I had a peristomal hernia/prolapse repaired with mesh mid-January. My stoma is now firm and shaped like a cone, retracted approximately 3/8" below my skin level. I am 6'1" and weigh 260 lbs. I have a modest belly. I have tried every wafer on the market, and none fit. The convex wafers all have a flat bottom. The flat bottom does not follow the contour of my stoma. If I cut the wafer to fit the edge of the stoma, stool accumulates under the edge and makes its way behind the wafer quickly. I can only get a day or two out of the wafer. As expected, my peristomal skin is macerated, itchy, painful, and bleeds. I am in hell! I don't have the patience to crust. Nothing sticks to the conical shape of my stoma because it is covered with mucosa. Has anyone had their stoma updated at the skin level? Is this a major procedure? I think my surgeon overcompensated for my prolapse by stitching down my stoma too far below the skin. I am miserable.
I have not had revision done yet, but I've been considering it. I was told this was a very minor surgery.
MeetAnOstoMate is a remarkable community of 41,451 members.
“I found real people, real humor, and answers I couldn’t get anywhere else.”
“The support here impressed my husband’s medical team - they plan to recommend it.”
“This community saved me when I thought I was a freak. Now I’m thriving.”
“Thank god for this site - I finally knew what to ask my surgeon.”
Hi All, If you have an " old" or recent ostomy, this is the place for you. I think I've been a member for more than 15 years, but I have had my surgery, since I was a kid of 15 ( do the math-that's more than 60 years ago). As a teen, with a new ostomy ( for Ulcerative colitis) my parents dragged me off to my first ostomy association meeting. I wasn't happy, but in the long run, it's the best thing that happened to me. I met others, older, and teens like me, adjusting to the changes. A group of us started a Young adult group, and helped each other, and even visited kids who were new to the world of ostomies. But soon I married, and moved out of state, and although made some connections with other NJ ostomates, I became pretty much isolated. Until I discovered MaO. By then, I was having a myriad of other medical issues, and my aging stoma " wasn't doing well". I received a lot of help and support from members! I was pleased that I was also back to supporting others. I met a gal on line (from Papua New Guinea) who was trying to help ostomates in her country. There is a scarcity of supplies in some other countries, and unlike the US, insurance to pay for supplies isn't available. When my son followed his "love" twenty years ago, and moved to Australia I took advantage of an opportunity to help other ostomates. On one of my first visits to Oz, I brought a suitcase full of Ostomy supplies, handed them off to an Ostomy assoc. On the Gold Coast, who then had a friend take them to PNG. They were grateful for the help, and Janet and I still write.. This is the place to be, if you need help, and it also gives you the opportunity to provide help and support to others. Feel free to write, if you'd like to chat, about things ostomy, or life in general. Best REgards to all.. Marsha
Hey, so I have had 2 revisions and 4 relocations. I have had my fair share of retractions; I couldn't even wear a bag for 5 mins. To keep your skin protected, the best and only thing in this situation that I found worked was Calvion 3M Advanced Skin Protectant or Marathon. They are liquid skin protectants, and your bag will stick to it. But if you are that low and bag systems aren't working, you need a revision. A revision, they go into the same hole, and they pull the intestines out so you will have length. The pain isn't at all like when you had it first created. You will be sore and have some pain, but it's not at all the same. I will say, though, if you can get a day to 2 days without leaking with a retracted stoma, that is good. Some of us have to change every other day. Some can go 2 days; some can go 4; we are all different.
Learn about the physical and emotional benefits of using ostomy accessories.
Hi B
You don't mention moldable seals between your skin and the appliance?
The liquid skin protector, as Beth says, is usually a winner too.
My Ostomy Journey: April | Hollister
You should have a word with your doctor.
Best practice: A stoma should be 3/4 of an inch above the skin line.
Stomas are always on the move due to peristalsis. My colostomy stoma can stick out almost 2 inches, then minutes later shrink to 3/4 of an inch long.
If a stoma is too low or below skin level, there is nothing but constant trouble. Better too long than too short.
If possible, you need revision surgery to pull out your stoma. Hopefully, your repair mesh will accommodate this.
I consulted with my most excellent gastroenterologist and general surgeon about possibly repairing my parastomal hernia.
Result: The general surgeon would repair the hernia. The gastroenterologist would work on the stoma, each surgeon performing their specialty.
But they warned me. Hernia repair is not always successful, and there's the possibility it might get worse after surgery.
They recommended I wear a hernia support belt all the time instead of surgical repair. So that's what I do now. So far, it's working well.