Advice for Leaking Retracted Stoma?

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Sunshineeyes

I would like to hear from anyone that has a retracted stoma (an innie). Actually, mine is below the skin level. My surgery was 4 weeks ago. I have leaked every day. I need advice. Does anyone have or had this issue?

Bill

Hello Sunshineeyes.  You raise a very good subject, which has not been aired on here for some time. I hope you get lots of replies. However, just in case this doesn't happen,  I went trawling through 'Premium Content' on your behalf under the heading' Ostomy complications, There was a past post on this subject with a few replies which you might like to peruse.   POst by northeyalan
United Kingdom
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Posted: Sat Apr 26, 2014 7:20 am

I hope this is helpful

Best wishes

Bill

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Past Member

I'm an innie like you. In time, my stoma will get bigger and stick out more with more years to come. I have gotten more outie and bigger. Now, after five years, I'm getting back to normal, so to say. Hope this helps.

sassie

Mine is a little bit raised, like less than 1/4 inch above the skin, and yes, it can really cause leaks. But yesterday, I was told there is a hernia under it, so another surgery is needed. But I used an ostomy belt all night and today, what a difference! "Alice" sticks out a lot more with a belt on.

Sunshineeyes

Sassy, can you give me more information about the belt? What does it do? I really appreciate you responding so quickly. This is all new to me, I'm still learning.

 
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Sunshineeyes

Thank you, Bill. I will check this out.

vdahl

Hi Sunshine,

I had my second surgery on June 11th. Along with removing the colon, they were hoping to raise my stoma. (The stoma was revised from a "loop" to "end" ileostomy.) They put a flat flange on me out of surgery, which I continued at home... like you, lots of leaks. Now I'm using a convex appliance, not only no leaks, but the skin around the stoma is looking great!

Best of luck, Vicki

CharK63

I had an "inverted" stoma. Even had corrective surgery, just on the stoma, and it didn't help.

The surgery made my stoma size a 19 but by the next measurement, it was down to 9. Smaller than before. That's because being oval-shaped, the sides were always moist so my body constantly tried to "heal" it. Then I'd pass a stool and it stretched it some and caused a little bleeding sometimes.

Due to the spaces between the bag and skin, I more often than not had pancaking. No matter what, my skin was always in contact with something that created raw oozing skin. I sometimes had to change bags 3 times a day. I'm allergic to adhesives so I was always irritated and bags always leaked.

I tried rings but I ended up tearing them into pieces to use to make a flat surface. I tried a ring that was shaped like an eye but that didn't help. I tried to stretch it but it returned to its original shape. I got some strips shaped like a "c" that affixed to the outside and it helped sometimes. I got an adhesive 4x4 pad that I had to cut a hole in the middle shaped like my stoma and affix it to my skin but that leaked too.

I ended up getting reversed a lot sooner than I expected. By then, I was crystallizing the stoma powder (repeated applications of powder and skin barrier (I bought the spray kind)) to try to protect the skin.

In hindsight and since I still have problems with getting backed up, I won't be surprised if I have another ostomy. I was going to learn about irrigating. I'm told you control the timing of your movements so you're prepared when it happens. I don't know the particulars about it at this time. I'm not looking forward to it, but I just can't seem to get regulated and I still have painful explosive diarrhea. The preventive stool softeners and Miralax make me too loose. I'm trying manuka honey and aloe vera drink right now. If that doesn't work, next I'm going to get probiotics. Anything I can find to regulate my stomach. I feel like I live in the bathroom and too many conversations are focused on poop in my opinion. I'm 60 lbs overweight, maybe I'll quit eating for a long while. Who knows?

I also used a belt; the hooks are already on most ostomy bags. It pulls the bags tighter to your stomach; it was a great find.

Good luck, Charlotte

Immarsh

Hi Sunshineyes and all who are dealing with "innies". I'm Marsha, and I have had my ileostomy for over 50 years, since I was 15. It was as "perfect" as a stoma could be, although the supplies were antiquated versions of what is available today. It took awhile to learn to manage my ostomy, until I received a "permanent" appliance. Through the years, I had no trouble with baths or showers, had two children, gained some weight, and then a lot more weight. My stoma managed, but my very stretched out skin (from 4 years of steroids when I was sick) didn't do so well. The texture changed, and my stoma began to pull in. At this point, it's almost flush with the skin, and my belly under the stoma formed a pocket. I also have a huge abdominal hernia that parallels my original breast bone to pelvic scar, distorting my stomach even more. I use to get a week's use of my wafer and pouch, but leaks are now happening much more often. I use Convatec's convex, moldable wafers, / 2-piece system, which really do a great job of fitting to my distorted belly. I use Eakin seals (sometimes good, sometimes not) to mold into the depressions under my stoma. When the wafer is "on," I spray stoma adhesive powder into any gaps that form between the skin and wafer, hoping to seal the gap. And then I put on the pouch. I'm now 70, but still like to get out and about, drive, travel, visit friends, go out for dinners, have sex, swim... and live each day with confidence. Not so easy anymore. I never did carry supplies with me, but now that's what I have to do. Such is life. I'm grateful for the good days, and "bitch and moan" and change when I have to. Have to take the good with the bad, but I keep looking, reading, and experimenting with ways to improve my condition. I'm not a good candidate for a revision, due to other medical issues, so I do the best I can. Best of luck to you...

Immarsh

Ps......Try the belt Sassy suggested. Every wafer has a "hook" on each side of it, with a belt that fits that wafer. I used the belt for years (much like the old sanitary napkin belts) because the heavy plastic permanent wafer I used in the old days got very heavy when filled up, and could pull the wafer pouch off my skin. When the new lightweight disposable wafer and pouches came along, I found that I didn't need the belt anymore. It would sometimes slip off my hip and pull up to my "waist" which I no longer have, and dislodge the wafer, pulling it up and off. I switched to taping all four sides of the wafer instead of using the belt... It's worked for more than 20+ years....Try different things and see what works for you.

Best regards, Marsha

CharK63

Hi Marsha, it's Charlotte,

Sorry to hear it's getting a little rough on you but great attitude.

I'm going for a second hernia repair and still have a lot of pain. I think "normal" is out of reach but I'm doing okay without the "bag."

My Mom was in the hospital for 6 days for constipation! We are now housebound because she lost a lot of strength. She got a POOP calendar for her birthday!! Isn't that just too much!? It has poop stickers so we don't lose track again.

She was in bed for ten days before they admitted her so she hadn't gone for more than 3 weeks! Pretty harsh on a 92 yo.

They gave her constulose to get her going. Hadn't heard of it but now I'm a fan! Don't use it often but I keep myself going too.

Charlotte

Sorry Sunshine,

Didn't mean to get going there. Hope some of this advice helped.

Charlotte

SMW1972

Hi Sunshineeyes.

It's been five weeks for me and I usually have to change my bag a minimum of once a day and often twice a day due to leakages and my stoma being very uncooperative with healing. It's been a challenge for sure. Lots of times I seem to get a pancake effect which puts so much pressure on the bag and often leads it to being pulled off. I think I will ask about a belt like some have suggested here, thanks! Perhaps I won't leak as much? Or even just feeling more secure with it nicely secured away.

Past Member

My stoma (Jake) sometimes tends to retract after I change the wafer. I have gotten used to its unpredictable behavior. It seems to retract when it's volcanic....lol

Past Member

I also remember the band Chilliwack, from the early 80's.

Rozanskyism

Hi there, while I don't have an innie, after my jpouch surgery, I went from having an outtie that was very easy to fit to a concave stoma area with a stoma that only rose slightly above my skin level. This was a huge change for me. I have been struggling for some time since the surgery. Lately, I have been using paste with the ring to help my bag stick. As a result, I've had far fewer leaks. Since I have been doing this, I have had fewer leaks. Before this, I used to change my bag on an average of five times.

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