or itches, I believe you have to change it immediately. At least, with my skin.

Well Efil it burns horribly if I eat at all. The approach today did not work. In fact its getting worse, the skin is red raw and being eaten away. The stole is beginning to go underneath the skin. I only have supplies for one more change. I'm praying I can hold out until my home health care nurse comes tomorrow and I can reach my surgeon. I live in a rural area, if need be I will have to go to the ER at UC Davis

OMG! I am so sorry you are using your last appliance. You better order something on Amazon ASAP. I know you should not pay for your supplies, but this sounds like an emergency! Maybe you could go to ER to get supplies from them?

You should start emailing your medical team (drs nurses) and tell them you are on your last appliance. If they don’t respond, leave multiple messages, be very persistent, and make them understand that this is extremely urgent. They may give you some supplies. I did this, and they gave me a lot of supplies for free.


You need to request a change in your prescription from who wrote it for you at the first place to increase the number of appliances you can get per month. They need to write a letter of necessity to the insurance. If they are not willing to increase it, then you could see a dermatologist and get them to write a letter to the nurses/drs who can increase your prescription, in order to pressure them into writing a letter of necessity to the insurance. They would not dispute a dermatologist’s diagnosis.

I read on one of the forums here on j-pouch.org that ilex paste works for stopping the burning, and can be used under the wafer. I ordered it, but it is not delivered yet. I will update you as soon as I find out. It is available on CVS.

 I found that cutting the wafer with almost no gap around the stoma (against nurses advice to leave a gap) works better for me. If I leave a 1/8 gap as advised, the effluent gets to the 1/8 gap, and it immediately starts burning. I put the ring over the wafer, perfectly aligned with the cut. Since the cut is almost the same shape as the stoma, the ring also sits right around the stoma. I tired a million things since surgery, and this works the best for me. Cutting a hole exactly the same shape as the stoma is not easy, but does worth the effort for me. I hope this helps.

Sorry. I just saw your question about the paste. I used the eakin paste, just like you said, only underneath. However, it did not last longer than the ring. I have combined it with the ring too, but it did not increase the use time either. A few times, it was more successful than the ring in terms of sticking, but failed in much shorter time. Difficult to remove too.

 

What worked best was thickening the output with Imodium and metamucil. However, I made a mistake and took too much Metamucil, which clogged things for half a day, and it was uncomfortable, as I am still post-op with a lot of inflammation and swelling. So go easy with the Metamucil/Imodium. Don’t forget the belt too! I hate the belt now, but it works.

 

 

Yes thank you I'm using the belt. The Imodium has had me hospitalized 4 times in 2002 when I originally received my pouch with blockage and the horrible NG tube. I cannot touch the stuff. It also works on the central nervous system rather than the tissue and it makes me shake. They started giving me 1 Tylenol with codeine per day at that point and it works well, but not in this case. 

Hi Elif, I've been able to get this to seal with the barrier paste and as you say cut the hole exactly the size of the stoma, but only 36 hours at the most. After that it leaks. I've visited my surgeon and she was shocked, immediately had me sign consent for surgery to do a revision, the stoma has recessed so badly. In the mean time I'm going to order the Coloplast Sensura Mio convex. I have to make it three weeks before the revision. Thank you so much. Brian

I am glad I could help. Sensura mio has deep and light convex. Light convex works for me, but maybe you may need deep if it is recessed a lot. Good luck.

Get yourself some ConvaTec mouldable flanges from their Esteem Synergy two piece appliance range and also stoma collars.

I had tremendous success by applying the ilex paste to the festering and oozing skin around my stoma, then I applied a stoma collar over the stoma and on top of the ilex paste, followed by the ConvaTec mouldable flange, which I affixes a non-vented self adhesive bag ( the vented bags stained my clothing).

I could easy wear this combination for at least 5 or 6 days, even after bathing, although I did tend to change every 3 to 4 days.

Within 2 to 3 days of applying the ilex paste around my stoma and applying the flange & collar as described, the skin around my stoma was completely healed; I continue to apply the ilex, collar and flange as a precaution until takedown.

The filler paste didn’t work for me, did more harm than good; apparently, it contains alcohol and it stung when applied to my inflamed skin.

Although I never used them myself, I acquired some half moon shaped self adhesive strips, made from a similar substance to that of the ConvaTec Mouldable flanges, which are designed to fill low spots around the stoma. 

 

Thank you Strange, I think I have everything on the way via Ups, US mail, etc except the Ilex paste and I will be right on that. Just going to a softer barrier collar with the moldable convex flange was a big help. But ooh yes that paste does burn. Brian

I would contact all the different companies that make the supplies and ask for samples.  They are great at sending samples and they may be able to help you with the issue.  Just a thought. I haven’t had a bag since 2012.  So I don’t remember the companies.  Good Luck.   

Thank you, yes at the advice of my Home health care nurse I've contacted one at a time. Something about them bombing a person with relentless calls. To date they have been very helpful. I'm waiting now for a package from Coloplast and in it should be several convex 2 piece barrier and ostomy bag. However my great hope is a revision surgery that my Surgeon has agreed to do. This is in my humble opinion the heart of the problem.

Blessings

Brian

I'm having flashbacks to my loop ileostomy. It was difficult, with part of it retracted.
For me at least, it got way better by around week 3 as some subtle swelling in my belly went down. 
I managed it with a thick barrier-ring and some barrier-paste. I would cut the hole a tad bit larger than I would have otherwise cut, and managed the skin with skin-protectant wipes. It was a pain, though.

Thank you, so far these convex barrier rings with paste have gotten me between 36 and, a today first 48 hours. But the skin prep along with the powder restores the skin, and that's HUGE

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